Does there tend to be a gender imbalance in terms of the caregiver role? My lived experience is that it is almost always the wife or daughter who Carries the load - the stress, the life capture and the sacrifice of career and financial security. Sometimes the wish to die at home demands a personal sacrifice that would not be returned were the shoe on the other foot.
208
If anyone has actually been in a hospital — I have on multiple occasions — they will understand why that is the last place anyone would want to end their life. In institutional surroundings, at the whim of strangers, surrounded by lights and sounds at night, given airport food, why would anyone want to have *that* be their last glimpse of the world? The professionalization of birth, death, and burial is not for the good of the individual, it is a corporate scam. People have always been born, have always died and been buried by their families. The trouble is that the medical system keeps dying people alive for so long that they *become* difficult to care for. If we'd just let people die when it becomes clear they are not going to survive their illness, which in many cases is just plain old age, deathcare would not even be a thing.
84
This is inexcusable. Older patients, especially ones that nothing can be done for, are often shunted off and dismissed. While we as taxpayers and they may not want expensive and ineffective care delivered very late in life, dignity, pain management, basic care, and compassion are all deserved of these human beings who have given so much in their lives in so many ways whether it be personally or professionally. Meanwhile, other older people quietly descend in to worse health left alone or with family unable to provide professional care. We need to address this demographic crisis with far more resources devoted to the home. While it may not be wise to spend tons on end of life care and drastic means, we should all agree that spending at least some money on more professional home care for the elderly is an entirely worthwhile endeavor. All of us, each one, may need such care. It's time to commit to such a devotion in this nation. Every soul deserves it.
29
my mother provided for my father and in turn, I now provide for her.
Exhausting doesn't even begin to describe this accurately.
It's absolutely debilitating, psychologically and physically.
It drains you of everything.
58
Do these stats account for people who die accidentally and/or via suicide or overdose?
4
My husband, my mother, my father all died, where they wanted to be, at home. They had the benefit of hospice-at-home. A life-long friend, died at home with hospice. I was caregiver to all of them. In the case of my friend, I shared the care with her two daughters and two additional friends.
Those experiences were all positive -- though admittedly, not of long duration, which was frankly, a blessing for them and for their care teams. Hospice's beneficence with the focus on COMFORT, not only for the dying person, but also their loved ones, helps ensure more humane, dignified last days, weeks, whatever time is left.
We Americans are a death-denying, death-defying culture. It'd be a good idea to accept our mortality (no one is getting out of here alive!), get comfortable about "having the conversation" about end-of-life care choices, so we can implement changes to our dysfunctional "system" for EoL care options.
10,000 Baby Boomers turn 65 every day -- we'd better get crackin' on implementing changes!
38
Several friends sent me this article. I'm currently caring for my father at home, with hospice support. I thought I could do it myself. It's been a month now and after providing 24/7 care, and after he fell out of bed once and fell twice more, I realized I cannot do it all on my own.
A caregiver at night, so I can sleep, is $20-$25/hr or $1500/week. My father gets $2000/month from social security and he has no savings left after his years of retirement. Not only is the physical and emotional burden huge, the financial burden is enormous.
In order to use the End of Life Act, he has to decision making capacity, which he is losing rapidly, and that is not covered by hospice/MediCare. It'd be another several thousand to exercise that option, should he be deemed able to use it, which I don't think he would be now.
This is a caregiving nightmare. I can't leave my home without securing someone to watch my dad. Thankfully, my employer is allowing me to work from home during this time, but that isn't available to everyone. I'm exhausted at the end of the day, because there is no end to my day. I'm hoping he dies soon, as this is no way to live.
88
People choose to die at home opposed to a prison which is what a hospital becomes when you are dying I cannot think of a worse place to die not to even mention that it will bankrupt your survivors. So I think we will see a rise in suicide by the dying to avoid our rotten gov't coming in and taking all of our property to pay for Medicare when we die. Of course the Times will never cover that story.
15
It's really a great article based on truth. Keep on writing similar stories @Gina Kolata
14
The statistic could be good news, or it could be bad.
Good, if advance directives are being faithfully followed. Good, if a person can die in familiar surroundings under palliative circumstances.
Bad, if a terminally ill person in pain is made scapegoat for Purdue and its distributors shipping 20,000 pain pills per resident to one county in West Virginia. Bad, if it turns out that people are dying like Japanese Hikikomori (see: https://www.japanpolicyforum.jp/society/pt20190722170048.html )
We live in a rapaciously capitalist country with close to no antitrust law enforcement. Which do you think it will be? Good, or bad?
6
It hasn't been that long that hospitals were not the start-off and send-off locations that they have become. For instance, Jimmy Carter was the first US president born in a hospital. Hospice provides excellent end-of-life services, either at home or at their home-like facilities, and I assume at a fraction of the cost of a hospital or a nursing home.
My family is experiencing a related scenario and there are no easy answers. I have a parent in a nursing home who has a debilitating disease and doesn’t need want to be there. The trouble is, my other parent, who is 86, has become incapable of being a caregiver, after increasingly taking on those responsibilities for the last 10 years. Home health care, with CNAs coming twice a day for up to 6 hours for several years could not provide the level of medical and personal attention my parent required.
Returning home, then, would be a mistake. I don’t know how long my parent will be able to live in a nursing home, but if they remained home, it would accelerate major problems for two elderly people rather than one. It’s hard to observe what is happening — and this is with a great deal of involvement and advocacy. An institution is not a place where I would want to spend my final days, either. But, for many families, there is not a better choice.
24
One of my fears of dying a "controlled" death is that the caregiver makes some sort of blunder...forgets the morphine; remembers the morphine but gives the wrong dose...too much; not enough. Or I've had a stroke and cannot communicate what I am screaming inside my head. Or, most importantly, wanting to die and being prevented from doing so.
16
My oldest brother died of cancer at home with hospice visits, my mother (cancer also) in a skilled nursing facility with hospice visits, my middle brother died in hospital (cancer again) under palliative care. Every one of them knew they were actively dying and was frightened and uncomfortable. I relive their passings almost daily.
Hospice sounds good on paper but, though your beloved is dying ‘round the clock, visits are occasional. That gap is massive. In no case were there beds available in hospice facilities.
When cancer comes for me, which I believe is inevitable, I am hoping for a hospice facility...or a gun.
47
Say the truth:
Hospitals are money-&-profits-making vehicles.
You can't die in a hospital---no more revenue stream happens.
Hospice is the way to go, or home.
Dad died in the hospital, and was brought back despite DNR, despite "5-Living-Will-Wishes" documents, despite saying, "no extraordinary measures to be performed."
(No, I couldn't afford attorneys that all told me, "You should be happy!!! Can't get a jury to vote for someone to die!")
Dad's 29 months of back & forth into hospital to address latest failing physical conditions, pneumonia, arrhythmia, etc. led to the dissolution of my marriage, family members angry at each other, and thousands of dollars of medical expenses.
Mom's passing by way of Hospice care (didn't let Doctors, "we suggest several life-extending-procedures..." was far less time. Days, not weeks nor months of coping with one awful situation after another.
Hospitals are failing their community service.
21
Unless you are wealthy enough to afford 24 hr care, it is the height of selfishness to insist on spending the end of life at home. My poor husband is now trapped 24/7 at his mother's side, caring for her constant needs while she screams at him. Imagine a man having to clean his own mother's private parts as he changes her diapers. It's really a nightmare and she has no terminal illness so this could go on for years. All the kindnesses she did for us over the years do not balance this unbearable burden.
58
@Jomo
I only recommended your post because you graphically described only a small part of the trauma. People who haven’t been through this have no idea what it’s like.
As for selfishness, that’s a very personal and subjective conclusion, so I do not criticize.
On the other hand, the cost is astronomical whether you choose hospice, hospital or 24/7 in-home care. The only viable alternative is to do this yourself.
At least when you carry this burden on your own shoulders, one can avoid having a loved one being victimized and manipulated by an unscrupulous home health care worker, which happens more often than not.
That may seem a small consolation, but consider the potential calamity of being robbed or having a 24/7 nurse/health worker convince a sick loved one that they should change their Will, these things do happen.
13
I'm 82 and planning how I'll handle my suicide. It would be much less complicated -- much less frightening -- if I could just fill a prescription for a drug to do the trick and concentrate, instead, on where my cats will go and what to do with my possessions. Why can't those of us who don't want to suffer the indignity, filth, stink, pain, ugliness and fear have the right to die in peace?
71
This is also an excellent article & comments:
https://www.nytimes.com/2019/09/03/well/live/is-dying-at-home-overrated.html
2
Just curious - In the following scenario:
A person collapses at home. 911 is called and they bring the person to the ER where he is pronounced dead.
Does this count as dying at home or in the hospital?
3
The challenge is that hospitals and doctors cannot make enough money when the patients die at home. And even on terminally ill patients, they'll continue until every resource the patient has is exhausted and they go after the heirs and the estate and all that is left.
5
It sounds like one of the challenges of dying at home is dealing with pain. It seems crazy to me that we can't figure a way to address that issue at home using the medical system. People want to have a peaceful death, and not be in agonizing pain. They shouldn't have to be in a hospital to avoid that fate.
20
Recognizing that many people won’t see this comment, let me clarify why my husband’s pain went unrelieved in his final days. Dwight spent his last four days vomiting blood and bile. Hospice had provided us with a “comfort kit,” which included narcotic pain relievers, but these were oral medications and thus not effective in a person who was continuously vomiting. (Believe me, we tried.) What Dwight needed was morphine delivered either by IV or by subcutaneous injection. Hospice refused to do this in the home, instead offering a transfer to an inpatient facility some distance away. But Dwight, in addition to being paraplegic, was 6’8” tall—too big and too immobile to fit on an ambulance gurney without being injured, and in need of a highly specialized pressure-relieving bed as soon as he got to the hospital. We knew the hospital would not have such a bed waiting for him (whereas at home he was already in one—he’d lived the past four years in it) and even if they had, he would already have been both traumatized and injured by the ambulance ride. So we refused the offer of a transfer to the hospital. Let me make clear: this decision to decline a transfer to the hospital was not the expression of a “mere” preference. It was a refusal of medically inappropriate treatment that would have harmed the patient. But the position of hospice was, we do not administer IV narcotics in the home, period. So that was that.
54
@Margaret Peterson, I am so sorry you went through what you did. I am a bit shocked that the hospice would not administer IV Narcotics in the home. My mother (she died of colon cancer) did not have an IV, but the hospice did supply her with "patches" that were put on her arm to administer pain medication. We were told the patches contained some sort of morphine-like narcotic. My father, who was not in hospice care due to the hospice waiting for his health insurance to be approved, was supplied with a morphine drip because, like your husband, at a certain point he could not swallow pills or liquid medications. Patients who are near end-of-life or actively dying can't swallow anymore so all medications are then given through drip, IV or injection. I don't understand why your hospice did what it did - maybe they feared that someone would steal the medication - but at the very least they should have sent someone over to administer the medication. To allow your husband to die the way he did is inexcusable. Please accept my heartfelt condolences for your loss.
53
@Morningstar Thank you for your kind reply.
21
This article is not the full story. Hospice shifts
the focus of care from cure to comfort, stopping painful interventions and disruptive hospitalizations. Hospice provides the family with tools to assure the patient is comfortable, and hospice is available by phone 24-7 to address issues. Every 3 months, Medicare pays for 5 days of nursing home care to provide respite to the family of caregivers. When I had business trips, the cost of a temporary nursing home stay was less than $250 a night — cheaper than many hotels. Hospice staff provides palliative care to the patient, but also emotional support to the family. Both of my parents died in my home, 5 years apart, in hospice. It was not easy choice for any of us, but it was the right one, and the kindest available to us.
My biggest concern has more to do with what is required cognitively to care for the dying. Not everyone in this country is “above average.” But we all have babies and some Americans struggle with complex diseases like type 1 diabetes or cystic fibrosis, so this is no different.
4
As a Certified Hospice and Palliative nurse, currently working for a Hospice agency, I can attest to the fact that home care can be a daunting responsibility for family caregivers. But our agency provides 24/7 accessibility to nursing care, with our own physicians on call to provide orders for changes in medication dosages and frequencies to enhance patient comfort. When symptoms cannot be managed effectively at home, there is an option to transfer the patient into our inpatient unit for acute symptom management. The same unit is also available for respite care when families become overwhelmed. It is not unusual for those of us who work on the on call team to go out to the same patient's home to assist multiple times in a week, or even a 24 hour period. Not all states have the same regulations -- in NY all Hospices are not for profit and there is only one allowed per county. They are (or should be) staffed accordingly. While some may feel this limits choice, it prevents people who are in it for the reimbursement from setting up hospices on every street corner, which is the case in some states. Most people do prefer to die at home. Is every death peaceful? No. But we strive to provide every avenue possible to maintain the patient's dignity and comfort, and support the family in the process.
10
My spouse of 25 years died with pancreatic cancer at home. It was her wish to be at home and I respected and fulfilled it. I am fortunate to be part of a large family, with many in the medical profession. They and friends carried a big part of the load.
Yes it was grueling and terribly heart-wrenching to watch a loved one wither away, but despite the sheer exhaustion both mental, physical and emotional; I'm glad I could give her that final wish!
I told my children, put me in a facility when I reach that point, just come and visit. Having lived through it, I couldn't burden anyone with the experience!
196
I took care of my Mom at home until she passed at 91
She moved with me when she could no longer live by herself because of dementia. At first she didn't understand where she was and tried to escape. As her dementia progressed she became calmer so I was able to enroll her in adult day care. She came home pleasantly tired. One of my most fond memories was her announcing she was getting married again. I asked what his name was, she said she didn't know. But as the dementia progressed she was no longer able to attend so she was home full time and bedridden.
I was able to put together a patchwork of services so I could continue working to support us. I found a doctor that made house calls. She could breathe on her own but we sometimes battled bedsores. She was tiny enough to lift so I bought a recliner to get her out of the bed for part of the day. Every weekday morning I'd bathe and change her, administer meds, hug and kiss her. She couldn't talk but she smiled. As I headed off to work, the caregivers arrived. They'd feed her the meals I cooked on the weekend and put thru a blender. She could swallow but not chew. On weekends it was just me. Every few months I'd pay one of her caregivers extra to stay with her on a Sat with her so I could take a long train ride.
While caring for her I was laid off several times but able to find other employment.
From start to finish it was about 3 yrs. She passed peacefully at home. I never regretted caring for her.
137
What a moving portrayal of human devotion.
51
@Ann If I had a daughter like you I would be so proud. If I get a diagnosis of dementia I would go for a second opinion. Then maybe a third. If confirmed, I would get the pills from my friend who has helped others. If resisted, I would find a tall hotel and late at night, when the sidewalks are empty, I would fly.
34
The palliative care expert quoted in this story, Dr. Diane Meier, has been on the forefront of this issue for years now. She happens to be a family acquaintance, and when my father was dying of stage 4 lung cancer in a hospital bed in our living room in 2001, she explained to my mother and I, step by step, what would happen to my father in his final month of life — how exactly he would die: the slow breathing, the bowel release, the death rattle. Even though we had Visiting Nurse Service 24/7, she stressed that it would take a toll on us, my mother particularly, and if we couldn't handle it we could transfer to him to a hospital at any time.
Dr. Meier's breakdown of the way we die — step by step, how we let go of life, each physical process — was instrumental in understanding how to care for my father. In the end, we were there for him when he went, and I am forever in her debt.
19
In the past three years I have helped care for two friends in their final weeks of life, at their homes. I am very fortunate to live in a community with a group of incredible women who team up to help the spouses/partners of dying patients. The principal caregivers experienced unrelenting stress during the several years-long process of decline that preceded the crisis period leading to death. Both had occasional nursing and hospice aid, but the scope
of each was very limited by insurance requirements. One death was ultimately peaceful. The other was anything but. While the concept of dying at home may sound very enticing, it can be horribly stressful on the caregivers and the dying. I wish that this country allowed inhouse hospice care as the norm, not the rare exception. But all of this having been said, death is a given for all of us, and I doubt that it is ever easy.
71
As someone who will be providing and coordinating care for my elderly mother in the near future, this is pretty scary. She has not made any provisions, decisions or plans. I believe that she has a romantic and unrealistic projection of s short and painless decline.
I am in a profession where many jobs involve travel. I would like to change jobs but my prospects are few if I need to be on calm for her. I still have kids at home. Yikes.
68
I hope you can get help to have a very candid conversation with your mother, maybe via a doctor or religious adviser, about upcoming needs. Elderly parents can also have very unrealistic ideas of what their adult children can and should do for them, especially daughters. They rarely include consideration of the equally compelling needs of the grandchildren and the job that pays the bills. I also suggest you start now to see if there are geriatric care managers in your area. They can help.
52
@Cousy My mom died on 3 November from kidney failure and a stroke. Five years earlier when she was still cognitive and able to make decisions, we had a frank talk about her wishes when the end came. We saw a lawyer and drafted an ADR that named me as her health care power of attorney. Like your mom, mine believed that she would simply expire in her sleep at home and "wouldn't be a burden to anyone". She didn't include a stroke in her plans. Fortunately I had the ADR that spelled out what she didn't want done, thus allowing me to move her into hospice, where she died peacefully. Please have the ADR talk with your mom now and arm yourself for the future.
22
Yes, it is exhausting. We had a 24/7 home health aide for my father, plus a visiting nurse twice a week. We were lucky - we could afford it. It is also exhausting - and disruptive and distressful - to make repeated hospital/hospice visits. At least with my father at home, my mother could be with him and be in a comfortable environment. My gripe is that even 24/7 care was less expensive than hospitalization or hospice, but the feds won't pay any of it. Had my father lingered more than the eight months from the time he needed that level of care, it would have been a big financial strain.
159
@WastingTime Yes you were lucky. Even with resources I could not find anyone to provide the one day of respite care I so desperately needed near the end of my husband’s life. It is very expensive and not always available everywhere due to lack of trained staff in more rural communities. Hospice was helpful but they too are short staffed and don’t always provide the services you really need. It truly can ‘take a village’ at the end.
41
Maybe it's time to take assisted suicide seriously and decriminalize it. Our pets get better end of life care. At least with assisted suicide you can have some control over how your life ends. Like everything else in this country, the level and quality of care you receive is equal to the size of your bank account and most of us can't afford 24/7 care. I would rather not contribute my entire life's savings to the medical-industrial complex while simultaneously draining my children's financial and emotional resources.
28
I have witnessed screaming, violent, agonizing deaths both at hospice and in the hospital. Death is often ugly, not peaceful. If you are prepared for that scenario, then you can make better decisions about what kind of care is best for you as the caregiver and for the patient. If it then turns out to be a peaceful passing, you are blessed and fortunate.
11
The brutal truth is that until you have personally experienced the responsibilities of caregiver to someone dying at home, you have no idea of the challenges you will face - physically and emotionally. Even home care hospice is not sufficient to care for your loved one - they typically come once a day in rural areas, or as others have written, twice a week. Even if you, yourself, are ill /exhausted/frail/despairing - none of that matters. You are still responsible. Even if you are over 80 years old and weigh less than 100 pounds and your dying husband still weighs over 150 pounds, you are responsible. How will you:
1) Administer his pain meds by dropper into his mouth 24 hours a day on schedule? Otherwise, he will suffer...
2) Roll his still heavy frame onto one side, change his diaper and clean his soiled body? Otherwise he will lay in his own waste and suffer...
3) Not break down? Even though you suffer.
You, and a few family members/volunteers, will be on call 24/7 to meet EVERY need of the dying. This is not a movie, it's not Hollywood, and there is no guarantee of a peaceful death, even on morphine. My mother and I provided 24/7 care in home hospice for my dying father. It was the most excruciating experience...not for the faint of heart or the physically frail.
My mother's health has been in chronic decline since his death two years ago. And some day, far too soon, I will have to rise to the challenge again and serve as her "angel of death."
22
It appears that we have no idea where people die. A Stanford Medical School study on Palliative Care, published this year reports that 60%of Americans die in acute care hospitals, twice the number reported here.
https://palliative.stanford.edu/home-hospice-home-care-of-the-dying-patient/where-do-americans-die/
5
Can patients still die in a hospice facility? I assumed they would have a doctor on staff and access to potent painkillers? That would be my preference.
2
@Mary Rivkatot
Most times YOUR doctor is not in the hospital or on call, nor is a doctor from the specific medical practice. Maybe a doctor from your group practice can be contacted by phone and relay to the nursing staff a medication.
@Mary Rivkatot Medicare does not pay for full time inpatient hospice. Inpatient hospice is for stabilizing patients in hospice who have an acute condition: infection, uncontrolled diabetes, etc. Anyone who can afford it, however, is welcome to pay their own way inpatient.
2
@Mary Rivkatot yes there are hospice programs that have facilities and don’t use homes at all. Not much different than a hospital. Under the best of conditions it is a blessing but most times that is the exception not the rule. The situation changes hour to hour and case to case depending on the disease process that is driving the decline. You can’t say watch for this then this because it doesn’t work that way. Nurse 20 years 7+ Years hospice On the weekend night shift.
3
Why didn't Mr. Petersen have medication for pain? Who made that decision. A morphine drip is not a technological impossibility and a relative can learn how to do it in about 5 minutes.
1
@Suzanne Wheat no a morphine drip does not get set up in five minutes and the government is cracking down on excessive narcotics so that won’t happen. But it’s the unrealistic expectations that people have that make things harder. Half our job is getting all the family on the same page so that what’s best for the patient can get done.
4
@Eric D. It's sad that a dying person is now considered a future drug addict. I'm really scared of that as I don't look forward to dying in pain.
8
It is predictable that "experts" prefer that people die in "for profit" institutions.
2
Could it be that we are choosing to die at home rather than go bankrupt paying for our healthcare ?
12
The solution is quite simple, really: Legalize physician-assisted dying — I refuse to call it “physician-assisted suicide” — so each one of can choose when and how our own life will end. It is my life, my body ... and I should have the right to end it at a time and in a manner of my choosing, with the assistance of trained professionals. If you think it’s only the choice of some supernatural being, fine. But do not inflict upon me or the rest of society the pain and suffering that comes with that belief.
21
Like so many other issues that America is of course, on the wrong side of, assisted suicide should be an option we all can at least consider.
We pretend we are free people, actually when it comes to the most important and spiritual of decisions, the government is there to tell us what to do
15
When it comes my turn to shuffle off this mortal coil, I would like to have the same opportunity afforded to our pets, the chance to end my life on my terms before life loses all quality. But, with the outsize influence of the Catholic Church in New York State, that doesn't seem likely. Shame that I will likely need to spend every last dime I have and die a long, lingering and painful death because religion has a stranglehold on our politics. Regardless, I will make sure to plan for that eventuality ahead of time so I can take care of business my own self when the time comes.
14
C’mon
My father wanted to die at home vs a hospital
And my mother does too
These “experts” give value to extra weeks of life in the hospital vs a quicker and more humane death at home
Hospitals are depressing and I’ll prepared for dying people
We are just catching up to that
2
I'll die at home and spare my family the gross debts of "medical care." I've been a patient in too many hospitals where resentment towards one's presence is made very clear.
7
Here's a radical thought. Give them some dignity and peace and let them pass on!
8
I was the caregiver for my mother as she died at home. When she signed up for hospice it was with the expectation that it would be in patient, at a very nice facility she was familiar with. Then the hospice developed a plan that had me as her caregiver with other people filling in when they could because I was still working full time and using FMLA when I could.
I still wonder if I made mistakes and have nightmares about it. I was not prepared or educated by the hospice professionals. My mother in law passed away at an in patient hospice facility and it was quite a contrast. The staff knew how to care for her and the family members could focus on saying goodbye.
Insist on in patient if you possibly can.
15
My father died at home, with the assistance of Hospice. They provided the "comfort care" kit, which at the end I called the three angels of mercy, morphine, lorazepan, promethaizine. The nurse was a resource of what to expect and medications. For the most part the family is on its own, hospice didn't do the actual care. There is nothing wrong with that. It completed the circle. My father cared for me as an infant and I cared for him as he died.
My father believed death is a natural process of life. He wanted the Death With Dignity, but the cancer had disrupted his brain to the point where he failed the cognitive test. Hospice had the medications he needed and I promised to take care of him and not let him suffer.
When the pain broke through with a ferociousness that left him crawling on the floor begging for help, I knocked him unconscious with the three angels of mercy. He stayed heavily sedated until his body shut down and died. I'm proud that I had the strength to help him die without days of agony.
In a hospital each change in medication would have required a Dr.s permission and an RN to administer it. There would have been gaps of agony. I had the freedom to adjust as needed.
We don't need more hospital care, we need a change of perception. This is something families can provide with the angels of mercy.
21
As a long time hospice nurse I want to say that the vast majority of this article is very true and I am so grateful that it is being talked about. I could write volumes about the tragedies and horrific sadness that so many family members face as they do their best to care for very ill loved ones in their home. Most contain varying amounts of emotional, physical and financial drain.
However, I want people to know that if a patient is on hospice and dies, in excruciating pain, his hospice care was incompetent beyond the pale. The very first concern by every competent hospice nurse is patient comfort. We have, and are prepared to utilize, an abundance of tools to make sure that pain is well controlled at all stages of illness. There is no reason whatsoever for a hospice patient to die in discomfort.
Unfortunately, hospice can provide very little in the way of day to day patient care, but a R.N. is on call 24/7 to intervene if necessary. Hospice M.D.s are on call 24/7 to prescribe immediate changes to take care of any pain issues.
I feel badly that Mr. Peterson was in pain as he was dying. If he was on hospice care at that time, I also feel so badly that his hospice allowed him and his wife to suffer so.
22
@RBS
I share your pain.
I’m about to undergo my second spinal reconstruction, the result of too much lifting and carrying over the course of 10 long years.
Would I do it again?
Most likely. That’s what I signed on for when we married.
1
My husband was diagnosed with COPD and CHF three years ago. He has had two blood disorders since then. We monitor his BP daily as well as his oxygen level. He was in the hospital 37 days last winter. He has a pacemaker and internal defibrillator. We, along with his numerous doctors, have decided to keep him home for as long as we can. I don’t know what the future holds, but having had a mother, mother-in-law, aunt and grandmother die in a nursing home has convinced us to do everything possible to remain in our home. We have advanced directives and have discussed quality of life for both of us. Difficult decisions, and we keep re-evaluating with every medical crisis.
1
My mother died at home with 24 hour care provided by hospice, while in the hospital she said to the nurses I'm never leaving I'm I, they said no she then turned to us her children and she said she wanted to go home. That day the doctor did a prescription for hospice, she was provided a hospital bed and everything she needed moved home by ambulance and provided 24 hour nursing. She did at home surrounded by family 3 weeks later.
4
My brother died in his bed, in his home, this last July, with my husband and me by his side. It was an excruciating 48 hours leading to his death from metastasized laryngeal cancer. He was in pain and confused and refusing to take his pain meds. Hospice came out and the nurse convinced him to take them, and that helped. Nevertheless, I was at my wit's end and was ready to have him transported to the hospice center, but my husband appealed to my better sense and reminded me we promised him he could die at home. At the end, it was just the three of us; I had sent his teenage son to spend the night at a friend's. It was very peaceful, as he slipped away. A pair of hawks came by and cried out. Minutes later, he was gone; taken, I think by our late mother and brother. My mom also died (of cancer) at home and it was not a "good death." I have made my wishes clear: I do NOT want to die at home and put my family through this experience. Send me to a hospice or hospital. The pain of literally seeing someone die is not something I would wish on anyone, especially my loved ones.
17
My wife died 4 years ago in hospice care. She did end up dying in the hospital after another serious infection from bedsores and UTIs finally took her life after years of living with MS.
I can't say enough about Hospice care. It is the most compassionate and cost effect means of caring for those who are dying. Yes, there is still a care gap if one has to hire a nurse aide to be in the house. There are many hospice care wards or hospitals which can help with that burden.
The saddest thing I have seen is that people wait too long to enroll in hospice care when a loved one is dying. They should be called in ASAP, not only for the patient but the family. The goal is peace and paint management.
19
An excellent and heart rending article to be sure.
But, a relevant question is: How much do we, or can we, spend on dying?
for most of human history, dying was fairly quick and low effort on the tribe or family.
Antibiotics did not prolong infections that would kill ultimately anyway.
etc.
So, now that we can pay lots of money to extend death on and on, should we?
12
In 2017 my mother died in her assisted living facility after about a week of hospice care. She had been in the hospital three weeks prior to that and believe me, she did not get better care in the hospital. The hospice developed a plan for care and medication. Initially I was concerned about overmedicating her but since she had had a stroke, she could not communicate or get up and go to the bathroom. It was a kind and effective strategy. The element that does not appear to be discussed adequately is the expense. Hospitals send patients home because there’s nothing more they can do for them and they are clearing out beds for other patients. We had the financial resources to hire round-the-clock care for my mother but everyone does not have that. As the boomers are aging and will be the next “dying “generation, healthcare must be reformed to include at least partial assistance for families. Most of these letters detail someone trying to care for a family member under great duress to themselves and less than adequate care for the sick individual. People are dying at home because there is no other tenable option.
12
A good, albeit small, window into the world of dying patients. From a physicians view, the four year discordance between diagnosis—prognosis at discharge and the patients actual survival seems quite long, this likely added to the many issues here.
What stands out as missing in the article’s discussion is the significant need for family counseling on advance directives, long term care insurance, and role of hospice WELL BEFORE anyone gets sick.
8
Both of my elderly parents died at home, each suddenly from diagnosed illnesses they knew would at some point mean death. It was so sudden that other relatives in the home immediately found them. That stays with an adult child, but it's also a comfort to know they were not frightened, abused and alone. Both knew a loved one was one room away. That's how I want to go.
When I was a child, my mom got stuck as the sole caregiver among her siblings of their ill, elderly mother. It was unforgivable how selfishly her siblings blithely went about their lives with their families, while harming ours and ignoring their elderly mother. However, from that my mom was determined to stay as healthy as possible into old age and never force her own children to repeat that scenario.
I remember to this day her offhand but sincere comment that when she was too old to care for herself for us to please just not put her in a nursing home where the elderly sit in wheelchairs all day, neglected and drooling, staring into space. She was fortunate to greet death the way she wanted, where she wanted, not in any pain and not fearful. Not all those who die at home need 24/7 care or endure trauma. Sudden death and home hospice care are the only humane choices. The alternatives are worse for all but the for profit institutional hospitals and nursing home warehouses.
13
With one other person, I cared for a friend with no family who wanted to die at home. The two of us were there round the clock for about two weeks. While we both have medical training, we were unable to meet her needs fully in terms of pain control and other issues, and I can’t say that it was in any way a “good death.”
After that experience, I vowed to never burden anyone with an insistance that I die at home.
22
@Riley2 I have also shared in-home care for the dying, and will never ask anyone to do that for me. Americans have fantasies about hospice home care, but when the patient is screaming in pain or struggling for breath and swearing at you, hospice is a no-show. Palliative care in the form of pain relief is dreadfully inadequate, especially in these opioid paranoiac days. I do not have medical training and the procedures I was expected to carry out were terrifying.
In direct contrast, when a relative spent her last weeks in a residential hospice a few years ago, it was as good a death as possible (other than instant, my first choice). The medical support combined with the quiet, homey atmosphere made both patient and family as comfortable as possible under the circumstances. We need more residential hospices.
17
@Anne
That was not really my experience with Hospice. We had a full pain control kit at home for my father, and daily visits from Hospice nurses to assess levels of pain and discomfort.
3
@Riley2 Completely agree with you here. I think too many have sort of romanticized the dying-in-your-own-bed scenario. Things happen when a physical life ends, and no one who isn't trained about those things can really understand. It was, for me, deeply traumatizing. I am glad my brother got his wish, but I won't, if I can help it, be going out that way.
8
My wife was diagnosed with stage 4 pancreatic cancer in April 2016. We had no illusions of a cure but hoped that chemo/radiation could give her maybe a few more months. Treatment wasn’t working and she was suffering and losing weight. She decided to stop treatment and go into a hospice program. What a difference! The oncologist kept prescribing higher and higher doses of fentanyl patches to deal with the pain and lots of OxyContin. The hospice medical staff immediately prescribed methadone and got rid of the patches. Turns out the patches require subcutaneous fat to be absorbed. She was literally skin and bones. You’d think the oncologist would have known this! There was an immediate improvement in her quality of life. Hospice provided a hospital bed and everything we needed and visited once or twice a week. She started gaining weight, became more lucid, resumed bicycling and going to yoga classes, took an art class, resumed driving herself around. We got several quality months before the inevitable end stage. Fortunately we had a strong network of family and friends who took the 8:00 pm - 4:00 am shift so I could sleep. She died peacefully at home. It takes a village to die with dignity.
32
@Fritz
I plan to die in peace, with dignity, comfortably alone with a jug of good wine and a thousand milligrams or so of the right drug. Under the stars somewhere.
10
@Rea Tarr
That has a good vibe to it.
I'd like to go in my most comfortable den chair, with a book in one hand and a cat on my lap. Wine/drugs optional, if ill and in pain.
No one knows the future, whether sick or well. That's why peace of mind includes keeping all my legal affairs updated, including a health POA and directive, financial provisions for pets to live out their lives cared for and together, as well as then for me a simple cremation and ashes scattered to the winds or a dust to dust, earth to earth green burial with no coffin or pricey real estate cemetery plot. Leave no footprints.
9
my husband died at home in february 2018. i couldn't care for him myself so two friends moved in with us 6 weeks before he died. he had had a pain crisis and i could not move him from the bathroom. i called our friends and they came over. one man, one woman; married. my husband stood 6'4", he was a big guy. i really needed levi to watch him when he was in the bathroom. levi's wife cooked for us and sat with my husband. hospice came. and at the end we had three other people staying with us. i put out mattress's and some people slept on the couch. i will say that jc walked till the very end. he was only in a hospital bed for one night before he died. so, after than really scary experience of my not being able to move him things were not physically that difficult. but i don't think i could have done it alone. i know i could not and i was 69 at the time, not a youngster. we need inpatient hospice units to care for terminally ill people.
17
Perhaps a distinction should be made among hospice care providers. Hospice programs owned by hospital chains must show a profit and are prone to limit expensive services and those not reimbursed by Medicare. Community based not for profit groups may be able to provide an enriched end of life experience for both patient and family care providers.
10
@Carolyn As usual the problem is cost.
2
Fix hospice care. Make the numbers and see what needs to be fixed. But sending people to die in a hospital for palliative care is definitely not the solution. Patients do not want it, the system should not want it (the expense of a hospital stay is enormous. Why did Mr Peterson had to die in excruciating pain? No pain medications prescribed for home care? IT was not explained. Another solution may be small homelike places where people go to die if more care is needed. The turn in people dying at home rather than hospitals is great news. Now provide more support so it continues the trend. What kind of system is used in European countries? There, too, people prefer to die at home rather than in a hospital. How have they more efficiently and economically managed (as with healthcare in general) this last challenge in life? Let's have an article on that too.
11
My mother-in-law died at home earlier this year. Mammaw, as my kids called her, had suffered with lung cancer for quite some time. She did not want to die in the hospital, surrounded by strangers, and her family was able to care for her during her final days here with us. Her husband, my wife, and her brothers cared for her. My wife stayed by her bedside during the last month or so. It was exhausting and emotionally draining.
I feel sorry for folks who deal with this for years. Sometimes staying at home is not the best option, but it worked for us. In these situations, hospice nurses are absolutely amazing. But death is ugly, and almost all of the load is carried by the family. Expect lots of confusion, frustration, and heartache, and lots of tears.
We were able to manage Mammaw's pain, but there were unexpected difficulties. She was often severely disoriented. Twice in the last couple of weeks she got up in the middle of the night and tried to go to the bathroom by herself. She fell both times, and one fall resulted in a huge cut on her face, a black eye, and cut lip. It was heartbreaking to see her like that.
But, as exhausting and heartbreaking as it was for my wife and our family to take care of Mammaw, it was better having her home, where we could love on her and get her whatever she wanted. Those final days were a precious gift. The Lord was very gracious to us--and I will rejoice so much when I see Mammaw in the resurrection life to come.
7
Absolutely right! But also know that over the years a feeling of having done the right thing will persevere. We’ve been there too.
4
Please don’t underestimate the simplistic, moralistic mentality of people who seem to think that caring for a disabled or dying person at home is somehow easy and noble. When I was 16, my mother had to go into a nursing care facility due to a chronic progressive illness that she died from four years later. She was unable to walk, write, going blind, was incontinent and was becoming so paralyzed that she was losing the ability to chew and swallow food. Yet, people around us thought that a 16-year-old and 19-year-old with no medical or nursing training should take care of a person who required around-the-clock medical care; one person even suggested that I drop out of high school in order to care for my mother. People who visited my mother would often tell her that my sister and I were “bad daughters” because we didn’t care for her at home; this upset her so much that she refused visitors. My mother needed medical care that my sister and I could not provide. I’m glad that medical and hospice professionals are speaking truth to power about the perceived “nobility” of caring for terminally ill and dying people at home; it’s not good for the caretakers, and can have unintended bad consequences for the patients. I hope people are listening.
102
@eheck I am so sorry you went through that.
21
Hospice can, but not necessarily does work. My husband died 38 days ago in a hospice facility in Tucson. He was 96, a WWII Purple Heart veteran. The VA had an 18 month waiting list for in-home care. He didn't qualify for their hospice because although wheelchair bound, his dementia had not reached medicare's criteria. I had cared for him 24/7 after he broke his hip 6 years ago. In his last 9 weeks of life, I called the ambulance 4 times to take him to the Tucson Medical Center ER. The last time, the ER doctors said there was nothing they could do for him medically. He had a DNR on file. They transferred him to their adjacent facility. I was able to sleep in his room, cook simple meals in a public room, witness the immense kindness with which the entire staff cared for him. He eased into death on morphine and Ativan. I cannot say how grateful I am to TMC's hospice facility.
30
Although increased use of hospice is mentioned as one factor, I posit that it is the primary reason for the increase in home deaths.
I was primary caregiver to my parents and through my father's death. Hospice was a godsend, for instance, providing an all night nurse to sit with my father so that I could get a night's rest. But one needs to ask about services, the RN in charge may not know of the caregiver's needs.
A year later, Mom went to live at our sister's. Again, great care by hospice. This time it was my brother and I who were secondary givers. Mom needed full time coverage and two person transfers. We were fortunate enough to find two loving women, one a nursing student, that we could afford to be with her. One of them, and one of us, to make transfers.
I spent five years in a huge seniors program as chaplain. I spent a lot of time with they dying and their families. We provided hospice type services to the end.
Every situation is different with common threads. Being with the dying, family or not, is the most intimate experiences of my life.
5
When my father was dying, I was advised not to put him on hospice, because he would get much less physical care (4 hours/day) than he was already receiving (12 hours/day). This is probably the biggest shock to families trying to care for loved ones at home. In my dad's case, at least, it meant cleaning him, changing diapers and sheets, taking care of urinals, and suctioning his throat. Not that I didn't want to, but I use a wheelchair for mobility, and don't have the range of motion to do those things. Even so, able-bodied people are grieving the imminent loss of their loved one, and custodial care responsibilities just makes it worse. Why can't hospice be set up to care for a patient's physical, as well as spiritual, needs? Is it just a cost-saving move on the part of health insurance companies?
12
@Carolyn Clark
Anybody who is using a wheelchair for mobility is disabled, and disabled people should not being caring for terminally ill people. Whoever "advised" you not to put him his hospice was wrong.
7
This article reports that approximately 60% of people die either at home or in a hospital. What about the other 40% of people at the end of their lives? Are they relegated to nursing home placement due to their lack of a caregiving structure at home? Or, are there other reasons for nursing home placement? Nursing home staff are stretched very thin and often are unable to provide adequate care....what happens to these patients?
3
Could you have found a more extreme case as an example? There are so many remedies offered under home hospice care where this man didn't need to suffer. That story is from an unreliable narrator and need a lot more details.
9
@Edward Hospice services are extremely regional. I notice from these comments that people in the Northeast have far more services that we do in the Midwest, at least those of us not in the really large cities. Night nurses? Not for us! Pain relief? Delivered with suspicion and reluctance and the assumption that someone is an addict. Often not delivered. Don't assume that narrators are unreliable just because their experience differs from yours. You may have advantages they do not. Hospice is often a big fail in Michigan.
17
Both of my parents died at home. I had worked in a nursing home in college and had been the only one with my grandfather when he died in hospital, so I was determined to keep my parents home if I could.
My father, who was a physician, became confused, restless, disoriented. With my two children, I moved into a house that could give my mom and dad the room they needed, and we began the process of caring for each other. About a year before he died, my brother--who had lost his only child to cancer and was divorced by then--came to live with us, too. It took everyone and hospice caring for him, but we made it work. We were fortunate to have the just-right circumstances.
With my mother, who was younger than my father and who remarried after he died, I again became caretaker. I moved back to my hometown (as a teacher, I can typically find work) and, with my son, cared for my mom and her new 80-year-old husband. My son and I agree that we're grateful for those three years with two amazing people. And, we couldn't have done it without hospice. The nurses were amazing.
The physical, emotional, and monetary costs can be high, but, in the right circumstances, the benefits can also be tremendous. I am so, so thankful I was able to care for my parents until their deaths.
8
@Really?
You must have been an amazing daughter. Not everyone has the time, resources or desire to dedicate three years of their life to take end of life care of their parents. (That's one reason people in the past and in other countries had a lot of children, as insurance that there would be care at the end. That was often assigned to an unmarried daughter).
5
The big difference between caring for children and caring for dying elders is that children grow stronger and more independent each day with our help and we know we are succeeding. With dying elders all of our efforts are not going to change the outcome, only the duration of the process, and when they die, we feel we have failed. Dying at home is highly over-rated but we have been sold on the idea because it keeps the cost of care squarely on the family.
30
@Steve725
For decades and decades, nursing homes have been filled with mostly elderly women. The age gap is narrowing but women still outlive men by at least 4 years.
Women often choose to be at home because it represents some measure of safety in a world that is hostile and dangerous to all females. Even as old women, in elder care facilities they are victims of rape, molestation and abuse from male attendants. Having a home for a female is no small accomplishment. Men take it for granted they'll have a home and someone will always take care of them.
Women have none of those illusions.
8
I have been a registered nurse for 32 years. I took care of my father at home,then years later my mother.My kids were still in school. I had to use family leave, unpaid towards the last months of caring for them.Both my parents had hospice,the staff wonderful,but they only made a "visit" twice a week.I was exhausted and financially burdened Just appalling that Medicare or any Health Insurance does not pay for additional help.Certainly a lot cheaper and more humane,than dying in a hospital.I would do it all over again. I worked at a hospital my entire career. It is no place to end one's life.
18
I was a hospice nurse (admissions) for 11 years. There is simply no excuse for a patient under hospice care to die in severe pain and there is no excuse for the family of a patient under hospice care not to be trained in providing needed care. Over half of all hospices are for-profit; might there be some conflict here? I worked for a small, not-for-profit organization and I can vouch for the fact that any of our staff would have done whatever was necessary for the best care of the patient and the family. We NEVER sent a patient a bill, even if there was no insurance at all.
33
@Craig Jaynes yup our hospice was not for profit as well. my brother and i researched the options in our town looking for a not for profit. i am very happy with the team we had, a home health aid, nurse and social worker and a physician on staff who came to the house and altered me that the time was coming soon so i could call jc's family from out of state and his son who lives outside the u.s.
4
i'm confused why somebody on home hospice care would die in "extreme pain" as the article states.
Every home hospice program I know of will give the relatives access to high doses of morphine/fentanyl or some other other powerful opiate to eliminate any pain.
You give somebody 10-20mg of morphine and I guarantee you they won't be in any pain.
When my father died from pulmonary fibrosis on home hospice in 2011, I advised my mother to give him as much morphine as he needed to stay comfortable.
The goal of hospice is not to prolong life, it's to ease suffering. If a relative on home hospice is in pain, then for God's sake give him/her as much morphine as it takes to ease their suffering!
I'm shocked and appalled that somebody would die on home hospice without any access to pain meds. That's absolutely absurd and any hospice program that operates that way needs to shut down.
85
@Diana You are correct. Our hospice had a box in the refrigerator of an oral opioid when Dad was nearing the end. He had cancer. Mom did not, so she never got one, best as I recall.
When the RN came to wrap things up, she immediately opened the box and inventoried what was there and removed it. We were lucky, all unused.
7
@Diana Morphine etc. are not always what they are cracked up to be. My mother had self administered morphine (SAM) through a tube in her chest. She hated it. It was not a blissful pain free existence. It made her relive WWII and made her extremely agitated. The extreme physical pain from terminal colon cancer was more tolerable.
5
Our health care system is the most expensive in the world, and there are so many dedicated health care workers; I appreciate them all. However, the burden of care falls on family members to supplement overworked hospital staff or highly limited home health care. As someone who helped take care of my dying mother and dealt with a long-term hospitalization for my late husband, I can assure you that there is no systematic help and that family members are easily overwhelmed and expected to do too much. It is inhumane for all concerned. We were lucky to have available a wonderful hospice center where my mother spent the last three days of her life, but the six months before that when my sister and I provided and/organized in-home care were incredibly difficult. If you have not been through this, count yourself lucky. For those of you who have, you are saints beyond measure. As a nation, we need to do better.
22
@Gina Lane
As the wealthiest nation in the world, we should and can do better.
3
My father was a resident at a nonprofit retirement community where he spent his last several years in comfort surrounded by friends and great staff. He passed away suddenly one day while shopping in the gift shop on the premises. If he was at home it might have been a few days before he was found. Dying alone was a bigger concern for me. If possible, living in a comfortable familiar setting that has become home, is ideal. I am glad that we had planned this option early on.
8
@Mahalo I am glad that you had the financial means to place him in a retirement community. Many don't.
3
My interest in death and dying began with my father's death from cancer in 1990. He was treated in N.Y. up until 10 days before his death, then sent him back home with my mother to die. Hospice refused to come in until the insurance was approved even though we begged them, so our family (aided by the family GP) cared for him in his last days – and it was a nightmare. My father died the morning the hospice called and said it was ready to come in to help – I was so angry I hung up the phone. Then I vowed to learn all I could about death and dying so I would never again feel so helpless.
In the past, the dying were cared for at home by spouses, children and extended family. In today's society, families are spread out all over the country or globe, thus making it more difficult for families to attend to terminally ill loved ones. Society must face the reality that hospitals and nursing homes do not have the capacity to take care of all who are dying. To face the challenge of home care, we must develop a sense of community within our communities. EOL Doulas and others with experience working with the dying can be valuable resources in helping families navigate through the system. Neighbors may be called upon to help neighbors – help that will eventually be reciprocated. Most importantly, care must not be denied due to lack of insurance.
15
I am someone who is currently living with a terminally ill brother-in-law who is about half way through his initial estimate of time left to live. He is doing okay at the moment and mostly caring for himself, but his decent is getting more obvious. My wife and I are staying optimistic, but neither of us have experience as health aides and I feel like we are currently “skipping past the graveyard” in our vision of what is in front of us.
The assistance we have received from the palliative care team has been caring and adequate, in as much as it can be. But I wish there was something else in the lines of truly preparing us for the reality of what is to come, and how my wife and I can functionally assist with this process. I am afraid that it is perhaps too gruesome to show someone until they are actually in the trenches with it so the “education” is intentionally scarce. I also wish there was a facility available that is more home like but had the professional staff available for families to be competently assisted. I am grateful for any insight readers may have.
5
@orange kayak See if there are any End-of-Life Doulas in your community. An EOL doula is a nonmedical professional trained to care for a terminally ill person's physical, emotional, and spiritual needs during the death process. EOL Doulas also work with families to help prepare them for the dying process their loved one will go through. Although EOL Doulas are paid professionals, you could hire one an hourly basis to explain the death process to you and answer any questions you may have. He/she will be able to share information to help your family better support your brother-in-law in his journey toward death.
7
@orange kayak also doulas are a great idea and see if there is anyone in your community who has had training with some of the buddhist centers in the country who are offering trained and supportive caregivers on a volunteer basis who can guide you through this experience. upaya zen center is one organization training people as well as the n.y. zen center for contemplative care (they helped tremendously when my husband was dx with colon cancer)
@orange kayak I don't have any particular words of wisdom, despite having watched both my mother (59) and brother (57) die of cancer, 20 years apart. I can only say that I wished that more people had come by to relieve us for a while. It is enormously draining playing the 'waiting game,' and it would have so welcomed to have some relief. If you have friends or other family who offer to come and sit for a few hours, you really should take them up on it for some self care. See a movie, take a nap, read a book, go for a walk or a drive and listen to some music, but try to get away for a break. Wishing the three of you a peaceful time in the days ahead.
4
Perhaps hospitals should have an adjacent facility with a home like setting for patients to stay. No bright lights, beeping machinery and family able to come and go. A caring staff, well educated in hospice, palliative care. This way if they need the hospital, it is there while living in a homier setting.
After surviving cancer and watching my husband diligently care for me, I could not ask him to go through an extended period of caring while I die. I also would not want the lasting memory for my family to be my dying in our home. Better he and our children remember me in happy times in our home.
13
@Stefanie This is what we experienced when my husband's father died in Canada in 2015. He was determined to be terminal in the hospital and the doctor recommended he be moved to hospice. We were amazed to find that the hospice was attached to the hospital - without the invasive, intrusive machines and daily medical prying and procedures - my father in law was allowed to quietly pass away with us nearby. My mother in law, who was suffering from early dementia, did not have to have him back in their retirement residence where neither she nor the staff could care for him (we live in PA and were staying with friends in the area, so also could not take him "home") It was an amazing experience. And all covered under their HC system.
15
@E Campbell
We need to examine how healthcare systems are dealing with end of life issues in other countries, Broaden our limited horizon. Canada is a good place to start. France? England? wealthy Germany? Other European countries? Thanks for the comment.
3
@E Campbell I too would like to put in a good word for Canada's end of life care. My elderly parents retired to a small town an hour north of Vancouver accessible only by ferry. Even in that location, when they were registered in hospice in their last six months, they got daily visits from caring, professional hospice nurses and home help that began at one visit per day and increased to two, three and finally four visits a day as their time got closer. They died within seven months of one another, lucid until the end, with their pain in control and their every wish honoured.
5
For many, dying at a hospital is really not an option. Enormous costs are part of that, sure. But going to a hospital also likely means the patient is still seeking life-saving treatment. For people near the end of their terminal illness and who have made the choice to cede further treatment, there are few options left besides dying at home (hospice facilities are for the very ill, with only a few days of life remaining and limited beds for even those that qualify within that very narrow definition).
Palliative and hospice care offer wonderful, compassionate, wraparound services to patients and families at their most vulnerable. A focus on comfort is an important pillar of that - therefore, I was surprised to read of the experience Mr Peterson had as a hospice patient. It sounded like he was in unnecessary pain and discomfort for far, far longer than is ever appropriate on either hospice or palliative care. I’m sorry both he and his wife had to endure that with such little assistance.
17
Something is too tilted about this article. Dying at home with proper hospice resources, solid orders from the patient's doctor, adequate pain protocol, and a truly short period of life expectancy is often the best scenario for a family. If they are properly trained and prepared. When it doesn't go well, it's because professionals did not do their job correctly. Period.
26
@Ella Exactly. When I read this article about a home hospice patient dying in extreme pain, I thought there must be some mistake -- no hospice that I know of would refuse to provide high dose pain medicine to ease suffering. That's their job!
15
@Ella
Wow, bullet points for a great marketing piece...
And what recourse do you (the care giver) then have for making up for the professionals that did not do their job correctly? NONE.
3
An issue not discussed here is the crushing financial burden of memory care. In checking for a relative I found it would cost $5,800 a month, with no assistance from Medicare. $70,000 a year quickly depletes the assets of seniors, and they must spend all their assets to receive Medicaid help.
I suspect some families keep loved ones at home, in part, to preserve the family assets for others.
17
My dad passed over a year ago from Alzheimer's. We brought him home just before he died. We wanted him to pass surrounded by family, not by strangers. For those who are thinking about doing something like this, contact your local hospice organization. The ones who worked with us were a godsend. They provided a hospital bed that would fit in our home, and made sure his passing was comfortable and peaceful.
13
This trend of dying at home is going to continue and it's easy to see why based on simple mathematics and economics:
People who can't afford healthcare won't even bother seeking it so they will eventually die away from medical facilities. Unfortunately, people who can't afford healthcare are an ever-growing fraction of the population.
16
The idea of assisted suicide facilities such as shown in 1973's "Soylent Green" may become a reality.
In that film, which takes place in dystopian Manhattan in the far-off year of 2022, NYC has a population of over 40 million. Edward G. Robinson played Saul, a man who's had enough of life. He walks to an assisted suicide facility, signs some paperwork, is escorted into a room where he enjoys wall-to-wall scenes of nature while listening to Beethoven's 6th Symphony ("Pastoral"). All the while, he is being gassed to death.
3
As a caregiver for a rapidly degenerating mother with Alzheimer's, I can't state this whole "Isn't it best to stay at home". is not what it's imagined or cracked up to be. The burden on close family members is crushing, feels endless and is extremely stressful and unhealthy for the caregiver. I do not expect to live as long as my own mother due to the stress I am currently under.
47
I feel for caregivers, I absolutely believe the funding should be available for everybody to get thorough hospice care, nobody wants greedy soulless hospitals racking up pointless charges during our final days, but is that really what this is about? I would imagine that the shift toward dying at home has more to do with overdoses and other complications of drug use (the much-heralded "deaths of despair") than with a shift away from hospital care toward DIY. Did researchers looking at the data ask this question?
2
This is such a troubling, emotional point. I have watched emotion in our aged parents cloud logic or pragmatic judgement. There is a fear of the unknown, about a professional setting as well as about unknown people. Ideally they would like to rent out our lives and minds to make decisions for them. In today’s world, such an arrangement is near impossible. If we retired to look after them, then our old age would be in serious jeopardy. Such a cruel world when we have to choose which family is more important.
I dream of a time when we can pay monthly installments from a young age for a dreamlike retirement facility with assisted care. Perhaps like life insurance, it can pay for all the necessities. Imagine a large complex, serene, well run, bright and kind, far away from the cities to keep it affordable. Why can a startup not consider it? Surely they will be able to make much money if they can convince young people to cough up monthly installments for a long time. For us I think, we will have to work for a long time. After that, the only option that will be affordable and safe would be to go live in a developing country. Yes it will be far from family, but the dollar goes far, help is plentiful and cheap. And yes should we need medical advice/care, doctors are good the world around. And the bonus, maybe living a world away, will be a good thing for the mind to keep exploring. And for family, if they decide to visit, how exciting to explore another country.
8
My grandmother died in a nursing home. That was little better for us as care givers than had she died at home. The nursing home that Medicaid covered was such that we always felt like one of us had to be there to help provide proper care - the staff was poorly paid, over worked, 'checked out' and honestly didn't care very much.
My father tried to die at home for three long years. That came to a crashing halt when he got out of bed, dropped to his knees and for two hours my mother and I struggled to lift a 255 lb man without hurting him. Finally we had to call my uncle and a cousin to come help us. All told, my father spent 3 hours on the floor.
We were incredibly fortunate that my father had the insurance and resources to spend his final few days in a private hospice setting. I understand very much not wanting to die in a hospital - it isn't peaceful or private.
But we as a society have to do better helping people die. My happy memories of my father compete with caring for him. I remember helping to change his adult diapers more than I do his laugh. That's wrong.
44
Over the next 15 years we will likely witness a sharp spike in suicide as a way to avoid the horrible end-game money-grab offered by our current fee-for-service healthcare system, which has no interest in outcomes. The Boomers will for one last time be leading the way.
Maybe, finally, one day there will be universal health care. I'm afraid not before the Boomers exit the stage however.
73
At some point, the medical needs of the patient will exceed what can be provided at home. Many people who always say that they want to care for their relatives at home certainly mean well. However, they have NO IDEA what is in store for them when they take on this task.
54
I think that many people feel pressure to die at home, as though it's the end of a Hallmark movie. While I would hope people don't endure pain at the end of their lives, I think, perhaps, the focus should be on the life one leads vs. where they die. Because for some, dying at a location other than home, may be the best spot for them. And I would hate for anyone to feel that they've missed out because they couldn't select where they conclude their life.
12
While the home hospice and home healthcare industries certainly have their flaws, they are solutions to the problem of how to help Americans age in place and spend their last days where they would prefer to be, not in hospitals or nursing homes. The problem is that Congress refuses to provide Medicare reimbursements sufficient for hospice and home health companies to operate effectively, to properly vet staff members and then to pay them appropriately for the yeoman work that they do. The reason for all this is that these low-profit-margin industries cannot afford to bribe members of Congress as sufficiently as other, much richer healthcare sectors.
I can remember trying in vain to use not money, but simply vital facts and clinical statistics to convince Congressional representatives that these industries needed more federal support to truly benefit America’s aging population. Unfortunately, none of this information would gain nearly the same attention as some fat checks to their campaign committees. It is yet another example of how our nation is hurt by money in politics.
66
@LIChef
And since Congressmen and women tend to be well off economically and have excellent health care insurance programs (courtesy of tax payers) they do not have to fear to be in the position of the average American citizen and need not look into this problem.
6
Having been in a superb hospital three times in nineteen months, I can see why most people would like to die with dignity at home.
Having your own things, family and friends around you can't be overestimated. Even with wonderful doctors and nurses, the hospital is impersonal and while they may tend to your physical and pain needs, it's nearly impossible to rest properly or feel comfortable.
What I want to see and feel we desperately need, is the right to die with dignity and by choice. Imagine the ease with which those with terminal and extraordinarily painful diseases might ease their suffering if they knew they had the right to end their life on their own terms.
While every day is precious, we must plan for a good death: one that releases us from unrelenting pain and unnecessary suffering. A prolonged and painful death doesn't honor a life well-lived.
34
If you are going to die with dignity at home, it's important to have home health care insurance to get needed assistance. Forget Medicare. I don't work for the insurance industry so I'm not pushing their product, but I know too many people who are over-burdened by having to care for the disabled or dying alone.
14
There is always a focus on the misery of the upper-middle class. Can you find any normal people who deal with these issues in isolation every day. Caregiving is hard work. We all don’t have the option of relying on Upper West Side resources.
17
I took care of a family member at home until her death. Her death was long, drawn out, extremely painful, and not at all what we wanted for her. Many years later, I still suffer from PTSD from what I experienced.
It was torture for both her and the three of us caring for her (two without medical training.) Emergencies always seemed to happen in the middle of the night. I still have trouble sleeping a full night's sleep.
Yes, family should take care of each other, but that family includes the caregivers. I needed help. I needed care. I needed a respite. The rest of the family not under the roof all evaporated until the funeral, which was 10 years ago today.
When my time comes, give me a big sack of drugs and let me go quickly. I will not subject my children to that.
145
We know from friends and relatives that end of life care in a nursing or assisted living facility is typically deficient -- and there's no way to monitor it. At a cost of up to tens of thousands a month plus upfront investment that can run hundreds of thousands, it's no longer sensible. The exception is the patient who wants to take every conceivable medical/surgical option, which requires constant transfers to and from hospitals.
3
I was fortunate enough (as a retired nurse) to be a volunteer for a hospice organization that has been in the area of NW Ohio for almost 40 years. They have 2 inpatient facilities, 200 volunteers and a cadre of registered nurses that care for terminal patients in the home. The whole operation was created and is run through donations. A patient never receives a bill. It is by far the best care I have ever seen. Many friends and family have died in their loving care and I have never heard a bad word about it. That can’t be said about those dying in an ICU in any hospital.
While visiting a hospice patient in an ICU, I heard his doctor tell the family not to encourage hospice inpatient care aa “There is a a lot more money to be made before this one dies.”
8
Once again we can see that of all the resources which are assigned value in the medical system in this country, the families' time is completely worthless, and ruthlessly exploited by hospitals whenever possible. Woe to the person with no family.
Go to any busy hospital today and you will see people being discharged who are severely ill-- often after waiting a day in an ER. They are ill enough that decades ago they would not have been discharged, even if the hospital of the past was less able to provide care. I think we need to resurrect a lower tier of care in hospitals today-- one where you can stay, but may not be seen by a doctor or even a full nurse unless your condition deteriorates.
11
Having worked in hospice care as a NP, I can say that there really is no reason for a person like Mr Peterson to die in intractable pain. A good hospice program should be able to sedate a person whose pain is difficult to manage at end of life. All hospice are not equivalent. Pick one that is a large non-profit that has been around for awhile and has a range of services and levels of care. The hospice I worked for had a terrific inpatient hospice where patients could come for short term stays to let physicians work on getting them stabilized and comfortable.
That said, most families have to supplement a hospice team in order to make this work well. Hiring reliable, competent home health aides can be challenging, as there aren';t really enough to go around.
Medicare saves money when it allows families to keep a dying patient at home. Medicare ought to be more generous with home care than it is, and it is the biggest priority for tweaking the hospice regulations.
51
@ach Thank you for your comments. My mother-in-law did hospice at our home. With transdermal fentanyl patches there is no justification for severe pain.
What is family for if not to care for one another? Caring for a baby is also exhausting but most wouldn't think of handing it off to a facility due to the burden. Taking care of a dying family member is an important experience in the circle of life. The dying teach us how to die, so that when it is our turn we can do so with knowledge and grace.
8
@Julie I don't think you have much experience in caring for a dying adult if you are in any way comparing it to a baby. For one, you are not taking into account acute pain, which is not something you generally are dealing with when caring for a baby. Another thing - personal hygiene in a 200lb person is very much more difficult than an infant. You also don't generally have to use suction for secretions (bulb suctioning an infant nose is NOT the same), do wound care for pressure sores, change all the linens on a full size bed, feed someone who can't always effectively swallow OR administer tube feedings all while trying to keep up their spirits and keep them occupied or distracted. I have done both, and believe me, babies are NOTHING compared to an adult.
163
@Julie, Taking care of a family member at the end of life is far more challenging than you imagine. Do you know how to prevent bed sores on someone who can't sit, stand or walk? How to feed someone to keep them from choking to death? How to handle someone having a seizure? I do. That's just the start of caring for a dying family member. We had full time home health aides which made it possible. Don't underestimate just how hard this is.
49
@Julie Yes, it's an important experience, but don't underestimate how much more difficult it is to take care of a 120 pound -200 pound human versus an 8-pound baby. Your average female adult lacks the muscles to assist a sick adult and so you need help which no one pays for.
11
On of the things many people don't pay any attention to until they are confronted with it personally is how long "dying" can take. Sure, the actual death is one thing; but for most aging people it is a drawn out process, far different from the dramatic deaths on screen, or those associated with younger people, or accidents. Its is for most, a kind of intermittent, seemingly unending series of crises ( until the final one). And the loved one usually doesn't just close his eyes peacefully, unless under the effects of morphine to ease pain.
The pursuit of a good death did lead to hospice, which is a wonderful development, altho' naturally imperfect with the best highly dependent on volunteer funding and support.
I think we need both more extensive hospice services, and also better alternatives to nursing homes for many - there are prototypes here and there, of small group home like clusters which can manage most care needs up to full nursing.
23
Both my parents died at home. Dad died New Years Day, quietly(fetal position and non communicating for the past 3 years due to Alzheimer's and Parkinson's)with Mom and our golden retriever, Montana by his bedside in the middle of the night. My Mom on the other hand had a very painful beginning before she succumbed to death 5 days later. Even with hospice in the house, there hours for physical help was during work hours. Talking to a nurse on the phone in the middle of the night as I was crying and was overwhelmed with how to administer the morphine was an absolute horror. I still relieve this in my mind and it's been two years since her death. I never felt so alone in my life. Trying to ease her way back to Dad but knowing how helpless and useless I was in doing this is a guilt I will live with for the rest of my life. So for me it will either be in a hospital or hospice setting. Dying at home is a dream that people think is a peaceful way to end your life but in reality it is not.
57
Martha, I agree with you. I was the caregiver for my sister while she died at home with hospice. I also was on the phone to hospice during the night before she died, in tears about giving the morphine. I had administered it many times, but near the end, due to fatigue and stress, in the middle of the night, I felt like I was going to kill her if I gave her more. I called hospice and the wonderful hospice nurse came out to help. This was irrational thinking on my part, but it happens when you are alone with a dying person in pain. I have never felt so alone and scared.
My parents both died in nursing homes, with their children there, as well as nurses and aides who we knew, and who cared about my parents. At this point, age 69, it is hard to predict how the end comes for each of us. I hope that I have the option of death with dignity, through safely administered medication.
19
@Jane When my dad was in home hospice he was in extreme pain. I gave him higher and higher doses of morphine. Did it hasten his death? Probably, but lets remember what the goal is here -- it's not to preserve life at all costs but to prevent suffering. Giving morphine prevents suffering so it is ALWAYS the right thing to do in hospice care. You did the right thing by giving more morphine.
23
@Jane I appreciate your thoughts on this very important article. And Diana is right, no one wants their loved one to suffer a painful death. Yet for me as hard as I tried to be brave and do what was the right thing to do, I can't get pass the feeling that I failed. Exhausted, lacking sleep( I think I had about an hour of sleep in those five days), overwhelmed and most of all I was afraid. I was afraid to administer this drug when I have never done this before in my life. It was in my hands and it took all my strength to do and to this day I can't get pass this feeeling.
4
I recently lost both my parents (they passed 19 days from each other). Both were in home hospice. They were where they wanted to be, surrounded by family. Fortunately they had to resources for 24/7 private care. I was there the entire time, and even with the hands on help the last several weeks were grueling. I cannot imagine doing this on my own. The hospice team was great, but not designed for day to day heavy lifting required. Before going the home hospice route I would suggest you honestly evaluate your ability to be on call 24/7 and deal with very difficult end of live issues on your own.
48
Who said hospice operates on a "razor-thin" budget? It's presented as fact. Care Dimensions received $160 per day from Medicare to "manage" my mother's care. For that money a nurse visited briefly twice per week. An aide was available for one hour per day to "help" with household tasks. She was nice but not trained in patient care and could not be scheduled past 3:00pm. There was a "help"line they discouraged using. I could have used the $160 to pay for the aides who actually helped me. Instead I had to pay out of pocket. Care Dimensions also made several errors ordering prescriptions and equipment adding to my stress and responsibilities. She was a cash cow for them.
29
I would rather die in my house with perhaps more pain than doped up in a hospital listening to 1000 IV alarms ring. What we need is better support for people being cared for at home, not more people who are dying in the hospital.
23
My wife and I are each facing 70. We have no children and fixed retirement incomes due to choosing to work as theater artists the first 25 years of our careers. I went on to work in a field where I got a decent 401K that will buy us some limited care. So, we know we are facing an uncertain future when it comes to end of life care. We joke that while we are still able-bodied enough, we will take whatever painkillers we have in the house, drink some very good whiskey, walk into our back yard when the wind chill is 30 below, lay down in the snow and die of hypothermia. We will have mailed a letter to a dear friend who is a hospice chaplain to come to our home to find the instructions and resources to cremate. I think when we talk about this stuff, we don't mention the fear of death - the one who is dying and the one caring for the dying.
55
@Freshginger
Our plan also....minus the pain killers, we don’t have any of those in the house.
2
@CC I imagine when the time comes in a decade or so, we will have some!
1
As a retired nurse I have seen, besides in hospital dying, my parents and parents-in-law die; 1 at home, 2 in nursing facilities where they had lived for more than 3 years, and one, my mother, die in her 50’s at the hospital. The easiest care for our families were the 2, where the staff knew them and were assisted by hospice and even that took many hours/days of decision making. It was comforting though to see them cared for in the end but that was because we knew the nurses and caretakers months or years before. The families in hospital of the dying depended a lot on the depth of relationship with the dying person.
The stress, indecision, logistics, the associations of the family and the facility or hospice to arrange around so many times and situational policies is probably not worth it, or just too time consuming at the moment of dying, or even before, trying to arrange ahead of time.
The value of knowing the dying person, and what they want is the most important consideration.
5
if this is the "gift' that modern medicine has given us, I am not sure I want it.
I don't remember having my elders existing in such frail condition when I was growing up (I am fast approaching that "old age" designation myself.) Of course, we now successfully treat many of the illnesses/diseases that used to cause a relatively swift death in the elderly---e.g. pneumonia, flu, and cancer. While I am very grateful that we have the ability to fight those illnesses--especially in the young--- one wonders if our success hasn't wound up with consequences we never could have predicted.
28
I will never burden my family by insisting that they upset their lives by caring for me at home. First of all, they don't know how to care for a dying person. None of them has health care training of any kind. I would much rather be cared for by professionals. Second, I do not think that my family owes me that. My friends say that kids should care for parents because parents cared for kids. But, for me, there was no "quid pro quo" to use a contemporary term. I didn't love and care for my children so they would return the favor one day. I did it because I was their mother, and I chose to bring them into the world and it was my responsibility. That doesn't mean they owe anything to me. I'm fine with dying in a hospital or hospice. Ideally, I'd like to chose my own death, when and where I want, but politics and religion being what they are it doesn't seem we'll have that choice any time soon.
208
I am currently caring for a terminally ill friend in my home. Having participated in this before, I have some idea how to handle things as they become increasingly difficult. We do now have help one afternoon, and one full day a week so that I can manage the business of our family ( I have an 84 year old husband who is easy to be with but lacks much of his short term memory), medical appointments, shopping etc, and also having some time with friends. I am fortunate that our friend has the means to provide this care. Hospice will kick in when she no longer uses chemo for prolonging. As she is my daughter's best friend, I also have help from her and her fellow. Though it is not easy, things are going well for us.
Having participated in a number go home dyings, I can offer this: People die much as they have lived, if they are thoughtful and kind, they likely remain so, if difficult that remains true. I am, and always have been a caregiver by nature. It is especially important to provide yourself with as much help, both from institutions and family and friends as possible, to think about, and act on this at the beginning when you have time to respond deliberately. Dying often shrinks the person's perspective to just their own concerns, this is natural, not bad. Thus, it is important that the caregiver does not let this define them. You will go on, and there must be something left of you for your continued journey. My best to all who are on this road.
77
My close friend cared for her husband at home with hospice help. He was dying of heart disease at an old age, and lasted a year longer than the doctors expected. She is 5’ 3”, he was 6’ 2” and over 200#. While they were alone, he fell many times because he insisted on trying to make it to the bathroom.He couldn't, and she had to deal with that. It was grueling for both of them. He finally died in a nursing home, 10 days after entering. I would prefer to stay at home; most people would. But unless there is an aide there 24 hours a day, I don't think situations like theirs are worth it.
32
This is one of the reasons why I'm glad I live in Colorado, where if terminally ill I can chose to die with dignity and without torturing my family.
80
@JW -- I live in Washington State where we have the same laws. Unfortunately, too many times the patient's wishes are not followed. Family members intervene insisting on treatment the patient doesn't want. Hospital staff ignores living wills and DNRs. My community hospital is Catholic, and it says right on their website that they won't honor patient instructions that advance a "natural" death. There are all kinds of obstacles set up to prevent the patient's wishes from being followed. Unless you have the 100% agreement and commitment from your family to fight for what you want, it's very likely that you won't get it.
29
@Ms. Pea Thank you for the feedback, however in my case my family feels the same about themselves, as well, and will honor my wishes. We all feel that torturing loved ones in order to have someone live a few more days or weeks or months in pain, and without any quality of life, is cruelty.
5
I have experienced a friend dying at home, tragically and my wife in a Canadian palliative care ward in a hospital.
I could not care for her appropriately. Palliative care wards are and the special people who do this deserve respect and love for that is what they provide.
It does not cost a small fortune to die in dignity in Canada.
Like everything else in the U S you make dying a profit centre.
Pretty low, don’t you think.
285
@Dwight McFee
As a US citizen, I totally agree. Unfortunately once you have the monied interests embedded in the system, they bribe (oops, I mean lobby - that's the American term for bribe) the politicians not to change the system. If your politicians ever suggest "privatizing" your health care system, do everything you can to resist. Once privatized, profits above all.
28
@Dwight McFee Agree, here in the US the love of the almighty dollar far overshadows everything else. I wish I had moved to your beautiful country years ago when I had a chance, so that my children could have been raised in a decent country. Alas, I chose to stay here and fight for what is right in my country. I lost, we all lost, and nothing points to that more than the past presidential election. I made a bad decision, and I will die in regret.
27
Orchestrating a death is not easy, and there is great sensitivity required. Doing it at home is even harder than in the hospital. I was honored to “run” a home death of a child with 3 siblings and two sets of grandchildren. It’s a delicate ballet, as each person is in his own purgatory.
Since then, Home deaths have been “standardized.” Hospice drops equipment (oops, wrong size bed), oxygen that the family may or may not know how to use, a box of drugs (ooh, hope druggie kids don’t find them), and caregivers drop in, do their thing, spending much of their time on the computer. Elderly neighbors have to be summoned to get the pt up off the floor ... at 4 am.
I’ve seen a number of home deaths over the years and the best happen in families where they pay for attendants to do as THEY instruct, where the comfort of the patient and family is job one.
Please plan ahead, people, and whenever possible, have helpers who answer to you, not a protocol.
17
Of course the medical profession wants us to die in their hospitals. It’s how they make money. No, this is a good trend and a good thing. Let people die at home with dignity.
3
This is a very disappointing article. I wish the author had balanced it with a positive story of death at home. As a former hospice nurse and chaplain, I can wholeheartedly say I worked with wonderful people who did not allow anyone to die in pain.
22
@Jane D Thank you. The hospice nurses who cared for my Mother at my home were angels. I never felt alone even when they weren't here. And the compassion shown to us was lifesaving.
14
@Jane D I think there is high variability in access to hospice resources when enrolled. I know of one that will provide around the clock care and access to RN advice 24/7; others where twice weekly visits are normal and inadequate symptom control/counseling is an issue for patient and family.
13
@Jane D There have been many stories of how wonderful it is to stay at home, when the person's needs are really being met. But I think an article about the downside and the need to consider whether staying at home at all costs is worth it for everyone, starting with the person dying. And then, that is what comments are for, as no single article can cover everything.
12
If I have a choice, I'll die wherever makes it easiest for my wife if she's alive and thus my primary caretaker. It could be at home, it could be in hospice.
I hope I can live up to that, because even when you're dying, which comes to us all, it's not all about you.
Meanwhile, a sane and loving society would provide for euthanasia. We don't, because we're not that society. If I have to take care of it myself, I certainly hope I'll have the wherewithal, in all senses, to do so. I don't need to hang around another year or whatever and put my wife through that.
45
A decision whether to die at home or in a hospital is a life wrenching decision by anybody in any country.
In America it is complicated and perverted by our de facto criminal pre ACA health care system where the wealth of the billionaire HMO and big pharmacist exec. comes over the welfare of the dying.
18
Every parent when their children have in the least reached adulthood should tell them what they want when they're old. It's much easier having this conversation when the parents are in decent health. While it's often the adult kids who don't want to talk about it, this is one of those uncomfortable family chats - like about sex - better done sooner than later. It will save much resentment down the road.
15
I'm quit sure passing at home is a much better choice than dying in a hospital since the Medical Mafia in this country has commited themselves to bankrupting anyone in their care thru blatant extortion of the sick ,dying,and their families.This is only reinforced by an administration commited to lining the pockets of corporations and the wealthy while undermining efforts to offer affordable options to the working class and the poor.
15
Hospice care in NYC, in my experience, was understaffed, undereducated, and poorly organized. It made my husband's death and its immediate aftermath MORE chaotic and stressful. Perhaps people slowly dying are better served. But for people who are terminal and dying quickly... I'll never use it again if I can avoid it.
29
@A - I’ve cared for 3 family members at home with hospice, and my experience is identical to yours. The family member who was acutely ill with a painful form of cancer, thankfully with only days to live, was not well-served by the non-profit at-home hospice we had here in West Michigan. If not for my repeated phone calls and insistence on their sending a nurse the day she was discharged, they would not have visited until the day she actually died (2 days later), with us having no instruction on how/when/what pain meds to use. As it was, we did not and could not do a good job managing her pain.
23
@Michigan Native I'm so sorry for your similar experience. When they are most needed and timing is everything, they are the least helpful. I would say they robbed me of quality time with my husband. When I called hospice before 911 (as instructed), while my husband was actively dying in my arms, they couldn't find his name in the system and asked me to repeat the address and other ID details so they could figure out who he was. Also, they also didn't fully complete my husband's DNR, but said they did, if you can believe it. I had to beg the EMTs to not take him to the hospital after he had clearly been dead for 20 minutes. Total and complete nightmare. They had the audacity to send me donation requests for a year afterward.
29
@A I feel your pain. My brother has been gone for five months and not a week goes by that I don't get some appeal to donate from hospice. I find that repulsive and hurtful. For g-d's sake, let me grieve rather than remind me.
14
If your company is offering LTC please take it. I took mine at age 34 for $35/month and I am now 60 with medical conditions. I don't know what lies ahead for me, but at least I will have 5 years of care if I need it.
6
Dying in hospice can be very different depending on the wealth and resources of the community that supports it. My father-in-law had luxury accommodation, effective pain relief, and many volunteers that came in to entertain him. My own father shared a marginally clean room with a deaf wrestling fanatic. I stayed there for all but 5 hours every day for several months to make sure he had what he needed.
I would choose assisted death when in extremis simply because no one in my family has the time or patience to deal with the alternatives. I cannot understand the reasoning against it when that is what the patient prefers.
63
There needs to be a third way. Hospitals are not the answer nor are home deaths in which untrained family members shoulder most of the burden and expense. We need decent residential hospice facilities. Why aren’t they available?
44
@Marcia home hospice care is available for little or no cost. Just not in the US.
31
@Marcia - Residential, or in-patient, hospices are available in many places. I’m sure there is at least one, if not several, in the A2 area where you live. They are often wonderful, homelike, serene places. But the problem is that the “residential” part of in-patient hospice care is not covered by Medicare. It falls to the patient or the patient’s family to pay for that. And it is quite expensive - beyond the reach of many.
15
Both my French grandmothers had 'hospital at home' care at the end of their lives. The burden on our family was considerable but way less than what I have heard many Americans describe. I was very surprised when I heard the medical procedures that Americans are asked to do by themselves without proper medical training.
Still, in Europe as in America keeping the elderly alive at all costs is becoming an unbearable burden on society. One of my grandmothers underwent surgery that left her very dependent and diminished, and she agonized for a year. Technically, medicine saved her, but it also did her terrible harm. What does it mean to 'save' a woman over eighty with heart problems and dementia? To the doctors who treated her it apparently meant giving her complete incontinence and bedsores, and tipping her completely into dementia. It's one thing to desperately try to save a young person, it is quite another to use extreme means to keep alive an elderly person with zero chance of recovery, and 100 percent chance of extreme suffering.
35
Approaching age 76, I think about how and where and when I want to die a lot. Ideally, I would like to have the chance to say goodbye to those I love and value. So I am writing letters now, in the event that the ideal death - quick and painless -will not likely happen. Dying at home does not hold any interest for me as it would drive me nuts not to be able to take care of my critters-I have a farm-and make sure that they are all okay, In my will, each is bequeathed to a friend, along with a stipend for their care. The geese will come as a surprise, but I count on forgiveness. My late husband died of dementia and the years I was his home caretaker were grim. When he began to escape the house as winter neared, I moved him to the Veterans home in a nearby town. Meds for his hallucinations were available there that I was told would not have been had I kept him home. The same was true for his pain when he stopped eating and drinking. I was sleeping at his side holding his hand when he passed. Dying anywhere is hard on all involved. Guilt and "what ifs" go with the territory. That is why I am writing out and talking out what I want with my daughter, my only child. It's possibly not only the last, but the best gift I can give her.
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@Vicki Biggs-Anderson I have an only child too and I have thought about this. Your comment prompts me to think some more and start making plans.
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@Vicki Biggs-Anderson
Imagining the surprise geese behest is a little touch of the light hearted in the midst of a heavy conversation.
And circumstances which are often, as you say, grim.
Talking out your plans with your daughter is indeed a gift.
20
I am 70-plus years old and have seen my share of family members die. And it hasn't been pretty in most regards. My parents' financial resources just weren't there for them to reliably call the shots, and money does matter when it comes to care and treatment.
Mmy inlaws had the money, were welcomed with open arms, high six figure bank accounts with stock porfolios and even then, my wife ended up taking her mother home and caring for her.
Familky members need to be educated advocates who take nothing for granted when it comes to planning how to care for the terminally ill. One needs to do the homework, get help from digging out information on-line, get savy and look deep into what is available, and there's plenty.
Just know going in there are many who can help, seek their guidance and weigh it against wwhat you'd expect for yourself. Man lack the sophistication to care for individuals requiring care so specific to their needs, patience and detailed expertise what one should zero in on.
I saw care that ran the gamut, skilled professional behavior and the opposite, hands on care from someone who most likely could chose to care for a fellow human being or flip hamburgers at a fast food restaurant.
Just go in with a clear head, no pie in the sky notions, questioning anyone who would single out who needs their help with catch phrases like finding a "Place For Mom", as if dad didn't matter or they just didn't have the sophisticated understanding at times like these.
10
This article is a must-read, along with others (see the list of related articles at the bottom of this one). Many people will say they want to die at home. But, in my opinion and experience, having been the care-giver in multiple family hospice situations, what most of us really want, in order of importance, is: 1) to be kept comfortable and pain-free in our last days, then 2) surrounded by loved ones, then 3) at home. If #1 isn’t in place, #2 and #3 fade in importance. And sometimes #1 can’t be done at home.
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@Michigan Native Very succinct summary of the complexity of end of life care. As a hospice nurse in a non profit agency, I know that those are what matters. I also know that increasing regulation (in an attempt to improve quality of care and also to rein in costs) makes it harder and harder to provide enough care and support to families. Profit making entities need to spend less on services in order to generate that profit - which can go to business shareholders or to the corporate entity of the local 'health care system'. That affiliation with a larger system doesn't come cheap!
6
As I age, I keep meeting more people who are struggling with caregiving in the home, generally without a network of support or relief.
Hospitals - lets make it clear - they are not extended care facilities. They are anxious to discharge. They do not get paid if there is not a defined acute medical care need
Admission to Rehab facilities ( what Medicare calls IRFs) is very restricted, so that those who are recovering from serious surgery may well be sent home without any evaluation of their ability to care for themselves, or the availability of any caregivers, far be it skilled caregivers who do not have limitations themselves.
There are a lot of genuine concerns about the dangers of infections in any medical setting ( it's beginning to sound like hospital used to be before antibiotics!)
But there are many more about who will pay. Someone I know just got hit with a huge copay for a rehab stay: if you don't research how this works and sometimes fight for approval beforehand, you are likely to run into this. Now, how many people who are facing major surgery, and their often elderly companions - if they have any - have the acumen to figure all this out - - ?Often while on painkillers, etc.
A lot of us in the giant boomer cohort are going to find ourselves up a certain creek if we need care ( we will).
There are so many changes that would need to be made to humanize our system - for all ages - the young, the sandwich adults in midlife, and the old.
Thanks Ms Kolata.
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Thank you thank you for this. We (my sisters) cared for my mother until her final moment this past Spring. We had 2 hospice nurse visits and 3 Aide visits a week and no idea of the toll it would take on us 24-7. Ultimately her "day of death" was peaceful but the prior months were frightening. Medicare legislation MUST allow more in-home assistance to families-they are certainly saving a ton by not having folks in hospitals. I cannot ever do this again.
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@Karen Right there with you! I can NEVER again provide the 24/7 care for another as I did for my late husband. I am a relatively young widow (59 when he died, now 60). It changes your perspective on being single as you age. Love always comes with risk, but ending up as a caregiver again is not worth it.
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@Kat Agreed -- I've been single since 43. I have an amazing SO who lives in my home state. I am a healthy 69 and he also at 61. Fortunately we both have kids. However, I would never get in a permanent relationship now. I must be active and even now work in a different state. I do not ever wish to be tethered by guilt to a husband's LTC.
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It takes physical, emotional and financial stamina and lots of cooperation and coordination on the part of the family members to take care of a dying family member at home. Plus, the learning curve is very steep. When my mother was dying of cancer over the course of 6 months, we had much more resources and support than most families. I was between jobs and was able to be with her almost 24/7, while my wife took care of the home front 1500 miles away. My brother, a physician, was at our beckon call and came by daily. We had an aide come in for the overnight shift, visiting nurse weekly and other friends who dropped by to help several times a week. But it was still very challenging, and I wouldn't say that my mother got the best or optimal care because there were still many things we didn't know what or how to do. It was learning as we went.
My suggestion to other families is to ask many many questions. The home hospice staff may not be able to be there much, but they are very knowledgeable in most aspects of the care and can be a great resource.
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My husband died 12/25/17 after three weeks of hospice-at-home. But that wasn’t the whole story. His esophageal cancer diagnosis two years earlier presented us with two years of painful learning. I am not a trained medical professional. Neither is my husband. The things I didn’t know made me feel so incompetent. I could follow instructions but I didn’t the difference between a complication related to the cancer and what was something new. We had two wonderful nurses (one was my sister) who answered my questions by phone and helped me with the kind of care all nurses know about — but I didn’t. As my husband grew sicker and closer to death, I didn’t know what to expect and everything became more and more confusing, and of course, frightening. I don’t think there are solid solutions to this, except for us all to become nurses. We just can’t know what we don’t know. As far as I am concerned, all nurses are heroes, and hospice nurses are saints on the earth.
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During the years prior to my mother's death of congestive heart failure I came to believe that at some point nurses become more important than doctors.
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@Dianne Olsen My father died at home from the same cancer -- about 30 years earlier. My mother, a nurse, and my cousin, a paramedic, provided all her care since there was no hospice. My father in law, a primary care physician, provided his scripts for pain killers and my sister in law, also a nurse, visited weekly to ensure all was going according to schedule. This was cobbled together on a platform of family and long-term neighborly relationships. End-of-life care, especially care designed to offer services more cheaply than Medicare-paid in-hospital care, should not be dependent upon what professionals you happen to have in your family.
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@Dianne Olsen
My father is 81 and has terminal esophageal cancer. I’m worried about how grueling the end of life for him will be.
2
Also more people are dying at home cause once you are no longer seeking treatment the hospital will get you out of there ASAP. Even if death is imminent. Many smaller communities lack inpatient hospice facilities. Things tend to work out better for the patient and the families if they start hospice earlier, but docs don't want to have that conversation with the patient/family. Hospice can really help but will usually not be there 24/7 for in home hospice. Family will need to step up or hire additional help.
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@Marti Mart
Great post!
I hope in the future that a physician's education includes a deeper, clearer conversation and understanding about when to Stop allopathic care and talk to the patient and families about death / dying and providing referrals for hospice care and/or alternatives.
2
My uncle went to a hospice facility. His lips were dry and he looked thirsty so I asked when they were going to give him water. They said they didn't even give the patients water or an iv of any kind at a hospice. I didn't realize that they are not "required" to give patients water. I told them that a hospice, by withholding water, is, in effect, deciding the time limit of the person's life. They ignored me. Makes me wonder how many people are really about to die, and how many people are just pushed into dying by withholding water from patients. Can someone explain this?
3
@W.N My experience with a hospice ward was similar but it was more about making them comfortable. Providing water to a patient was ok but IVs are not. Patients that are in hospice wards its about making them comfortable but not prolonging life. My father in law was in a hospice ward for 5 days with late stage pancreatic cancer and had a stomach tube inserted to keep food and water out of his stomach which was giving him fits due to the disease. In effect it denied him any nourishment or water and he lasted 5 days. I am sure the tube hastened his demise but the alternative was more discomfort for no purpose, he was ready and it was a quiet and dignified end, which was his wish.
My mother had the same disease and took hospice at home and it was much more difficult. Pain was the big enemy and she was on liquid pain medication the last couple of weeks or so. It was slow and painful to watch and went on too long.
My own end of life wished changed with all of that.
5
@W.N They didn't give you any information with that answer. As someone is dying, the body ceases to need food - can't digest it or absorb it. Coaxing a person to eat leads to nausea/vomiting, feeling bloated, and coughing/choking. As a person becomes weaker, swallowing liquids is harder to manage without choking on them - sensation of not being able to breathe, and not being able to cough effectively to clear the airway. Very scary experience. Fluids can be thickened a bit, jello might be better than juice, etc. Eventually a person may not be able to swallow. oral care and tiny amounts of fluid placed in the area between cheek and gum can keep the mouth moist, lip balm for the lips, etc. IVs do extend life, and are not benign - difficult to insert and maintain an IV line on a dying person, fluid can overwhelm cardiac/pulmonary/renal function and cause great difficulty in breathing. Not comfortable. So, sensation of thirst and dry mouth can be managed and a patient may not actually be ingesting fluids any longer..the process is more complex, decision making is nuanced and that point of being unable to safely swallow arrives differently for each person. A skilled hospice nurse or MD can discern this. An aide cannot.
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@TH There is nothing wrong with withholding food prior to death. That's the way nature intended it. Your body does not want to continue to digest food close to death -- not to mention the mess that comes with the death from the digestive process.
1
Legalizing assisted death (assisted suicide, euthanasia etc) would help terminally ill people die with more dignity and less pain in many instances. I am a registered nurse and if I was faced with a terminally ill diagnosis I would do all I could to have the opportunity to ease myself to death when all was hopeless.
I have heard many stories of hospice not authorized or approved in time and many many people die more agonizing deaths, whether at home or in institutions, than need be in this day and age. We are more considerate to our animals than to our fellow humans in this regard.
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@Celeste
Great post, Celeste! Yes, medical-aid-in-dying, or MAID, allows those who realize that furthering the burden upon themselves and their family members (+ our health system and its inadequacies) make a choice to release themselves from the grip of suffering.
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Many people don't realize that most in-home hospice programs don't provide 24 hour care, only 2 RN and 3 nursing aids visits a week. It is up to the family to cover the rest. I took care of my wife before she died and it was exhausting. My father died not long after and I was fortunate that he was accepted into the wonderful in-patient hospice at the VA Medical Center as I was in no shape to care for him. The idea of a peaceful death at home is a illusion, the reality is inadequate care provided by a exhausted family member or spouse, often to the detriment of their own health.
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@C McComas Agreed. My dad came home with me from the hospital for his last 10 days on this planet, in "hospice." I thought I would have nursing support... uh, not really. My husband and I had been through a similar situation with his dad, so I had some idea of what was coming, but not all. (The CNAs who bathed my dad, changed his clothes, etc were angels.)
I know my dad felt safe and loved with me, but I still have tremendous guilt; could I have done better? Did I give enough water, wipe his brow more often, etc? I just wanted his suffering to stop. He'd been in poor health for a couple of years, and very depressed. He survived his heart attack, but he stopped truly living. He was weak, had no appetite, and was incontinent. I know he's at peace now, but I am left with the residue of his passing.
3
Hospice support is wonderful but folks don't realize that with at home hospice you get a visit weekly usually. The 24/7 care is on you. Home health aides at $25 an hour is out of range for many seniors and their families. Many articles and news briefs don't explain to the public that hospice facilities have admission requirements that are quite specific with death being imminent
within days. More an more at home hospice patients have heart disease not cancer with much longer length of stays. Our country needs to look at subsidizing home health aides to keep people at home safely to die.
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@ard Yes! Thank you for your comment. Inpatient hospice facilities are actually relatively rare, and gaining admission to one is definitely not guaranteed. The public has grave misconceptions about what hospice can and cannot do. NYT needs to make this a Pick. That might at least be a start on educating the public.
2
After my mom moved in with us, my nightmare was that she would have a long, painful, anguishing death at home and that my 9 year old daughter would have a front row seat. Thankfully my mom died fairly quickly in the hospital after an acute, unforeseen illness.
12
Several years ago, a family member in her 80's entered a hospice facility, after fighting cancer for years at home. While hospice is known as a caring group of people, most families and patients fight the idea of going.
During a visit, I asked the woman at the desk: at what point do people come to hospice.
Her answer: 10 minutes to midnight. Meaning, not until the last possible minute.
15
My elderly mother died at home last February after 6 months on in-home hospice care. We were fortunate to be able to afford round-the-clock home health aides, who followed the instructions of the hospice care nurse, who visited once or twice a week until the end, when he was there for a full day administering medication (primarily morphine) to manage her symptoms. The lack of coverage for home health aides means families face terrible choices: pay out of pocket for skilled care in the home, rely on much more expensive hospitalization which is more likely to be covered, or do it yourself. The families cited in the article are not received adequate support and neither are their loved ones. No one should die in agony or distress — the hospice model provides care for end-of-life symptoms like rapid breathing and pain. Contrary to the implication of the article, dying at home for many is indeed a good death, but our broken health care system needs to give families the support to make it happen properly.
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We cared for both parents who died at home. It is not easy but I wouldn't change a thing.
9
Perhaps it depends on type of illness/disease and its progression. I've had two family members die at home while under hospice care. Both men were dying from cancer; my dad was fired from hospice a few times b/c he kept not dying, and my husband went relatively quickly. hospice managed their pain and guided me thru the process. we all wanted them to die at home.
5
Thank goodness! I have seen both ways of the end at home and in a facility. It depends on the person dying and their wishes foremost.
A hospital stay can lead to all kinds of infection risks and a home stay a possible lack of care. We have removed death from everyday life and now fear it more than our ancestors. Death is the other part of life,dying with dignity is the goal.
21
I cared for two parents in their home who at the same time were critically ill for 8 weeks. It was exhausting, tormenting, and frustrating. I'm glad I did it. For had I not, they assure me they would have died. No one else would have provided the care, advocacy, and research needed to get them onto a path of recovery. They had previously been in the hospital and then a nursing facility; the hospital was understaffed and doctors failed to file orders in a rush to start their holiday vacations. It's important to know that your "patient" (family member) will not be the kind/loving person you may have known them to be. There were a lot of prolonged periods of paranoia, ungratefulness, and entitlement. Even with solid insurance in place and ample financial resources, the medical establishment was at its best when I was a demanding, tireless, annoying advocate. I am now in the same role with a neighbor who has multiple physicians and case workers but not one who is in charge of his total medical care. Over-medication, symptoms dismissed as "see your other doctor(s)" - all led him to be in pain, depressed, and hopeless. I don't know the answer to this issue but I know this: treat your family members well and have a plan. You'll need both.
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@Patricia
You're a godsend. Thank you for the care you provide to others.
But I have to work full time - I am the primary wage-earner for my family. And my elderly mother, of sound mind and with good financial fortune, has not made plans, as I suspect a lot of people haven't. I want to treat her well and I plan on being there for her. But at what cost to my spouse, kids, career etc?
27
@Patricia
There are many good comments, but yours covers a lot of the agonies of trying to provide and guide care, including reminding readers that the person you care for may be anything but cooperative and appreciative.
Being an advocate - as you say "demanding, tireless, annoying" carries its own stresses, as well, having to fight, yet sometimes balancing the demands with care that you don't alienate key figures needed for the care . . .
Confession: my mom has been in a nursing home for a while; otherwise I would have had absolutely no life, or friends. Just keeping up with that is also a weight, but one that allows me to have a life. 8 weeks, a year is one thing, but a steady downhill, over 8 years is not doable alone.
Great comment.
@ Cousy -- good luck, but beyond that, have "The Conversation" if you can, while you can. It might not be as hard as you think once the issue is broached. Most folks I know of a certain age ARE aware that there is an expiration date approaching. There's a chance your mother thinks the topic is too fraught for her to introduce. Useful stuff at theconversationproject.org.
12
@Patricia - Three cheers for the “demanding and annoying” among us! It shouldn’t have to be that way, but it is. It is really the norm to have to be politely demanding and annoying in order to get proper care for loved ones in most health care situations. After awhile, my mantra became, “I don’t get ulcers, I give them.”
4
The article presents this as a choice between dying hooked up to machines in a hospital or dying at home. What about dying in a hospice facility, cared for by dedicated professionals trained in pain management and motivated by a mission to have as peaceful and dignified death as possible? Our brother in law spent his last days at such a facility, and we were impressed with and moved by the quality of their care for him and their attention to the family's emotional and spiritual needs.
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@Phil Korb
My mother also spent her last days at a hospice facility. She wanted to die with dignity, without pain, and in peace. The hospice nurses were angels and treated her with respect and loving care. If I have a choice, hospice would be mine. Dying at home sounds lovely, but the burden of care placed on the survivors in unfair. We should not be made to feel guilty if we place our dying loved ones in a hospice facility where they will receive compassionate and professional care.
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@Phil Korb Sounds wonderful -- if you can find such a facility. In many areas, hospice care is limited to home visits, and the only alternative is a nursing home (often pricy, poorly run nightmares).
42
@Phil Korb the costs of inpatient hospice care in a hospice house are high- Medicare does not reimburse a hospice more money for what is "residential care" - the room and board rate that is charged by nursing homes, care homes, assisted living facilities, etc. Families are responsible for sharing in that cost. For someone who passes quickly, the cost is reasonable. For someone who lingers for a couple of months, not so much.
32
It is a fact that people can recover better at home, when medically possible, than in a hospital, probably because of familiar and comfortable surroundings, especially when some care is available. Likewise, dying at home is as old as living in caves; if it is our cave and our memories peace of mind is close at hand. Leaving for the Promised Land from an institution which will send the promised bills to your vanishing estate penalizes one's need for peace in final hours and heirs from their sacred duties of farewells if the hospital or nursing home serves as a screen to the membrane of life and death.
7
@Ed Marth My mother died at home with 24/7 private care. Some of them weren't up to the physical demands of the job. And it nearly bankrupted my father, costing well into 6 figures. I'd vote for a hospice facility.
8
Dying in a hospital or hospice facility can be well-managed. The challenges to hospital care are the cost which can be astronomical, and the care which can be highly invasive. Comfort care, properly provided in any setting, should be the standard. Patients and their families should not have to push off overly-zealous physicians, nor plead with insurance for decent coverage.
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@kw, nurse
Maybe where you work. Not my experiences.