I have had a lot of experience with hospice. It started back in 1998 when my best friend was dying. She died it in a hospice home. It was more than ideal. The next three people I took care of were my brother in law, father, and mother in law. We did home hospice in all three cases. I can tell you firmly if I had not had my experience with the hospice home our experience would have not gone well.
There is not enough support for the family. They promise to be available and they are not. They basically supply drugs and say, "good luck" In each case I was able to convince our family to hire help to do the basic care. The issue most family members are not qualified to turn a patient who has tumors up and down their spine. Or to know if a catheter should be used. The basic care requires a professional. Not a family member. The idea of dying at home is excellent but in my experience, there is not enough support for the basic comfort care of the patient.
7
When my step-mother was on hospice, all of us were told DO NOT CALL 911.
1
I do not understand why Physicians do not bring up hospice care earlier in the conversation when discussing care. It can be a wonderful time for both the patient and family as there are no more runs to the Physician's office; medication is delivered to the patient's home; and family members can be just that vs. caregivers. My Mom made the decision herself to enter hospice saying she no longer wanted to look at the calendar and just see medical appointments. She lasted seven months. It was a positive experience from beginning to end to the point that my 86 year old father has offered to speak to families about the hospice program. I believe everyone should read "Being Mortal" as well. It is a difficult time in ones life but it is inevitable. We all die.
5
My hospice experience was horrendous. West bridge or something like that it is called, in Columbus. Death is big business. A bunch of money grabbers who counted up every expense like human calculators. I didn’t actually see them do any work or show compassion to my mother. I will be permanently scared and nightmare her agony until my own dying days.
This was so unlike the hospice care my father received 20 years earlier by dedicated nurses.
Times have changed. Hospice is all about extracting money from the desperate and grieving.
4
@Pola
They act like vultures in the Hospital before discharge and again when they come to the house.
1
I have been a Palliative Care/Hospice/Critical Care Nurse, Author and teacher for over 25 years.
The real issue is that we live in a death-denying culture (except for the news every day.) There are not hospice or palliative care clinicians to care for the increasing millions of people who will be dying. People sent home from hospitals on "hospice" do not even know the questions to ask. How can they? We need to educate EVERYONE--healthcare providers as well as the public, as to what happens when a person is dying and how to best keep them comfortable. Read my book!--"Last Acts of Kindness; Lessons for the Living from the Bedsides of the Dying." (Amazon/Kindle) www.redwingkeyssar.com. UCSF Center for Education in Palliative Care will begin to address these issues by training family and professional caregivers alike in "what matters most," starting in 2019.
6
The issue is not a failure of hospice...it is a failure of the health providers and other team members to have not referred this patient months earlier. The patient had been on hospice one day. He was either already dying or transitioning to an actively dying state. It takes may weeks to prepare a patient and family for death. Hospice works when referrals are made appropriately.
5
@rgagne. You are 100% correct. Most seem to enter hospice with less than a week left. Why? I believe Physicians do not have this discussion earlier in the care of the patient.
3
We do!!! Patients reject it as giving up!!!!!
8
@rgagne At some time earlier along these lines someone* needs to explain to the family exactly what the euphemistic term "transitioning" means.. The language used which I know is meant to cushion the blow is just plain wrong. It shouldn't take weeks, it would simply require some real straight forward honesty.
We were very disappointed with Hospice. There were times when they never answered the phone in spite of telling us to call whenever we needed them. The only times we called were when my husband was in unbearable pain or we were confused about some directions we’d been given. So, no real phone help.
The last day, my husband experienced a terrifying bleed out, but survived it. After cleaning him up and instructing me on the use of the drugs, the nurse said her shift was over and she left. It was the chaplain’s first visit, and he also claimed his shift was over and left. I was horrified, afraid and angry about being abandoned by the people who told me they would be there for the family as well as the patient and especially when we needed them most. My husband died about eight hours later.
I am sure hospice is usually helpful, but there are many reports of it being otherwise. It was a traumatic experience for us and one I am not willing to risk repeating. I am glad our state now has legal death with dignity laws.
9
The failure here is that people don't want to accept death.
Life is a fatal condition.
No one gets out alive.
9
@EK
I agree. That's what makes people avoid hospice for as long as possible and call 911 once someone is on hospice. No blame here, it's just the human condition (in the U.S., anyway) to deny that death comes to us all.
At 90, the deceased had adequate time to both prepare the documentation for his imminent demise and instruct his children about his wishes.
If he did, someone dropped the ball.
If he didn't, what happened is a routine occurrence in a country where death is denied and healthcare is a conduit of tax dollars to investor portfolios.
7
Seven years ago my husband and I brought our full-term baby home from UNC hospital a few hours after her birth. During our mid-pregnancy ultrasound we learned she had full Trisomy 18, a condition incompatible with life, so we chose to provide hospice in our home to allow our family to love this baby to death. Our kind and gentle hospice nurses lovingly cared for our child, thoroughly educated us and checked in on our mental state as well.
After 30 days of love, kisses, and cuddles from siblings, extended family and friends our sweet baby died in my arms as we walked into the house after watching a peaceful summer sunrise. Hospice care allowed for our baby's short life and quiet death to be dignified and full of love and untethered to tubes and machines-- making me forever grateful for the service.
11
And this is exactly how Hospice is supposed to work and usually does. As a Hospice Chaplain I have had many such experiences and they outnumber the few bad experiences I’ve had by a wide margin.
4
I am a Hospice Chaplain.
It is without question the best work I have ever done.
But it is very hard for anyone to accept the reality that someone we love is dying in front of us and there is nothing we can do to change this. The truth about this story is somewhat different than what has been presented. The truth is that we should not be trying to find “fault” here. But we should realize that many patients come to Hospice care too late. Given the reality that we will all die at some point...the sooner a patient begins Hospice care the sooner the full benefits of this gentle care can begin. Doctors often fail to recommend Hospice care until much too late. They are trained to keep us alive...not to prepare us for death. But if they wait until a patient is “actively dying” to start Hospice care...there is very little that can be done but to try to keep the patient comfortable. A patient should ideally have weeks or months in Hospice care in the love and care of his or her family...not just a few days of struggle and gasping breath. That is dependent on doctors moving a patient into care at a point in the patient’s journey when we can do the most good. When we still have have the opportunity to help the patient and the family to come to terms gently with the elemental experience of the end of life that will come to us all and to exchange the love we share fir each other before we breathe our last.
12
The hospice agency promised me that my mom, a cardiac, could take all her meds if I chose their service. They promised me all sorts of things but instead sent a nurse who acted as if she were God. Further, they said nothing in advance about the white box of narcotics.
During the hospice nurses’s very first visit she went straight away to the box of narcotics and drew up a syringe. My mother, a retired cardiac nurse, drew her hand into the air and said, “No.” My dear mother knew what the nurse, who did not ask if my mother was in pain, was trying to do. I regret I did not tell her leave right then.
I kept a close eye on the narcotics during the nurse’s second visit (I wish I had destroyed them). She made no effort to ask my mother how she felt but instead told me that she would probably die that day.
The nurse returned two days later for what I insisted would be her last visit. While I was changing my mother’s sheets, the nurse rushed to my mother with a narcotic. It was all so fast and unexpected. The nurse said she was agitated. When I complained, she pointed to my mother, who was quickly knocked out, and said, “See, she is resting.” “But she just ate some ice cream,” I said. “And all she said was ‘please don’t let me fall off the bed’ while I changed her sheets.”
And what did the nurse say? She told me to go out and get some ice cream and “celebrate.” She said my mom would die that evening.
My mom died hours later. I did not celebrate.
6
I am sorry you had this experience but is not at all typical of the experiences most have. I know. I am s Hospice Chaplain.
1
That’s what so many have told me. But what can I do? I chose hospice so I have no right to complain.
1
I worked as a hospice nurse for six years, often doing admissions in patient’s homes. The fact that the family did not get all of the important information on day one is unacceptable. There should have been meds in the home to help lesson the feeling of shortness of breath, there should have been teaching and understanding of what would happen if 911 was called. This hospice failed the patient and the family horribly. I hope they’ve been reported and a thorough correction plan has been written and implemented.
8
@Donna Lawton
I am in 100% agreement with you. I am a former hospice nurse and was shocked in talking to a current hospice nurse/friend that the standard emergency medication box was no longer automatically provided to the family by this particular agency. It was considered an extra expense by the agency and that meds were only prescribed when symptoms occurred. They might be ordered ahead of time if the nurse had the good sense to anticipate symptoms. This is crazy.
2
Having worked in hospitals many years I think For Profit hospice is an oxymoron. People put on hospice for “failure to thrive” at age 95. FTT is a diagnosis of childhood and not old age.
People put on because they are 98 years old like my neighbor who has been on hospice for a year now. He was driving until they put him on hospice. He survives by not taking narcotics they offer him. Why he told me, he’s not in pain. His for profit hospice provides his WiFi connection for him but very little other services. But he is not one of their favorite patients because he has not died like they had hoped. He is alive despite of hospice care but they have made their money on him.
And yes, people who are put on hospice most of the time way too late in their disease process. But not in areas where hospice personnel troll hospitals and nursing homes hawking patients with any diagnosis they can send in to Medicare for maximum benefit for their for profit hospices. This can be a positive or negative depending on how much care the For Profit hospice will allow.
The real profit for For Profit hospices has been having the patient in in-patient status. Medicare pays $100’s of dollars a day for in patient hospice. Most have free standing in patient units or have contracts with hospitals and nursing homes for in patient care. It is a very lucrative business and the shear number of For Profit hospices should tell you something.
14
Most Hospice care in for profit.
ALL hospice care is strictly regulated by Medicare.
Ideally it all should be the same. Most of the time it is. I am a Hospice Chaplain who has worked in fir profit hospice. We give excellent heartfelt care and I am approached by people continuously to tell me of their wonderful Hospice experiences. Ideally all Hospice should be non profit...but like our flawed medical system this is not the case and probably will not be.
1
@William
That is not accurate. In patient skilled care hospices centers do not generate profit for an agency. Medicare's fixed rate for skilled nursing care is the same no matter where the patient resides. The rules about qualifying for skilled care with hospice are so strict for fear of denied reimbursement (which have closed many an agency's doors) that few patients get the care they actually need. Patient stays are extremely short, again because hospice care in the US happens so close to death. In-patient hospices never make it out of the red.
3
Hospice was amazing when my mother passed away several years ago. My sister, in the medical field, had been taking care of her for the last few years, and the stress was taking a toll on her as she was helping to deal with all of the medical decisions. The hospice nurse was brilliant and sensitive in talking to my sister about Mom's end of life care, and I saw her relax for the first time. At that point I realized hospice is about teaching the family to take care of their loved one in the final days, not so much about dealing directly with the patient. Sure, there is palliative care/pain management involved, but more importantly they show the family what to do. If the family can't deal with it, then that is when you call in the extra home nursing care. But the family is tied into the end of life decisions. We administered the meds, including the pain meds. On my Mom's last day, the nurse told us at her weekly visit that morning the end was near, and asked if we needed her to come by again when it was time. We said no, we could handle it, and several hours later Mom passed quietly with the two of us at her bedside, at home, where she wanted to go. We knew what to expect, what to look for, and how to deal with it when it happened. God bless the entire hospice profession...they truly are angels amongst us.
17
Another person who died in the hospital as a pin cushion. I see this all the time and it’s unfair. I often feel loved ones cause more suffering expecting patients to to live. We the healthcare systems are bound to protocols that aren’t made for the natural process of dying. So few get to die in peace when tangled up with the medical system.
6
Thank you for publishing this. We were so lucky to have the best in hospice care as we lost our beloved mother. After months of in home hospice we decided to avail ourselves of the respite care included in Medicare. It was almost Christmas, the overnight caregiver needed a break and we all needed a short break. Dying at home is a nice idea, but having a loved family member pass away in a beautiful well run hospice was even better, no panic, no phone calls, no stress—just helpful people at our side immediately when we needed support. We could just focus on the dying while the staff looked after us and also took good care of our Mom both before and after her death.
14
Hospitals use hospice to decrease their in hospital mortality and make money. When I transferred a patient to hospice who needed radiation treatment for bone pain, I was told that they would lose money caring for the patient and I should not do it again. Caring for the patient's pain should be their first consideration, not the dollar. Another patient required an intravenous medication to control his heart rate. Again I was criticized because this was not a pain medicine. I had to explain that no one would be comfortable with their heart racing at 140 beats per minute. All they wanted to do was push opioids and keep patients quiet. When a patient expires on the inpatient service, they then criticize the physician for not transferring the patient to hospice because this increases their in hospital mortality.
8
This is a flaw in the system.
Radiation is normally not provided by hospice as it is classed as a “life saving” medical procedure. It should not be. But the real issue here is cost. Hospice is reimbursed by Medicare. The funds available are not enough to cover expensive treatments like radiation for pain (not life saving) purposes. I know- we had to postpone my late wife’s hospice care for this reason. This issue needs to be addressed. It should be possible for hospice patients to receive this pain relief through radiation and to have this expense continued to be reimbursed by normal medical insurance.
1
As a pediatric oncologist, I can tell you this happens all the time. Even more so in pediatrics.
Families reject ahead-of-time education attempts designed to prevent this because they accuse the doctors of "giving up."
And when we did succeed in preventing it, that means physicians and nurses and nurse practitioners spent hours in the evening at the bedside, with no compensation for doing so. All the press about burnout in medicine is in part because of this kind of thing.
The heal care reimbursement system is nuts. The ten minutes it took an ENT to take out my son's tonsils was reimbursed in the thousands. The hours and hours at a bedside to discuss how a loved one will die is reimbursed maybe $50 at best.
26
I do not have much good to say about Hospice. My Mother broke her ankle due to lack of bone and lack of blood supply. She started having multiple strokes because the shattered bone was not healing.
Hospice only proved capable of reading the stroke diagnosis. They ignored the shattered bone, ignored her need for pain control. Hospice promised us that she could have more pain meds when needed, but when they were needed, they claimed they could not do it because stroke victims last a long time, so they had to stick with low pain control. She was in agony. Ten days later she was dead.
SORRY, they were NOT doing the best they could.
11
This reminds me of the death my father had. He was hooked up in ER to a ventilator (not my choice) for a few hours, then disconnected and he passed. It was invasive and unnecessary and I regret it went this way for him.
In the 19th century, dealing with dying was largely unavoidable: farm animals were killed, children routinely died of diseases (some parents would pose with their deceased child for photographers which were sometimes the only photo evidence the child ever existed), also accidents were not uncommon, etc. Wakes were held in homes (the term "living room" was invented to distinguish it from a part of the home where wakes were held).
In contrast to this we've become a many ways a prudish culture about talking about death. Woody Allen quipped once "I'm not afraid of dying, but I just don't want to be there when it happens". Good for a laugh, but I think many of us have internalized the sentiment and shift uncomfortably away whenever the subject is broached and the result is these ugly final hours in hospital ERs where no hospice patient should be dying.
13
@Jay - Another one of Woody Allen's quips: when asked "What do you want people saying about you 100 years from now?" he answered, "'He looks good for his age'."
1
My father rejected further treatment for cancer and came home to die: He said: "Now when you think I've gone, wait at least 15 minutes before you call any one. I don't want anyone trying to wake me up." He was so wise. That was 38 years ago and I still miss him.
42
I work in home health care. I am touched by the compassionate tone of this piece. Please remember to post the doctor's signed Do Not Resusitate order (DNR paper) in a conspicuous place, i.e. the refrigerator. First responders in many states MUST see the DNR or they are required by law to resusitate. It takes planning to die the way we want. Please do so.
27
I can't see it as the fault of the hospice agency-- though they might have tried harder to make sure there were the needed meds there after admission. I blame the hospital that d/c'ed him with an inadequate plan lass than 24 hours before his death.
7
@sd
I’ve been through hospice for my Dad and sister in their homes and with my Father-in-Law in a purpose built hospice. At home is far more challenging. Hospice can only come a few times a week for a few hours. However, we were trained and equipped to handle the challenges. They informed us how to keep the hospital from interfering with their wishes.
6
When my father was ill, in 1992, he told his children he had a DNR order, but wouldn't use it until he was 'really dying'. When he stopped breathing on a sidewalk, returning from a doctor visit, my brother resuscitated him. For this my father was taken off the hospice rolls. He was DENIED HOSPICE CARE in the large city where he lived. In those early days of hospice it was a very political new thing - in some places. I hope it is not still.
He died in my home a few weeks later, and 100 miles from that city. And with hospice care from our rural county's health department.
4
This story is very sad, but this man's life didn't have to end this way. He was 90 and had incurable cancer. However, he and the family waited until the last minute to start hospice. The idea of hospice is to help a patient who is going to die to prepare for death. Hospice helps the family prepare for the death as well, so entering hospice before a patient is actively dying will give both the patient and the family the tools they need to move through this difficult goodbye. Sadly, in our culture, we have not learned to make friends with death. We want to prolong our lives as long as possible and that leaves us in denial about the eventuality of our dying. If there is a lesson to be learned here it is that the reality of death needs to be addressed directly at the appropriate time. I am so sorry for this family that they were not able to make use of the resources available to them to ensure their father had a good death.
29
My experience with Hospice care is both good and bad. My grandmother died at home with wonderful primary care provided by my mother and thoughtful and informative coaching of Hospice professionals.
My mother too died at home, with me providing her primary care for three years following a catastrophic stroke that left her with left side paralysis. Friday afternoon prior to her death Sunday morning her defibrillator went off 30 times in between 3 and 7pm. At 30 I stopped counting. As her blood pressure dropped her defibrillator zapped her. She cried for her mother to turn it off. "Please make it stop!" Called Hospice. Nothing they could do except call the device rep who was boarding a plane at 3 when I called and would come directly to our house to turn the device off. He was 4 hours away. The torture ensued for 4 hours.
It was HORRIFFIC! My mother was tortured in the last hours of life because not one medical professional -- not her primary care provider, not hospice, not her heart doctor -- thought to ask her, "Rosie, what shall we do about that defibrillator implanted in your chest?" as she entered Hospice. I'm still angry. Still haunted.
I am sharing because if you know someone with a device in their chest please tell them they need a plan about when to turn it off as they enter Hospice. Speak up!
58
I’m so sorry. As my father prepared to leave the hospital for hospice last January we were told that if he had a defibrillator it would be turned off. He didn’t — but they made sure we knew that would happen.
9
Thank you for sharing this, Dr Lamas.
6
Hospice has changed so much since my mother's illness 20 years ago. My mother was slowly descending deep into dementia and dying of non Hodgkins-Lymphoma when she contracted pneumonia. She had an advanced directive and she had already often begged me to help her die which I could not do. But when her nighttime caregiver called me to say she was having trouble breathing, I told her not to call 911 because they would take her to the hospital and she didn't want that. My mother wanted to be able to die at home and pneumonia would allow her to do that. In the meantime, I called the service that had been helping me hire round the clock care and she called Hospice for a nurse and oxygen. While I drove down from Connecticut, her night time caretaker grew afraid that my mother couldn't breathe and called 911. She told them that I (her daughter) didn't want her to go to the hospital and they asked her if she wanted me to be arrested!
Apparently, as I learned from my husband recent death, Hospice no longer provides round the clock nursing as it did in 1998 when my mother died which makes it much more difficult for the family members.
15
I'm a floor nurse that has done a fair amount of home hospice. I'm sorry your hospice provider was for profit.
12
Yes, to the commenter who stated simply that we all just do the best we can under very challenging and heartbreaking circumstances.
The fact is there is no perfect scenario, try as you may. I had experienced working for hospice and seeing to it that my elderly father died at home as he wished.
Yet when my younger brother was diagnosed, the shock was so great and I was so dedicated to helping him through his punishing chemo and radiation treatments, that in order to function (this included caring for an elderly mother) I had to go into the most uncharacteristic denial.
Every time the palliative team mentioned hospice, I wished them all dead. So did my brother. I have been told that I am a gracious, compassionate and intelligent person.
It didn't matter. I had to cling to the hope that he could survive, against all odds, otherwise I was not able to function.
No, I would never have predicted that I would have reacted that way. After all, did I not pontificate to all who would listen that the benefits of hospice were incalculable, just as our gentle readers are doing now?
Shocking, isn't it?
The truth of the matter is, each scenario is different. My brother was leaving in his prime. He contributed so much to the world. I eventually put him in a hospice facility after tending to him in his home for his final days, as he had asked me to do. He died there on Christmas Day in our presence. It was hard.
We all did the best we could.
28
You decided against hospice, a difficult but common choice. This seems to be about a man and a family that had made a different decision and was failed by the medical system and specifically his hospice team. This is not your story.
@TM
My sympathies on the death of your brother. I can totally understand what you experienced. When someone you love so much is dying, you can simultaneously know and not know. It's just too hard to grasp.
A dear friend recently passed and unfortunately made a last trip to critical care - his situation was not so obvious. It became immediately apparent that his systems were shutting down, and he was too frail either to be sent home, or even wheeled across the street to the hospital's hospice wing. So they put him on a very quiet ward in the main hospital, and brought hospice care to him.
I marveled at how comfortable they made him, and how peaceful his exit was. Key ingredients were an oxygen cannula, regular low-dose morphine to ease his breathing (he'd developed pneumonia) and a slow glucose drip, which the nurses explained helped keep the possibility of seizures at bay. After we'd been there over 24 hrs, the team even wheeled in a coffee/tea and baked goods cart for us.
He would have preferred to be at home, but the palliative care and staff support was wonderful.
The situation described in this article isn't a hospice failure. If the hospital had known the patient was that frail, they should never have discharged him, or not have let him go without making sure they family had all they needed from the palliative hospice toolkit, and instructions on how to use it.
18
@Mary Ann
We had the same experience with “comfort care” for my parents in a hospital room. If hospice providers can’t offer the needed help at home then we must provide alternatives. It was a blessing that they were kept out of pain in their last days and hours, a blessing all should have access to.
6
Better starts with early and regular conversations about goals of care. Patients and families who would benefit from hospice often decline the service until the active stages of dying.
Our failure comes from an overall unease with including death in our culture. How can it be that someone with advanced age and a fatal disease has not considered death and dying?
Hospice is often invited in too late to make an impact. The first visit can be overwhelming in terms of education, paperwork, and introductions to build trust.
I find this article oversimplified while it brings to light an important issue most of us will face.
Thank you for the discussion.
21
The American capitalist medical-industrial complex routinely fails the living. It leaves patients destitute as well as ill so often that it's no longer newsworthy when that happens. So it should be no surprise that the medical-industrial complex also fails the dying and their families.
The failure of hospice (especially when it's a for-profit company) is just one more reason the United States needs to join the rest of the world in providing health care to its citizens rather than wealth care to the executives and shareholders of corporations that comprise the dysfunctional fragments of our medical-industrial complex. There is surely a good reason why every other "advanced" country has rejected our capitalist approach to health care.
39
When my father died, he was home, the first meeting with hospice completed. He lasted a day - the decision to bring in hospice was like a permission slip for him to decide to let go.
My mother knew what would happen and didn't call 911, but let him go. She at least had been given a drugs to help him.
Hospice is not some magic panacea that makes dying easy - it just makes it easier, and less invasive. People need to know this, and need to know that hospice means we expect the patient to die.
What everyone needs to know, **as soon as the decision is made** to let someone die at home, is what dying looks like. People don't necessary just flutter their eyes shut, like on TV, with someone standing by quietly to utter "He's gone."
My family found the hospice workers to be everything one would want from hospice - kind, and helpful and sympathetic. I'd have to say, just don't bring anyone home until you've discussed what death really looks like, and what you can do to ease it.
38
People don't die like on TV or movies. It is often messy and hard. It involves gurgling and secretions and drool and spit and pee and maybe poop. It is hard to watch your loved one die. But calling 911 will bring the inevitable rush of interventions with IVs and ET tubes and drips and it is PERFECTLY WORTHLESS, as he or she is going to die anyway, no matter what. It will only increase their suffering and not their life, at least not by more than a few minutes or hours. Families need to be coached on what to expect and what they will see.Maybe a video that is required watching of a real person going through these last stages could help a family decide if they actually can do this last gift for their loved one. May families are so unprepared and really get their idea of a death-bed from movies. We treat dogs better than humans. A kindly syringe of euthanasia medication would be most welcome at that time.
50
Many years ago, when my grandmother was dying from cancer, I remember my father -- a veteran of four years' spent in World War II as an Army officer -- putting his fingers in his ears and literally howling when the doctor tried to explain that no medical intervention could "save" or even extend her life. She had made it clear that she was ready to go, but her 57-yr old son wasn't emotionally capable of accepting her wishes.
This pathetic response to reality is more typical than not of families' reactions to end-of-life situations. I don't know what the answer is, but I do know that if given a terminal diagnosis I plan to depart this world by my own hand rather than subject myself to last minute hysterics like "Call 911!" by relatives who are frantic to postpone grief.
5
Great article. Remember the Republican rant on “death panels”? Democrats were trying to get this right and were castigated mercilessly for it. This should be a human issue - not a political one.
42
Many years ago, my grandmother was dying from cancer. I remember my father -- a veteran of four years' spent in World War II as an Army officer -- putting his fingers in his ears and literally howling when the doctor tried to explain that no medical intervention could "save" or even extend her life. She had made it clear that she was ready to go, but her 57-yr old son wasn't emotionally capable of accepting her wishes.
This pathetic response to reality is more typical than not of families' reactions to end-of-life situations. I don't know what the answer is, but I do know that if given a terminal diagnosis I plan to depart this world by my own hand rather than subject myself to last minute hysterics like "Call 911!" by relatives who are frantic to postpone grief.
18
I think I would much rather die in an opium den than in an ICU or a hospice. It would be cheaper, less painful, and I would be treated with the dignity of a paying customer.
42
It’s time we started talking about hospice, but not like you think. In Texas, like some states, hospice is so loosely regulated that it has become a license to murder. When my mother’s doctor put her on hospice in 2007, we were thrilled. She had been doing remarkably well with COPD, and her doctor believed she had many months if not years ahead of her. By day two on hospice, I had to call 911. In the ER, the doctors told me they used narco-reverse to revive her. She had been given a leathal overdose of morphine. I called police, but they refused to file a report, saying she was on hospice. The hospital Chaplin told me a similar horror story of his wife going home on hospice — alive and walking around — only to be dead within a hour when the hospice nurse intentionally overdosed her on morphine. He was unable to convince the DA to file murder charges because she was on hospice. Not too long ago, a large hospice facility in Dallas was shut down and the owners prosecuted when it was found they were committing Medicaid and Medicare fraud. They were also urging nurses to end the life of the patients as soon as possible — this was documented and reported, patients killed with overdoes of morphine. But no charges were ever filed for attempted murder. I’m sure there are many good hospice workers out there who help people die with dignity, but lack of regulations and oversight makes hospice patients vulnerable to sociopaths and greed. It’s time to shed light on this horror.
11
I’d like to clarify that when my mother was put on hospice we were at first confused because she did not seem to need it. But after her doctor told us that it allowed her to receive free medications and other perks like music and massage therapy, not to mention they would be with her during the day and night, relieving me of 24 hour care, we were thrilled. I became concerned the first day when a pharmacy truck delivered sacks full of morphine. I was told that patients with COPD improved with small amounts under the tongue. I would never have allowed it if I’d known that hospice was going to give her lethal amounts.
10
@R.S.
Medicare payment for hospice care is a single payment. So the sooner the patient dies, the more money the corporation makes.
9
@memosyne
Wow. This is so different from our family's experience. My mother was in hospice for 1 1/2 years at the age of 99. No morphine until the very end of her life, and then just enough to aid her comfort. It always comes down to the individual facility, I think.
2
I was lucky. My sister was a nurse and as we sat with my mother as she was dying -- the first time I saw someone actively dying -- while I had not been prepared for the labored, gasping breathing - my sister remained calm and explained this was part of the process. In addition, I worked with pulmonary physicians who told me afterwards (because I asked) that in rare circumstances where patients had been resuscitated after such breathing, the patients had no memory of it (which also was a comfort to know). We also had been told clearly by hospice - at the very beginning - not to call 911 and why. I wonder if my sister had not been a nurse, would hospice have explained to me in advance about the gasping breaths? I hope so but do not know.
In retrospect, I think of this gasping breathing as the reverse of someone being in labor to bring a new life into the world - and more as a person laboring to exit the world. And felt honored to be present during this transition.
As a result, unlike my remaining sibling, I did not fear sitting with my younger sisters as they died -- both under hospice care. Each sister's dying process was different. A kind hospice nurse came to my sister's nursing home and sat with me during my sister's last hour, which was an immense comfort.
We used non-profit hospice groups; hospice care began early enough (not in the last week or days). That also meant we could not be in denial as to the ultimate outcome.
32
Thank you, Dr. Lamas for compassionate care and sharing.I do not feel you or hospice failed because the DNR may have included override power as did my husband's DNR. Trust and agreement for choices between family and patient is important.
From tennis court to biliary stent placement to our 46th anniversary, the day of diagnosis, 10 days passed. "Inoperable pancreas cancer" and either palliative chemo and interviews for trials or go home and enjoy life. My husband just wanted to live until Christmas when every year our children and their children come home, a boatload of love time in our lives. He chose chemo and lived another 9 months, Christmas, birthdays, including his, and Mother's and Father's Day.
My husband chose a DNR because he wanted to be home with family, and he was. We contacted hospice care within weeks of diagnosis and completed paperwork that we held until needed. My husband wanted to have as much independence for medical choices as possible and hospice provides all care until patients choose to end that care. Our lengthy list of questions was answered candidly.
I was his full-time caregiver because I work from home. Eventually Medicare was called for training, weekly nurse check, and supplies. When the time came we texted hospice, "It's time." Hospice caregivers arrived within an hour, added a date to the paperwork, and the loving care from end-of-life caregivers transitioned all of us for those final moments less than 2 days later.
17
That's a pretty narrow point of failure, other than maybe getting the paperwork and training all settled before discharging the patient there's not really much in the way of a falling by anyone. Better an unwanted resuscitation than the converse, you can turn off the machines but you can't bring back someone who hadn't settled for sure on a dnr.
2
@Neill I have to disagree with your comment "Better an unwanted resuscitation than the converse..." Emergency intervention in the dying process doesn't restore the individual to the condition they were in just before they began to die. The result is often broken ribs, intubation that prohibits speech, and, occasionally, brain damage due to oxygen deprivation.
The typical person who has been brought back from death's door is, sadly, a shell of themselves. They are heavily medicated and often hospitalized in a costly ICU facility that will NOT be paid for by health insurance if the person was in a hospice program. Death typically occurs within a few days of the intervention.
Calling 911 for a person with a terminal diagnosis who is already close to death is cruel and inhumane. Television has given us the misguided impression that an ER facility will buy the patient a little more time with friends and family. This is only true if it's what the patient has indicated they want for themselves. The phrase "Let me die in peace" is an excellent guideline for caregivers and should always take precedence over "Quick! Call 911!"
19
Hospice is a wonderful way to help people to go through the last steps of life , easing the fear and pain of dying.
I am totally for assisted suicide when my day to leave this world will come .
Why should I want to prolong my suffering and that of my beloved ones ?
Dying is the direct consequence of living and still we go trough an unimaginable quantity of pharmaceuticals, mechanical aids , human help of any sort , priests etc just to prolong physiologically our cardiovascular system to pump a few more breaths and a few pints of blood .
We grant our pets a dignified death , why not the same with us ?
I know of all the ethical quagmires, religions, politicians etc .
I truly hope that when my day will arrive there is going to be a specific legislation to allow me to depart this planet swiftly and painlessly.
The Netherlands are way ahead of us in guaranteeing a dignified exit .
They are right , they know how to respect life .
18
I am grateful for my meeting with the hospice nurse, caring but pragmatic, who sat down with me to outline what to expect within the first 24 hours of my mother's transition to comfort care. I am also grateful to the staff at her memory care facility who had seen this as part of their work on many occasions. I think it is more difficult to manage when someone is at home and you have long hours to yourself, without other caregivers, and are compelled to make the reflexive but understandable decisions the author describes this family making. I remember the first 72 hours, listening to the dreadful labored breathing. I recognized it as the "death rattle" referred to in books. What I hadn't known it how long it would go on for. All you can do is support the midwifery of death with as much patience and compassion as you can muster.
21
I do feel that this was a failure of hand-off, something my family also experienced with hospice. From the sound of it, doctors expected the man to live for a while - at least a few days - that's why they didn't go over everything the first day. Could it be (like in our family case) as soon as the patient went on hospice they started administering morphine? A person overdosed with morphine just stops breathing. My father was expected to live a few weeks - but he died 15 minutes after getting a dose of morphine. He was comatose, sleeping, not in any pain, so we feel he was killed by an unnecessary morphine dose. But no one would listen to us, we couldn't prove anything, and the outcome would, within a few weeks have been the same anyway. But I believe hospice offs a lot of patients with excess morphine, perhaps out of a genuine belief the patient needs it "to be comfortable."
7
He didn’t suffer. That should be enough.
14
@Al King
If I am lying "comatose" and terminally ill, I certainly hope my physician administers plenty of morphine to me. I do not want to lay unconscious for weeks in that condition, like my grandmother did. I have made this clear to my family.
1
I just want to say that I was grateful for this article. My 89 yo father died of CHF in August. He worsened quickly and hospice couldn't get the paperwork sorted. They never arrived. We spent 4 days watching my father die with no help. So many phone calls, I screamed and I begged and I cried. While he could still speak, I kept asking if he wanted to go to the hospital but he was adamant about staying at home. So I stayed stubborn and honoured his wishes. His doctor finally came to the house himself and ordered liquid morphine. There was no sleep for my daughter, my brother and I. It was the hardest thing I've ever been through. This article gave me, gave us, the chance to acknowledge the gift we gave dad by allowing him to stay home - and acknowledge the strength it took to do so. I'm not sure why the system broke in our case but I know that plans should have been made sooner. I'm grateful hard conversations were had in the end and my father's wishes were met, but it should not have been this way.
27
@JP, I am so very sorry that your hospice experience was not what was expected, and yes, your choice is one of the most difficult when that decision involves our loved ones.
Our experience was quite different and I am sure because we contacted hospice care early on to answer our questions, complete paperwork, and be ready when the time for final care would occur. The morphine and other medications arrived and instructions were given for administration and dosage. Drug therapy doses, while fairly standard, produce varying results as each person will react/respond slightly to greatly different. My husband's tolerance was unusually high and our hospice nurse provided detailed instructions on dose times and changes in amount. Knowing his wishes, our agreement, and the trust between caregiver, patient, and family was maintained, though not without great emotional pain. In the last hours, the liquid morphine dose was increased, and the expression of pain in his face vanished. We had time to place our hands on his to give him our love and safe passage.
Your strength, courage, and love for your father was your final gift of respect and love. Thank you so much for sharing because it helps in my own time of grief.
10
@JP You demonstrated a sacrificial love for your father in his time of need. In time the very painful memories of his last days will fade, and you will find comfort in knowing you loved him so much that you bore the pain so he could have the comfort of home and his loved ones by his side. Having been with both of my parents in their final days at home I know the pain, but I also know healing comes in time.
7
I’m so sorry for this family. My father experienced similar problems with the hospital to hospice transition. Transitions are where most medical errors occur. This is a classic example of the failure of a medical system that is so partitioned that no one knows the entire story of why a person has entered the system. Everything is run for the convenience of the system parts, with no thought paid to the person or her family. This is apparently true in most medical systems, world-wide, although I’ve heard rumors that The Netherlands has managed to shift the focus to the person. I would be interested to hear more about how they have accomplished this feat. In the meantime, buyer beware. Plan ahead. Talk with you caregivers and family about what you want and put it in writing. A POLST is an outstanding document to have easily at hand.
10
When my grandfather died from colon cancer in 1983, he was at home in hospice. A nurse was there nearly full-time (three nurses a day) to help my grandmother w/his care. My grandmother died in May at home in hospice, at 97. Her long-term boyfriend, 87, was responsible for most of her care. Hospice sent a nurse once a day for an hour & the family hired a caretaker to be there four days a week for an eight-hour stretch. When my grandmother started having trouble breathing in the middle of the night & her boyfriend called the hospice, the hospice told him it was normal. As she got more agitated, he called my mom & aunt. When they arrived they called the hospice again & in a very annoyed manner the hospice told my mom to give my grandmother a heavy dose of morphine. My grandmother lapsed into a stupor & died w/i hours. The difference in hospice care from 35 years ago to now is astounding.
17
Ativan for agitation.
Much of hospice care in recent years has shifted to a for-profit status. I believe the quality of care has suffered as a result.
14
Xanax is actually better than Ativan for severe anxiety and agitation.
My 95-year old father entered hospice care with a dnr order in late December in 2017 due to escalating heart failure ptoblems. For the last two years he
I am going through this very scenario as a caregiver for my aunt (she never had children). My cousins and I want the best care for her, yet she isn’t ready to leave her home and doesn’t want hospice care to come every day “yet”. She is no longer able to drive and is extremely frail.
I am paralyzed about what to do next. Hospice sends a different nurse when they come. I can’t move into her home and leave my family, and she’s not ready to move in with me.
The hospice workers have not instructed us how to clear her lungs and which meds to give. My aunt still wants to have agency over all of her decisions, and while I admire that about her, it’s the next steps which need to be discussed and I have no idea which hospice
member to reach out to.
6
First of all, you need to find out exactly what hospice will provide. Hospice is never a 24/7, round-the-clock, in-the-home option. You will need to hire private caregivers for that. Secondly, call your aunt's physician who is in charge of her hospice and arrange an appointment with the physician and the head of the your aunt's hospice to meet with you. Finally, if you do not have your aunt's permission to release medical reports to you, please do so immediately - the hospice director should be able to help you. Good luck!
16
@angelina and @Lynn, adding to angelina's advice, you may also change your hospice caregiver service. Interview those within your area thoroughly and make an informed choice. We chose a hospice care recommended by our cancer care staff and the result was great than our expectations and my husband's wishes. Regardless of choices, the decisions needed for end-of-life are painful, so include investigating some type of short-term individual or group support and/or therapy. Thanks, Angelina.
2
Thank you for this article and its important message: no matter how overwhelmed a family might be at the end of a loved one’s life, they nonetheless need to be prepared. Hospice prepared me and I’m forever grateful. Ten days ago, I was able to stay by my grandmother’s side as she passed away knowing what was going to happen. She died the way she wanted and that meant so much to my family.
13
Guarantee that the hospice hired by this family was a for profit corporation, not a non-profit. The difference in the level of care is striking. I am not condemning the caregivers of the for profits, their directive is to be as fast and efficient as possible and go strictly by the books; capitalism in action. Everything, down to each key stroke of everything they do is monitored with the bottom line, profit above all else, in mind. ALWAYS GO WITH THE NON-PROFITS, they offer a totally different level of care. Having had experience with both, there is no comparison.
26
As a former hospice nurse it saddens me to think of someone dying this way. It is so important that people understand that getting into a hospice program early is critical for the best care for the patient and their family. So often, hospice is seen as a last resort measure and one where there is no more hope. Nothing could be further from the truth. In fact, studies show that when patients receive hospice care earlier they often live longer. This is due to good pain management, enhanced nutrition, and symptom management.
Knowing who to call as the patient deteriorates can not only be comforting to the patient but to their families as well.
No one should have to die the way this gentlemen did especially when the circumstances surrounding it are preventable.
24
This is an awesome apology from the medical field. As a nurse and having worked with the dying, before hospice, I can understand how things don't all get done at once. I suspect hospice was at fault here for not giving the most important information " do not call 911". This is so terribly painful to a family who are trying to do their best. Unfortunately, many folks reach hospice as the folks are taking their last few breaths. Maybe getting more info out about hospice would be a good start. I am amazed at how little the public knows about hospice.
15
@heysus It wasn't until my mom was until my mother passed away recently that I realized hospice could have been an option for her. I wonder if any of her doctors ever mentioned it to her, but we never discussed it. I wonder if she would have died much sooner if she didn't have so much fear of what it would be like to die. In the end, after she had already been intubated for days, the doctors finally did ask her if she just wanted to be made comfortable so she could pass and she did not hesitate to nod her head.
2
Hospice can not offer euthanasia. That’s according to law, not ethics. Maybe critical care docs don’t get it because they can treat this distinction with a wink and a nod. The hospice care in this case was compassionate and comprehensive. The dying did not go well but unless you are prepared to take an active part in it, there will be some adverse outcomes.
2
@G
I don't see what this has to do with euthanasia.
4
Hospice worked for 2 close family members and a close friend. Blaming them for a family member’s panic is unfair. The very first day they tell you not to call 911. This story seems disrespectful of the great nurses and caregivers who work for hospice.
Even without instruction from them the son should never have started compressions...
4
@EG
Fine, but if they're going to tell you not to call 911 (which of course I get), they also have to tell you what to do if the person is in extreme pain or has some other sort of crisis. Hospice isn't supposed to be "Oh well if he has a hard time you can just sit there and watch - or call us and we'll come over some time tomorrow."
15
@EG You wrote, "the son should never have started compressions."
That is an unkind statement that places blame when, in fact, the son did what he was instructed to do from his sense of love for his father. In moments of great emotional conflict, we often listen to the voices hope when hope is simply not an option. But we listen because we think we can help.
8
My mother died in April under hospice care at 92. The hospice care was exemplary. But the POLST, Physician's Order for Life Saving Agreement) was just as important.
But prior to her entering hospice, we filled out a POLST agreement with her nurse practitioner. When she somehow fell and we had to call 911 to get her off the floor, I showed the EMTs the POLST agreement; they stopped everything while reading its terms. After deciding to take her to the ED, the doctor carefully reviewed the POLST and asked at each point if she was within the terms of the agreement. My mother and I had agreed on no DNR/DNI and what level of treatment she wanted at various points. All the medical professionals abided by its terms.
With a POLST even prior to entering hospice, the level of medical intervention was limited to what she wanted. It is as important, if not more important, because it is in effect prior to hospice. The situation described in this article most probably wouldn't have happened if the doctor would have had the POLST agreement to review. And the family would have had time to review and think about these options prior to hospice.
A few weeks later while in hospice, my mother died at home, the day after her 92nd birthday. Her last meal was birthday cake.
19
Everyone thinking about hospice needs to understand the end result: the patient dies when God or nature decides, not impeded by human actions. When one of those two agents acts, you let it happen. It should be topic one before anyone signs anything. The patient dies in one of the following 4 ways. When they occur do nothing. If people do not accept that basic rule, they should not be in hospice, period.
6
@Michael Blazin
I think the point is there is supposed to be SUPPORT. It is fine to say the idea is to do nothing - but this is not a rational thing, it's a very emotional thing, and people can and do (all the time) imagine that they are on board with "doing nothing" but then when a crisis occurs, they suddenly realize what "doing nothing" is going to look like in real life - it isn't necessarily going to be a peaceful slipping away, with a few sighs and a few final wise words, a little pillow fluffing and "Love you, Dad."
Hospice is supposed to PREPARE people for what they will need to do in these circumstances. "Doing nothing" while a loved one is dying horribly and painfully is just not something people are going to do, most of the time, even if they thought it's what they wanted, or what the loved one wanted. Hospice needs to either BE THERE or they need to have carefully reviewed with the family all the things that might happen and the possible strategies they can use to ease the pain or distress BEFORE it happens.
11
My husband was informed by the oncologist’s nurse that there was nothing else that could be done for my husband, while my husband was hospitalized. We were then asked if we would like to have my husband go on hospice, which we agreed to. My husband was discharged without anything put in place. We were told that the facility usually recommended by the oncologist had no openings. I was left to find hospice care on my own. Hospice left us with a box of meds, and a telephone number to call. They would direct us as to what med to use when the time came. Oxygen tank was delivered to house, along with a walker and commode. Oxygen was used non-stop pretty immediately. The machine made a really loud noise that was constant. I was not prepared for that. No one came to the house to go over the use of the meds in the box. Husband had a seizure while sitting on top of the closed toilet seat while I was changing the bedding. Luckily his head fell onto the room’s corner, and wedged in, he did not fall to the floor. I thought he had died, and started screaming. He was too heavy to lift and take back to the bed. Surprisingly, he revived. At that point I realized, after almost a year of care taking while he fought bladder cancer, that I could no longer manage his care and wanted him in an in-patient facility. The facility mismanaged his care and he died suddenly, within 2 days. It was not a pretty death, & memories of it haunt me to this day. I wanted him to have a good death.
30
@Barbara Bedick
My mother lived with the racket of an oxygen machine for the last few months of her life; my partner had a tank. The difference was so great, that I've specified no O2 machine in my living will.
3
@Barbara Bedick
I have the same issue. They mismanaged my wife of 35 years care. If only I had been there they called me at the 6am bed check so I know she had gone much earlier. I live with guilt and remorse everyday. I was a caregiver for over thirty years and the hospital accepted none of my advise.
2
@Barbara Bedick I am sorry for your pain.
5
There were three die-like" nouns and only one "pass" in this article. That's good. We need to use the noun "die" and its derivatives far more often. "Die" has the sound of finality necessary when discussing death with families of terminally ill patients. I'm 26 years past the last time I turned off a ventilator (I was a neurologist), 12 years past the time I told the nursing home to keep my 91 year-old father comfortable and not to send him back the hospital (fortunately, we had the money for a sitter the last three days, because the NH was uncomfortable with his and my decision). I'm maybe only 5 years beyond the time I realized the best thing I did as a neurologist was to help patients and families through the dying process. Some of my colleagues told me it would be different when my parents died. It wasn't; allowing my parents to die quietly, in no pain, with my wife and me at the beside was the second best thing I've ever done in my life (marrying my wife was the best). I kept my promise to them. Well done, Dr. Lamas.
52
I did hospice for 5 1/2 years, and in our hospice (as I would think in all) the families all were explicitly educated about end-of-life symptoms, and were explicitly told to call hospice, not 911 (and reminded on a regular basis). We educated about CPR causing rib fractures but not changing the outcome. Extensive education was necessary for some family members regarding these concepts. Nevertheless, there was always a percentage of family members who would call 911, whether they misunderstood, forgot, or ignored our advice, or panicked, or were confused, it does happen. Assigning blame to any party is probably not constructive. I will say that in almost all cases, of the thousands of patients I dealt with, our instructions were followed, families were educated appropriately, and the dying process was not overly or unduly stressful on the patient or the family members, and that suffering was avoided or minimized by the efforts of our hospice nurses and docs.
28
In the case highlighted in the article, they DID call hospice first and were left on hold! They only called 911 after the hospice service failed to take their call! Placing blame is proper in this case.
12
I think what this story, and others like it, show is that we as family members can’t be in denial. Planning in advance, at diagnosis, and bringing in hospice/palliative care early on can help avoid these last minute confused situations and give everyone, especially the patient, more comfort, once the initial shock of diagnosis subsides. Hospice was not at fault in this situation.
11
Hospice was at fault. They left the family of a near-death man who had chosen hospice without instructions on what to do. Then they failed to take the family’s call when his breathing was a problem. The Hospice service did not act properly.
12
I have spent the past 11 years wishing hospice had prepared me for my mother’s final days. I sat with her alone, dialing hospice at least once every 3 hours for 48 hours begging them to help me bring her relief. They kept telling me it was “normal.” That her body was simply shutting down. “Labored breathing,” may be the technical term, but it is not an accurate term. It involves a gurgle that makes it sound as if the person dying is drowning.
I wanted to call an ambulance. I wanted someone to help make it stop. But I also wanted to abide by my mother’s wishes, so 11 years ago, I sat and watched for two days as my mother slowly gave way to death. From my perspective, it was not the peaceful death - the quiet slipping away - we had imagined, but we did it together. As my mother requested.
I will always be grateful that I was able to travel the journey with my mother as she went through her terminal battle with brain cancer, and I will forever be grateful for the support of hospice throughout our home-based journey. But I told them then, and reiterate now, that families must be trained in what to expect during the final days. It was horrific, and I was completely unprepared.
62
I don’t think hospice telephone support for the care giver is sufficient. I remember leaving messages and not getting timely call backs. We need another human being at our side, experienced with seeing people die and helping them in death, to be with us and guide us. Mere telephone support felt cruel and insufficient. I felt totally alone and helpless in knowing what to do. I just tried to do my best.
16
@Melinda McMullen
You did exactly the right thing. You can't stop that gurgling noise, you just have to wait it out.
I watched my father and my beloved husband die from cancer.
That's just what happens.
I am so sorry it still haunts you after 11 years... all I can say is there is no relief they could have brought, what they told you on the phone was the truth.
You did everything possible, and it sounds like your mother died peacefully, at home, with someone she loved.
You did everything right! Please take some solace from that.
13
@Melinda McMullen
I'm so sorry. No one should have to do that alone. It just seems to me we're barely civilized if we can even allow someone to handle that all on their own with no support other than a voice on the telephone.
I hope you've recovered as much as possible. You did your best to fulfill your mother's wishes.
7
Thank-you Dr. Lamas. My father has CHF and is now at home and on hospice as this horrible disease continues to weaken one of the strongest and healthiest men I have ever known. I was with my Dad as hospice first came to visit. They asked him "what is it you want?" He replied, "to be at home and in no pain."
He now has a DNR bracelet. We know it will be hard, and scary, as his breathing gets worse and he gets weaker. However, we know he's going to be able to leave this world truly the way he wants.
10
This story, and indeed all conversations, about the struggles, errors, failures and horrors suffered at the end stages of a person's life is why I've made plans to die in my own good time, at my own hands, without anyone's bothersome intervention.
It's going to be my death just the way I want it.
34
I have been an RN for 35+ years. It is absolutely true that no one takes ownership of a dying patient: not MDs, not social workers, and especially not their relatives. Not only do they only hear 25% of what they are told, they only remember 10% of that. In our age of in-utero fetal surgery and other medical marvels relative expect everyone can be returned to the state of physical and mental health of ten years ago. Even relatives of patients in hospice care think a death at home is like they saw in the movies: maybe like Melanie in Gone With The Wind where she was lucid, at peace, even smiling. In this country we refuse to face the unpleasant.
58
When a person or a family chooses hospice care, it becomes the responsibility of the hospice providers to prepare the family for what they will face. That should have happened here and it did not.
15
@NYCSandi The relatives you trash are people who are in one of the most stressful situations in life. They are not trained medical professionals. Their loved one probably has been under intense medical management and they have been told to stay back and let the professionals do their job, but now all those professionals are gone and the family is alone and responsible for the care. They may never have even seen a dead body, much less watch someone die. They may never have dealt with diapers on a bed-ridden adult. There are boxes of new meds, bunches of old meds (all on different schedules), new machines (does that O2 thing need maintenance - no one mentioned that), remember to turn the person every hour, why is this strange thing happening, what do I do if they refuse their meds, etc., etc. - it's overwhelming. You are right - they probably only hear 25% and remember 10%, but in most cases it's because they are stressed to the max and not because they are in denial. And hospice is great, but the reality is that it is a consulting service not a care delivery service.
26
Hospice is a way of sharing in deTh as we share in life. It can be hard and heartbreaking, yet a wonderful experience
4
As a long time ER doc who has seen this over and over, have to say: This makes good copy but there is a lot more fault here to go around that you cite. This patient was sick IN THE HOSPITAL and probably for a long time. There was plenty of opportunity for the family to come to terms with what was going to happen and to ask and plan and understand. And plenty of time for the doctors and nurses to help them to do that before discharge. The paramedics also could have asked clearly what was wanted and if a DNR was in place and offered only comfort care and transportation if desired. But stop blaming "WE" exclusively all the time. "WE" are here to help, we usually do a very good job and everybody has a hand in this.
22
@DocG
There seems to have been some breakdown in communication in this case that led to a less than optimal outcome. More information would be helpful from the author of this article. If the pt had breathing issues in the hospital why was he sent home without a script for liquid morphine? Was there oxygen in the home? To what degree had the family been instructed to manage his (pesumed) shortness of breath by his pulmonologist, Dr Lamas? These are basic questions. He was still able to take sips of juice, a function usually absent the last 2-3 days of life, and no mention of periods of apnea. Very possibly his rapid decline was associated with an event of some kind. There might well have been some indication of his nearing death that could have been recognized on D/C from the hospital or by an experienced Hospice RN, but not necessarily. Death comes uniquely to all in a myriad of presentations. Though this patient's death was not the "smooth landing" we all hope for is distressing, especially for the son giving compressions, it does not seem particularly unusual. There is always room for improvement and I hope this
article will spark a deeper consideration in our understanding of how a good death might unfold.
15
@DocG
You write, "There was plenty of opportunity for the family to come to terms with what was going to happen and to ask and plan and understand."
You may be a long-time ER doctor, but have you ever lost anyone?
Doctors refuse to tell you "it's time to give up, your loved one is going to die."
They might say "it's time to call hospice" and leave you to connect the dots.
But the fact is, the doctors are the ones who encourage you, the family, to keep fighting and hoping. Because telling you to give up sounds like acknowledging their own failure, and they don't want to do that.
I've lost two loved ones to cancer. I understand why doctors do what they do. But you can't blame the FAMILY for "failing to come to terms" with something the DOCTORS refuse to discuss openly.
21
I have been a family physician in Maine for 30 years, caring for patients in the office, nursing home and later, in hospice care. This is a travesty of care. I realize that Boston is not rural Maine and the systems are more complex to deliver care. The hospital staff, if not the primary care physician, should have clearly had DNR and a plan in place. In Maine, we use the POLST form (physician orders for life sustaining treatment) which includes a form that remains at the home clearly showing the DNR status. There should be consequences for the hospice provider, with financial penalties. That is the way to get their attention.
18
Financial penalties for the hospice provider will only be added to the bills the patients have to pay in the form of increased insurance premiums.
There is enough paperwork already. Cut down on the forms and costs, don't add more. The only result is that you bankrupt the patient and his family.
6
The issue here is that once the patient, the family and the doctors understand that there is no hope for recovery, hospice should be put in action. The patient might not need hospice for 2 or 3 months but at least the paperwork and all information about care would have exchanged hands. The family would be better prepared even if they are not ready yet.
28
@AV Unfortunately, some do not have two or three months. I have know several where the final decision for hospice is made at such an end stage that the patient has only one or two DAYS left and dies very soon after coming home. I agree more education is needed about what to expect before they even bring the patient home.
11
Information that should have been included in this article is that Medicare pays home hospice providers $160 per day, every day, whether they see the patient or provide any service, or not. And Medicare will not pay for hospital services while the patient is enrolled in hospice -- they will not pay two providers. Of course the idea is that - to be blunt - when you enroll in hospice you have agreed to die. But, if you are receiving palliative care for a terminal illness and fall on the way to the bathroom and break a bone and choose to go to the hospital for treatment - which can't be done at home - you have to immediately terminate the hospice contract or Medicare will decline all the hospital bills and you will be billed. You have to call the hospice answering service and request that the termination be faxed to the hospital billing department. Did the family in this article know that? Did the doctor/author know it?(Please, no comments that a dying person shouldn't have a broken bone repaired). Many families wait to enroll patients in hospice but many sign up early having accepted the inevitable. It's a growing business and I could write another comment on navigating the hospice system.
66
Hospice paperwork does not have to be in place for doctors and nurses to counsel the family and let them understand what they will be dealing with at home. It takes very little time to give a lot of good information in a sensitive and kind manner. The formalities of hospice billing do not have to obviate the ability to properly inform and counsel at any time in the course of the treatment.
13
@Meg It is not correct that a person on hospice has to terminate hospice care in order to enter the hospital and have a broken arm cared for. The hospice agency can and should pay for that care. I am a hospice Executive Director and we regularly pay hospital bills. Medicare does not look kindly on patients being discharged for a hospital stay and then signing back onto hospice when they are discharged. Such behavior is common but not appropriate. The hospice agency essentially becomes the patients medicare provider and should pay for all care necessary to keep the patient comfortable. A family should call the hospice first and they can help navigate appropriate care, including the ability to have a nurse visit the patient 24/7/365. It makes me sad that not all hospices provide the care they should.
30
@MI New Yorker
When my mother broke a bone and was taken to the hospital I called Care Dimensions. The first thing they said was we had to take her off hospice care immediately. The hospital billing administrator stayed with us until the paperwork was faxed. We got more, faster attention from her than from the medical staff. Arranging for an in-home follow-up x-ray was difficult. That's what happened to us. If that is not the case for your patients, fine. I'm trying to help people know what could happen so they will be prepared. Care Dimensions told us they would manage her care. Their staff was well-intended but made numerous errors in providing services. I'm not saying don't enroll in hospice, I'm saying that while it would be nice to rely on others, you have to ask questions and be vigilant.
8
Reading this brought me to tears as I remembered our 25 year old daughter’s last hours with us. She had been being treated for stage 4 stomach cancer and it was becoming increasingly apparent that treatments were ineffective. The home health agency nurse finally told me that “no one wants to tell you this - your daughter is dying - you need hospice now”. We called our son to tell him to turn around and drive back home after he had just left to return to Chicago. Hospice was at our house within hours, providing us with information that was very hard to hear but in our hearts knew was happening. Our son got home and bunked on the couch in the family room to be close to where we had set up a bed for our daughter. That evening, our daughter called her boyfriend and her grandparents to tell them she loved them. In the middle of the night, our son woke us when his sister suddenly sat up and was clearly distressed. Our first instinct was to call 911 but then the hospice nurse’s instructions kicked in. Our daughter passed away gently with all of us with her in our home, which was where she wanted to be. I never felt that the system failed us in not calling in hospice earlier. Hope is what helps you to cope and it is hard to accept letting go of hope. As the author has written, the medical community struggles with how to express the words needed for a peaceful death when the family is still clinging to hope.
89
This is such a difficult situation. Our own family’s experience, with a dying mother recently admitted to home hospice care, and us (the family) having no training in how or when to administer the meds that could keep her comfortable, is very similar to this situation. We did not panic and call 911, but we did have a forceful phone call with the on call hospice staff, who had to make an unscheduled emergency visit in order to give us some minimal training that we should have had from the beginning.
Let’s not criticize a family or patient for not coming into hospice care sooner. Sometimes situations are not as clear cut as all that. The responsibility for thinking ahead and planning for the next stages does, in fact, lie with hospice. They are the experts in death and dying. That’s what we rely on them for - to keep our loved ones comfortable in their last moments.
47
I would suggest our healthcare system is a product of our legal system. "Death with dignity" will never be a thing unless end of life is graced by angels instead of lawyers.
Hospice clearly did not prepare this family for the reality of death.
My mother volunteered with Hospice for 30 years after my father died. I thoroughly understand their purpose and role in the process of death and grieving. When time came for my mother, hospice spent a week preparing us, but when the time came and I knew my mother was on the way she said, "Oh John, help me." There is no such thing as "dying peacefully." We rode it out together. That's all I can say. And thank goodness for hospice.
43
@John
Thank you for your comment. Sometimes you can be prepared for death, and accept death, and still be afraid of death.
1
Thank you all for your heartfelt and professional comments. One specific area that creates problems.
In updating my directive, I spoke with not only my lawyer but also emergency room doctors. There was a gap in the language that medial professionals look for in an emergency when seconds count and what my lawyer suggested as current legal language in the calm of his office.
10
This is a sad story and reflects poorly on our culture, but not on hospice. It tells a story of a family that most likely did not start having conversations about end of life until it was too late. They should have been more prepared, when after "a series of hospital stays for incurable cancer" they were surprised when he stopped breathing? I do not blame them, I blame all of us. The tragedy is that we are all too afraid to talk about death. As a result we panic, call 911, and ask the stranger who answers the phone to tell us what to do. Then we blame the system when we don't like what choices we made, because we were too afraid to consider the options.
92
@Sarah J. I know NYT doesn't consider seniors to be human beings, but many families DO consider their family members to be human, even though they are old. You probably consider that silly and misguided, but some people are still just old fashioned, and actually LOVE their family members and want to keep them alive. Because death is final; once you kill someone, there is no chance for a redo.
2
@Sarah J. Well, it is a bit the fault of hospice, which didn't answer the phone when the relatives called them first. And which didn't tell them to not to call 911. That was one of the first things hospice told us.
6
@Sarah J.
Seriously you are blaming the family?
1
The system is most definitely flawed on all levels. The medical community through no fault of their own is used to treating for a cure rather than having a conversation when they know a cure is no longer the answer. Individuals are being referred to hospice extremely late. The average length of stay on hospice depending on the research origin is 7-30 days. In this vignette, it is so sad because this elderly gentleman had been in and out of the hospital and had all his documental “ducks in a row” but the family was unsure of what to do. The hospice comes out to do an information visit which is just that, solely to relay information on hospice services and if the family so chooses then the patient is admitted to hospice once discharge from the hospital occurs. If the discharge occurs late in the day then generally an appointment for admission would be made for the following morning and the family would be told what to do if an event happens during that time.The family is also generally overwhelmed when the word “hospice” is brought up as our Western culture does not talk about these important things. This vignette also shows a very common occurrence of dialing 911 when the family is not all on board. Hospice is not what failed them, it is our ENTIRE medical system and society that have not been able to have these important end of life discussions on an event that is as important as the event of bringing a baby into this world.
43
Thanks for writing this but I have to agree that it it is more of a systemic failure than a hospice failure. Hospice and palliative care need to be brought into play much earlier and there were definitely signs that much of this could have been addressed earlier. With that said, the family did as much as they could do given the father’s symptoms and you, Dr. Llamas, did the right thing by keeping this nightmare from being prolonged. Going gently from this world is not easy and we need to work at making it more possible, especially in situations such as this.
39
This was definitely a failure of both the health care system/hospital as well as the Hospice Care System. Hospice should have not worried about overwhelming the family at a time that the father was DYING, time was of the essence. In addition, my own personal experience with hospitals is that no one takes ownership, not the physicians, certainly not the social workers. I made 3 trips to the ER with an elderly family member in one week and each time had to present the Health Care Proxy, the Living Will and the DNR. Where do they go when they are scanned in? Oh hey Social Worker, can you assist me in finding a Rehab placement for my family member? Sure, here's a printout of local places. Useless. No one believes this until they go through it themselves.
52
@Coppertopmom
"Hospice should have not worried about overwhelming the family at a time that the father was DYING"
Exactly. It wasn't hospice overwhelming the family, it's the fact that a loved one is dying that overwhelming! Hospice is supposed to be there to HELP, to LESSEN the overwhelm, not just say well gee we're all overwhelmed here, we'll be back another day.
The printout of local rehabs, yup, been there. They tell you 1) it's all on you to choose a place - perhaps you should drive around and visit some of them? you'll need to make a dozen phone calls first? get recommendations, research them online? check various databases, Nursing Home Compare, look for complaints filed against them, read quality and patient satisfaction surveys, etc. etc. and ........... 2) oh and we're discharging him TOMORROW.
11
I am an internist, geriatrician, and Hospice & Palliative Medicine physician, board certified in all 3. I also had my wifes grandmother on home hospice not too long ago. This article is a snippet of my every day, and agree this title is very displeasing. It’s not the shortcomings of hospice that this situation happens, it’s the shortcomings of the medical system as a whole. DNR/DNI discussions and honest prognostication are not a unique skill reserved for HPM physicians and nurses. It’s something that medical residents are supposedly taught about on an occasional lecture but never given the time to practice. It should be done by all medical professionals. The hospitals need to discharge patients, the residents need to study for that exam, the physicians see that next patient and nurses turn the neighbor. This responsibility of honesty and prognostication falls to the HPM team, who are strangers. Patients/families often ask if I spoke to their oncologist or pmd, and I have to tell them that they are who called me. I’m asked why am I the doctor who is telling them the stage or prognosis of the disease for the first time. I’m told off and thrown out of rooms by patients/families who have been told that their disease is treatable when the prognosis is less then 6 month at the time of diagnosis. I’m the Grim Reaper. We then struggle with how to prevent burnout in HPM physicians. We need more open and honest care from day one, not just compassion on the last day.
128
@Mike
My aging mother died a comfortable death in an ECF, with family at her bedside. She received low-dose morphine so her respirations were eased and non-labored. She was aware we were there and was calm.
Two months earlier, one of her femurs was snapped at the acetabulum due to an inattentive move by a professional nurse. After ortho surgery with spinal anesthesia, she did not regain ambulation. She had osteoporosis, but had no other medical problems & on no meds. During surgery she was overloaded with IV fluids, and soon developed pneumonia from the fluid accumulating in the bases of her lungs. In spite of several rounds of antibiotics, pneumonia (friend of the dying) kept returning. She could not return to her retirement facility.
We focused our energy on her comfort for the last several weeks. Our mission was to assure she had a comfortable death. She was at peace. We feel at peace for being at her side and participating in her last days on earth
My Advance Directive w DNR is in place, but it be honored?
18
@Mike
Yes, and yes. This is why I think the current communication abyss between, say, cancer treatment and hospice can never be bridged with the system we have now. Many oncologists relate to their cancer patients with a never-ending supply of "hope," up to and including the patient's last breath. Unfortunately, most patients (not all) and most families (not all) are in enough denial to go along with this fantasy.
It is quite unpleasant to tell someone they are dying. It is extremely unpleasant to hear it. Many families who realize, and regret, later on, that they were deluded about their family member's actual health status, were complicit at the time in maintaining the charade.
35
As a Patient Advocate in my local hospital, I’ve noticed more than once that a patient and family hear what they want to hear...When a doc informs a family he/she has done all they can do for the patient, many families don’t want to hear that - although intellectually families know the end is near, emotionally they are not prepared.
24
The coup de grâce should be administered by family; that’s not what a doctor is for.
3
Dr. Lamas’s article, and in particular the headline, certainly disturbed this reader, an experienced hospice volunteer and a board member of a Massachusetts hospice devoted to the best possible end-of-life experiences.
As a volunteer, I have joined support teams that include doctors, nurses, social workers, health aides, and chaplains. The end-of-life journeys I have witnessed successfully guide and support both patient and family with companionship, massage, music therapy, and more. I have listened to patients talk about their wishes for family. I have borne witness to families struggling to let go of someone they love.
Even though hospice is available 6 months before death is predicted, doctors are reluctant to suggest hospice, and families often wait until the last days to call in such support. These conversations and documented end-of-life wishes should begin prior to a health crisis. And once a serious illness is diagnosed, palliative care can begin, helping improve a patient’s quality of life.
When disease progresses, patients can transition to hospice. With early hospice, families have time to learn about the process of dying and how to handle symptoms and medications. Hospice social workers and chaplains help resolve emotional or spiritual issues, allowing families to focus on making the best of every day.
I hope that stories like this one do not discourage readers from seeking professional guidance on how to leave this earth in the kindest way possible.
26
@Lisa Alcock. I'm a hospice nurse, and agree that the headline is awful. The health system failed in the 'handoff' from acute care setting to hospice care at home. The MD orders to emergency responders form can be done in the hospital, and can be done in MD office at any time. That particular form can be redone by pt and MD anywhere, anytime and scanned into electronic health records. Hospice teams can visit patient and family in hospital and obtain signed consent forms before patient leaves the hospital. Then that first visit by hospice team can be focused on key tasks - for a patient who is clearly very ill, explanation of how to use symptom relief medications is done and family is taught how to give, why to give, and to call hospice for phone guidance at any time. Medicare requires that all hospice programs provide medications to manage symptoms that often arise at end of life - pain, trouble breathing, agitation, nausea and vomiting, fever, excessive oral secretions, and constipation. Very big hospitals tends to be so focused on getting pt out the door (and the bed filled by another acute admission) and so the care handoff is full of gaps....and patient and family fall through it!
53
@Lisa Alcock
I commend you for your work as a volunteer but you are not involved with the practical aspects of patient care and do not have to deal with the consequences when Care Dimensions does not inform and educate families and fails to provide vital services correctly- wrong medical equipment ordered, delayed drug deliveries, expired meds in care packs, etc. I support the idea of hospice and advocate it to friends but I tell them not to rely on hospice staff to take care of everything particularly if care will continue for months. You must be vigilant about asking questions and checking everything.
6
Perhaps my comments are tangential to the core issue of this article. I read a comment to a previous article in the Times discussing issues surrounding the medical system and death that the writer was going to have "Do not resusitate" tatooed on her chest. Although the writer may have been speaking ironically, that simple clarity may have mitigated the unfortunate, confusing situation for the patient and family in this article. Perhaps a medical alert bracelet could serve the same purpose.
8
@Janet
It wasn't ironic. People really are doing this, and in at least one case I'm aware of, the courts upheld a DNR tattoo as a valid directive.
13
One thought keeps coming to mind... we all just do the best we can at all such moments
30
My 93 y.o. father just died while under hospice care. People don't understand that hospice should be involved much earlier than usually happens. My sister, a medical professional, taught me this. Sadly, she died 2 months prior to my father, at home, under hospice care, and in doing so, taught me how to ensure our father was at home, at peace, and as comfortable as possible. Our team was amazing, talking me through some terrifying moments, giving support and gentle guidance. It gives me great peace knowing I was able to give this final gift to my father, from his entire family. Call hospice early; be prepared to be scared and brave, simultaneously; lean on the hospice team. I wept when I realized his time was near; after his death, I feel only gratitude and tranquility.
137
@Susanne Morello Your experience with hospice sounds wonderful, and what we expected - but unfortunately did not get. Not all hospices are created equal!
2
My husband died of brain cancer in Hospice. When he was transferred from rehabilitation to the acute care hospital, he said we had a good run. He was paralyzed on his left side. His eyes were not working well. He put him in a skilled nursing facility, but they said he had to leave because he was not making progress. I went in tears to.my primary physician and he did the referral to hospice. We brought him home on December 23 so he could be with family on Christmas. Hospice sent an aide over every day and a nurse several times a week. We also had a chaplain who visited several times and who did some pastoral counseling with my son-in-law. They gave us a sealed box of drugs to keep in the refrigerator in case they were needed. They also provided additional drugs to calm him and relieve pain. He was in hospice for four months. Twice a nurse came in the middle of the night when he had a fever. On the day he died, they talked me through it on the phone. After he died, the chaplain and a nurse came over. The chaplain called my pastor. The nurse called the mortuary and got rid of the extra equipment. She also took inventory of the remaining drugs then disposed of them with the cat litter. Other than losing my husband of 43 years, it was a positive experience. I hope it helps others.
120
After my mother died in hospice care they refused to take back the shower chair or potty thing because they had been used.This seemed like a ridiculous waste. Luckily her home health aide knew someone who could use them.
1
@davisucr: I"m so sorry for your loss, but this is how hospice is SUPPOSED To work when everything is done correctly. It cannot make death less sad, but it can handle death with dignity and freedom from pain and fear.
Thank you for the sensitivity with which you approach this article. I was with my mother when we first engaged hospice for palliative care for her after she was diagnosed with pancreatic cancer. It was clear that my mother didn't understand how soon she would die, less than four months after diagnosis.
Yes, when a patient is in the hospital, a DNR should be discussed. I've been routinely asked if I have one when I've visited an ED. But it's not reasonable to expect hospice to do everything on the first day.
My experiences with hospice for both my parents has been wonderful. I would have to look far and wide to find more caring people, for both my parents and their children.
32
A bit unfair to the hospice folks. When a person has a DNR and if s/he is conscious when s/he was sent home, you'd think family members are prepared somewhat. True, parting is hard even if you have prepared for years, but "so-and-so died peacefully with the family beside so-and-so" belongs only in the obit. One possible outcome like that is if the person was all doped up.
This is not an attempt to make the family more miserable but people need to know death is not pretty; alas, a lot of people who committed suicide have thought otherwise.
12
@Bos "One possible outcome like that is if the person was all doped up." It certainly sounds like he was, and that likely is the fault of hospice, which (IMHO) uses morphine a bit too liberally. It sounds like they expected him to live for a while, gave him a heavy dose of morphine, (under hospice guidance) and that caused him to stop breathing, no?
This article should be titled When Doctors Fail a Dying Patient. Nearly 30 percent of Medicare hospice patients receive hospice care for a week or less; half of them for 30 days or less. Why? Because many doctors wait too long to refer to hospice. A hospice director once told me, “Oncologists dial 911 for hospice.” But there is no reason to single out oncologists; it's the U.S. health system that has run amok. Hospices are left to pick up the pieces of lives left by futile treatment and disregard for patient self-determination. Had this gentleman been referred to hospice care six months before his death, as allowed, he could have spent quality time with his family. His symptoms would have been managed by a hospice team trained in palliative care. He might have even lived longer with hospice than with treatment. In my role as CEO of Hospice Foundation of America, I often talk with families whose loved ones are dying after numerous attempts to cure, but they don't understand care options. It is clear that in spite of efforts to increase advance care planning (the government now actually pays physicians to have these conversations with Medicare patients), doctors still don’t want to talk about death. As a society, we need to educate people, including doctors, about the advantages of hospice and have end-of- life care conversations with family before we are on death’s doorstep. Hospices need a chance to provide good care, which can only happen with timely referral and admission.
99
@Amy Tucci
Thank you. I totally agree. I've worked as an RN with dialysis patients for 20+ years, and I can say that of all patients, these are the most in need of end-of-life planning and never get it. The nephrologist swoops in with the bad news "Your kidneys have failed and you will die" but quickly follows with the good news, "But it's ok because we can do something about that." They are seen by the patient and their family as the hero and so God-Almighty-powerful that they can control even death. The environment in a dialysis clinic is surreal, and it takes an extraordinarily honest and insightful patient to see past the illusion and ask honest questions. But then the team fails them by not being honest in return, showing, as you said, a disregard for self-determination. And then Medicare steps in and perpetuates the notion among the staff that we have the ability to make the patients normal and keep death at bay indefinitely. And it is the patient who pays the price, enduring the relentless intrusion into their lives, and they are stuck in a no-man's land between life and death. I would love to see a permanent hospice presence in the dialysis clinic, alongside the dialysis staff, so that the patients would be as familiar with them as they are the dialysis nurses, techs, and doctors. Only then would the patients really have a choice, because "no treatment" for kidney failure IS actually a choice.
11
It's a network of failure. Having been through this I can attest to the fact that medical staff need to be more honest about a patients condition and hospice needs to do a better job educating and assessing families abilities to take care of a loved one at home.
29
@Landlord
You are right. I worked in health care for 20 years. Been around dying, death and taking the deceased to the morgue.
There is a huge learning curve difference between me, and a family who has never had been around death except a funeral home.
While I hope I wouldn't have speed dialed 911, and started CPR (knowing from work how futile it is on a person with those medical conditions), I can imagine the panic of a family not knowing what dying looks like.
What really needs to happen for is us to remember no one gets off this rock alive. Make our plans and wishes known way before we are a semi conscious heap. Have those honest talks when we can hopefully put things into place or at least learn about them.
17
I am a bit put off by the title. This was not a hospice failure, it was a failure by the patient's physicians for not referring him to hospice sooner. The patient, from your descriptions, should have been referred 6 months prior to this event. That is the failure. What was that hospice to do when they got a referral literally the day before the patient died? Your title works to increase the issue for people like him, that hospice fails. It is the wrong message. What impacts the ability of a hospice provider to avoid stories like this is physicians having conversations with the family sooner, offering hospice as a solution sooner. It's physicians understanding that they have a duty to those they care for to give them the power to make better choices by having honest conversations about EOL care and offering hospice as a choice when it actually has the ability to make a difference. This was not a hospice failure it was a failure of that man's physician.
118
@deborah
While I agree that the failure was systemic, I do think hospice should not leave the family alone on the first day with no idea what to do in a crisis. The whole idea of hospice is that death is, well, imminent - it might be weeks or months, but it might also be tomorrow. I understand there is a mountain of paperwork - believe me, I do understand, I have been through it - but surely emergency instructions should be part of the package from day 1.
This didn't happen to us exactly as described here, b/c my mother was in a nursing home, so we the family did not need "emergency" instructions. But I do well recall the hospice "intake" - the hurried, harried gal who rushed us through the voluminous forms, her irritation, her repeated complaints about how overworked she was and how burdensome the process was to her, how she would look at her watch every time one of us asked another question.
I'm sure many people have had different experiences with hospice ...
16
@DW
For ever one really great home hospice experience, I know more who were really unhappy, and chosed differently when the next time end of life care was needed.
My friend had a similar experience as yours with the intake. Not the best way to make a first impression.
1
@deborah
My mother died three hours after my first meeting with the hospice team. It was only then that I discovered that hospice should have and could have been brought in months before and how much it could have eased those last months not only for my mother, but for me.
Let me be clear: My mother had an advance directive and we had discussed her wishes many times with her physician, even deliberately not admitting her to the hospital several times over the two years before her death.
I have no idea why her physician didn't refer us to hospice until the day I called him to tell him my mother was fainting every time she sat up. Hospice came the next morning, and they couldn't have been more caring, compassionate, and informative. They left, planning to set everything up that afternoon.
Two hours later, when my mother began to have trouble breathing, I called the number they had left for me the nurse on the other end of the line talked me through the last moments of my mother's life calmly comfortingly as the two hospice nurses who had just met with me turned around, arriving just after my mother drew her last breath and died peacefully in her own bed.
The hospice nurses called all the appropriate agencies and stayed with me until my mother was taken away. I am forever grateful to them, but I have never forgiven my mother's physician for depriving both of us of their help for so long when it could have helped so much.
5
There ARE hospices that are appropriately staffed with the capacity to educate and respond to prevent a catastrophic event like this. Most of them are not-for-profit and have an experienced and well trained staff, from the board certified palliative care physician through the entire team - chaplain, social worker, nurse, and aide. JH
25
@Jane Heaton, M.D. P.F.Ryers, M.D.We
I agree. As a retired hospice nurse, I told each family on the admission visit that sometimes patients die just after admission because they "know" their family is supported. A "seasoned" hospice nurse could have made a difference in this family's life and their father's death.
19
@Barbara...good point. Planning could include asking how "seasoned" the hospice staff and preparing the family accordingly.
I've been asked about advance directives many times by health providers. What I have NEVER heard is, "Oh yes, I see we have your advance directive on file." I don't know what happens to these documents that supposedly go into my file, but they are never again seen. Don't count on your regular hospital being able to find your advance directive no matter how many times, or how recently, you have been admitted and submitted one. Keep a copy with you at all times. I have a copy of mine on my phone, as well as copies of other family members' advance directives.
82
@Madeline Conant
You are so correct. This has happened over and over with loved ones. The process has to start all over and in their compromised state they have to make sense out of mumbo jumbo jargon and you hope they got it right like the first one they did way back when they were well enough to study the document and ask thoughtful questions.
25
@Madeline Conant
Ah the phone - that is very good advice, thank you.
5
@Madeline Conant
The completed forms can be scanned and send to MedicAlert. The appropriate wording will appear on the wristband or such as appropriate.
reply to Kathy -- only those with health care proxies/living wills or whatever can elect hospice -- no one else can. Especially in these suit-prone days. When my late husband died under hospice care in 1996, I was lucky that the hospital didn't require a living will -- heck -- he died without any will. A fellow hospice grief session person was the "partner" of the guy who died -- she was allowed to opt for hospice -- might not be allowed to these days
7
this is a lovely and touching tribute by a physician; it is true that the family should have had better preparation by their health care providers but also true that grieving families can easily be overwhelmed. their pain and trauma are so sad; but the sincere and heartfelt contribution and desire to learn and do better by Dr. Lamas impresses me deeply. That legacy is in part due to the gentleman who died- knowing that his sad ending helps to improve the lives and deaths of others is a significant point too.
32
After watching several young friends die, I became trained hospice volunteer. Later, both my father and aunt passed away under hospice care. Both should have been under hospice care weeks or months before the process was actually executed. The ill in our society are so resistant to agreeing to hospice care, as they consider it a death sentence....giving up on life. Hospice does not hasten or encourgage an end of life, but rather helps one go with dignity in a familiar environment, without the torture of emergency efforts to continue life. Death is inevitable, but our society refuses to embrace this idea. Our medical system is still focused on saving/continuing a life at any cost. We need more education about the purpose and benefits of hospice care, to both the patients and the family/caregivers.
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@Rosanne James
Something absolutely needs to be done about this huge stumbling block: forcing people to say, "I'm dying," keeps people out of hospice care for far too long. We need to let people opt into palliative care and certify that they are voluntarily rejecting curative care, without saying those words. For far too many people, it means giving up, and they won't do it.
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Since this gentleman had been hospitalized several times prior to hospice being called in my thoughts are the physicians and hospital system failed him. I can completely understand how the paperwork can take awhile to proceed with the election of hospice benefits. I have elected them for both my mother and father so I have personally been through this as well as been a hospice social worker and in hospice administration. The primary care physician, oncologist and medical team at the are the ones that knew his condition the best and quite possibly should have called in hospice sooner. It is not fair to put all the blame on hospice without looking back at his medical history and disease progression. He should have never had to die like that but more than just hospice was involved in my opinion. Where were his doctors and the hospital social worker with the repeated ER visits and cancer that was not being treated? Everyone plays a role.
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@Kathy I totally agree. He did not suddenly on his last day of his hospitalization become a candidate for hospice. Since he was being discharged to hospice, the hand off should be started much sooner and the family educated sooner.
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@SB
It may be that this family heard, and didn't want to have hospice yet. "It's too soon for hospice" until it's too late also applies to family sentiment. Remember. sometimes families are frightened of what is coming (despite hearing it over and over and over from physicians and staff in clinic and hospitals), or continue to have hope that their loved one will actually pull through one more time. It may be the family never heard that, with all those hospitalizations. But more likely the family was not ready to hear it, even with very skilled and empathetic conversations with the hospital's Palliative Care consult team. Sometimes the heartbreak happens with an expected death because family-- or the patient-- were just not ready to do any differently any sooner.
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@SB
I basically agree, but I'm going to play devil's advocate - just because there is such a wide variety of possible scenarios. If someone goes on hospice, and dies the next day, it's always going to look like hospice should have been called sooner. But that's hindsight. Statistically some patients are always going to day the first day they go on hospice. (As someone indicated above, some patients seemingly die right away because they are now assured their family is supported.)
It shouldn't be used as some kind of indicator that hospice wasn't called soon enough.
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