My 93-year old mother died of heart failure after several months of rapidly declining strength, lucidity and heart and lung function. Two weeks before she died hospice concluded she wasn't sick enough for hospice. When her assisted living facility staff found her unresponsive the morning she died, they called an ambulance and sent her to the hospital, despite the fact that she had a DNR order, and without calling me first. When she got to the ED she was transferred to the ICU despite the ED physician's assessment that her kidneys were failing along with her heart, she was completely delirious and could not breathe on her own. One ICU nurse manager finally came to talk to me and asked if I really wanted her in the ICU, and when I responded that it made no sense to me whatsoever, they transferred her to a comfort care room where she died within minutes. It was the hardest thing I have ever had to do, and yet it was absolutely the right decision. I only wish I'd known more of what to expect at the end, and had been more insistent about her care earlier, because I know her death could have been easier and more peaceful if I had.
16
A hospice team, "...refused to believe that she had less than six months to live..."? I had no idea that one's time left to live was sufficiently unambiguous that even hospice teams could challenge what you say is so difficult to predict.
I find that attitude suggests either incompetence, arrogance or an excuse for being too busy. Perhaps I have been lucky because my experience with hospice doctors and staff is that they recognize people can live longer (or shorter) than predicted. Shocking.
I find that attitude suggests either incompetence, arrogance or an excuse for being too busy. Perhaps I have been lucky because my experience with hospice doctors and staff is that they recognize people can live longer (or shorter) than predicted. Shocking.
12
7 years after being diagnosed with CHF, my 55 year old mother simply failed to wake up one day. It was probably the best end for her illness she could have had, albeit sooner than her family had been led to believe.
10 years later, the last days of her father's life were excruciating as he struggled to breathe. The only thing the doctors could do for him was to offer morphine with the clear statement that it would suppress his respiratory function until he stopped breathing. Once it was administered, they estimated he had no more than 4 hours, which was correct. At nearly 90, he was ready to leave this earth.
I now have another too-young family member with CHF. I have been too cowardly to ask him if his doctor has discussed that his time is limited.
10 years later, the last days of her father's life were excruciating as he struggled to breathe. The only thing the doctors could do for him was to offer morphine with the clear statement that it would suppress his respiratory function until he stopped breathing. Once it was administered, they estimated he had no more than 4 hours, which was correct. At nearly 90, he was ready to leave this earth.
I now have another too-young family member with CHF. I have been too cowardly to ask him if his doctor has discussed that his time is limited.
8
Even in the 5 states with a death with dignity law, to qualify for help in ending your life, 2 doctors must state that you are expected to die within 6 months. As noted in this excellent article, there is no way to predict how long a patient with CHF will live. Therefore the doctor cannot provide the drugs to end your life. Before you get too weak, get Derek Wolcott's book Final Exit, and assemble the items needed to take your life before you end up suffocating to death. Prepare yourself and your family and take your death into your own hands unless you want to suffocate.
he/she must
he/she must
9
My dad died of CHF 29 years ago. Then, at age 55, he was too old to be considered for a transplant. In this age, he'd have been a great bridge to transplant candidate with a VAD. In the end, it's pump failure. It's as sad to watch at 16 as it is at 46. I've taken care of hundreds of CHF patients in 15 years as a PA. It comes down to a number of factors:
1. A multi-disciplinary approach - providers, RN, dietary, home calls, pharmacists. Close follow up, who to call when, giving an understanding of medications is crucial.
2. Patient buy in - equally as crucial. This is a progressive disease and it does not go away just because you don't want to have it anymore. I have numerous colleagues who have diligently documented discussions with patients and families. Patient's don't want to hear they are dying inasmuch is it is difficult to have that discussion in the first place.
3. Early palliative care - goes with #1. The goal is not "better", the goal is comfortable with as much symptom control as possible.
4. Realistic conversations about code status - DNR does not mean do not treat but days saved off a ventilator are better days for everyone. It is extremely reasonable to not want to be intubated or have rib breaking CPR for futility's sake. It is far easier to move to hospice care when someone is awake to make those decisions, than to terminally extubate someone in the ICU.
Heart failure just down right sucks. Advanced therapy doesn't always mean the inevitable won't happen.
1. A multi-disciplinary approach - providers, RN, dietary, home calls, pharmacists. Close follow up, who to call when, giving an understanding of medications is crucial.
2. Patient buy in - equally as crucial. This is a progressive disease and it does not go away just because you don't want to have it anymore. I have numerous colleagues who have diligently documented discussions with patients and families. Patient's don't want to hear they are dying inasmuch is it is difficult to have that discussion in the first place.
3. Early palliative care - goes with #1. The goal is not "better", the goal is comfortable with as much symptom control as possible.
4. Realistic conversations about code status - DNR does not mean do not treat but days saved off a ventilator are better days for everyone. It is extremely reasonable to not want to be intubated or have rib breaking CPR for futility's sake. It is far easier to move to hospice care when someone is awake to make those decisions, than to terminally extubate someone in the ICU.
Heart failure just down right sucks. Advanced therapy doesn't always mean the inevitable won't happen.
9
Mostly we hear about heart attack and sudden stoppage not long term demise by heart failure.
4
An excellent article. My father was diagnosed with end-stage heart failure and put in a home hospice program in February. Then something strange happened. With the loving care of my mother and only a prescription for a diuretic he began to recover and was released from the program 3 months later. He continues to thrive, at the age of 92.
8
If doctors had this discussion with my dad, it is no wonder he chose to ignore them, and just drop in the parking lot at the end of a work day. He was only 53 and an overweight smoker. He never even got his hands out to break his fall, judging from the forehead bruise. I think he just fell.
He would have hated a slow death and hospitalization. We, his family, never believed him when he said the doctor never said anything to him about changing his habits. He just prepared his estate, and prepared for that day when his God called him home. I guess he got lucky in that sense; looks like you can't count on a merciful swift end, even from heart failure.
He would have hated a slow death and hospitalization. We, his family, never believed him when he said the doctor never said anything to him about changing his habits. He just prepared his estate, and prepared for that day when his God called him home. I guess he got lucky in that sense; looks like you can't count on a merciful swift end, even from heart failure.
5
I want the first heart attack to be king sized and do it job right away.
Failing that give me drugs and plenty of them so I can get out painlessly.
I think simple assisted dying would save people ( sick and related ) many
problems of various types.
Cheers
Al
Failing that give me drugs and plenty of them so I can get out painlessly.
I think simple assisted dying would save people ( sick and related ) many
problems of various types.
Cheers
Al
7
ER physicians must be better trained to recognize overt symptoms of end-stage heart failure, such as marked swelling in the legs in those with existing heart disease. My father, who had been a cardiac patient for decades, arrived at the ER with a very swollen shin, ankle and foot--a classic sign of worsening heart failure. Although the ER was aware of his cardiac history, the doctors decided it must be an infection, gave him a script for a Z-Pak, and sent him home. A few days later, he had a massive (but not immediately fatal) heart attack, which lead to a miserable and totally unnecessary/unwanted stay in the ICU--complete with horrible episodes of ICU psychosis--before he was finally discharged into home hospice, which is what he would have wanted right away had the ER doctors had a clue about his obvious signs of severe heart failure. Once at home in hospice care, he soon passed away painlessly with a blessed morphine assist.
9
I have dilated cardiomyopathy, diagnosed in 2012. It is true that not much information is given by the medical community I have to do with. So like I do with anything I didn't understand, I did my own research to find out my end of life term and what I should be looking forward to in symptomatology and medication. I agree more could be done now for those surviving any initial heart failure resulting in a quick death and for those who have survived to five or ten years.
1
I lost my mom two week's ago to heart failure after taking care of her for ten years, the last year of which was spent in hospice at home. I honored her wishes to die at home after she refused my offer to take her to Cedars for one last intervention. Care-giving for someone with heart failure is very difficult, particularly in the end stages, for the reasons this article so wisely outlines: lack of options in treating with palliative care meds when my mom had difficulty breathing and the widely divergent prognosis from the doctors on life expectancy. Ultimately, I had to adapt a fatalistic acceptance of "when her time comes, her time will come" so I could sleep at night, continue to effectively take care of my mom and avoid my own dread and fear around having to say goodbye. That being said, I was grateful for the assistance that hospice provided and most importantly for being able to honor my mom's wishes to the very end and provide her with a peaceful death in the comfort of her own home and bed.
8
I was diagnosed with HF 3 years ago. I had been working outside in the AZ heat but with an unfamiliar extra need to take short rests as I labored on my Park Avenue. I had been drinking a well known drink which ends in 'aide'. That evening at midnight when I tried to rise from my recliner, I was barely able to do so. I called for my spouse to drive me to the ER. Instead, she called 911. Upon admission, and after tests were performed, a Cardiologist came in and informed me that I had heart failure, a scary sounding name, isn't it? The Sodium in the drink might have put my system into a tailspin. Two days later after the need to monitor my response to several medications (Amiodarone in particular), I was able to return home. A session at the hospital two days later for us HF patients startled me when the nurse conducting the educational session started out by announcing "In 6 months 50% of your will be back in the hospital". That got my attention! Three weeks of rehab and with intensive educational sessions after each work out, gave me the needed frame of reference for healing the condition. After 2 1/2 years of strict dieting and exercise, I went from a post hospitalization ejection fraction (EF) of just 20% (the ability of the heart to pump efficiently), raising it to an EF of 50% to 55%. This level is considered normal. I am able to function well. Evidently HF can be beaten!
8
I'm an IV home care nurse, background in oncology. More and more I go to hospitals to hook patients up to portable IV pumps running inotropes--dobutamine especially--so they can go home with these drugs running 24/7, supporting their failing hearts. Some are awaiting heart transplants, but more and more of them are not candidates for heart transplant and they know they're at the end of their therapeutic options. Interesting to see this high-intensity drug, formerly only given in ICUs, going home with patients to help improve the time they have left.
11
My father died of CHF in 1984. It was a horrible death, made more difficult by the lack of understanding he received by medical professionals and, I'm afraid to admit to this: by his family as well. I have a non-cardiac related breathing disorder, and I often find myself extremely short of breath. But, it cannot possibly compare to what my father endured as he gasped for air the last year of his life. I hope this study goes a long way towards helping patients with advanced heart disease die with more dignity than in years past.
8
Thank you for this article. As a CHF patient in my late 40's, I have struggled with explaining this to relatives, some of whom are in serious denial about the seriousness of this condition. Part of this is because I can't give them a definitive "x years to live". How long I live will depend on how well I follow my doctor's regiment and whether I rest when becoming acute rather than pushing on with daily activities. I could have six months, or five years, or ten years. It makes planning for end of life very difficult.
12
A good friend is an adult survivor of Tetralogy of Fallot and is now 60. He has had multiple surgeries, and was always very active: working (in healthcare), exercising, eating carefully, & enjoying life. Now, his heart is failing but "not badly enough" for the transplant list and likely by the time it does he will be told he is too old. Criminal attitude in my view and shows that however far we have come in healthcare technology, we have a long way to go and the transplant decisions makers are still sitting at Hippocrates' knee.
4
My mother passed away of CHF in Philadelphia, in a huge hospital... but well-managed by staff directed by her and by my sister an administrator in a top university hospital. Norma made sure Sarah lived and died peacefully, passing in her sleep, never even awakening her 4 grown daughters who spent those last weeks sleeping on her bed. If we aim for warm, loving, peaceful final hours, and not "miracles" of a drug-enhanced few hours or a sedative/morphined end, CHF can be managed in ways that bring calm acceptance, end guilt, and maintain warmth and love for all. When my uncle died, it was home while napping, aaand the first attendants were his brothers, one of whom put on Joseph's socks in a touching moment of love. Hospice, hospital, and home care can respect the needs of the spirit within the failing body if we stop, think, plan and work together.
12
Nitpick: Heart failure is not "a weakening of the heart." That's cardiomyopathy. In fact, most authorities estimate that half of all patients with heart failure have strong hearts (with normal "ejection fraction," a measure of the strength of the heart muscle). Heart failure is a syndrome that occurs when the heart is not efficient enough to supply the needs of the body, whether due to weakness or other causes.
A more compelling concern regards the headlining by the NY Times - this is yet another "Doctors Fail to..." headline. These scare headlines misrepresent many issues, although they may drive up page views. Not all doctors fail to... , and this is no exception. Many doctors - particularly many cardiologists - recognize the mortality and other prognostic issues related to heart failure. That doesn't mean we preach doom & gloom constantly, but I suspect most of us are aware of the issues, and we try to individualize those conversations for each patient. Of course, some patients &/or families wish we had been either more or less explicit (I still have families who are mad at me because I asked about resuscitation preferences), but I think most of us address this.
Yes, it's a difficult conversation. Bad news is never good news. And we are notoriously awful at predicting mortality. We can share our best knowledge, though, and most of us don't "fail to."
A more compelling concern regards the headlining by the NY Times - this is yet another "Doctors Fail to..." headline. These scare headlines misrepresent many issues, although they may drive up page views. Not all doctors fail to... , and this is no exception. Many doctors - particularly many cardiologists - recognize the mortality and other prognostic issues related to heart failure. That doesn't mean we preach doom & gloom constantly, but I suspect most of us are aware of the issues, and we try to individualize those conversations for each patient. Of course, some patients &/or families wish we had been either more or less explicit (I still have families who are mad at me because I asked about resuscitation preferences), but I think most of us address this.
Yes, it's a difficult conversation. Bad news is never good news. And we are notoriously awful at predicting mortality. We can share our best knowledge, though, and most of us don't "fail to."
15
My mother died of heart failure at home under hospice care. Her primary care physician told us both how heart failure progressed and roughly how long she had to live. However, we both saw it as in the future, even under hospice care. Her physician was correct in his assessment. Because the hospice team new she had heart failure, her breathing was assisted with oxygen and when she was still short of breath, with a tab of morphine, which is what happened the day she died at home.
I think much of the reason for the disparity in fear between heart failure and cancer has to do with cancer's terrible reputation. The mortality associated with heart failure is not assessed and feared in the same way as the end stages of cancer, perhaps partly because of the pain commonly associated with cancer, and even though a shortness of breath crises during heart failure is a very scary event. Pain management for cancer has come a long way in recent years, but cancer is still such a terror-filled diagnosis.
I think much of the reason for the disparity in fear between heart failure and cancer has to do with cancer's terrible reputation. The mortality associated with heart failure is not assessed and feared in the same way as the end stages of cancer, perhaps partly because of the pain commonly associated with cancer, and even though a shortness of breath crises during heart failure is a very scary event. Pain management for cancer has come a long way in recent years, but cancer is still such a terror-filled diagnosis.
5
A salient point was made by this doctor regarding the hospice nurses. Second guessing. When a doctor determines a patient is hospice-eligible (a major feat in itself), hospices routinely send out RN's who decide whether to admit the patient. Frequently, the hospice nurse will decide the patient isn't actually 6 months or less from death, and will refuse admission. This causes all sorts of problems for the doctor, the patient and the family. This up-ending of the traditional pattern of clinical decision-making must end. Rather than tighten the entry point to palliative care and hospice, we need to widen it significantly. And, we need to expand the real-life provision of hospice care to truly support the patient and the family, as it is written in the law and benefit. As it stands now, it is little more than dressed-up intermittent home health care. Not nearly enough to keep the patient safely at home and the family sane.
8
The primary factor that influences those decisions are cost. Hospice is given a certain amount per day to cover a person's care - all of that care - including medications. Hospice nurses and their staff are under substantial pressure to control costs. To change this, we would have to fund hospice more. And unless we want to spend even more on health care than we already do, spending more on hospice would require spending less on other aspects of health care. I think if you propose to do that, the headline will be something along the lines of "government spending more on death than living."
1
A FAILURE OF HEART is a lack of empathy and caring. Those with heart failure, especially terminal heart failure, do not need failures of empathy to deprive them of a dignified death, during which discomfort is minimized, if not eliminated. It is far preferable to patients and caregivers to accept highly trained hospice care for those with heart failure on a par with those who have cancer. In addition to providing people with better medical care and greater comfort when at their end, the costs of compassionate hospice care provided by highly trained staff will be far less than ER and OR costs. We owe it to those with terminal illness to permit them to leave this world with the least suffering and anguish possible, with their dignity intact.
7
I agree with more research to predict which heart failure patients will die soon and thus need palliative care. Until we have such research, it is best to avoid trying to guess about patient survival and limit palliative care to those few that doctors know with a high degree of certainty will die soon.
2
I would have had more confidence in Dr. Warraich's assertions if there had been a link to the presentation to the American College of Cardiology? Was it an abstract presented at a meeting or a peer-reviewed paper in the JACC? How long ago was the presentation? Has the research stood the test of time? What kind of cancer? What kind of physicians? How many heart patients? How many cancer patients? How many physicians? A statistically significant result?
3
There is a link in the article to the JACC paper.
3
Dr. Warraich: As an old lady AND a hospice nurse, I want to add my comments to this discussion and clarify a couple of things. Most hospice care is fully funded by Medicare, therefore, prospective patients must meet fairly strict guidelines for admission, guidelines established by Medicare. The hospice that refused care for your old lady patient, probably did not have the documentation that would support her acceptance on to hospice. An example of this might be a low cardiac output, shortness of breath not easily relieved, etc.
And you might feel better knowiing that hospice care can relieve the discomfort of end stage heart disease. When shortness of breath becomes severe, we use a combination of morphine and oxygen. This seems to work quite well if administered correctly. The morphine has the added ability to relieve the severe anxiety that accompanies shortness of breath.
Thanks for the otherwise informative article.
And you might feel better knowiing that hospice care can relieve the discomfort of end stage heart disease. When shortness of breath becomes severe, we use a combination of morphine and oxygen. This seems to work quite well if administered correctly. The morphine has the added ability to relieve the severe anxiety that accompanies shortness of breath.
Thanks for the otherwise informative article.
21
I'm 69 and have decided not to try and extend my life if I get some dreadful disease. I'll take hospice care and Oxy or anything else to keep me comfortable. If you're thirty, that's one thing, but I don't want my last days to be ruined by stuff like chemotherapy. My aunt got a shot that speeded her dying when she was in pain and didn't want to live anymore. You don't have to go to Oregon or Amsterdam if you have the right doctor.
16
Death is inevitable, and more often than not it's a relatively untidy, even messy business.
Everybody knows it's coming, but in the recesses of our thoughts we hope an exception will be made in our case! So, unless we die suddenly and unexpectedly, the realization that death is very near, or actually here, seems always to come as a bit of a surprise, accompanied by an element of denial.
Other times, when there has been little or no advance warning, its approach comes as a great shock.
Thus, and endless series of articles over the years about how to make it better; maybe it doesn't get better.
Everybody knows it's coming, but in the recesses of our thoughts we hope an exception will be made in our case! So, unless we die suddenly and unexpectedly, the realization that death is very near, or actually here, seems always to come as a bit of a surprise, accompanied by an element of denial.
Other times, when there has been little or no advance warning, its approach comes as a great shock.
Thus, and endless series of articles over the years about how to make it better; maybe it doesn't get better.
7
my 87-year-old grandmother had heart disease and had a by-pass at 70. by the end of her lifespan, she was frail, riddled with osteoporosis, had sky-rocketing blood pressures, but still used her walker to get herself to the bathroom down the hall. she lived with my uncle the last 18 years of her life. she had signed a dnr, but unfortunately our great medical system disregarded it. why? i couldn't tell you. this i can:
two days before she died she called her doctor complaining of irregular heartbeat. he told her to call an ambulance and be admitted. she collapsed on the way into the ambulance. the ems revived her (they didn't know about the dnr at the time). when in the icu, she woke up demanding to know why she was brought back. and her doctor, instead of reviewing her dnr and clarifying this document with the hospital staff, proceeded to discuss putting in an Implantable Cardioverter Defibrillator (ICD), which would have shocked her every time her heart stopped, breaking brittle ribs in the process. a day later, she died, coughing up blood from the tube that had been shoved down her throat in the ambulance and screaming in pain. the hospital staff once again attempted to revive her, despite my cousin showing them the dnr at her bedside. it was only when my uncle arrived and unequivocally told them to stop that they did.
what is the point of signing documents like dnrs if hospitals don't use them? the system and that doctor failed my grandmother miserably.
two days before she died she called her doctor complaining of irregular heartbeat. he told her to call an ambulance and be admitted. she collapsed on the way into the ambulance. the ems revived her (they didn't know about the dnr at the time). when in the icu, she woke up demanding to know why she was brought back. and her doctor, instead of reviewing her dnr and clarifying this document with the hospital staff, proceeded to discuss putting in an Implantable Cardioverter Defibrillator (ICD), which would have shocked her every time her heart stopped, breaking brittle ribs in the process. a day later, she died, coughing up blood from the tube that had been shoved down her throat in the ambulance and screaming in pain. the hospital staff once again attempted to revive her, despite my cousin showing them the dnr at her bedside. it was only when my uncle arrived and unequivocally told them to stop that they did.
what is the point of signing documents like dnrs if hospitals don't use them? the system and that doctor failed my grandmother miserably.
123
I don't wish to be harsh, but if she had a DNR, why did she call an ambulance in the first place? I see that your uncle came to the hospital with her DNR, but was he part of making the initial 911 call? These outcomes don't begin when the person arrives at the hospital. They begin when you pick up the phone and call 911.
Too many people sign a DNR, but aren't ready for or don't really want to make the obvious follow-on decisions. Then they blame the healthcare folks for trying to keep them alive. In truth, their own actions are sending very mixed messages.
I'm no fan of our healthcare establishment. And I absolutely recognize that docs and hospitals all too often ignore DNRs and patient and family wishes.
But that said, there is a family obligation to make the tough calls -- like NOT calling 911 -- that too often just doesn't happen. I say this as someone who lived through a very similar situation as the caregiver and guardian for my 84-y/o mom who adamantly wanted to die at home.
Too many people sign a DNR, but aren't ready for or don't really want to make the obvious follow-on decisions. Then they blame the healthcare folks for trying to keep them alive. In truth, their own actions are sending very mixed messages.
I'm no fan of our healthcare establishment. And I absolutely recognize that docs and hospitals all too often ignore DNRs and patient and family wishes.
But that said, there is a family obligation to make the tough calls -- like NOT calling 911 -- that too often just doesn't happen. I say this as someone who lived through a very similar situation as the caregiver and guardian for my 84-y/o mom who adamantly wanted to die at home.
Valid question, with no good answers. Even if a person is admitted o a hospital with DNR/Advanced Directive paperwork, everyone involved with his/her care will do a full code UNTIL the DNR do not resuscitate) or NO CODE! order is written. It is horrible. CPR and intubation has been done on a patient when the family members are waving the DNR paperwork in from of everyone on the medical staff. But until the order is not written, all will be done. Health care providers, all of them,and I am one of them, but an exception, feel that some kind of action justifies them and their role.
As a former member of an ethics consult team, I have to ask: What state did grandmother reside in? What you deescribe is clearly battery, against patient's stated wishes. In some places, that would e sufficient fo a case of...assault and battery. Check your state laws. Perhaps you might become an advocate for changing state law, or as a minimum, hospital policy.
8
If or when my heart is attacked my brain has given it orders to succumb without whimpering. I trust it follows the command.
6
CHF, Chronic Heart Failure.
I had heart attacks at 40 and 50 because of smoking, high carb diet and low exercise. Now I have an implanted cardio defibrillator (ICD), actually, my second one. It has never had to restart my heart. I take coreg and spironolactone, a combination that has improved my ejection fraction. I have an advanced directive that says #1. Turn off the ICD.
I had heart attacks at 40 and 50 because of smoking, high carb diet and low exercise. Now I have an implanted cardio defibrillator (ICD), actually, my second one. It has never had to restart my heart. I take coreg and spironolactone, a combination that has improved my ejection fraction. I have an advanced directive that says #1. Turn off the ICD.
6
My dad died at home, of congestive heart failure, after several attempts to strengthen his heartbeat. His doctor wisely counseled him to make the most of his remaining time, as he had lived 3 times longer than most heart disease patients, 11 years versus 3-4 years. He did suffer for almost 3 weeks, but mostly from fear and remorse, and in the end his heart just stopped beating. My mother just died in her sleep, one night. She was the lucky one.
5
i was diagnosed in 1993 at age 45 with heart failure due to dilated cardiomyopathy and an EF of 30%. i was told that i had a 5 year life expectancy and that i should spend my retirement money asap becuase i was not not going to live long enough to retire. it's now been 22 years and 3 CRT devces (pacemaker with a third wire) later. i quit going to see cardiologists over a decade ago (a thoracic surgeon replaces my CRT device every 4-5 years) because diagnostic measurements are just numbers (and a source of income to the hospital and doctors) and the many cardiologists i had seen (they seem to move arouhd a lot and it's hard to find one to see over a long period of time) kept wanting to change my medication regime for no reason that made sense. i was incredibly lucky to have had a truly outstanding cardiologist when i first became ill in 1993 and i simply keep taking the same meds at the same dosages that he prescribed for me originally. no doubt that i'll die eventually but it probably won't be due to my heart failure.
16
It's refreshing to hear from another person who is living well with CHF. Thank you for sharing your experience. CHF is a serious condition, but not always dire. Fifteen years ago, in my early 50's I, too, was diagnosed with CHF due to dilated cardiomyopathy (cause unknown). I already had a pacemaker for total heart block, but no vascular disease. With a drug regimen and a far less stressful life, my EF (ejection fraction), BP, and pulse have been in normal range for years. I feel good, and very fortunate, and very grateful for excellent medical care.
It is likely that your other cardiologists were suggesting medicines that evidence indicates are better for heart failure. There have been significant changes since 1993. It is your prerogative to remain on the same medications but your cardiologists had reasons to suggest new medications and most people with idiopathic dilated cardiomyopathies are not as lucky to have had such good responses to the treatments.
When the slightest effort causes difficult breathing because of a bad heart what are people to do? Stay immobile until the heart stops? Could take years.
1
My mother passed away this past March from cardiac heart failure. My mother was always a very pragmatic woman and after two back-to-back hospitalizations for pneumonia decided she was "through". Her cardiologist, in November, suggested hospice care. However, her GP was adamant that he could continue to treat her. My mom was tired of the trips to the doctor and was relieved to begin hospice. The last two months were very difficult for her and for the family. However, for the most part, hospice was able to keep her comfortable, increasing the level of care as mom's condition worsened. I am grateful that mom was realistic about her diagnosis. I have a dear friend whose father is nearing the end, but he and his wife continue to believe that he will live forever and they have both been resistant to end of life care. Thankfully, mom's cardiologist was very forthcoming about her condition and prognosis and that allowed mom and us to create an end of life environment that was as comfortable as possible. CHP is a terrible disease and her last week was awful to watch, but thankfully the hospice caregivers were there to ease the pain and the last struggle.
38
I'm glad that things worked out the way your mother wanted. What we forget is that all patients are different and it's not just the doctors who do not want to "give up" - it's quite often the patient herself or sometimes her family. There is no solution to this - it's just part of the differences in people and their attitudes.
A woman who I've known at my pulmonary rehab now for 9 years is in end stage pulmonary failure and also heart failure. But she is still attempting to come to rehab, it sometimes taking her 5 minutes to walk the 50 yards from the valet parking into rehab. Of course, they would bring her in by wheelchair, but she is determined to do this herself. I asked her if perhaps the fatigue of exercise was now more detrimental than helpful and she was furious - said she HAD to get back to exercising in order to "get well" again. Everyone knows she's not going to get well - she probably knows so herself - but as she said, "I'm not ready to give up yet" and that should be her prerogative. If they told her she couldn't come to rehab, she would feel deeply betrayed.
Most of us die of multiple health issues as one can so easily lead to yet another. We have no idea why some people have easy deaths and some have horrendous ones. I think it's no different than why Martha's Vineyard is one of the loveliest places on earth and Bangladesh is one of the more dreadful. We just don't know.
A woman who I've known at my pulmonary rehab now for 9 years is in end stage pulmonary failure and also heart failure. But she is still attempting to come to rehab, it sometimes taking her 5 minutes to walk the 50 yards from the valet parking into rehab. Of course, they would bring her in by wheelchair, but she is determined to do this herself. I asked her if perhaps the fatigue of exercise was now more detrimental than helpful and she was furious - said she HAD to get back to exercising in order to "get well" again. Everyone knows she's not going to get well - she probably knows so herself - but as she said, "I'm not ready to give up yet" and that should be her prerogative. If they told her she couldn't come to rehab, she would feel deeply betrayed.
Most of us die of multiple health issues as one can so easily lead to yet another. We have no idea why some people have easy deaths and some have horrendous ones. I think it's no different than why Martha's Vineyard is one of the loveliest places on earth and Bangladesh is one of the more dreadful. We just don't know.
3
Oregon we have death with dignity. You can get the drugs it takes to die after you are diagnosed with terminal condition
1
Thank you for a very informative article. I think that part of the problem is that our health insurance companies do not do a good job either. People are expected to make good choices all the time, even when they are in no condition to make any sort of choices. I think that the medical profession needs to band together to call for a national discussion on a "good death". People ought to be able to die pain free, at home or in hospice according to what they want, not the insurance company, with dignity and comfort. However, our wealth care system won't allow time for doctors or any provider to listen to patients, ease their distress (physical or mental), or spell out the alternatives. We have a system that is profit driven rather than care and patient driven.
One would think that there would be some incentive to provide all patients with effective or decent palliative care in order to preserve their dignity. However, the American way of health doesn't include offering people the care they need. It's what they can afford so even if you could offer a patient hospice care they may not be able to afford it or a dignified death.
One would think that there would be some incentive to provide all patients with effective or decent palliative care in order to preserve their dignity. However, the American way of health doesn't include offering people the care they need. It's what they can afford so even if you could offer a patient hospice care they may not be able to afford it or a dignified death.
7
Two clarifications:
Hospice is end-of-life care (palliative in nature) that is provided in patient's homes OR in a residential facility. So, hospice is at home (primarily) and in a facility (secondarily).
For patients who are on Medicare, hospice is a wholly-paid benefit. Hospices receive a daily payment (per diem) that covers all expenses. Hospice patients do not pay anything additional. Most private insurance carriers follow this same model, to my knowledge. So, hospice is not for the rich. It is for everyone.
Hospice is end-of-life care (palliative in nature) that is provided in patient's homes OR in a residential facility. So, hospice is at home (primarily) and in a facility (secondarily).
For patients who are on Medicare, hospice is a wholly-paid benefit. Hospices receive a daily payment (per diem) that covers all expenses. Hospice patients do not pay anything additional. Most private insurance carriers follow this same model, to my knowledge. So, hospice is not for the rich. It is for everyone.
5
@Sheila: on top of that, at least in my community, Hospice has funds for indigent patients. NOBODY is turned away. I know of a friend's brother who died in his 50s -- too young for Medicare and with little income. Hospice cared for him in his last weeks for no charge, and even paid for his cremation and burial. There are charities that provide money for this, as well as donations from the families of hospice patients.
The caveat of course is that providing home care can be expensive - it requires family members to be available and responsive - potentially 24hrs/day. This is where there is a difference in rich vs not so rich. In my experience, it is much easier for the affluent families to get that support at home.
5
Thank you Dr. Warraich for an excellent and certainly timely article.
I am a nurse practitioner specialized in cardiology and have always worked in acute care with cardiologists therefore have seen it all escecially in ICU. There are some patients I will always remember just because they unfortunately died in pain and suffered terribly. For example, one elderly lady with advanced CHF had a defibrillator placed which in the end discharged frequently for ventricular tachycardia. One day she arrived in ED screaming with pain secondary to the frequent ICD (internal cardioverter/defibrillator) shocks. The agony only ended when, what seemed took awhile, a magnet was taped over the the ICD
while we waited for the appropriate person to come with the appropriate programmer to turn off the ICD. She died a few hours later. Unfortunately this is just one of many similar stories of unecessary suffering.
I certainly think ICDs are great however, appropriate patient selection is critical. I have seen them placed in elderly patients who later regretted have them inserted.
It is all about education, education and more education. Sudden cardiac death in the elderly or very elderly with more moderate to severe CHF is not a bad way to leave this world. I attended more recently a palliative care conference and truly embrace its concept. I would think palliative care would certainly work well for patients with severe CHF.
Again,thank you NYT, Dr. Warraich for this great and timely article!
I am a nurse practitioner specialized in cardiology and have always worked in acute care with cardiologists therefore have seen it all escecially in ICU. There are some patients I will always remember just because they unfortunately died in pain and suffered terribly. For example, one elderly lady with advanced CHF had a defibrillator placed which in the end discharged frequently for ventricular tachycardia. One day she arrived in ED screaming with pain secondary to the frequent ICD (internal cardioverter/defibrillator) shocks. The agony only ended when, what seemed took awhile, a magnet was taped over the the ICD
while we waited for the appropriate person to come with the appropriate programmer to turn off the ICD. She died a few hours later. Unfortunately this is just one of many similar stories of unecessary suffering.
I certainly think ICDs are great however, appropriate patient selection is critical. I have seen them placed in elderly patients who later regretted have them inserted.
It is all about education, education and more education. Sudden cardiac death in the elderly or very elderly with more moderate to severe CHF is not a bad way to leave this world. I attended more recently a palliative care conference and truly embrace its concept. I would think palliative care would certainly work well for patients with severe CHF.
Again,thank you NYT, Dr. Warraich for this great and timely article!
65
Our family would have preferred for my dad to go home from the hospital when dying of CHF in 2007, but since he was on a ventilator, and getting kidney dialysis, he could not go home without ending dialysis, which my dad was afraid to do. All of the doctors--cardiologist, nephrologist, endocrinologist, could tell us was that his situation was "complex." No kidding. And each doctor was concerned only with his/her own organ specialty--our family were the only ones concerned about our dad as a whole person. Fortunately, dad felt a kind of safety in the hospital, and was not opposed to dying there. He was a patient from May to August--3 solid months, then passed away on morphine. . . Definitely more study is needed.
32
Treating both CHF and kidney failure at the same time is VERY complex! What works well for one condition, is horrid for the other. It's a very delicate balancing act. I don't know if all the studies in the world are ever going to solve this.
1
Thank you Dr. Haider Javed Warraich for bringing the long-awaited "red elephant," Heart Disease Awareness, into the room.
Even though I have never smoked, not a diabetic, not obese, exercised daily, ate healthy, thus resulting in my 5/2, 110 lb frame, I have both heart and lung disease, with no cure in sight. Walking a set of stairs, is commensurate to running a marathon..
I agree with your assessment that heart patients "rarely get high-quality end-of-life care, in part because it is so hard to predict how individual cases will play out." However, the main cause of those patients who die from heart disease, never knowing just how close they were to death's door, is that no one ever told them. The onus of providing information, explaining the seriousness of heart disease, should be placed on the cardiologist working with that patient. I should know.
I just had a follow-up visit with my cardiologist last week, and after going over, TOGETHER, the long list of my heart and lung conditions, I asked the million dollar question, "What is my life expectancy?" You don't get many patients who are willing to ask this question, especially when it comes to heart disease. Many don't ask because they've not been given enough information, in order to comprehend the seriousness of their illness. I am one of the lucky ones, as I have a wonderful cardiologist who explains everything, and answers all of my questions...even life expectancy.
Even though I have never smoked, not a diabetic, not obese, exercised daily, ate healthy, thus resulting in my 5/2, 110 lb frame, I have both heart and lung disease, with no cure in sight. Walking a set of stairs, is commensurate to running a marathon..
I agree with your assessment that heart patients "rarely get high-quality end-of-life care, in part because it is so hard to predict how individual cases will play out." However, the main cause of those patients who die from heart disease, never knowing just how close they were to death's door, is that no one ever told them. The onus of providing information, explaining the seriousness of heart disease, should be placed on the cardiologist working with that patient. I should know.
I just had a follow-up visit with my cardiologist last week, and after going over, TOGETHER, the long list of my heart and lung conditions, I asked the million dollar question, "What is my life expectancy?" You don't get many patients who are willing to ask this question, especially when it comes to heart disease. Many don't ask because they've not been given enough information, in order to comprehend the seriousness of their illness. I am one of the lucky ones, as I have a wonderful cardiologist who explains everything, and answers all of my questions...even life expectancy.
24
I find it extremely disturbing that the hospice team refused to believe the doctor and his assessment of his patient.
5
This is a scary article, for me. My spouse, a long-time smoker, now 69, is afflicted with shortness of breath, atrial fibrillation, significant swelling of her lower extremities, and high blood pressure. She has ceased her tobacco use, is taking diuretics and blood thinners, and has been seen by a plethora of medical professionals from nurses, phlebotomists, nurse practitioners, dietitians, a number of doctors including a nephrologist. The upshot of this, now five month experience, is that she is not better. Her swelling is as bad as ever, her breathing is still compromised, her AF seems to be inconsequential as far as the above are concerned, and she still doesn't know when and/or if she will have relief. Soon, she will be seeing a physical therapist who will instruct her (apparently) on how to use compression socks or wraps to help alleviate her swelling. While she has an appointment with a cardiologist, it isn't until November! I'm sorry that this comment is so long, but the article is a bullseye with respect to my spouse and her condition. I'm afraid that until the root cause is identified, well...
39
Find the best acupuncturist in your area.
2
My mother had a friend who showed these same symptoms. She went to a holistic naturopath who diagnosed people from a hair sample (from the head).
He put her on various natural remedies & she completely turned-around. At the point that she started going to this fellow, she'd been diagnosed with heart issues. Her symptoms left & never returned...
I believe there's a whole lot more to things than current medicine wants us to know.
He put her on various natural remedies & she completely turned-around. At the point that she started going to this fellow, she'd been diagnosed with heart issues. Her symptoms left & never returned...
I believe there's a whole lot more to things than current medicine wants us to know.
4
Ask for copies of the examination summaries from each of the offices your spouse has seen in order to get acquainted with their language. Look up the words you need to know. Make notes of your questions and call them back for clarification. Look up the meds to see what they treat. Sometimes when doctors talk to us, we inadvertently nod and they think we understand. Writing questions down ahead of the visit helps.
4
Thank you, Mr. Warraich (?Dr. Warraich) for the refreshingly honest article. We physicians must be sensitive and diplomatic with our patients, but we must also be honest. Patients with limited time remaining may well have plans to make, things to do.
Warraich correctly points out that "advanced heart failure carries a prognosis similar to, if not worse than, many malignant cancers"
From the National Institute of Health http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1955040/
"the mortality rate is relatively high in the first few weeks after the occurrence of heart failure, while after that period the slope of the survival curve shows a much more gradual slope. The 30 day mortality is reported to lie around 10–20%. Both in the US (Framingham heart study) and in England (Hillingdon heart failure study) 1 year survival following the onset of heart failure was 70%. Five years after the occurrence of heart failure only 35% of Framingham participants were still alive.
and from the same article
A more recent report from the Rotterdam study including cases of incident heart failure, and allowing for inclusion of patients hospitalised for heart failure as incident cases, produced lower 1, 2 and 5 year survival rates of 63%, 51% and 35%, respectively.
One-third survive five years. Definitely comparable to many malignant conditions. Evidence-based treatment and palliative care are needed. And honesty.
Warraich correctly points out that "advanced heart failure carries a prognosis similar to, if not worse than, many malignant cancers"
From the National Institute of Health http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1955040/
"the mortality rate is relatively high in the first few weeks after the occurrence of heart failure, while after that period the slope of the survival curve shows a much more gradual slope. The 30 day mortality is reported to lie around 10–20%. Both in the US (Framingham heart study) and in England (Hillingdon heart failure study) 1 year survival following the onset of heart failure was 70%. Five years after the occurrence of heart failure only 35% of Framingham participants were still alive.
and from the same article
A more recent report from the Rotterdam study including cases of incident heart failure, and allowing for inclusion of patients hospitalised for heart failure as incident cases, produced lower 1, 2 and 5 year survival rates of 63%, 51% and 35%, respectively.
One-third survive five years. Definitely comparable to many malignant conditions. Evidence-based treatment and palliative care are needed. And honesty.
37
I recently retired from the practice of internal medicine providing in and out patient care to a predominantly geriatric practice. I couldn't agree more with Dr. Warraich's comments. The tragedy in my mind is that primary care internists and family practice doctors have failed to provide end of life care and counseling to the point where there is the need for another specialty, palliative care physicians, to fill this gap. I welcome and have enjoyed the support of my palliative care colleagues, especially in the in-patient setting, but this does not absolve the responsibility of the primary care physician. When cure is not possible then comfort care is our primary responsibility.
95
Dr. Norins,
I agree that it's too bad that primary care physicians aren't providing the care they should. The problem is deficiencies in their training. Because pain is the second most common reason patients see primary care physicians (trailing only upper respiratory tract infections), most of these physicians receive little training in its management.
I agree that it's too bad that primary care physicians aren't providing the care they should. The problem is deficiencies in their training. Because pain is the second most common reason patients see primary care physicians (trailing only upper respiratory tract infections), most of these physicians receive little training in its management.
1
We need to leverage existing long term data bases (eg VA administrative databases) to develop and validate prognostic algorithms to predict 1) the likelihood of advancing to failure post MI and 2) the likelihood of worsening failure among patients with first presentation of failure. More aggressive maintenance could be targeted to those at moderate to high risk of progression. This is feasible and could be readily funded by government entities or even private managed care organizations
5
Thank you for writing this.
3
Absolutely true, and I've seen it with a dear friend. Her cardiologist would not discuss heart failure and her son had to ask the question, "what are her chances of recovering enough to have [heart] surgery?" before learning that it was two percent. Two percent, and her cardiologist could have easily pointed this out a week earlier, when she was intubated for the third time. A palliative care nurse was brought in, and the decision was made to remove the breathing tube. It took another few days to get people together in my friend's room. When the nurse removed the tube, the look of relief and peace on my friend's face was profound. She was semi-conscious and she passed away with no pain an hour later. If only her cardiologist had had a discussion with her three months earlier, when she entered the nursing home wing of the hospital. "I just ant to go home," she said. But her son was given strong hope for her recovery and surgery by the cardiologist. Not.
98
Palliative care would be a good thing. But in the case of heart failure, what is palliative care? I couldn't figure it out from this article. Drugs? Oh what?
6
I wonder if your patient who seemed to be doing well was given a prognosis of a few days. I think prognosticating is very difficult, and can take away a person's hope. So while you may tell someone their time is likely short, make sure you add an alternative scenario.
3
Sometimes there is no hope. Dishonesty does not seem like a kindness to me. There are things to be said within families and with friends at the end of life that don't get said and the suffering related to maintaining "hope" when there is no hope is cruel.
41
Dr. Warraich doesn't have to take surveys to guesstimate how long patients with congestive heart failure will live. As an adjunct faculty member of the cardiology division at Duke, I can recommend he do a project using the cardiovascular databank methodology which we instituted at Duke over 40 years ago. All he and his colleagues need to do in set up registries to describe every patient with a diagnosis of heart failure, their prognostic clinical variables, their therapies, and their outcomes over time. That way the cardiologists at Duke will know how to estimate and discuss prognosis with patients and their families based on past experience at Duke -- just like we were able to do with patients with coronary artery disease. Patients with heart failure are a diverse group with varied causes, clinical characteristics and prognoses. In this disease, knowing prognosis is much more difficult than diagnosis. But just because it is difficult does not mean that physicians should hasten patients to their end. I am fearful that the new emphasis on bundled payments will lead to a medical genocide of those with complex diseases like congestive heart failure -- especially the frail elderly. I hope Dr. Warraich and Duke spend some energy on rigorously documenting real outcomes in patients, rather than relying on survey data. They have all the tools they need to do so right now.
20
Last year, my dad spent the last month of his life in a hospital treating the symptoms of his long years with heart failure. He suffered terribly and it was difficult to watch. All of that month he was demanding to go home but he needed dialysis and other interventions. After we finally got him home, he died within twelve hours. Notwithstanding the good intentions of his doctors and care givers at the end, he considered the medical assault on him abusive. There has to be a much better way of allowing heart failure patients to pass without a medical assault, free from pain and most importantly free from anguish. My father's hope was to die. During that month he would say to me, "I want this life to end." It could have ended better. He was 87 when he left us.
137
Condolences to you. This is just ridiculous- there has to be a way to advance this further...I feel like I'm reading about people dying in the 1800's!
2
My father said, "I had seventy-five wonderful years. Unfortunately I lived to seventy-eight!."
1
You say he couldn't go home because "he needed dialysis" -- but dialysis is a treatment that can actually be refused, and patients near the end of life do actually choose to end dialysis, or simply not to start it. Same goes for the other interventions that "forced" him to stay in the hospital. I'd be interested to know who was making his medical decisions. Was he unwilling to stop these interventions so that he could, indeed, go home? Were family members passive, deferring to healthcare professionals? Or unable to agree in the absence of a named healthcare proxy or POA, or to accept the inevitable consequences of ending these interventions? These are the hard questions.
5
My cardiologist s have never be honestly with me
The 21st Century Cures Act will allow manufacturers of cardiac drugs and devices to pick the companies that test their drugs and devices. Care will be further muddled with new drugs and devices that were poorly or fraudulently tested.
2
I lost my Mother to "heart failure" just a few days ago. Gratefully, she was moved from the hospital to hospice care, but we experienced EXACTLY what is noted here:
"Hospice teams, while generally well equipped to handle pain, nausea and anxiety, have limited options and training when it comes to making a patient’s breathing more comfortable."
Her breathing was labored and appeared so difficult we frequently wished we were able to hasten her death. It should not be so.
"Hospice teams, while generally well equipped to handle pain, nausea and anxiety, have limited options and training when it comes to making a patient’s breathing more comfortable."
Her breathing was labored and appeared so difficult we frequently wished we were able to hasten her death. It should not be so.
96
True. Although some CHF patients may have chest pain, the difficulty breathing induces panic. It just does. Now, calling that "pain" and amping up the morphine drip will hasten the end of the suffering (death), and it's unfortunate that seems to be the only option. Doctors and families need to ask people with CHF what THEY want done when they feel like they are drowning.
6
Sincerest sympathy to you- that is just ghastly & so cruel...how can there not be any advances on care of heart failure patients? That's crazy!
3
First, sincere condolences on the loss of your mother. Her passing leaves a hole that will take much time to heal. Second, I agree with you about breathing management, as well as unrelenting nausea. We often prayed during the month that she was in hospice that she would be released from her misery. Again, I agree it should not be so.
4
As a physician who specializes in pain management I take issue with Dr. Warraich's contention that we've made "great progress in the management of symptoms like chronic pain in patients with terminal disease." If patients are receiving hospice care, it is true their pain is more likely to be managed but, unfortunately, even in hospitals that have hospice teams, many physicians will not bother calling them to manage pain as they feel they can do as good a job. Because most physicians receive little training in pain management, they usually do a lousy job doing it. And the treatments that most patients need for their pain are nothing new; the general classes of medications used are the same that were available 50 years ago. Sadly the progress has been in patients getting a bunch of unnecessary tests and procedures that provide them little benefit but make physicians a lot of money.
He also fails to mention another important factor in the care of patients with severe heart disease: their mental states. It's sad that he makes no mention of the importance of managing the depression that often occurs with it.
He also fails to mention another important factor in the care of patients with severe heart disease: their mental states. It's sad that he makes no mention of the importance of managing the depression that often occurs with it.
116
This is sadly too true. Even with Hospice care, when my Dad was dying of cancer and was refusing food and most water, it was problematic to get good pain management onboard. The skilled nursing facility (and I read this is common) wouldn't use any injectable pain medication and Dad was unable to swallow pills any more. The hospice doc prescribe compounded methadone cream since serious systemic pain relief creams are not available. Unfortunately, I researched his prescription and discovered the docs script was 25X too weak to even have a chance of efficacy as the one study on methadone cream showed low doses were the same as placebo. I showed the study to the doc who said "Whatever, our experience shows it helps!" Placebos DO help but real medicine is better! Even after that the Doc prescribed another compounded cream at yet another inadequate dose as evidenced by the one and only study of that substance.
Palliative pain care needs to study non-injectable alternatives that don't need to be swallowed for the very common end of life situation when patients can't swallow anymore and are in facilities that refuse IV meds.
Palliative pain care needs to study non-injectable alternatives that don't need to be swallowed for the very common end of life situation when patients can't swallow anymore and are in facilities that refuse IV meds.
The vast majority of doctors treat the disease and never the patient. They have no interest in their patient's lives, their mental and emotional state, or anything else that is not specific to the disease state that they are supposed to be treating. They pay lip service to the concept that the patient should be a partner in their own care but they disregard any effort by the patient or the patient's care partner. You can't "care" for a patient in an 8 minute office visit, and when your first question, though never spoken aloud, is, "How are you going to pay me?"
After watching my Grandmother suffer with heart failure and chest pains which were unbearable I think God for natural remedies.
She was on numerous medications yet nothing stopped the shortness of breath and chest pain.
A solution which baffled her doctors was a simple 5 ounce of beet juice with 1/4 teaspoon of cayenne pepper mixed in every morning. She became a new woman, her doctors could not believe the change.
There is science behind this from Kansas State University . Here https://www.k-state.edu/media/newsreleases/oct14/beetroot102314.html
She was on numerous medications yet nothing stopped the shortness of breath and chest pain.
A solution which baffled her doctors was a simple 5 ounce of beet juice with 1/4 teaspoon of cayenne pepper mixed in every morning. She became a new woman, her doctors could not believe the change.
There is science behind this from Kansas State University . Here https://www.k-state.edu/media/newsreleases/oct14/beetroot102314.html
2
I think "heart failure" is a terrible term. There's got to be something better. People can live for many years with "heart failure" on the proper medications, diet and exercise programs. To hear that you have "heart failure" is to imagine a premature (perhaps) death sentence. Cardiomyopathy is essentially "heart failure" but doesn't imply imminent death.
6
The French medical term for CHF is cardiac insufficiency, and I think it is an accurate and humane one. The traditional five-year life expectancy estimate from date of initial diagnosis with stage one disease is probably not all that inaccurate but it is only an estimate. Sometimes the right combination of medications can "remodel" the heart but the only "cure" is transplantation, which is generally reserved for younger patients or (inevitably) very wealthy ones. The need for honest discussion between doctor and patient (and his or her family) remains paramount, and Prof Warraich has hit this nail squarely on the head.
3
Perhaps HEART disease still is the world’s No. 1 killer, despite advances in medical technology, because the cardiologic community insists in its wrong basic cause, i. e. the coronary thrombosis as the culprit. So, all the treatments under this direction are treating symptoms and not the real cause of heart disease. This may explain the current heart failure epidemic. An alternative explanation for heart disease was published last year in the article “Stress as Cause of Heart Attacks -- The Myogenic Theory” by Wise Traditions on October 2014 at http://goo.gl/ElHvbA . Carlos Monteiro, President of the Infarct Combat Project http://www.infarctcombat.org
3
"Heart disease" and "heart failure" are not the same thing. "Heart disease"-- what most people call a 'heart attack'-- gets all the press, and that's why we pay attention to our cholesterol and triglyceride numbers. I did that too, and thought my heart was fine-- until being diagnosed with congestive heart failure, which I'd never heard of except in really old people. Turns out a lot of us don't get to be really old before getting it...
1
The more I read about the horrible end of life treatment of American patients, the more I am convinced that when it's my turn, my end of life will be in my own hands. I think I should start planning a move to Oregon.
40
Either that, or have a vet take care of you. Vets are far more compassionate about avoiding pain in animals. I want a vet to take care of me at my end-of-life! I'm an animal, too!
1
Yes, I predict that until and unless end of life care - and our ability to choose our own manner and time of death when faced with a certain uncomfortable end - changes significantly, Oregon and other states like it will become meccas for aging Boomers. (That's where we're considering retiring, for that reason among others.)
That is a good idea. However, from what I have heard, even in Oregon, you have to have a "terminal illness" that will kill you in 6 months to qualify for assisted suicide. So your MD may not feel that your particular illness will kill you in that short window. And then you are on your own.
1
One hurdle to compassionate care for patients dying of heart failure is that cardiologists, by and large, focus only on procedures, not patient care. Does the patient need a cardiac catheterization? Doe the patient need a pacer and an EP study? Should we do yet another echo or perhaps a cardiac MRI? The actual patient's needs for comfort and counseling about the inexorable march of mortality is lost in the high-tech frenzy that is modern cardiology.
My own father is 92 years old and has advanced congestive heart failure. When his cardiologist scheduled him for a pacer-defibrillator I told him absolutely not. The cardiologist was incensed, explaining that the pacer-defibrillator would prevent sudden cardiac death. My response: What's wrong with sudden death when you are 92 years old. Would he wish a long lingering death on my father?
I suggest that elderly patients with heart failure see a good, compassionate internist and avoid the whole cardiology meat -grinder.
My own father is 92 years old and has advanced congestive heart failure. When his cardiologist scheduled him for a pacer-defibrillator I told him absolutely not. The cardiologist was incensed, explaining that the pacer-defibrillator would prevent sudden cardiac death. My response: What's wrong with sudden death when you are 92 years old. Would he wish a long lingering death on my father?
I suggest that elderly patients with heart failure see a good, compassionate internist and avoid the whole cardiology meat -grinder.
102
Good for you, JP! Our American "healthcare system" is almost entirely profit-driven/profit-focused. The patient and his/her care get little concern unless they have a strong advocate. I hope your father can and does appreciate your strong actions on his part.
5
I agree.
Great article. Instead of the medical community pumping themselves up with the fact that they know so much about heart disease with the use of statins and blood pressure meds, cardiologists need to understand that they really don't understand the heart at all, and start from there.
11
I wish I could give this column fifty stars. Even if you are at peace with dying, you CANNOT die peacefully if you are drowning or suffocating. If you are struggling to breathe, you are panicked and terrified, no matter what. It is cruel in the extreme to expect people to just lie in bed and tolerate this kind of death.
The medical community owes us better than this. Doctors and nurses: Come up with some protocols and be ready to offer them to people. Explain to people what is happening with their bodies. Don't pretend people are not dying if they in fact are.
The medical community owes us better than this. Doctors and nurses: Come up with some protocols and be ready to offer them to people. Explain to people what is happening with their bodies. Don't pretend people are not dying if they in fact are.
128
Patients with lungs full of fluid and who are struggling to breathe CAN be made very comfortable with the use of morphine. Just ask any knowledgeable hospice nurse or hospice physician.
1
The good news is that articles such as this and the ACA are helping to change the end of life experience. I've seen it at the hospital I work at and with my own mother, who is going through the dying process with congestive heart failure as I write this.
At my hospital as a dementia specialist, when we first began a push for more palliative care in 2007, MDs were reluctant to ask for the palliative care consult for their patients. It is ingrained in most MDs to save lives, not help the process of ending life. It goes against the Hippocratic Oath of, "First, do no harm."
But eventually, as more MDs became more educated on the benefits to their patients to pass in comfort rather than pain with life saving procedures, attitudes began to change and palliative care consults have risen steadily. It is a widely accepted practice now.
As Dr. Warraich expresses in his article, congestive heart failure (CHF) is particularly difficult to manage in the dying process for optimal comfort. I see it in my own mother's situation. But the alternative, in my mind, is far worse. I think that needs to be understood.
It is with the great work that physician researchers and their teams are doing that we can have the potential for a better passing with CHF, sooner than later.
I am hopeful and thank you Dr. Warraich for helping to push this topic forward. And thank you The New York Times for giving this article the visibility it needs.
At my hospital as a dementia specialist, when we first began a push for more palliative care in 2007, MDs were reluctant to ask for the palliative care consult for their patients. It is ingrained in most MDs to save lives, not help the process of ending life. It goes against the Hippocratic Oath of, "First, do no harm."
But eventually, as more MDs became more educated on the benefits to their patients to pass in comfort rather than pain with life saving procedures, attitudes began to change and palliative care consults have risen steadily. It is a widely accepted practice now.
As Dr. Warraich expresses in his article, congestive heart failure (CHF) is particularly difficult to manage in the dying process for optimal comfort. I see it in my own mother's situation. But the alternative, in my mind, is far worse. I think that needs to be understood.
It is with the great work that physician researchers and their teams are doing that we can have the potential for a better passing with CHF, sooner than later.
I am hopeful and thank you Dr. Warraich for helping to push this topic forward. And thank you The New York Times for giving this article the visibility it needs.
43
"Heart failure" is not difficult to explain. The heart is primarily a pump and when the output is insufficient to perfuse various organ they dysfunction. Typically the kidney suffer disproportionately with the accumulation of nitrogen wastes (creatinine & Blood Urea Nitrogen -BUN) which has widespread consequences.
In addition, if the right heart doesn't pump through the blood that comes to it, fluid accumulates in the body as edema in the dependent areas such as legs (dropsy) and organ below the heart. If the left heart doesn't pass through the blood that comes to it from the lung, fluid accumulates in the lungs (pulmonary edema). It doesn't take much fluid in the lung to cause shortness of breath in contrast to literally liters that can be parked in the general body behind the right heart (anasarca). Of course you can have both right and left heart failure. Leaky valves, arrhythmia and/or poor heart muscle squeeze (myocardopathy) can contribute to the failure of the heart as a pump.
"Heart cancer" is the wrong concept and muddies the cause and therefore the treatment.
In addition, if the right heart doesn't pump through the blood that comes to it, fluid accumulates in the body as edema in the dependent areas such as legs (dropsy) and organ below the heart. If the left heart doesn't pass through the blood that comes to it from the lung, fluid accumulates in the lungs (pulmonary edema). It doesn't take much fluid in the lung to cause shortness of breath in contrast to literally liters that can be parked in the general body behind the right heart (anasarca). Of course you can have both right and left heart failure. Leaky valves, arrhythmia and/or poor heart muscle squeeze (myocardopathy) can contribute to the failure of the heart as a pump.
"Heart cancer" is the wrong concept and muddies the cause and therefore the treatment.
99
Very good reply and explaination of how the heart works and feeds the body.
One thing sometimes helps the struggle of breathing is being given I.V. Morphine.
One thing sometimes helps the struggle of breathing is being given I.V. Morphine.
1
The author uses the term "heart cancer" to illustrate the illogical way that patients understand medicine.
Since cancer is notorious for having a grim prognosis, referring to heart failure as "heart cancer" conveys the life threatening and unpredictable nature of the condition, even though it is not medically accurate.
Since cancer is notorious for having a grim prognosis, referring to heart failure as "heart cancer" conveys the life threatening and unpredictable nature of the condition, even though it is not medically accurate.
1
"...patients don’t respond to a diagnosis of heart failure the way they do to, say, one of cancer..."
Maybe that's because heart failure patients aren't given chemo and radiation, treatments cancer patients fear as much as their disease.
Maybe that's because heart failure patients aren't given chemo and radiation, treatments cancer patients fear as much as their disease.
10
There are only four products or clinical outcomes produced by doctors and hospitals with their patients (preventive, medical, surgical and palliative). Palliative care is by far the most understudied and underfunded and under appreciated of all the outcomes which doctors manufacture with patients.
There is very little known in real time about what are the best diagnostics and treatments for which patients and which diseases. Delayed scientific empiricism rules in medicine.
Isn't it about time we integrated all medical records to reveal what are the best diagnostics and treatments for all patients and diseases in real time? Wouldn't that also tell us when it's time to stop treating and start caring for the dying.
I used to tell my interns and students. We can't cure many diseases, but it's inexcusable to have any person suffer at the end.
There is very little known in real time about what are the best diagnostics and treatments for which patients and which diseases. Delayed scientific empiricism rules in medicine.
Isn't it about time we integrated all medical records to reveal what are the best diagnostics and treatments for all patients and diseases in real time? Wouldn't that also tell us when it's time to stop treating and start caring for the dying.
I used to tell my interns and students. We can't cure many diseases, but it's inexcusable to have any person suffer at the end.
39
Good and needed article. The very term "heart failure" is almost, to me, more than scary than cancer. People know people who have survived years with cancer but "failure" conjures up immediate breakdown. Perhaps it's because of the term that physicians don't like to use it with patients.
While heart cancer is a true misnomer, "Grade 3 (or something) heart condition" or "deteriorating heart" might be more appropriate.
But words aside, it will take solid education that likely will be difficult to fund--after all, big pharma only funds things they can develop drugs for, and heart failure isn't one of them. Also, changes in the way we treat and diagnose disease can take 4-10 years to make a dent in physician practice, given the "percolation" time from expert opinion to the average PCP who ends up treating end of life conditions.
But yet, please let terminal heart failure patients die at home. For these types of patients, as well as cancer patients, making them face the noise and sterility of the hospital is far more cruel than being at home with sufficient care mechanisms in place to keep them comfortable and among the familiar and the loved.
In the end, isn't medicine about humane treatment, and compassion in general from life's inception to its end?
While heart cancer is a true misnomer, "Grade 3 (or something) heart condition" or "deteriorating heart" might be more appropriate.
But words aside, it will take solid education that likely will be difficult to fund--after all, big pharma only funds things they can develop drugs for, and heart failure isn't one of them. Also, changes in the way we treat and diagnose disease can take 4-10 years to make a dent in physician practice, given the "percolation" time from expert opinion to the average PCP who ends up treating end of life conditions.
But yet, please let terminal heart failure patients die at home. For these types of patients, as well as cancer patients, making them face the noise and sterility of the hospital is far more cruel than being at home with sufficient care mechanisms in place to keep them comfortable and among the familiar and the loved.
In the end, isn't medicine about humane treatment, and compassion in general from life's inception to its end?
26
Patients and caregivers have to be education on what to expect as the CHF worsens. The difficulty in breathing can induce panic reactions in the patient and witnesses, who often then call 911. Not everyone with CHF will die quietly in their sleep or suddenly from a sudden end of beating or fibrillation which also results in fairly quick unconsciousness.
4
I was diagnosed with CHF shortly after my wife died of Alzheimer's in the spring of 2011. The first thing that was given me was a strong diuretic which dropped about ten pounds off my weight right away. Now I continue with 40mg of furosemide daily and my weight keeps nicely under 150 pounds. The other day a nurse listened to my lungs and found they were all clear. Also, my O2 was at 98%. So, at the age of 86 I feel I have another decade? ha ha?
20
Wish you luck!
4
It's hard for doctors to discuss death with patients because, for most, it represents failure. Too many people believe that modern medicine can treat anything if everything is done. Well meaning relatives as well as the internet provide a wealth of lousy, irrelevant information. Heart disease victims fight a "battle" which is lost when they succumb to illness (even if they didn't battle by quitting smoking earlier), while medical professionals are suspect if they don't do what patients suggest. The bad news is that people die, and no one likes to listen to bad news.
59
As a fellow ICU RN I agree with you . . . and it's hard to be a part of that process.
1
Yes, We die and we have been struggling with that truth since the beginning.
1
I'm a stone atheist. I can't understand why people who fervently believe in a heaven where they find their dead parents, aren't eager to make the journey. Maybe they don't REALLY believe.
3
With a loved one dying of a heart infection, I was able to get some great information from a palliative care physician. My friend had been an ICU nurse, and she knew that she would essentially drown, as her heart could no longer prevent her lungs from filling with fluid. She was apprehensive about that suffering. But she needed high amounts of supplemental oxygen to stay alive. It was her way out.
The physician was candid in telling us that they could manage the pain of low O2 absorption far easier than they could with fluid impeding lung functioning. I guess the latter involves more involuntary brain control in actions to try to cough and clear the lungs. So everyone was on board to wean her from oxygen before her lungs became impaired. With great skill in administering pain control and anxiety medications, the team we worked with helped her leave us very serenely and peacefully. I had feared for a night of suffering. Instead her passing was as calm and trouble free as I could have imagined.
The fact that she had the education and ability to converse with her medical team probably helped. And there was a sense of those at the hospital 'taking care of one of their own' that I'm sure gave the staff extra dedication to prevent suffering. But ultimately, being able to talk and control the process, instead of being swept up by it, made all the difference.
The physician was candid in telling us that they could manage the pain of low O2 absorption far easier than they could with fluid impeding lung functioning. I guess the latter involves more involuntary brain control in actions to try to cough and clear the lungs. So everyone was on board to wean her from oxygen before her lungs became impaired. With great skill in administering pain control and anxiety medications, the team we worked with helped her leave us very serenely and peacefully. I had feared for a night of suffering. Instead her passing was as calm and trouble free as I could have imagined.
The fact that she had the education and ability to converse with her medical team probably helped. And there was a sense of those at the hospital 'taking care of one of their own' that I'm sure gave the staff extra dedication to prevent suffering. But ultimately, being able to talk and control the process, instead of being swept up by it, made all the difference.
130
I just copied your description and am going to put it with my advanced directive so my family and caregivers know what I expect if I am unable to communicate at that time. Thank you.
This is so true -- I was my mother's health care proxy, but didn't hear the words "heart failure" until near the end. She was begging for water all day, every day, but the doctor wouldn't discuss stopping the water restriction, even though she had an advance directive. The word "hospice" was never said to me.
36
All too often we don't prolong life, but delay death. I think the real problem is the American public's inability to accept our own mortality. There is no cure for death - regardless of the treatment regimen the ultimate outcome is ALWAYS the same. We collectively assume that there will always be a pill, surgery, implant, or transplant to avoid death. Worse than the unsustainable cost of denying our mortality is that people die poorly, as you articulate.
Thank you Dr. Warraich.
Thank you Dr. Warraich.
112
Excellent work and calling attention to a major issue.
The problem with hospice/pal care in heart failure is that most hospice has been organized around cancer. There, stopping futile drugs (i.e. chemotherapy) is a major goal to minimize side effects in dying patients. But stopping most heart failure medications may make patients feel worse - more short of breath and weak. This becomes a problem when patients are on intravenous medications like diuretics and then can't get accepted to hospice because they're on them. Changes to cardiology are definitely necessary, but so are changes to the hospice/palliative care community's notion of what palliation looks like in this disease.
The problem with hospice/pal care in heart failure is that most hospice has been organized around cancer. There, stopping futile drugs (i.e. chemotherapy) is a major goal to minimize side effects in dying patients. But stopping most heart failure medications may make patients feel worse - more short of breath and weak. This becomes a problem when patients are on intravenous medications like diuretics and then can't get accepted to hospice because they're on them. Changes to cardiology are definitely necessary, but so are changes to the hospice/palliative care community's notion of what palliation looks like in this disease.
156
Excellent piece, and agree with Mary. Though my mother's end was peaceful and her hospital stay was short, she really never should have been placed in an ICU, but instead helped to die peacefully.
23
Hospice is a questionable palliative God.
If the goal is comfortable, dignified death where the patient is still totally in charge, we need to fundamentally rethink hospice.
When I recommend hospice, I find my patients in a very rapidly escalating cycle of being slightly dyspneic, getting morphine, which leads to being confused. This in turn is "comforted" with ativan and then followed by secretions decreased by atropine and the end follows very shortly.Regardless of whether it is in the first month or the last week of their terminal 6 months mark. Simple corrective measures like dehydration, constipation etc that might help meet the patients goals are lost
I had envisioned hospice as a whack-a-mole game where the patient will still get to enjoy some months of managed quality of life in exchange for giving up on the "aggressive" treatments, but inevitably the cycle mentioned earlier of morphine-ativan-morphine-ativan-atropine anecdotally usually shortens that time frame even if the Hospice was started 6 months ago in a terminal multiple myeloma patient who wanted to enjoy the last six months to a mere two to three weeks.
There needs to be more research,more training both for the physicians not in palliative care and also to the palliative physician that the goal is not just early death but death with the least amount of pain, discomfort and still as much time to the patient as possible.
If the goal is comfortable, dignified death where the patient is still totally in charge, we need to fundamentally rethink hospice.
When I recommend hospice, I find my patients in a very rapidly escalating cycle of being slightly dyspneic, getting morphine, which leads to being confused. This in turn is "comforted" with ativan and then followed by secretions decreased by atropine and the end follows very shortly.Regardless of whether it is in the first month or the last week of their terminal 6 months mark. Simple corrective measures like dehydration, constipation etc that might help meet the patients goals are lost
I had envisioned hospice as a whack-a-mole game where the patient will still get to enjoy some months of managed quality of life in exchange for giving up on the "aggressive" treatments, but inevitably the cycle mentioned earlier of morphine-ativan-morphine-ativan-atropine anecdotally usually shortens that time frame even if the Hospice was started 6 months ago in a terminal multiple myeloma patient who wanted to enjoy the last six months to a mere two to three weeks.
There needs to be more research,more training both for the physicians not in palliative care and also to the palliative physician that the goal is not just early death but death with the least amount of pain, discomfort and still as much time to the patient as possible.
63
not my experience with hospice/pal care
5
You must have pretty lousy hospice physicians where you are. To prescribe Ativan for confusion is bad enough to prescribe it to a patient receiving morphine or another opioid for pain is even worse as Ativan and the other benzodiazepines actually interfere with the analgesic effects of opioids. Atropine can also add to confusion. Therefore the combination you describe makes no sense.
8
My mother was in a hospice residence and what you describe was not what she experienced either. The care was compassionate and wonderful.
18
I have been living with coronary artery disease since I was 39, his summer two weeks after my 54th birthday I was diagnosed with Congestive Heart Failure and all this time no medical professional has ever mentioned the high likelihood and possible certainty of me having a shorter life. Its seems I'm the only one who can out this together and realize I'm not going to make it to a ripe old age. Also being a cancer survivor, Hodgkin's Lymphoma at 21, relabeling heart disease as heart cancer makes a much bigger impact. Using the term disease sound like having the flu, measles or something; fail stress test have a stent put in and everything is fine. Calling it cancer makes it much scarier and it should be. Reading this article opened my eyes even wider, thank you. Hopefully now I can get my doctors to face what I truly need to face so I can ensure I live fully and provide for my family when that time comes.
50
This is a well considered article.
The problem is betrayed by the editors' descriptive, "Doctors still aren’t very good at easing an end that can be very difficult."
Doctors are not doing that. They are not trying to "ease the end." That is somebody else, hospice. That is what patients get after doctors, not what doctors do.
That should change. I am very uncomfortable with the way a line is put between medical care and hospice care. I have lived that with a couple of elderly relatives, and it was very frustrating and inefficient.
Hospice needs to enter the picture earlier, and it needs more help from doctors. It ought not be so much either/or.
Our present way of doing this is a function as much of medical insurance as of anybody's idea of best medical care. Different coverage kicks in, with different rules. A patient can get more help with many things in hospice, like nursing attention, but the patient must give up doctors and medications to do it. That is a nasty either/or focus on money instead of people.
Every case is unique. Each patient has different needs. Doctors and hospice nurses always acknowledged that, in my experience. They were helping us fight our way through the insurance thicket.
The problem I experienced was not doctors, and certainly not hospice care nurses, but instead it was frustrating for all of us together.
Our twisted medical insurance system is causing people to die in pain, with unnecessary suffering, even unnecessary expense.
The problem is betrayed by the editors' descriptive, "Doctors still aren’t very good at easing an end that can be very difficult."
Doctors are not doing that. They are not trying to "ease the end." That is somebody else, hospice. That is what patients get after doctors, not what doctors do.
That should change. I am very uncomfortable with the way a line is put between medical care and hospice care. I have lived that with a couple of elderly relatives, and it was very frustrating and inefficient.
Hospice needs to enter the picture earlier, and it needs more help from doctors. It ought not be so much either/or.
Our present way of doing this is a function as much of medical insurance as of anybody's idea of best medical care. Different coverage kicks in, with different rules. A patient can get more help with many things in hospice, like nursing attention, but the patient must give up doctors and medications to do it. That is a nasty either/or focus on money instead of people.
Every case is unique. Each patient has different needs. Doctors and hospice nurses always acknowledged that, in my experience. They were helping us fight our way through the insurance thicket.
The problem I experienced was not doctors, and certainly not hospice care nurses, but instead it was frustrating for all of us together.
Our twisted medical insurance system is causing people to die in pain, with unnecessary suffering, even unnecessary expense.
183
Our twisted medical insurance system should be featured in every article about medicine. Our fear of government and unwillingness to tax the wealthy is at the heart of so many unsolved problems. Thank you for pointing it out.
16
Thank you for this. My mother died of heart failure two years ago at the age of 91. She was miserable for weeks in an understaffed, but supposedly four star nursing home. It was terrible for her and we were helpless with only one nurse for 50 patients at night and a doctor who could sometimes not be found. I can't imagine how a patient who feels she is drowning could be made more comfortable, especially with staffing problems, but you are right: heart failure is not understood by the general public as a major end of life event.
101
Let patients make end of life choices as in Oregon.
71
Won't it be grand if that occurs. When I think of how we allow/require people to die in America, I'm reminded of the comment from Ghandi who, when asked what he thought of Western Civilization, said: "I think it would be wonderful."
13
.....and Vermont!
2
More people saved from heart disease = More people who die with Alzheimer's Disease?
14
More people saved from cancer=more people who die with Alzheimer's Disease or something else.
My Aunt had bypass surgery only to die a painful horrible death from colon cancer less than two years later. But she never had Alzheimer's Disease.
My Aunt had bypass surgery only to die a painful horrible death from colon cancer less than two years later. But she never had Alzheimer's Disease.
9
As a person who has learned through genetic testing that heart disease runs in my family, but also that I am at very low risk for Alzheimer's, I hope you are not suggesting that people suffering from the former should not be helped. That certainly wouldn't make sense, particularly as heart disease generally makes its presence known much earlier than does Alzheimer's. Should people with other dread diseases, such as cancer, also not receive lifesaving treatment, for fear that they will eventually die of something else for which an effective treatment may well be developed in the meantime?
11
The undeniable fact is, unfortunately we will ALL die of something some day.
11
When a friend in another city went home on hospice, they refused to visit her on weekends or even stop by daily. I struggled with help from family and neighbors to keep her clean, dry and out of pain. Hospice just wanted her to go to the nursing home, arguing that didn't have staffing to help keep her comfortable. I've been told some hospice agencies are great. The two I've dealt with were anything but. If I sound angry, that's because I am. To my mind, these agencies were running a Medicare-financed scam.