An old medical joke goes like this:
An oncologist goes to check on his patient, a 90 year-old man with Alzheimer's disease and metastatic pancreatic cancer. The doc is about to start him on a new round of chemo, but when he goes to the patient's room, he's not there.
He demands of the nurse, "Where's my patient?"
"He took a turn for the worse and was transferred to the ICU. He looks like he's reached the end."
"My patients don't just die!" he says as he picks up the bag of chemo and marches to the ICU. When he gets there, he asks the charge nurse where he can find his patient.
"I'm sorry, Doctor, but he's gone. He was just at the end of his road."
"But where is he?"
Thinking the doctor wanted to pay his last respects, the nurse told him, "Connell Brothers Funeral Home."
The doctor picked up the bag of chemo, got in his car and drove to the funeral home. When he arrived, he marched up to the funeral director and said, "Where's my patient?"
"He's in the viewing room, sir."
The oncologist marched into the viewing room with the bag of chemo, ready to hook up his patient...but the casket was empty.
"Where's my patient?" he asked of the man in the suit.
"I'm sorry, sir, he's in dialysis."
Americans are, in general, people of faith. We believe in certain principles, such as freedom, liberty, and equality. Most Americans even believe in an unseeable, unknowable being in the sky. But there is one thing most Americans do not believe in---death.
Death is as foreign to Americans as sub-compact diesels, siestas, or socialized medicine. Anyone who works in a hospital knows that the intensive care unit is full of patients who should be dead. They are hooked up to breathing machines, kidney machines, machines to pump food into their stomachs, etc. They have a near-zero chance of meaningful recovery. Still, families often demand of doctors that we "do everything".
But "everything" is a pretty vague idea. No one wants to feel responsible for the death of a loved one. If you ask someone, "do you want us to do everything or to let them die," the answer will usually be, "do everything." End of life issues need to be addressed early and often. We need to impress upon our patients that death is where we are all headed, and it can only be evaded for so long.
I had a patient once who had a history of kidney cancer. She was supposed to get yearly CT scans to check for recurrences. At the age of 76, she also had severe heart failure, but it rarely bothered her. Still, heart failure like hers carries a high risk of dropping dead. On one visit I asked her when her last CT for the cancer was. She said, "do you really think I need it?"
"Well, if you have cancer in there, the scan will find it. Removing it early can give you a lot more time."
"Doctor, you do realize that I'm not going to be alive to worry about it, don't you?"
No one likes to face mortality, but it's still there. Part of health care reform must be "culture reform". We need to remind ourselves that just because we can do something doesn't mean we should. But how do we make these decisions? How do we decide to withhold dialysis from someone? Based on life-expectancy? Quality of life? Religious preferences?
None of these questions has easy answers, but other countries have some pretty simple approaches. They recognize that no matter how much you spend, no matter how much you do, everyone dies. The death can come at home surrounded by family, or in the hospital sucking up resourced for futile care. These choices aren't really as hard as they seem. We have data to guide us, and quite honestly, if more Americans saw what goes on at the end of life in a hospital, we'd have a lot more empty beds.
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By "how do we decide" do you mean in the form of laws, regulations, policies?
I'd prefer more input from the old people, and I don't mean AARP. When an older person has retained mental capacity, they will usually say "don't do everything" or "let me die with a little dignity" or "I hope I go fast because I don't want to be an invalid" or something along those lines.
We also need honest advice from doctors, like that my Dad got when he was diagnosed with Stage I NSCLC recently. While he was offered the most aggressive treatments possible, the doctor that made the most sense was one who suggested a round of radiation to slow it down enough that something else would cause his death.
Laws or rules might (and in many cases, reasonably) say that over 80, no treatment would be provided.
IMHO one of the simplest changes would make a world of difference: just set a statutory default advance directive [1] at a reasonable compromise level ("comfort care only" is mine, thank you.) Anyone who actually wants something else for themselves can register a different choice, so there's no loss of freedom.
After all, we effectively already have a default: "spare nothing, do anything to prolong my death."
I'm not at all persuaded that most people want that for themselves, but by the time the question arises nobody's asking them any more.
[1] Yes, I have one on record and a link to the AZ registry in my wallet. Maybe I should have the damn link tattooed.
I would love to hear the conversation on this blog (or another) about how primary care physicians approach family members caring with aging parents with chronic diseases coupled with dementia (e.g.,CHF, emphysema, high blood pressure, etc). I'm a 59-year old only daughter of an 88 year mom with late stage dementia and all of the above. Mom was diagnosed with dementia after a small heart event; I've kept track of her conditions on the internet. Picture the scene when she must come to the doctor's office -- to satisfy insurance requirements that she has been seen by the PCP in his/her office -- that was a real delight! Imagine putting a bed-ridden (can't walk) 88-year old demented lady in a "chair car" and take her to a doctor's office where she spends literally 5 minutes being seen by a physician. He, like his assistant, couldn't get her blood pressure because she became agitated and resistant, and of course he didn't want to cause a scene with her screaming, cursing, swatting at him or the assistant. This is pretty typical behavior in a nursing home; however, I've yet to hear from a primary care physician what the next stage might encompass -- if only to prepare myself mentally for what the end of their parent's life is going to look like. No one, with the exception of visiting nurses, has ever sat down with me and had a conversation that took longer than 60 seconds to give me a heads-up, talk about potential avenues. It seems to me that no one wants to venture a guess about how the end of life will play out, or so it seems, since there is so little importance placed on preparing the family care-givers. I spend time with my husband who has taken this endeavor with me talking about what happens if she gets sick -- an infection or pneumonia seems likely. I don't want her to go to the emergency room and spend 12-18 hours waiting to receive care or put on some high-powered meds and then go through the rehab cycle, which has happened on three separate occasions. Am I angry? I suppose, but I recognize the futility of my anger. Thanks for letting me vent.
My girlfriend's kitty kat was 15, had been treated for several things recently, in the last 6 months dropped from 12 lbs to 5, and in the past week stopped eating totally and couldn't move much or sleep much. This afternoon she put him down. They gave him an injection of barbituates, and he passed out, and after a few minutes, stopped breathing and died. Totally peaceful. Honestly, seeing the process, that's the way I want to go. Not months in bed with specialists trying to torture a few more weeks out of me. Take me for a few days through Paris and Rome, dinner at The French Laundry, a nice Cuba Libre for dessert, and then slip me the phenobarb.
We had a death here in my little village yesterday. And I mean that literally. She had Alzheimer's and her family chose to (and were able to) keep her at home. She died in her own bed. Not a bad way to go.
The classic line is "full of years and honor, surrounded by friends and generations of descendants." Not terribly likely these days when children scatter to the winds, I'm afraid, but the "in her own bed" at least sounds good.
Assuming I'm not done in by a jealous husband or thrown from a horse at 95 [1], I'll take a massive stroke during the night. As long as I get to spend the last few days watching sunsets and thunderheads over the Rio Grande it's all good.
[1] Yup -- happened to an uncle of $HERSELF's.
Even though my mother had medical power of attorney and was executor of the estate and had consensus of the family it took her two days to convince the attending physicians to disconnect the life support for my great aunt. She had been struck by a van while crossing a street.
According to my mother it was obvious from looking at what the body was doing in the bed and the monitor showing no brainwaves that my aunt was never going to recover, yet they insisted on heroic measures.
Within less than five minutes of the machines being turned off she was truly dead.
I realise especially from some of the more sensationalised news stories in the media that there are families who want to keep their loved ones alive regardless of prognosis and little chance of any recovery with a quality of life, however, there are those whose families have to argue with the doctors they do not want artificial life through machines for them.
Deanne D, it sounds like you should contact your local hospice association. They specialize in end of life comfort care, and they may be able to help you with insurance issues. I would not take your mother to the ER if I were in your shoes, frankly. If you are a hospice client they can help you deal with health crises in the home, right? If you go to the ER, you run the risk of dealing with your mom in an ICU for months for no reason, because once you're in the hospital they seem to feel obligated to go for the massive interventions to prolong "life."
It's not what I'd want if I were in your mother's shoes either. Just my opinion, of course.
Some year ago Tony Robinson (of BlackAdder and Time Team fame) made a film entitled "Me and My Mum" about senile dementia. In the course of making it his mother died. Of particular interest in this discussion is the scene where Tony is discussing his mother's treatment with his mother's doctor. I paraphrase, "Best to just let her slip away."
Coming from the medical field I can honestly say that many doctors are afraid to broach the end-of-life discussion, often because many family members simply freak out. They don't WANT to hear it, several of them become offended; citing moral, religious or cultural reasons that it is not 'man's place to decide when the time is right'.
Thankfully Oncologists don't have this problem. Many of them know the patient and their families quite well. Several of our patients have documents on their charts stating 'call THIS family member in case of emergency' because they know a particular child may choke and revoke their living will. And yes, even if you have all the paperwork in place, if your next of kin panics and says 'do something' we have to do something or the lawyers will have a field day with our hospital.
And sadly, I have already had to run interference in the waiting room to prevent a daughter from walking in and seeing them working on her mother. We got the patient's husband on the phone in order to confirm the DNR choice of the patient's living will. We had to pronounce her, clean her and make things presentable before I was finally permitted to bring the daughter in. This daughter was fully aware of her mother's condition (stage IV Lung) and yest she still would have insisted on seeing her mother suffer on machines and tubes.
I don't know if there is a better way to prepare our children to make these decisions. Definitely talking about the issue calmly and clearly long before hand is a plus, but sometimes people just don't seem to be able to 'let go'. Our chief RadOnc blames Soap Operas.
Personally, I cannot speak highly enough of hospice care. My Mom and two subsequent step-moms have died. Two of them went quickly without any need for nursing homes or hospice care, but the third had hospice care for almost 5 months.
(We didn't have much luck with home-health care, those who were supposed to help with "ADLs". We found that relatives, supplemented by paid household help was much more effective. I realize that most people do not have numerous relatives around to help or the cash on hand to pay for household help. We were lucky.)
The last hospice nurse stayed with us for over 24 hours. She kept us informed - ie, she's "actively dying" and helped all of us cope with the impending death as much (more?) as she helped my step-mom.
It's not easy watching someone die. And, it's really not easy for someone who has some part of their mind left to let go. We want to live.
I'm not American, but I think we Canadians are no better at letting go...
It's easier to think about in the abstract, saying no to the extraordinary measures. When my father was dying of lung cancer at 54, the hospital staff asked if we wanted a DNR order if he stopped breathing. We agreed to it, but I have to say it was such a hard thing to reconcile inside my head - part of me knew it would just be torture to resuscitate him, if they could. He was terminal, it was hopeless. But part of me also didn't want to let my Dad die.
I'm so glad you've addressed this subject. My uncle and my step-father died under such totally different circumstances. My stepfather had been diagnosed with colon cancer and was accepted into an experimental trial. He was one of only 5 or 6 who finished the treatment (out of 60, I believe). When the cancer returned about 8 years later he made the decision not to undergo chemo or other treatments. We respected his decision and out of love and respect for him and his wishes we basically helped him die. It was an amazing journey in which he rallied for a year, relapsed and then passed away quietly one afternoon. It was what I call a beautiful death. Something that seems to be at odds with our culture.
Our elderly uncle (in his 80's) had battled prostate cancer with treatment. Several years later when cancer returned the family insisted that he seek aggressive treatment. We're not quite sure what his real wishes were because I don't think they asked him! They also insisted on throwing a large birthday party - against his wishes. I remember standing in that gathering, seeing how frail and sad he was, thinking to myself, "His treatments are killing him faster than the cancer." Our aunt said to us after his death, "That last treatment did him in." I felt like screaming, "Then why did you allow it?" Oy.
My question is this, just because we have the technology, does it mean that we must use it? Some things are best left to nature.
Deanne - I feel for you. We are in our 60's, in dicey health ourselves and fast running out of energy. It's at this point in our lives that we find ourselves dealing with an 88-yr. old parent who is on the downslide. I feel very stressed and alone. I'm having to make decisions and contact her doctor on the sly because I know he's not aware of all that's going on. SHE certainly won't tell him. The list of trips to the hospital and in home crises are driving me to the brink.
Have you heard this one?
There's good news and there's bad news.
The good news is we're living longer.
The bad news is we're living longer.
- Suzanne
Pal, thank you for writing about this. "Do everything" is the mantra of my MICU. "Futility" is a bad word, even when true. Most disturbingly of all, again and again I see the patient's own wishes ignored and the family's wishes respected.
For example: We have a 95 yr old woman who, despite a debilitating neuro-muscular disorder, has been living independently until this hospitalization. Even though she is intubated, she is as alert, oriented, intelligent and sane (maybe more so) as any doctor or nurse working in the unit. She made her wish to be extubated, knowing she will die, CLEARLY known to nurses, doctors and her family. Instead of respecting her decision, the team doubted her "competence." When both neurology and psychiatry declared that she is indeed competent, the team still wasn't satisfied. Her daughter wants her to undergo further treatment. So all day we flooded her with fluids, despite the fact that she is in renal failure, and today she will have to have a large catheter placed in order to be plexed. Now she will probably need dialysis, too. Additionally, she has a dental filling in her right bronchus so she will need a bronch as well. Instead of respecting this woman's autonomy and allowing her a peaceful death, we will flog her to death. I did call the Hospital Ethics Committee (of which I am an active member) but it won't make any difference. The sicker she gets, the less her wishes will be remembered, much less respected. And guess what? She's still going to die.
My role as a nurse in all of this? Hitler's willing executioner. At least that's what it feels like, since I am the one who must "follow orders" and do the actual flogging.
Our society is in big-time denial of death.
Part of this has to do with lack of medical knowledge (as Sheril and Chris pointed out in Unscientific America, just consider the number of successful codes on the TV show ER compared to the number of (un)successful codes in real life), part of this has to do with the family not wanting to feel responsible for the death of their loved one, part of this is due to the unwillingness (fear of lawsuits) of physicians to stand up and say "your x is very sick and going to die, there's nothing we can do." Because we can always do *something* right? Right?? (Never mind if that "something" is simply not going to work.)
But the biggest problem, as I see it (and I am in the South) is religion. People actually believe that "there is no such thing as an incurable disease." (Last week a patient's mother told me this emphatically.) People not only believe in miracles, but also that they, personally, will be granted one. One time, after a patient died a particularly horrible and prolonged (months) death, his wife stood over his corpse for hours, chanting and speaking in tongues, FULLY CONVINCED that Jesus was going to bring him back from the dead. We had to call security to have her removed from the unit.
Given the current crisis in health care, we would do well to use our resources judiciously. When did death become unnatural?
Sometimes the whole thing can get absolutely screwy.
I remember an older patient of mine, 85 at least. When he transferred to my practice he already had metastatic squamous cell skin cancer in the nodes of his left axilla, an 8cm aneurysm of his thoracic aorta and a 9.5cm aneurysm of his abdominal aorta. All of this was diagnosed during a hospital stay for near fatal West Nile virus infection.
What was his primary concern when I saw him? That I check his cholesterol level.
My response should have been: Forget the cholesterol, and BTW, now would be a perfect time to take up smoking, drinking and hang gliding.
Catherine, I know it's easy to cheer from the sidelines and a whole 'nuther thing to be in the crosshairs -- so please don't take this personally.
That said, we'd live in a better world when someone in your situation refuses to follow an unethical order. "She has refused consent to that procedure, Doctor, and I won't do it to her." Trouble is, of course, that in the end it wouldn't accomplish anything other than get the nurse labeled a troublemaker. Very few hospitals would be foolish enough to formally discipline someone for refusing an illegal order.
Instead, they'd just arrange for working there to be Hell and for her to be unemployable anywhere else.
Catherine: don't worry we have the same nut jobs in thr north. 95 yo man with advanced dementia coming in for his third or figth aspiration pneumonia. I'm admitting him and talking to the family in the resuscitation bay in the ED. I bring up switching goals of care to comfort care. Yes I do discuss code status with just about all of my admits. The patient's son got very angry with me and told me that when it is time for his father to die, they would get a message from God. At the time I was thinking," there is a message for you on line 1."
When I really do not want someone to be full code I describe a code this way. We will break your rib cage, use electric shocks, put a breathing tube in you and if you are stabilized take you to the ICU where you have at best a 14% chance of leaving the hospital in the same state as you are in now. Normally the patient chooses to be full code.
An answer to the "give God a chance to perform a miracle" is a basic one of medical ethics: once you've transferred a patient to a higher level of care, you can't just take hir back.
"Well, Ma'am, it's in Heaven's hands now and I'm not qualified to practice at that level."
No offense taken, but we'd live in an even better world when unethical orders are no longer written.
I have never and will never carry out an order for which a patient refuses consent. That would be battery/assault. But when the horse is already out of the barn (the patient is already intubated, has clearly asked to be extubated and her wishes are ignored), there is little I can do. I am not the one who ignores the patient's request to be extubated, places the dialysis catheter, does the bronch, orders the dialysis, etc. When a doctor orders fluids for a patient in renal failure (the same patient who has clearly stated that she wishes to be extubated and die) am I going to give the fluids? You bet I am (and this is why I call myself "Hitler's willing executioner"). The patient has not refused receiving fluids (although she just might if someone would give her the big picture). Even though I know aggressive fluids are ultimately going to be a bad thing for this patient, it is officially beyond my scope of practice to have an opinion on the subject, much less refuse to give fluids. (Of course, there are exceptions. When an unambiguously dangerous or senseless order has been written, even if written by god himself, I don't do it. Usually it turns out to be an error of some sort. Yes, Virginia, nurses DO have a modicum of judgment.) I can privately argue with the docs until I'm blue in the face. I can call the Ethics Committee. When nurses advocate for our patients, we are almost always labeled "troublemakers." I'm quite used to that.
Make no mistake about it: Physicians know when a bad outcome is likely, they know when they are violating a patient's autonomy, but sometimes they do it anyway. Why? The patient is almost certainly going to die. Dead people don't sue but families do. So maybe, despite being officially "competent" by the standards of both neurology and psychiatry, maybe since she is 95 and all, "she's a little confused" about what she really wants.
When the horse is already out of the barn, the best I can do is to be honest with the family and most importantly, make damn sure that my patient dies (unnecessarily prolonged as the death may be) with as much comfort and dignity as possible.
That does it. After hearing all these stories about ignoring the patient's clearly stated wishes, I'm getting "DNR" tattooed across my chest. The living will is going right across my backside.
Fortunately, my wife is onboard with my desire *not* to live as a zombie. I just hope my other relatives don't show up to gum up the works.
On a slightly lighter note, I often hear the question "Am I going to die?" (I'm certainly not a physician, but everybody hears someone ask that question from time to time)
I'm always tempted to say "Yes, but probably not today."
My Dad once said (in response to our statements of concern about his health and his drinking) that his mother died in a rocking chair eating ice cream thinking her heart attack was indigestion, while his father died in a nursing home not knowing who he was, or who anyone else was. He said he'd rather go out the way his mother did.
Unfortunately, it doesn't look like that's the way it's going to happen.
I think, and someone has probably already made this point but i haven't read all the comments, it's the ERification of the world. "Do everything and my mom will be the one in a million that recovers". Totally understandable in the circumstances, but. Just like everyone expects to become rock stars and film stars they expect their medical emergency to be the one case where everything works out. The infantilisation of culture has played a huge part in skewing all our perspectives. Having a standard "keep me doped to the gills" policy would be fantastic, much like it should be standard to harvest any and all organs from anyone who dies; if people want anything different they can specify and that's cool. I am uneasy, however, with what one reply suggested as "over 80, no extreme measure" for, if as is likely to be the trend, increases in retirement age could mean that almost as soon as you stop working you stop getting proper treatment. Retirement is supposed to be a reward not a slow death.
After seeing my dad's life prolonged for 7 months in the ICU after surgery for a coronary aneurysm, I've often stated that it's best to drop dead suddenly. I'm glad that this issue is being addressed and sincerely hope that when the time comes I go quickly, preferably in my sleep. I am now experiencing this same issue with my brother - a diabetic with ESRD and CHF. After numerous hospital emergencies, each worse than the last, I just pray that he doesn't end up suffering the way my dad did. I guess I'm encouraged by the fact that after his latest heart bypass surgery when he didn't wake up from the anesthesia for four days, he doesn't remember much.
If one accepts - as I hope everyone does - that the wishes of the patient are most important then it seems obvious to me that the issue of living wills or the like needs to be discussed very early on. In fact, before people get ill. By the time most people consider such things they're in no fit state to deal with them.
I think that it's something people should discuss with their nearest and dearest will fully fit, along with their preferences for organ donation. Give the subject careful consideration and explain ones desires to those who may have to deal with them.
My grandmother died at home in her bed. She had fallen into a coma after a sudden fever, she was 75. She was in a coma for 11 days, after which the doctors advised my Mom to take her home, which she did without deliberating for too long. My mom is not highly educated but she has been thru a lot in her life and I guess life lessons do count. I was not around when my grandmother died, the pain still lingers, but I did appreciate my Mom's decision to give my grandmother a proper farewell which she highly deserved.
Everyone would like to hold on to their loved ones a little longer even if the person cannot communicate with them. Its a human condition, but I wish the "phenomena" of DEATH is explained to everyone in general so that the struggle with self is not prolonged.
Yeah, not really on-topic -- or maybe it is.
I just finished telling my kids (none local) that our 13yo dog is making her last trip to the vet in a few minutes. We all knew it was coming, but the it's still hard to accept. How much harder for parents?
Laws or rules might (and in many cases, reasonably) say that over 80, no treatment would be provided.
Although I agree with your and Pal's overall point that futile care is...futile, I guess, I disagree with this concept. Age alone is not a good marker of whether care is futile or not. I've given chemo to 90+ year olds (but only in accordance to their wishes in non-demented, otherwise healthy 90 year olds) and asked, "what's the point?" when asked to give chemo to 30 year olds (composite example: 32 year old with end stage AIDS with a bleed in the head that had left her in a persistent vegetative state with pancreatic cancer). An 80 year old is more likely to not benefit from chemotherapy but he or she is by no means certain to have no benefit.
Dr Steve @ 15:
Reminds me so much of my maternal grandparents. My grandma recovered from a near-fatal WNV infection a few years ago, and she's been dogged with serious health problems (many including hospitalizations), as has my grandfather. So why did she choose to get her knee replaced last year? I don't understand it. In general, if there is a procedure available, she wants it, even if the risk is unacceptably high considering the meager benefits. The knee replacement hasn't resolved her pain issues (not all of which were due to the knee), and she has particular issues that make surgery especially dangerous for her. (Paper-thin skin, for instance. The incision tore all the way to her ankle, and her leg had to be immobilized for weeks after the knee replacement lest the wound open up, which basically means the knee replacement left her worse off than she started because she couldn't do the physical therapy.) And this was all just six months after she got out of a nursing home after a prolonged recovery from a nasty case of influenza that just about did her in.
Some people just can't be objective when it comes to health care, it seems. I know if she were in charge of making decisions for me, I'd get heroic measures, and I do not want that.
On the other side of my family, my much more active grandfather just passed away in his home, in hospice care. Whatever killed him was not properly diagnosed; he was in his 90s, and as a surgeon himself, had a pretty good idea that it was probably pancreatic cancer. He did not feel there was much point in getting it diagnosed; he'd rather be as comfortable as possible and pass with dignity. Which he did, though it took much longer than he'd expected.
Every case is different of course; I'm with Dianne @ 27 that we shouldn't pin specific ages to a rule about who gets treatment and who doesn't. It should always be case-by-case.