Can We PLEASE Talk About Death?
I work as a nuclear medicine technologist in a medium-sized imaging clinic, and every day long-term patients come in to get various scans and procedures for their continuing care. Yesterday, for instance, I had 2 patients indicative of much of the long-term care patients: 78-82 y.o. men, conscious, w/ dementia, no verbal communication, and a laundry list of medical problems: severely contracted, diabetes mellitus, osteomyelitis of lower extremities, CAD, history of stroke, PVD, PEG tubes, wound vacs, MRSA, etc.
Not only would these patients never get "better," but their quality of life would never get much better. On top of that, they had no family to speak of--only as legal representatives. The family in these cases usually consists of a niece or nephew or cousin or another somewhat distant relation. The directive is usually the same: keep them alive for as long as possible (as long as we aren't paying for it).
The nuc med doctor takes a very cynical but practical view that these are the patients that are using the most money from the system and have very little positive output to society other than as medicare/Medicaid recipients. This, he says, is the primary motivator to keep cycling these patients through the system: to keep them alive (with family consent) so the various organizations can keep their lights on.
He's cynical, for sure, but he has a right to be: his own daughter was in a terrible car accident many years ago, right after graduating from a medical university as an MD, and now she is bedridden for life, and worse, unable to communicate. She requires 24-hour medical supervision, and this does not come cheap. The good doctor would have retired years ago if he didn't have to pay for her care out of his pocket.
His point is simple: if people paid for the long-term care of their family members instead of leaving it to the state, they would be forced to make the difficult decisions about life or death eventually. As it stands, for all the fears we have of the state making the difficult decisions about our elderly and infirm, the default position is to keep them alive for as long as possible without regard to their quality of life.
We are near the point at which we must, as a society, be able to talk about dying, death and quality of life of our loved ones--as well as relatives we barely know who happen to fall into our legal custody. As a culture, we will avoid this conversation at all costs. The real costs are the quality of life of the relative and the monetary costs that the rest of us must bear.
The short of it is that both patients I had yesterday deserve a deep evaluation of their quality of life-to-cost of care. However, we are still like children when it comes to this topic, unable to face the tough questions so long as we can pass the costs on to someone else. The people who lose from this failure are those whose health stands a chance of improving, yet cannot afford healthcare, patients who suffer their lives away alone in bed, and everyone of us as taxpayers.
It's definitely a necessary conversation, but a very difficult one. What you are essentially suggesting--that it might be okay to let people die if they don't have anybody they love to cover their medical bills--is very similar to the argument that people who can't afford health insurance don't deserve expensive life-saving treatment.
These are very tricky issues. How can we determine definitely what someone's quality of life is? How can anyone judge when someone else should die. They're unanswerable questions, really, which is why I think we avoid them.
I say this as someone who very recently gave the ok to deny care to a terminally ill and fiercely loved family member. But it wasn't my decision. There was an advance directive in place decades ago, so there was really no other option. Short of a crystal clear decision by the holder of the life, how can we make a decision to end it?
November 5, 2009 12:25 PM | Reply | Permalink
That's certainly not what I meant to imply. My point above is that if people had to pay for the long term care of loved ones, they would be much more apt to make a decision about cost-to-quality of life.
As it stands, people can avoid that difficult decision BECAUSE they have no financial burden to bear. Is there a way to motivate someone to have that conversation even though they have no financial stake?
That's the direction this conversation needs to go, I think.
November 5, 2009 2:04 PM | Reply | Permalink
But you see, it's about way more than money. When it comes to loved ones, letting go, evaluating the quality of remaining life, the price tag is tertiary. Most doctors/hospitals are obligated to do what they can to help patients unless otherwise ruled out. Money isn't the deciding factor, as hospitals will often swallow the costs of helping the patient.
When you make a financial burden the decision-maker whether a family lets a loved one live or die, then you've dumped end of life decisions onto an even more unequal playing field. And it sounds to me like trying to decide if you should give you dog that $2k operation or "put it to sleep". Sounds kind of distasteful, to me, when you are dealing with grandma.
November 6, 2009 2:31 AM | Reply | Permalink
"your dog"
November 6, 2009 10:58 AM | Reply | Permalink
'The nuc med doctor takes a very cynical but practical view that these are the patients that are using the most money from the system and have very little positive output to society other than as medicare/Medicaid recipients.'
I hate it stated in terms of 'positive output' value. I get what he means about their being of value to hospitals, but I wouldn't have thought that the medicare/medicaid reimbursements DO help hospital bottom lines, for one. But forcing families to pay for long-term care isn't the answer. A family might go bankrupt before it would be evident that their relative is suffering, or near brain-dead, say.
So many people try to get their parents, grandparents, to sign living wills, but they just don't get it done. And many doctors seem afraid of the subject as well.
Our fear of death is one of the reasons we pay doctors the big bucks, isn't it? Especially surgeons.
Years ago CO Gov. Dick Lamm tried to have 'the conveersation' about end-of-life health-care issues. He came off sounding so utterly callous in sound-bites, that he lost re-election.
My kids know I don't want to to live like that; I wish all states could enact right-to-die laws at the very least.
I hope we can start having the conversation, but there are sure a lot of dangers lurking in deciding for someone else who hasn't requested 'no extraordinary measures' be used.
November 5, 2009 12:52 PM | Reply | Permalink
No doubt about it, these are thorny, difficult, emotionally volatile issues, and I'm not sure how to go about having the discussion any more than anyone else.
But we have to start somewhere. I think right now, we don't necessarily HAVE to have the conversation, yet. I say that because the medicare/Medicaid system has not YET broken the back of our country. But at current rates, it most certainly will, and you probably know this.
The difficult part is putting a cost on peoples' lives. No one wants to say what the maximum cost of a person's life is or isn't, that's why people with very low qualities of life are kept alive WAY beyond any reasonable measure--because no one wants to go to sleep with the idea that another uncaring institution could put them or their grandma "out of her misery" when it would be against the person's wishes. That's horrifying.
But at the same time, the current situation is unsustainable over the medium and long term, meaning 15 to 40 years. We simply cannot afford it. And no, I am NOT an advocate of letting the state decide when someone's quality of life is low enough to pull the plugs. A AM an advocate of families and outside agencies (like, uh, I don't really know, but not the state) having input on that issue about specific circumstances as they happen and when the family is not there to make that decision.
How can we start to evaluate "quality of life"?
November 5, 2009 2:00 PM | Reply | Permalink
I don't know how we can on a wide scale. And I know that your job must put the issue into focus that others of us can ignore.
My husband recently went back to his family home to essentially say goodbye to his mother who will die soon (hopefully) of Alzheimer's. Her brain has shrunk 15-20%, she has multiple infections, discomfort, but not so much pain, but dozens of medications that seem to make her worse in some instances. She had a crisis recently, and the head nurse said she only had days to live. (it ended up not being so.)
The rest home she is in has incredible nurse's aides, but they are low-paid and there is great turnover. Her husband is 92, goes twice a day to see her; she falls, she rarely knows anyone but him, didn't know my husband when he visited. I was praying she might die while my husband was there, for many practical purposes. I can only think life will get even more awful for her, and soon. When she was a bit more aware, she said she wanted to die. My husband's sister wishes she could pillow over her face. But her Husband seems to want every measure taken to keep her alive, and even more Normal. He actually took her for new eyeglasses, as though they would be useful. He, of course, has authority in her care, but what I am saying is that he seems to think there is some reason to keep her alive, even though he is suffering through caring for her this way. He sees something there, or else he just can't want to let her go. What a pickle. He may end up dying before she does, ironically. Good grief, what hard decisions.
I think that it should not come down to monetary decisions about Medicare/Medicaid anyway. Those programs should be funded more realistically. We find 100 billion dollars a year for wars, or more.
It is such a ticklish issue; one of the anti-health reformers (Dick Armey, maybe?) has a new website, "Don't kill grandma dot come." And we are off to the races before we even have the conversations. It's brave of you to try to start it.
November 5, 2009 4:54 PM | Reply | Permalink
Please know my heart goes out to your husband and his difficult position. There's just no way a person can make decisions of this nature for someone else, and I hope I don't come off like I think it's my place to do that.
My hope is that at some point, if we can learn how to have this conversation with our families, we can start to step in the right direction of patient care. I truly believe that the sooner we can make these tough decisions, the better everyone involved will be.
I guess I'm dancing around it: the sooner we start to make decisions about ending the lives of people we love who have lost any possibility of a decent quality of life (whatever that means), the better for everyone. Some people will still want to keep their family alive regardless of the perceived quality of life, but nonetheless this just seems like the right way to start thinking about it. No one wants to willfully end the life of a mother or father, or God forbid, a husband or wife, but everyone deserves the consideration of this possibility.
November 5, 2009 8:36 PM | Reply | Permalink
Well, I hope someone puts me out of my misery before I get to that point, I will tell you that for free!
November 5, 2009 11:57 PM | Reply | Permalink
I do not know. This is a complicated situation.
The issues are moral, economic, cultural, medical, psychological, political,sociological, religious...no reason to go on.
The Germans in the early third of the last century were dealing with the issue in much the same way we were here. Non productive members of society should be put to sleep like a dog that has mange.
So every time the issue is brought up, nazi philosophy comes into the discussion.
A lot of hospitals besides insurance companies have 'death panels'....that is a fact of life. Decisions are made as to who gets a liver transplant or a kidney transplant. So many donors to go around and there is the issue of money and the hiding behind concepts like pre-existing conditions. The odds of survival for someone with multiple problems is discussed.
All this before we even come to the issue of the old and in firm. Oh these living wills were a propaganda measure to save money. And healthy people in their forties would say:
take me off the machine if it comes to that...
Few people really wish to examine these issues on a personal basis.
IT IS NO FUN. AND IT IS COMPLICATED.
Good post. And it does not look like anyone is attacking you for bringing it up.
And I do not believe that the issues fit neatly into categories of liberal vs. conservative.
November 6, 2009 12:50 AM | Reply | Permalink
Yes, we need to talk about death and "quality of life," but I'm afraid you didn't do a very good job of it.
The biggest and most glaring flaw in your position is that you assume that your (unstated) definition of "quality of life" is a baseline definition for everyone. It isn't.
November 6, 2009 8:17 AM | Reply | Permalink
I've said it before and I'll say it again: my position is not prescriptive any more than to suggest we should learn to start talking about these difficult decisions with our families.
"Quality of life" is most definitely a subjective concept.
Tell me, if you saw someone contracted, unable to speak, who screamed in pain every time he was moved from one bed to another, whose medical problems were so severe and so many that he stood no chance whatsoever, in the most optimistic outlook, of ever recovering, would you at least think that person might deserve a conversation BY HIS OWN LOVING FAMILY about his "quality of life" and the possibility of palliative care in place of therapeutic care?
Lots of people don't like to talk about this and would jump on the opportunity to accuse those who bring it up of being callous, but tell me RTBG, do you have a minimum standard by which you could say "Yes, that person is definitely suffering beyond any reasonable measure. That person has a low quality of life that will never improve."? Or do you just want this conversation to go away?
November 6, 2009 8:43 AM | Reply | Permalink
I didn't accuse you of being callous, and I'm not "lots of people." I accused you of imposing a blanket definition for "quality of life" on the discussion.
Your OP essentially sets up an argument based on reading someone's chart.
Your response to me sets up a similarly facile argument, but uses an emotionally charged hypothetical scenario.
I am not going to agree with your one-sided presentation. That's because it's not for me—or you—to say what anyone else's quality of life should be.
However, I do think end-of-life conversations need to happen, just not on your simplistic terms. If you took your "leading the witness" impulse off the table, we might be able to discuss it. In my real life, I happen to be writing about this very topic. There are many considerations involved beyond strictly pecuniary ones.
November 6, 2009 9:32 AM | Reply | Permalink
All the scenarios are "emotionally charged". To accuse me of artificially endowing the situation as such is yet another attempt to sidestep this conversation.
And that hypothetical I proposed is EXACTLY what I encounter on a regular basis. It's very far from hypothetical for a lot of people.
Again, I think you are not understanding what I'm saying. I want to lead people into having this conversation--NOT one conclusion or the other. I truly believe that if the families in these situations have these conversations out loud, with each other, and with the doctors involved, some of them will opt for palliative care in place of therapeutic care.
BTW, my OP set up a discussion--not an argument--based on my experience with the patients as well as reading their medical histories. Please don't rewrite my post to assume I'm in some ivory tower far removed from this reality.
But you never answered my outlandishly hypothetical question: is there ANY point at which you would say a person's quality of life is unreasonably low and will never get better--by your own standards?
Of course you do. Now what? What can be said from that point?
What have you been writing about this? Is it academic? Essay? From what axiological foundation are you building? This is the discussion I'm looking for.
November 6, 2009 10:52 AM | Reply | Permalink
I'm writing about it for a general (not an academic) audience. It's for a website that deals with aging.
Yes, I personally have thresholds for evaluating a loved one's quality of life, and I am not opposed to doctor-assisted suicide, DNR orders, etc. I agree that people need to broach the topic with their families (and friends) long before the need ever arises.
I've seen enough abuse of the elderly and infirm by families and institutions, however, that I can't fathom a one-size-fits-all solution. Some of the arm's-length parameters that currently exist in the form of laws and regulations grew out of a much worse system than the one we have now.
Since Medicare is age-based rather than income-based, what you are focused on in this post happens to affect the poor and middle-class, not the wealthy. Because, like it or not, what you are saying is that the people who can't afford medical treatment at the end of life are a drain on the system and should be snuffed.
Well, if the wealthy can afford it, they can remain on life support for decades if they wish to. I'm not going to support this position—that if you can pay you can live—and you shouldn't either. Take your concerns for Medicare/Medicaid out of the end-of-life discussion altogether.
November 6, 2009 12:23 PM | Reply | Permalink
What about the question of palliative care versus therapeutic care? That's what I'm really trying to get at here.
So many of these patients are near the end of their lives--whether anyone likes that idea or not is irrelevant. The fact is that no amount of medical care, no amount of love, no amount of knowledge or technology can keep these patients alive forever.
Why subject a patient to serious surgeries, organ transplants or other aggressively invasive procedures when even the most optimistic outlook is a partial recovery with little benefit to the patient?
Here's a crazy hypothetical I encountered a few months ago: a 42 y.o. female with a stage IV atrial sarcoma comes in for a PET scan. She has a history of brain tumors and says she "feels" a tumor growing back in her brain. PET scan is positive for a re-growth of the brain tumor.
Now, if you know anything about atrial sarcomas, once they reach a certain mass and have spread a certain degree, there is very little that can be done to increase the lifespan of the patient. It's been tried. Combinations of surgery, radiation therapy, chemotherapy, diet and medication have been studied closely to reveal that there is no statistical difference in lifespan for those who undergo the most painful, aggressive therapies and those who get palliative care.
So, do you opt for brain surgery to remove the tumor or just let it grow and treat the symptoms?
November 11, 2009 1:19 PM | Reply | Permalink
Thanks for your arguments on this thread, gasket. Just thanks. It's very personally painful for me to see people blithely and simplistically address "quality of life" thing.
A family member put it well once. Every time someone approaches the "but they no longer have quality of life" topic regarding older people, they should think whether they would say the same thing about Stephen Hawking or Christopher Reeve (Most don't realize what a poster child Reeve was against standard living wills-those that say "don't put me on a respirator. He was on a respirator from his accident to the day he died, it's just that he could afford a real fancy portable one and could tolerate a tube that allowed him to talk.)
To think it's ok for Hawking, but not for a seventy-something, is ageism--those arguing that way are no different than the primitive societies who sent the elderly off to die in order to save resources, and those arguing that way must be made to confront that they are actually doing that. It's dishonest not to confront the totality of what one is actually advocating.
And too many of those who speak on this have no idea of how complicated the choices that actually happen often are. All the more simple blathering does is create terrible mental suffering for people making those decisions, for the rest of life, no matter what the decision, one wonders whether it was the right one--i.e., should we have tried that, we shouldn't have done that...
November 6, 2009 2:20 PM | Reply | Permalink
Terrific post, with no clear answers. Highly recommended.
The current health care debate ignores these hard choices because of political considerations. From silly 'death panel' discussions to 'free medical care for all' the discussions are child-like rather than adult conversations that recognize the complexities of life, death and money.
My concern is that once the decision-making moves entirely to the government for all people, not just those over 65 as today, adult conversations will stop forever. No politician will advocate these types of hard choices, as the reactions to the innocuous language around end-of-life counseling shows. It will be a net cost increase for health care as politicians won't ever want to say 'no' to any constituent (or their lobbyist).
November 6, 2009 10:45 AM | Reply | Permalink
Thanks, John.
That is most definitely a well-founded fear. Back when Kevorkian was news, I was full of strong opinions on the subject and thought it would be best to enact legislation in favor of assisted suicide.
Little did I know at the time, but my mother, who had suffered from an aggressive, metastatic breast cancer, and died about 8 years earlier, had asked to die.
The conversation took place between 3 people: my mother, father and the primary care physician. After about 5 years of aggressive treatment, she was not getting any better and she was tired of the pain. She was just plain tired. She was conscious enough to have the conversation and her intent was unambiguous: please kill me.
So, with my father at her side, the doctor infused her with a cocktail that ensured a painless death. This is not something that doctors talk about in passing conversation as the legality of it is grey at best. I'm ok with it, and even at the time, I never felt that anyone had taken these decisions for the wrong reasons. She had suffered enough, in her own opinion, and none of us ever doubted her love for a moment.
The point is that the moment these decisions become legislated, they lose an essential bit of the humanity involved in such a personal decision. That's why my core feeling is that these decisions need to be made within the families involved. I fear the state in these issues. Hell, I fear the state's ability to fairly maintain property rights. No way I want them involved in anything more personal.
There are always people who are wards of the state, etc. where the state is obligated to have a say in these issues. But I don't think it could get any more expensive because as it stands, the default position of these institutions is to keep patients alive regardless of quality of life. And I'm not sure there should be another option for those people.
It's tough any way you look at it.
November 6, 2009 11:20 AM | Reply | Permalink
Sadly, our recent experiences - caught in the medical system - suggests to us that we are no more than dollar signs for hospitals and doctors. That "first do no harm" is barely on the radar screen any more. But... "here, this is what we can DO!" and "take these surgery options!" - that's what's offered. And when the patient decides to "do nothing" unless it's absolutely necessary (I'm talking about Mr. TheraP's side-effects to prostate surgery - which I won't go into here) - they look at you like you must be NUTS!
That's where it starts, you see. To often doctors are trained to provide the treatments they've trained to do. Not the compassion of "First Do No Harm".
Death is part of life. But, like the fictional "freedom" the Tea Baggers want, it comes as a shock to find you can't have total power.
We are at a Great Divide in our country. Some, like little children, call for new and bigger toys, even the granting of wishes for "total freedom" and "never having to die". While others of us want to be sure that the earth's blessings are shared with all.
Peace be with you.
November 6, 2009 10:53 AM | Reply | Permalink
sorry for the typos and grammatical errors...
November 6, 2009 10:53 AM | Reply | Permalink
....That "first do no harm" is barely on the radar screen any more...To often doctors are trained to provide the treatments they've trained to do. Not the compassion of "First Do No Harm"....
My condolences that you and Mr. TheraP had initiation into the club of unhappy users of our system.
As I learn more and more that helps interpret what I have experienced over decades with myself, family and friends, I see this mostly as an effect of specialization, as they become scientists of the body part or system or disease group in which they specialize, and all the high tech treatments available for whatever body part or system that is their specialty. Originally, doctors were not scientists, they were artist-craftsman/detectives dealing with keeping whole human beings operational. The latter is where the "first do no harm" oath, the former is more like this: if you are a cardiac specialist, "first do no harm to the cardiac system"--the unsaid part is "but don't worry about what that might do to the endrincology of the patient nor the patient's kidneys."
The return to prestige for the primary care type of doctor, the detective/diagnostician of the whole body, is really key to us seeing any improvement. Lots of people are fixated on insurance companies right now, but I believe getting rid of them would just be a baby step in improving the problems that all patients who have been seriously ill know. In actuality, reform of Medicare is what's probably going to help us get there. Because Medicare was such a huge giant, it's pay protocols as to practice speciality are what influenced what kind of practice doctors went into. In the end, fee-for-service is one of the main problems, much more than insurance companies, as loathsome as they are--the original HMO's way back when actually had the right idea, even though it was implemented wrong and with the wrong incentives.
While it's no longer possible for a single doctor to keep up with everything necessary now, it is possible to train doctors to be managers and interpreter of a group of specialists, to get them to work as a team, and to make sure that one specialist is not doing harm that another specialist tries to reverse and then causes harm for a third specialist....
This is especially applicable to the treatment in the last years of life. Few have doctors who can give the patient the whole implications of life extending treatment, in most cases of the hospitalized or seriously chronically ill, no one is even controlling those runaway trains going in all directions. People who haven't been through it don't know how complicated it can get and how worthless those living wills that address simple things like feeding tubes or respiratory assist can be in helping make decisions. I'm of the opinion we can't really have "the discussion" as a nation honestly, until we have a lot more doctors that can help patients understand what the actual realities are, ones that we can trust are looking after our whole bodies. Until then, any discussion is really useless abstractions and ideological rhetoricals.
We need a lot of "change" in our medical system, and it's going to take a long time. There are no miracle cures available.
November 6, 2009 2:00 PM | Reply | Permalink
Wonderful long comment, AA!
We also need a system that pays doctors for their time, not for the procedures they do. Too much here to discuss right now, but boy do we need that national conversation! Absent the paranoia that we've currently got going in the political sphere. (I know. Fat chance!)
Peace be with you. And with your navigation of the medical system.
November 7, 2009 4:52 PM | Reply | Permalink
This pertains:
http://www.nytimes.com/2009/10/20/health/20well.html
November 6, 2009 12:26 PM | Reply | Permalink
Great article. Really gets to the source of the problem: lack of information. The article makes it clear that the more the people knew the ramifications of their loved ones' illnesses, the more likely they were to take a palliative track of care versus aggressive treatment.
November 7, 2009 4:37 PM | Reply | Permalink
So true. Docs, however, are not paid for their time. Only for procedures. Which is why I advocate payment for time. If docs had time, they'd learn a lot more from patients and could provide a lot more info. We have a crazy system!
November 7, 2009 4:47 PM | Reply | Permalink