Dr. Atul Gawande has a typically thoughtful article on hospice care in the August 2 issue of the New Yorker:
… When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?
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In late 2004, executives at Aetna, the insurance company, started an experiment. They knew that only a small percentage of the terminally ill ever halted efforts at curative treatment and enrolled in hospice, and that, when they did, it was usually not until the very end. So Aetna decided to let a group of policyholders with a life expectancy of less than a year receive hospice services without forgoing other treatments… A two-year study of this “concurrent care” program found that enrolled patients were much more likely to use hospice: the figure leaped from twenty-six per cent to seventy per cent. That was no surprise, since they weren’t forced to give up anything. The surprising result was that they did give up things. They visited the emergency room almost half as often as the control patients did. Their use of hospitals and I.C.U.s dropped by more than two-thirds. Over-all costs fell by almost a quarter.
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This was stunning, and puzzling: it wasn’t obvious what made the approach work. Aetna ran a more modest concurrent-care program for a broader group of terminally ill patients. For these patients, the traditional hospice rules applied—in order to qualify for home hospice, they had to give up attempts at curative treatment. But, either way, they received phone calls from palliative-care nurses who offered to check in regularly and help them find services for anything from pain control to making out a living will. For these patients, too, hospice enrollment jumped to seventy per cent, and their use of hospital services dropped sharply. Among elderly patients, use of intensive-care units fell by more than eighty-five per cent. Satisfaction scores went way up. What was going on here? The program’s leaders had the impression that they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough—just talking.
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The explanation strains credibility, but evidence for it has grown in recent years. Two-thirds of the terminal-cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death. But the third who did were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive-care unit. Two-thirds enrolled in hospice. These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.
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Can mere discussions really do so much? Consider the case of La Crosse, Wisconsin. Its elderly residents have unusually low end-of-life hospital costs. During their last six months, according to Medicare data, they spend half as many days in the hospital as the national average, and there’s no sign that doctors or patients are halting care prematurely. Despite average rates of obesity and smoking, their life expectancy outpaces the national mean by a year.
But, but, death panels:
Given how prolonged some of these conversations have to be, many people argue that the key problem has been the financial incentives: we pay doctors to give chemotherapy and to do surgery, but not to take the time required to sort out when doing so is unwise. This certainly is a factor. (The new health-reform act was to have added Medicare coverage for these conversations, until it was deemed funding for “death panels” and stripped out of the legislation.) But the issue isn’t merely a matter of financing. It arises from a still unresolved argument about what the function of medicine really is—what, in other words, we should and should not be paying for doctors to do.
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The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.
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Corner Stone
I can’t find the study, but to me, this is similar to where they found people sued their doctor at a severely reduced rate when that doctor took 10 minutes to talk to them.
No matter what the medical outcome, doctors were perceived as providing better care if they spent a few minutes being a person with their patients.
IMO, this is in the same kind of thing.
People just want to be treated like people.
Alwhite
My cousin was a nurse in a terminal cancer ward & often spoke about end of life issues. One of the things she mentioned as her own mother was dieing of cancer was the nature of pain management. As a patient gained tolerance for morphine the dose had to be increased, eventually the dose needed to stop the pain was fatal. The choice had to be made, allow the patient to suffer or kill the patient.
I thought of that today when I read of a new pain killer that is supposed to be a boon to cancer patients because you don’t gain a tolerance of it. Maybe that is not as good a thing as we would hope.
kwAwk
Pretty neat article. Interesting that sometimes doing what is counter-intuitive is exactly the right thing to do.
K. Grant
My thanks for posting this. An exceptionally important issue that Palin’s foolhardy nonsense made even more difficult.
Having someone who will talk frankly and with great compassion about our hopes and fears, both for us and those we leave behind, is an excpetionally good thing.
So is Hospice. Hospice care is a gift, period.
Scamp Dog
Well, this is a great idea, unless you’re making money from the “health” care system. How are we going to shovel lots of money into the for-profit sector if we get distracted by letting people make their own decisions and let things like quality of life get in the way? If it doesn’t concentrate wealth into the hands of the already wealthy, what’s the point? I mean, come on people, this is America!
Dan
This is just the patient going Galt.
PaminBB
Nice post, thanks. It must be said that these conversations are not easy for anyone – patients, family or doctors – so there is a tendency to delay them until things get so far along that decisions are no longer possible. Including third parties such as the palliative care nurses mentioned (the “death panels”) can really help all around. Maybe it will actually happen if the insurers see profit to be made.
Keith G
This should really be intuitive and obvious. A prolonged stay in a normal hospital room is an insane experience. Loss of personal control, loss of sense of time, relative isolation – that’s Guantanamo.
As Corner mentioned above, just human interaction in as normal a setting as possible is so important for wellness.
Belafon (formerly anonevent)
@PaminBB: Isn’t that a general problem in this country, talking about things. Think about all the conversions we don’t have in this country, and their consequences:
1. Sex
2. Race
3. Proper role of government and how to pay for it
4. End of life
Things would be markedly better if we were a bit less actiony in this country.
Elizabelle
Dr. Gawande’s article seems a bookend to Katy Butler’s (Father’s Day!) NY Times magazine article on her family’s struggle to remove her father’s pacemaker, which provided him a longer life of shabby health (and probably cost his beloved wife/caretaker a few years off her own life).
Katy Butler: What Broke My Father’s Heart
http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html
Readers’ letters on the story:
http://www.nytimes.com/2010/07/04/magazine/04Letters-t-002.html
(Ms. Butler’s article was the most-emailed NYT article for a long time.)
Corner Stone
Maybe God isn’t with the Godboy team?
Broncos RBs Moreno, Buckhalter hurt
Svensker
When my mom was dying we wanted to do hospice but they said she had to sign a document saying that she would give up all treatment options, forever. She just couldn’t do it, it felt like giving up to her, and to us as well. We were only able to do hospice when she was finally in a coma.
I hope Aetna — and other care providers — act on this study. It makes so much more sense and is so much less cruel.
Loneoak
@Svensker:
I also hope that Aetna study takes hold in the medical system. The requirement that you give up on all treatment in order to take advantage of the different (read: sane) care models offered by hospice has always struck me as ridiculous. That requirement makes hospice seem like the other side of the same coin, when it could be an entirely different coin.
Elizabelle
Think of how frequently patients outlive their prognoses once they’re under hospice’s palliative care.
Just experienced that with a lovely elderly family friend. Her last months were more comfortable with hospice.
Sarcastro
Patients is people!
DBrown
Not too long ago someone who had realized that the end would be awful, went to the local State Park near me, covered themselves over with a clear tarp, and opened a small helium bottle (the type they sell for party balloons) and fell asleep; the next day a hiker found the body. The papers refused to give details fearing that someone might realize that there are easier ways to die then tied down in a bed, out-of-your-mind, laying in your waste, raked with pain and told there are no legal ways to end the nightmare … .
Interrobang
My maternal grandfather died at home thanks to an in-home hospice service run by the Ontario health service; he had a home-care nurse and a male aide who came in to help him bathe, and died as comfortably as possible. My grandfather’s doctor even made at least one housecall during the process.
But never mind, obviously soshulizm and ZOMGDETHPANULZ…
meander
Gawande’s article is definitely on my ‘to read’ list.
Catching up on Wisconsin Public Radio’s “To the Best of Our Knowledge” a few days ago, I listened to their fascinating show on psychedelics. All three segments were great, but one about a study at UCLA medical school on how use of the drug psilocybin (in a highly controlled environment) could help people with terminal cancer come to terms with their fates was particularly great. The subjects imagined conversations with dead loved ones, had religious experiences, and otherwise came to terms with people they had hurt or had been injured by in the past. But alas, our nation’s absurd anti-drug attitudes will probably delay this useful research from going forward or become a option for palliative care.
Download using iTunes or other podcasting service or stream here: http://www.wpr.org/book/100606a.cfm
mai naem
One doesn’t know what you are going to do until you find yourself in the situation. You can talk to your parents and your parents may tell you that they don’t want this and they don’t want that but when the situation actually occurs, you may not be able to go through with what your parents decided. The problem with hospice is that the family of the patient is frequently in denial of the situation. One can “graduate” from hospice but most people connect hospice with the patient being on “death’s door” and that isn’t necessarily true. Also too, the people who like hospice and think the care is great may not realize that the feds give more money to hospice than they do to nursing homes and home health, so hospice is actually able to deliver more services.
Kiril
@Corner Stone: It is well known that God only loves the Super Bowl Champion New Orleans Saints. Unfortunately, his love is painful, humiliating, and intermittent.
kay
Great article, Ann Laurie. Thank you.
Every discussion of these issues for the next twenty years should include this sentence:
This was such an egregious and cynical lie, Palin and her many, many media enablers deserve to wear it like a badge. Every time they open their mouths people should remember “death panels” and let that be a measure of their credibility on everything else.
JWC
My mother had Hospice while she was in the nursing home. I think there are many families that don’t know you can be in a nursing home and still be eligible for Hospice care.
When they signed her up, she had just returned to the nursing home from the hospital, and had a bit of a relapse. The staff wanted to readmit her to the hospital, and my brother and I resisted. The doctor said sign her up for hospice, and she doesn’t have to go.
What a blessing. She had several good months. She loved the hospice staff. She thought it was “extra” care. She had at least two more episodes where she would have been admitted, if it were not from hospice. The last few days, as she failed, they were wonderful. (Again, I know she would have been admitted if not for hospice.)
And yes, even though she did not have cancer or anything like that, at the end they medicated her to keep her from being agitated. (She was not able to swallow her regular meds by that point.) I know that hastened her death by a few hours/days, but it was a mercy for sure. The hospice nurse sat with her the night she died. Two of their staff came to her funeral.
It is a blessing. it also saves money. But most importantly, it is a blessing for those who are dieing and their families.
JWC
artem1s
I don’t know if my father had to sign away other treatments to get his final hospice care. I do know that the oncologist, who my parents had grown to trust, did tell him that there were no more treatments that would add to the quality of his life. This was much more comforting than the first oncologist who thought his job was to be a glorified pharmacist (who I am sure was making a couple of grand a year). In the end Hospice was a lot of help, especially to my mother. I didn’t know that they would provide so much in home care. I was glad that he was able to die at home and appreciated that was an option available to him.
thankfully medicare paid for pretty much everything.
bago
Cystic Fibrosis is a bitch. You get into your 20’s and right when you’ve figured out how to roll, your lungs die, and you die. I’ve lost one friend to it, and another is pushing the terminal limit.
In conclusion, friends dying makes me sad.
Cheryl from Maryland
Dr. Guwande’s article brought back intense memories of my mother’s death two years ago. After several medical mismanagements (including one doctor we fired calling up his replacement warning her that my family was trouble because we checked his prescriptions in the Physician’s Desk Reference), we managed to untangle doctor issues from my mother’s actual condition and agreed on hospice care.
Unfortunately, the hospice defined palliative care as pain management only. Morphine and lots of it. My brother and I had to gear up again to combat the hospice organization so my mother’s final months could have some quality.
Thank heavens for one doctor who was willing to help us keep the morphine down to a minimum and treat some of her problems with other medications. That allowed my mother to be as active and awake as possible. She passed away at home after several memorable months of cooking, talking, seeing plays, visiting friends and tooling around town. Once she started to decline rapidly, we had no problems getting her pacemaker turned off, and she died holding my hand.
Moral of the story — decisions on how to end one’s life with dignity are important to make. But not all hospices are created equal.
Corner Stone
@Kiril:
Isn’t all love? Why should His love be any different?
Ranjit Suresh
@Corner Stone:
Because He’s supposed to Omnipotent and Omniscient.
As for the rest of the discussion, it makes me sad that just as regenerative medicine is getting off the ground, with pluripotent stem cell therapy and organ growing, gene therapy, ECM therapy, etc. all making fundamental strides in basic research… our public discussion is moving towards how to increasingly accept medical limits with regards to death.
Instead we should be talking about how the FDA can be reformed to allow regenerative and anti-aging medicine and how to formulate a massive stimulus program of billions of new dollars in NIH funding for cutting edge biotechnology.
Corner Stone
@Ranjit Suresh:
True, but he’s already killed us all once. And he’s also cast us out for disobedience. Plus he needs constant reassurance that we’re into him.
Sounds like an abusive alcoholic father/boyfriend to me.
Svensker
@Corner Stone:
Not to get in a GOD discussion or anything, but the whole idea of God is that God’s love is total, unconditional, infinite — the platonic ideal of love, of which human love is but a pale reflection. :)
Good night.
Svensker
@Corner Stone:
No, God doesn’t cast us out — we turn away. Big diff. Nor does God need reassurance any more than a parent needs reassurance that his/her child is “into” the parent. Sorry, you just got that stuff all wrong.
Now, good night.
wag
It is unfortunate, but too often true, that an Oncologist is a doctor who hates cancer more than they like people. Hospice is the anti-oncologist.
My advise? Get a living will in place and give money to your local hospice. Five wishes is an organization that has do-it-yourself living wills that are easy and not at all intimidating to put together.
wag
…and here is a link to the states that recognize the Five Wishes living will
Corner Stone
@Svensker: Meh.
General Stuck
Brings to mind an experience I had in the army, during training when I came down with some kind of exotic jungle virus or bacterial infection with a temp of 106 and a body wide rash. The last thing I remembered was crawling into the emergency room at the base hospital. And the next thing after that waking up in a hospital room with about a hundred tubes sticking out every which way. I first thought I was dead and this must be some kind of transition to wherever.
And for about 24 hours nobody came into that room, until a single nurse came in wearing something like a space suit for protection I suppose. She didn’t do anything but change my tubes around some, for food or something. After that it was another 24 hours, no doctor or anyone else came in. I was starting to feel better; so I pulled out the tubes to try an escape, at least long enough to ask a doctor if I was dead, or what I had.
Took two steps outside the door and a couple of huge orderlies picked me up by the armpits and toted my sorry ass back to my cell. Said if I tried that again, they would strap me to the hospital bed.
And in another 24 hours, some dude came in, tossed a set of fatigues on the bed and said go back to your unit. That was it. Never did talk to a doctor. Old school doctoring in the military, I figured.
Jackie
@Ranjit Suresh: Please. No one gets out of here alive. Making death as comfortable for a patient and their loved ones as it can be, is a noble thing and much neglected in our current system. No one is proposing to stop medical advances that put off the day, but the day will come.
Mnemosyne
@Jackie:
As the poet/mortician Thomas Lynch likes to say, the mortality rate for the human race is holding steady at 100 percent.
Zuzu's Petals
Slightly OT but along the lines of controlling our end-of-life decisions …
When my friend was dying 13 years ago, hospice turned us on to a local nonprofit that helps people have home funerals for their loved ones. It’s perfectly legal in California and most other states … no mortuary necessary.
With their assistance we were able to take care of my friend with dignity and love, following her own instructions for her wake. We washed and dressed her and used dry ice for three days so all her friends and family could come say goodbye…people brought food, played music, laughed and told stories, just like the old days.
Then we took her to the crematorium and later scattered her ashes in a beautiful spot.
I wish more people knew they have rights this way.
Dpirate
It’s not surprising at all, any of it. When you are all doped up things that would normally send you hustling to the emergency room just don’t bother you all that much.
God forbid they smoke rope, though, huh.
@Zuzu’s Petals: I want to be tossed naked and leaking into the nearest dumpster, as a final act of “fuck you” to the consumerist way of life.
Dpirate
@General Stuck: You died, man. Now you are in purgatory with the rest of us.
Bill in OH
Two anecdotes that support the value of hospice as an end of life resource:
My uncle, who’s liver has degenerated due to the Hepatitis C he contracted about 25 years ago, recently signed up for hospice. I don’t know all the details but I do know that he didn’t have to agree to forgo further treatment, at least not yet (he’s still functioning fine in his day to day life). Hospice has been wonderful for him because it has both given him someone to talk to about his end of life choices and has also given him peace of mind about his final days. He has a lot less anxiety now that he knows he won’t be a burden on his children when he can’t take care of himself anymore. It seems like a small thing, but it’s really helped him relax and concentrate on taking care of himself.
Hospice was a godsend when my mother in law reached her final days (she had COPD). They made her comfortable, got her meds straightened out and also helped guide my wife and her sisters through the process so they knew what was likely to happen as things went along. It lessened the anxiety they all felt and helped them to accept that their mother was going to die. The staff even recognized that my MIL was hanging on to life for the sake of her children and suggested that everyone take a break from the bedside, where up until this point, at least one of the three children had always been present. They had a volunteer stay with her so she wouldn’t be alone. She passed within ten minutes.
I’m sure that it’s not the solution in every case and that not all hospices are created equal, but when it’s done right, hospice definitely provides a valid alternative to the traditional approach of treatment until death. I hope congress reinstates end of life counseling sooner than later.
Edited to improve readability.
Dpirate
@Bill in OH:
REDRUM?
My hospice anecdote is different, but eerily similar. My grandmother hates them, as she didn’t realize they were going to dope my grandfather to the gills. He wasn’t lucid his last week or so, and she feels robbed. They had discussed together what it would be like, talking up til the end. Not that he didn’t need to be doped up, but there was a severe lack of communication about it. As soon as the papers were signed, he was in lala-land.
I stayed awake the night he died, so my grandmother could sleep in the chair. He started struggling for breath, so I woke her. She had me get the personnel (think it was a hospital nurse and not hospice person). She immediately removed his oxygen mask, and he started really struggling. Died in a minute while she stood there holding his wrist, timing how long it took him to die.
I wish I had murdered her and put his mask back on.
EDIT: Suppose I ought to add that I don’t seriously think anyone’s been murdered (as we think of it, legally), but we should remember that for all their sympathetic murmurings, Hospice is a bureaucracy, and patients are so much cordwood and expense.