(Crossposted on “Alas” and on “TADA.”)
In The New Yorker, Atul Gawande has an excellent article on how the American health care system treats dying patients.
In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.”
People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.
Gawande ends up strongly favoring hospice care.
The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focussing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.
Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months.
In our current system, patients typically have to choose between attempting to cure their problems, or explicitly admitting that they’re going to die and choosing hospice care. Interestingly, giving patients the option of doing both — that is, both having home hospice care and allowing patients to pursue all the curative treatment they want — saved money.
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 patient like Sara Monopoli could continue to try chemotherapy and radiation, and go to the hospital when she wished—but also have a hospice team at home focussing on what she needed for the best possible life now and for that morning when she might wake up unable to breathe. 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.
The point isn’t that saving money is all that matters. The point is that these patients got more choices, better care, and better quality of life, and it didn’t cost the system — or the patients — anything extra. Why isn’t that exciting news? Why aren’t insurance companies, and legislators, running to make this the standard treatment?
According to Gawande, a lot of the problem with our system is that many or most patients die without ever having an explicit, in-depth conversation with their doctors about the possibility of dying, and how they’d prefer to die. Just talking, Gawande argues, can make an enormous difference.
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.
But our system isn’t set up to encourage doctors and patients to have these conversations; it’s set up to fight to the last bitter breath. And even providing funding to pay for health care to include having conversations about dying well is fraught with difficulties, as Democrats found out last year when they had to back away from sensible, humane policies that conservatives labeled “death panels.”
This is a case that should be low-hanging fruit. Reforming the way the US health care system treats dying patients is something that could give patients more choices, let some patients live longer, let many patients live better, and save everyone money.
But is our health care system — and our political system — capable of grabbing even the low-hanging fruit? I don’t know. But it should be possible.
I’ve noticed a couple of major barriers to getting patients onto hospice care.
First, most insurance companies pay a set fee to hospice organizations for all the care they give to patients on hospice. That means that any even mildly expensive treatment options (palliative radiation or chemotherapy for example) are completely out because the hospice would have to pay for them and simply can’t afford that. This means that someone with, for example, a painful met to the bone can’t recieve radiation for the pain and be on hospice. Needless to say, most people prefer the pain control. Which limits hospice care to only the actively dying in the last few days of life. Aetna seems to be working on this problem. I hope they succeed and their plan catches on.
The other problem is the probably mostly US-American cultural attitude of “positive thinking overcomes all.” Many people refuse to consider hospice care because they’re sure that they or-more often-their relative will be the one person who survives widely metastatic pancreatic cancer because they “believe in miracles” or “have a positive attitude.” In this context, the very mention of hospice feels dangerous to the patient/relative because it endangers the fragile layer of optimism covering the deep fear. This leads to bad, intervention heavy deaths in the ICU, time wasted on futile care in the last few months of life, and money spent on even less likely “cures” from alternative practitioners who have no data whatsoever to back their claims of “natural” treatments.
There’s also a fear of the slippery slope. People fear that what is permitted and encouraged at the outset will be changed to being required down the line. I won’t argue that the situation is actually more nuanced than that, but you’re fighting the perception.
My grandmother is in hospice care. She hated her last visit to the hospital, and when the doctor wanted to get her back there under supervision–possibly forever–she just refused. She has emphezema and isn’t getting much oxygen, even though she wears it all the time. I think her life is a bit better now than it was before.
In the last six years, I’ve had two very close people die of cancer: my (male) partner died of pancreatic cancer that metastasized to his liver, and my mother died of cancer that rapidly spread throughout her lungs.
Both of them battled their illnesses for a year; both of them went through chemotherapy that left them exhausted, severely ill, and unable to eat. My mother’s also had radiation therapy that caused esophagitis, which was severely painful.
Their doctors urged them to slug it out to the very last. They both made many trips to the emergency room. Both of them spent their last year in pain and needless sickness. And for what? So doctors can feel heroic? So people like RonF don’t have to worry about slippery slopes and made-up boogyman “death panels”?
Thank G-d that my partner finally went onto hospice, but by then there was little that could be done to give him some peace in his last days – his body was too wrecked and his mind too filled with anxiety. But my Mom died in hospital, with a respirator rammed down her throat against her express written wishes.
We treat people with terminal illness like broken machines instead of humans who are sick. It’s a similar attitude displayed towards PWDs – we are treated like we are broken and need to be put back together. Sometimes people just need to be *left alone*, to handle affairs together with their families and friends.
My partner was subject to an array of bullshit “treatments” from one of his alternative-health-care “friends”, each one more desperate than the one before. There were the magnets, the “energy field adjustments”, the wonder-cure herbal substance that made him vomit. She plied each one with a greater air of desperation that her magical fixes weren’t working and that he was still reacting like every human does to one of the most aggressive cancers around – by being sick. How dare he! Her height of arrogance was to suggest that I and his doctor collude behind his back to give him a placebo while telling him it’s a new treatment, y’no, to get that good-old surefire placebo effect working.
GG, I’m so sorry for your losses, and also for the way your mother and your partner were treated.
I’ve read and heard so many stories like yours. But when it comes to how we die, most Americans (not you) don’t seem to realize that “the personal is political.” What happens to us when we die isn’t our bad luck as individuals; it’s what the system as a whole is set up to encourage.
I spent the first 25 years of my nursing career as an ICU nurse. The care provided there is extraordinary, and patients and families receive intense emotional support. But there have always been patients who every member of the health care team knew would not leave the ICU alive. Every once in a while, one of those patients would survive (the long tail of the bell curve Dr. Gawande writes about), but they were absolutely the exception. And the patients, the survivors and the non-survivors, underwent excruciating interventions. Every orifice probed by a tube or wire, incessant venipunctures, and interventions at a frequency that interrupts any possibility of rest–despite the nurses’ attempts to provide it. The nurses would eventually end up at the desk, with their shoulders slumped, shaking their heads, murmuring, “why are we doing this?” The gallows humor (a stress reducer for the nurse– NOT a disrespectful view of the patient) prompted the nurses to report off to each other that the patient’s reason for being in the ICU was that he or she “apparently signed on for the two week torture plan.” When the sassiest, or most forlorn nurse would approach the physician and venture to ask, “Why?” the answer is always, “they want everything done.” And you have to wonder, how was the question asked?? Did the physician, who heaven knows, is as uncomfortable with the conversation as is possible, just say, “do you want us to do everything?” Faced with THAT question, what option would any stressed out, terrified family answer? The alternative sounds like doing nothing.
My career now includes working on end of life and palliative care. It can be done so much better. It SHOULD be done so much better. I would encourage ANYONE who is facing a loved one reaching into their elder years, or a loved one with a serious chronic illness to ASK to speak with someone from the palliative care team. You don’t have to sign up for palliative care, or for hospice care, but these people are the ones who know HOW to talk about these issues. If your hospital doesn’t have a team, think about changing hospitals. If you physician blocks your access to them, think about changing physicians.
Cryonics.
Yeah, Doug, I’m sure *that* will be available to people who earn less than a million a year.
And cryonics helps to end needless suffering how, exactly?
1) Depending on the provider, cryonics costs between $28,000 and $200,000. This is less than the cost of a heart transplant, which is between $50,000 and $287,000. Furthermore, cryonics can be paid for with life insurance, which is cheap if you’re in good health when you buy the plan.
2) The purpose of cryonics is not to prevent suffering, but to prevent death. There really is a difference between “all the way dead” and “Only Mostly Dead“, and it’s a lot better to be the latter! (Just ask Miracle Max!)
This still will not be available to people who are poor or working class, who make up most of the Earth’s population. Nor will it be available to anybody who isn’t in “good health”, which will exclude most, if not all, people with disabilities, who are discriminated against by life-insurance companies. Nor will it be available to trans folk, again because life-insurance companies discriminate against us. So what you’re advocating is that this technology be available only to the more-privileged segments of society.
And what’s the cost (both financial and environmental) of keeping, say, 10 million bodies in a suspended-animation state going to be? What resources are going to be consumed? And does this not once again permit those with privilege to consume resources that they don’t need to *live*, thus denying those resources to those who *do* need them to live?
Not to mention that this:
doesn’t even address the subject of the OP, which addresses suffering at the end of life, and not bringing people back from the dead. So it’s a big derail, which I was stupid enough to participate in.
Sorry. Is there a better place to continue this discussion?
I’m going to change the subject a bit now…
How is this any different from what we in the developed world already do every day? There are people in Africa dying because they don’t have vaccines or antibiotics, and this is a problem that can, indeed, be solved by the proper application of money. For every $1,000 that we don’t donate to, say, the Stop TB Partnership, someone dies who didn’t have to. (Here’s more information.)
Yes, the better place is called an open thread.
Cryogenics is non-responsive to the OP.