Five years ago, the surgeon Atul Gawande wrote a powerful piece in The New Yorker, talking about how much money we spend to save the lives of people who are not likely to survive. He begins with the story of Sara, a young wife and mother diagnosed with incurable lung cancer. Chemotherapy gave her a little bit of time, but it finally quit working:
This is the moment in Sara’s story that poses a fundamental question for everyone living in the era of modern medicine: What do we want Sara and her doctors to do now? Or, to put it another way, if you were the one who had metastatic cancer—or, for that matter, a similarly advanced case of emphysema or congestive heart failure—what would you want your doctors to do?
The issue has become pressing, in recent years, for reasons of expense. The soaring cost of health care is the greatest threat to the country’s long-term solvency, and the terminally ill account for a lot of it. Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life, and most of that money goes for care in their last couple of months which is of little apparent benefit.
Spending on a disease like cancer tends to follow a particular pattern. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off. Medical spending for a breast-cancer survivor, for instance, averaged an estimated fifty-four thousand dollars in 2003, the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy. For a patient with a fatal version of the disease, though, the cost curve is U-shaped, rising again toward the end—to an average of sixty-three thousand dollars during the last six months of life with an incurable breast cancer. Our medical system is excellent at trying to stave off death with eight-thousand-dollar-a-month chemotherapy, three-thousand-dollar-a-day intensive care, five-thousand-dollar-an-hour surgery. But, ultimately, death comes, and no one is good at knowing when to stop.
The subject seems to reach national awareness mainly as a question of who should “win” when the expensive decisions are made: the insurers and the taxpayers footing the bill or the patient battling for his or her life. Budget hawks urge us to face the fact that we can’t afford everything. Demagogues shout about rationing and death panels. Market purists blame the existence of insurance: if patients and families paid the bills themselves, those expensive therapies would all come down in price. But they’re debating the wrong question. The failure of our system of medical care for people facing the end of their life runs much deeper. To see this, you have to get close enough to grapple with the way decisions about care are actually made.
Gawande goes on rounds with Sara Creed, a hospice nurse. He concedes that he previously misunderstood hospice:
Outside, I confessed that I was confused by what Creed was doing. A lot of it seemed to be about extending Cox’s life. Wasn’t the goal of hospice to let nature take its course?
“That’s not the goal,” Creed said. 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. The lesson seems almost Zen: you live longer only when you stop trying to live longer. When Cox was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.
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.
More often, these days, medicine seems to supply neither Custers nor Lees. We are increasingly the generals who march the soldiers onward, saying all the while, “You let me know when you want to stop.”
Read the whole thing. I read it when it came out, and read it a second time after my sister died. She had not entered a hospice program. My father, who died last week from old age, spent the last two months of his life in a home hospice program. I understand it much better now.
I understand it enough to know that if I am ever in a terminal condition, I absolutely want home hospice care. My dad did not have a particular disease, but he had reached the point with various medical maladies, all related to aging, where there was nothing more medicine could do for him. The thing he did not want at all was to die in a hospital with tubes connected to him. And he was sick of going to the damn doctor all the time. When his general practitioner told him that he simply was not going to get any better, that the only thing medicine could effectively do for him now was to help him manage decline, he chose home hospice care.
It was one of the best decisions of his life. There was no need that hospice didn’t take care of. All his medicines were paid for. All the equipment he needed to make his life easier — a hospital bed, a wheelchair, everything — was provided, and quickly. He had nurses coming to bathe him and change his sheets, and a separate nurse overseeing his total care. They trained three of us who were caring for him in the home on how we were to participate in taking care of Daddy. It was not easy for us, but it allowed us to give my father what he wanted: to spend his last days in the comfort of his home, surrounded by friends and family. And it gave that same gift to us.
Even though my dad’s Medicare paid for his hospice treatment, and that treatment was thorough, I have no doubt that ultimately it cost the taxpayer far less money than it would have done had we continued taking him to see specialists. He would have certainly died in a hospital, because in the last week of his life, we would have been incapable of taking care of him at home without assistance (which mostly amounted to the hospice nurse making available Ativan and morphine, and teaching us when and how to administer it to him). In a hospital, he would only have gotten those meds when the nurses or doctors made their rounds. In home hospice care, either my dad’s friend John Bickham or I were there around the clock, monitoring him and giving him the drugs he needed to give him as much comfort as possible as he slowly died.
The thing you get from Gawande’s article, though, is that both the culture of US medicine and American culture in general is not prepared to talk about the plain fact of mortality. We have forgotten how to die. In my dad’s case, during that last week there were times when he slept, and times when he woke, that I prayed prescribed Orthodox prayers for the sick and the dying, as well as Psalms and other prayers. Daddy liked that, a lot. And I liked the fact that I didn’t have to come up with prayers of my own every time (though I did some of that too); there was a ritual I was able to use, a ritual that the Church developed over time, a ritual that described the condition of the sick and dying, put it into theological context, and consecrated it to God’s mercy.
Hospice made my father, his family, and his medical providers partners in helping him die a natural death, as opposed to living an unnatural life at the end. It would not have been possible had my dad not chosen it. Like Atul Gawande, I thought hospice was all about moving a dying patient to a room at a house of death somewhere in the last days of their life, and giving them morphine to make them comfortable until they pass. Maybe that was once true, but it is not true any longer. Because of hospice, my father lived as fully as he could, even though he was dying.
From the green-eyeshade perspective, studies have shown that hospice care can provide a significant savings in Medicare costs. But a more recent study has shown that hospice care for nursing home residents has actually made Medicare costs go up. This, it appears, is because many nursing home residents suffer from dementia, which greatly prolongs their time in hospice care. So hospice itself is not a cure-all for health care budgeting problems. But for patients like my father, and for families like ours, it was a blessing.
We should all be talking about hospice care more. But to do that, we as Americans will have to learn how to talk about mortality more realistically. And to do that, we will have to learn how to talk about limits.