My attention today is turned to the "Conversation," the conversation that should take place between medical professionals, patients and their families, the conversation about terminal conditions, how long the patient might yet live—and under what conditions—and how the patient wants to die. Yet, we are told, that conversation most often does not take place, and too often aggressive, unpleasant medical procedures and treatments delay death and prolong suffering as long as possible. This story is also personal to me, as it is to many others. And if it is not yet, it may someday be personal to you, too.
This story is also about two Harvard doctors who are trying to change that. Drs. Angelo Volandes and his wife, Aretha Davis, are trying to produce clear, simple, matter-of-fact videos that effectively present the facts and care choices that the conversation might be expected to provide to terminal patients. But getting hospitals and doctors to use them is an uphill battle. Dr. Volandes:
[…] 'I think we're probably the most subversive two doctors to the health system that you will meet today,' [Dr. Volandes] says, a few hours before his shoot begins. 'That has been told to me by other people.'
'You sound proud of that,' I say. 'I'm proud of that because it's being an agent of change, and the more I see poor health care, or health care being delivered that puts patients and families through—' [replies Dr. Volandes.] 'We torture people before they die,' Davis interjects, quietly. Volandes chuckles at my surprise. 'Remember, Jon is a reporter,' he tells her, not at all unhappy with her comment.
'My father, if he were sitting here, would be saying 'Right on,' I tell him. Volandes nods. 'Here's the sad reality,' he says. 'Physicians are good people. They want to do the right things. And yet all of us, behind closed doors, in the cafeteria, say, Do you believe what we did to that patient? Do you believe what we put that patient through? Every single physician has stories. Not one. Lots of stories.'
--"How Not to Die," by Jonathan Rauch, The Atlantic (May 2013)It is also my father's story, and how and I finally came to have the conversation with him when none of the doctors did, when I could not watch his slow, suffering death-march any longer—and how, sadly, the author's father, among so many others, didn't have the conversation or any choices at all. The article moves us on:
'In the health-care debate, we've heard a lot about useless care, wasteful care, futile care. What we'—Volandes indicates himself and Davis—'have been struggling with is unwanted care. That's far more concerning. That's not avoidable care. That's wrongful care. I think that the most urgent issue facing America today is people getting medical interventions that, if they were more informed, they would not want. It happens all the time.' No one knows its extent, and few people want to talk about it.
The U.S. medical system was built to treat anything that might be treatable, at any stage of life—even near the end, when there is no hope of a cure, and when the patient, if fully informed, might prefer quality time and relative normalcy to all-out intervention.
In 2009, my father was suffering from an advanced and untreatable neurological condition that would soon kill him. Eating, drinking, and walking were all difficult and dangerous for him. He ate, drank, and walked anyway, because doing his best to lead a normal life sustained his morale and slowed his decline. "Use it or lose it," he often said. His strategy broke down calamitously when he agreed to be hospitalized for an MRI test. I can only liken his experience to an alien abduction. He was bundled into a bed, tied to tubes, and banned from walking without help or taking anything by mouth. No one asked him about what he wanted. After a few days, and a test that turned up nothing, he left the hospital no longer able to walk. Some weeks later, he managed to get back on his feet; unfortunately, by then he was only a few weeks from death. The episode had only one positive result. Disgusted and angry after his discharge from the hospital, my father turned to me and said, "I am never going back there." (He never did.)
What should take place is The Conversation…[where] a doctor or a social worker sits down to explain, patiently and in plain English, his condition and his treatment options, to learn what his goals were for the time he had left, and to establish how much and what kind of treatment he really desired… Alas, evidence shows that The Conversation happens much less regularly than it should,…and when it does…patients and family don't really understand."
[…] "Though no one knows for sure, unwanted treatment seems especially common near the end of life." [Which is doubtless a large part of the reason that over 40% of healthcare cost are incurred in the last year of life. GH]My father died just a year ago, ending a full life just a week short of 94 years. He was in an assisted-living community with my mom, who has dementia. He had COPD and was on an oxygen breathing tube continuously. His heart was functioning at about 25% and he had congestive heart failure. His kidneys were also functioning at 25%, and between that and the congestive heart failure, he retained liquid, lots of it. His hands and feet would become distended to the point of deformity, and his lungs would fill with liquid to the point that he struggled for enough oxygen to stay alive. Periodically, when his struggle and suffering became obvious enough, he would be sent to the hospital where they would remove a pint or so of liquid from his lungs with a large syringe. They would then keep him there for a few days and send him back until his suffering again became open and obvious.
Years earlier, my parents and I talked about the terms of their wills, and they both felt strongly that they did not want any heroic or artificial measures taken or equipment employed to sustain life. The term used in their living will was "do not resuscitate." But this was not a case of resuscitating my father, it was just about keeping him alive a little longer through a cyclical process that could not end his suffering, and when temporarily lessened, it returned faster the next time than the last. I bluntly asked the doctors, and they were candid with me about his terminal condition. A wonderful nurse, saddened by my father's suffering and clear fate, suggested I have the conversation with him, put his care in the hands of Hospice, and change the terms of his care to include, "do not hospitalize."
I sat with my father and had that conversation about his condition and choices: "You are dying, Dad, and the only question is how you want to spend the time you have left—going back and forth to the hospital ever more frequently with increasing suffering until you die in a hospital bed or, in the alternative, in your own bed with mom, your children and Hospice care. He chose "do not hospitalize" and Hospice care. He spent part of each day holding hands and talking with my mom. He received great, attentive care from Hospice who generously but responsibly assured painkillers eased his discomfort and suffering. When the time was near, my brother and I attended to him 12 hours on and 12 hours off along with the Hospice and assisted living staff. He died early one morning with the Hospice chaplain holding one hand and I the other as we prayed for him and our family.
He died about two weeks after his decision not to be hospitalized again, and not without some struggle and suffering, but not as much or as long as if he had continued the more desperate process of cycling in and out of the hospital until he died there.
I call that dying with dignity, and with the greatest comfort and most loving atmosphere for the man we all loved. It was that for him, but also for us. But it is not only patients and their non-medical families that have difficulty dealing with this most challenging and controlling process. Doctors' families do, too.
[A similar experience related by the author:] A few years ago, at age 94, a friend of mine's father was hospitalized with internal bleeding and kidney failure. Instead of facing reality (he died within days), the hospital tried to get authorization to remove his colon and put him on dialysis. Even physicians tell me they have difficulty holding back the kind of mindlessly aggressive treatment that one doctor I spoke with calls "the war on death." Matt Handley, a doctor and an executive with Group Health Cooperative, a big health system in Washington state, described his father-in-law's experience as a "classic example of over-medicalization." There was no Conversation. "He went to the ICU for no medical reason," Handley says. "No one talked to him about the fact that he was going to die, even though outside the room, clinicians, when asked, would say 'Oh, yes, he's dying.' "
If it is this hard for doctors to navigate their parents' final days, imagine what many ordinary patients and their families face. "It's almost impossible for patients really to be in charge," says Joanne Lynn, a physician and the director of the nonprofit Altarum Center for Elder Care and Advanced Illness in Washington, D.C. "We enforce a kind of learned helplessness, especially in hospitals." I asked her how much unwanted treatment gets administered. She couldn't come up with a figure—no one can—but she said, "It's huge, however you measure it. Especially when people get very, very sick."
But why? Why is this simple exercise in thoughtful, helpful candor, this "conversation," so difficult for doctors and hospitals to embrace and take responsibility for? And if they just have neither the personality nor temperament for it, then why not embrace enthusiastically the videos so thoughtfully and competently prepared by Drs. Volandes and Davis? That just seems so clear and right to me. So, let's hear more about those videos:
The first film [Dr. Volandes] made featured a patient with advanced dementia. It showed her inability to converse, move about, or feed herself. When Volandes finished the film, he ran a randomized clinical trial with a group of nine other doctors. All of their patients listened to a verbal description of advanced dementia, and some of them also watched the video. All were then asked whether they preferred life-prolonging care (which does everything possible to keep patients alive), limited care (an intermediate option), or comfort care (which aims to maximize comfort and relieve pain). The results were striking: patients who had seen the video were significantly more likely to choose comfort care than those who hadn't seen it (86 percent versus 64 percent).
Volandes published that study in 2009, following it a year later with an even more striking trial, this one showing a video to patients dying of cancer. Of those who saw it, more than 90 percent chose comfort care—versus 22 percent of those who received only verbal descriptions. The implications, to Volandes, were clear: 'Videos communicate better than just a stand-alone conversation. And when people get good communication and understand what's involved, many, if not most, tend not to want a lot of the aggressive stuff that they're getting.'
His finished videos look deceptively unimpressive. They're short…bland…and meant to be banal. 'Videos are an aesthetic medium; you can manipulate people's perspective,' Volandes says. 'I want to provide information without evoking visceral emotions.' Any hint that he was appealing to sentiments like revulsion or fear to nudge patients toward a certain course of treatment would discredit his whole project, so Volandes does all he can to eliminate emotional cues.
The typical video begins with Davis explaining what the viewer is about to see, stating plainly facts that doctors are sometimes reluctant to mention. She says, for example: People with advanced dementia usually have had the disease for many years and have reached the last stage of dementia. They are nearing the end of life. The video cuts to a shot of a patient. Then Davis outlines the three levels of care, starting with the most aggressive…Then she describes limited care and comfort care, again speaking bluntly about death. People who choose comfort care choose to avoid these procedures even though, without them, they might die. She concludes by recommending The Conversation.
So, it would appear there is a clear, if not desperate, need for the videos. They are professional, understandable, and produced at very low cost. Most important, health facts and care choices are communicated with efficacy. So, again I ask, why not? The author:
[…] Routine use [of the videos], however, is far, far away. According to Volandes, only a few dozen U.S. hospitals, out of more than 5,700, are using his videos. I spoke with physicians and a social worker at three health systems that are piloting them, and all were very enthusiastic about the results.
[…] The problem is not his product but the peculiar nature of the market he wants to push it into. His innovation is inexpensive and low-tech, and might avert misunderstanding, prevent suffering, improve doctor-patient relationships, and, incidentally, save the health-care system a lot of money. He goes out of his way not to emphasize cost savings, partly because he sees himself as a patients'-rights advocate rather than a bean counter, and partly because it is so easy to demagogue the issue, as Sarah Palin did so mendaciously (and effectively) in 2009, when she denounced end-of-life-care planning as "death panels." Anyone who questions medical maximalism risks being attacked for trying to kill grandma—all the more so if he mentions saving money. For all its talk of making the health-care system more rational and less expensive, the political system is still not ready for an honest discussion. And the medical system has its own ways of fighting back.
Again, I repeat what I noted only in passing earlier: over 40% of all healthcare costs are incurred in the last year of life. And this whole process of dealing with diagnosis and terminal condition, alternatives for treatment, and the home comfort and pain-management approach with Hospice, may play a significant role in reducing those costs. But I don't expect the medical community to be enthusiastic advocates. Do you? For reasons of both medical culture and business culture, neither does the author:
During my visit, I realized that I had encountered Volandes's type before, but in Silicon Valley. Volandes has entrepreneurial obsessive-compulsive disorder: the gift, and curse, of unswerving faith in a potentially world-changing idea.
It is not a huge exaggeration to say that obsessive entrepreneurs, from Cornelius Vanderbilt to Steve Jobs, made America great. It is also not a huge exaggeration to say that health care, more than any other nongovernmental sector, has made itself impervious to disruptive innovation. Medical training discourages entrepreneurship, embedded practice patterns marginalize it, bureaucrats in medical organizations and insurance companies recoil from it. And would-be disrupters are generally disconnected from patients, their ultimate customers: they have to take their innovations to physicians, who are notoriously change-averse, and then they must get the government—Medicare, first and foremost—to approve and pay for them. Imagine that Jeff Bezos, when he was starting Amazon, had needed to ask permission from bookstores and libraries.
Volandes, therefore, will fail. That is to say, he will fail if success means revolutionizing the doctor-patient relationship and making the "Conversation" ubiquitous within five years. Meanwhile, if the American health-care system does not learn how to harness the energy and ideas of people like Volandes, it will fail. Somewhere between those failures lies a path forward. We know medical culture can change for the better; it takes the treatment of pain much more seriously than it used to, for example, and it has embraced hospice care.
[…] I think of Dr. Woody English of Providence Health and Services, who is 67 and wants to make a difference before he retires. At his instigation, Providence has begun using Volandes's videos. "The changes will come locally," English told me, "not nationally." When I look at him and Volandes and the others, I see not only a test of whether the health-care system's medical culture can change but also a test of whether its business culture can change—and that change may, in the end, be even more important.It's both. It has to be.
Link to The Atlantic article:
http://www.theatlantic.com/magazine/archive/2013/05/how-not-to-die/309277/
No comments:
Post a Comment