A Novel Path to Better Healthcare

Here’s a revolutionary idea: “Ask the patient.”

This suggestion was made recently by the President’s Council of Economic Advisors Chair Christina Romer in a speech on “The Great Credit Freeze and the U.S. Economy.” The talk was all about improving healthcare while slowing down the growth of its cost. We know we can’t reduce costs, Dr. Romer said; what we hope to do is reduce the rate of increase. And one way to contain healthcare costs might be to find out what the patient wants. Imagine.

This comment was not in direct response to a question, but could well have been. Dr. Romer was asked, by more than one audience member, about how to address excessive expenditures at the beginning and end of life. A grossly disproportionate share of costs, she conceded, “are spent on the last six months of life. And one thing we’re not doing enough of is letting patients express what they want.”

If the issue were not so grim and sorrowful it would call for a “Well, duh.”

It would be hard to find many people who would say they’d like their last few days on this planet to be spent semi-conscious or in pain and distress, hooked up to a tangle of wires and tubes in a blue-lit hospital room. But this is in fact the system we have created: we focus on prolongation of life without regard to quality, we aid and abet doctors who equate death with failure, we never talk about our own mortality as if in silence we can become immortal. Most of us would choose to die at home, properly medicated for pain and surrounded by our loved ones; most of us will die in an institution

Audience members had a wide assortment of questions, and Dr. Romer had plenty more to say. But finding out what the patient wants, and acting accordingly, is surely one excellent path towards better care – and even contained cost growth, and everyone in America could begin that process today.

It is an easy solution, even if only a small, partial solution, to this piece of the muddled medi-puzzle of our healthcare system: talk. Tell your doctors, caregivers, loved ones what you do or don’t want. Write it down. Use the forms universally available (Advance Directives, POLST, others.) You might even wind up with what you want in your final days. Christina Romer is on your side.

Health Literacy

Health Literacy, which is as much about common sense as about the three R’s, can nevertheless be a matter of life and death. Rebecca Sudore M.D. covered the issue in a recent talk to a group of healthcare professionals and volunteers in which she included video clips and verbal summaries of cases that bring chills: a woman who didn’t know she was having a hysterectomy until after the fact because she was afraid to ask questions, people who suffered or died simply because they could not read the details about medications or procedures. Health Literacy may be a field still in its infancy but it is a topic, as well as a separate professional discipline, for which the time has come.

Dr. Sudore, whose youthful energy and unassuming demeanor belie an impressive list of credentials in geriatric scholarship and practice, is passionate about the subject. Among the messages she shared, here are just a few:

Health Literacy is defined as “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.” In other words, if you’re sick or wounded, it’s a pretty good idea to understand what should or should not be done to you – and literally millions of Americans do not.

Millions? Really? Yep, between 40 and 44 million of us are somewhere around a fourth-grade learning level, cannot read signs or medication bottles, poison warnings or the schedules of city buses. Try to imagine making it through the day, if you were in this group, with a bad cold or an infected finger. Another 50 million or so of us are hanging around 4th to 8th grade level, which means we have trouble with “executive functions” such as simple forms or reading a magazine. I hold an advance degree, and don’t even get me started on the difficulty-with-forms issue. If that form, though, means whether or not you agree to a hysterectomy it’s a lot more serious than exchanging data or filing your taxes. Healthcare workers, and sometimes family and friends, must pick up where education or language skills leave off.

Patients, Dr. Sudore explains, are critically hampered not only by lack of education and skills but by shame, fear and a host of other issues. Doctors, often part of the problem, are hampered by lack of time and health-literacy training, and other issues of their own.

Dr. Sudore and her fellow crusaders are out to change all that. They preach keeping messages simple, using plain language, an “Ask-Tell-Ask” method of communicating. Dr. Sudore was pleased, recently, to encounter a physician who caught himself hurriedly saying “Any questions?” to a patient and then corrected the phrase as she had told him, “What are your questions?”

It may be a way off, but Health Literacy is gaining ground.

Two guys in one hospice room

Hal is down to about 80 pounds, blind, bedridden, unable to feed himself, incontinent for the past six years and in a VA hospice. There he receives good care and dozens of daily meds that keep him alive. At the request of a friend of his, I visited him recently to talk about his options. They are, essentially, keep doing what he’s doing – or let what’s being done to him keep on being done – for as long as his remaining cells agree, or stop eating, drinking and accepting all medications but pain control and shorten that period ahead. As it turns out, Hal, a long-time supporter of aid-in-dying, chooses the former; that is surely his right.

As I was leaving, though, the man in the other bed asked me to talk with him. “I heard everything you said,” he told me. “I’m dying. It’s taking too long. Can you help me?”

Well, no, I can’t help him much at all. And that makes me sad for us both, as he is clearly in need of help: pain control, advocacy, methadone, comfort care and social contact. The latter two he is getting to the extent possible; round-the-clock methadone, which is what I think he really wants, is not exactly mandated by the VA. But somebody should be listening to him a little more carefully.

Joe, I’ll call him, since he didn’t ask me to share his story, is 66 but could pass for older. He has cancer in his liver and elsewhere, he says. “It’s pretty much all over, but I think it started in the liver. I’m in a lot of pain. I get a shot of methadone every night at six and that helps for about three hours; after that I just try to hold out until the next shot. I don’t want any more of this.”

Joe reached over, opened a drawer to the little table beside his bed and pulled out several folders. He has an appointment for dental work in three weeks, and is scheduled to begin chemotherapy. “How can they make me do all this?” he said. “I don’t want any dental work, and I don’t want chemo. I just want out of the pain.”

At some point, many of us just want out of the pain, and welcome death as the inevitable way out. Others of us, luckier or sometimes wiser, welcome death because its time has come and that’s what we mortals do, we die. Might not always be the worst thing that happens.

The hospice where Hal and Joe are is part of a huge VA medical center at which excellent care is provided. Since I know nothing of Joe’s history, and since everything I know about the medical center is positive, I can only assume they are doing the best they can for him. Perhaps they see him getting better, going home – although he told me he has no home, no family, no close friends – or to somewhere outside the center’s campus. At a sprawling center staffed with skilled, caring people whose aim is to heal and to cure, there may be few people available to talk to Joe about dying, or to help him gently do so.

A lot of progress has been made toward end-of-life care, but the ability to face death with honesty and compassion eludes us. And until we find a way to do so people like Joe will be around to break the hearts of those who meet them.