March 23, 2014

Getting Autonomy Right

My father will be 90 next month. He lives in a nursing home because he needs help with all the most basic tasks—eating, dressing, bathing, walking. But my father also has dementia, which has been getting worse, as dementia generally does. As a geriatrician, I know that one of the few ways to make a person with dementia better is to take away any medications that might be contributing to the cognitive impairment. So when I realized my father was still taking a small dose of the tranquilizer valium (diazepam) every day, I suggested it be stopped. I was stunned when my father’s doctor called me to say he felt stopping the valium posed an ethical dilemma.

An ethical dilemma? Valium is on the most widely recognized list of medications that are generally inappropriate for use in older people. The American Geriatrics Society recommends against prescribing valium in the elderly because the drug accumulates in the body, takes days to weeks to be eliminated  from the system, and is notorious for causing confusion and lethargy, especially in people with dementia. Now guidelines and recommendations are not absolute. Valium has not been taken off the market by the FDA. And my father is only on a low dose of the medicine. For years, he was on a far higher dose because it helped control his debilitating panic attacks. When I was growing up, he used to have panic attacks every few weeks, even with high dose valium, but the attacks were far worse without the valium. Multiple efforts to find another drug that was equally beneficial without potential side effects had failed, so my father stayed on valium. Over the last few years, his doctors have tapered the dose, but they never stopped the drug entirely. Since entering the nursing home 2.5 years ago, he has remained on valium even though he hasn’t had a single panic attack. And now he is sleepy much of the time—he can’t keep his eyes open when you try to talk to him—and is more confused than ever. 

Why, then, was stopping valium ethically problematic? It might seem, by contrast, that continuing a drug that every geriatric authority deems pernicious is what is ethically problematic. But it turns out that 1.5 years ago, when my father’s mental faculties were better than they are now, though hardly normal, he told his physician that he wanted to stay on valium. So in the view of that same physician, stopping the medication now would be a violation of the all-important ethical principle of respecting autonomy.

Now I’m all for respecting a patient’s right to make medical decisions for himself. But making a medical decision assumes the patient has the capacity to weigh the risks and benefits of the treatment. And I am quite confident that my father, who is unaware that he even has cognitive impairment, cannot understand that valium could be worsening his cognitive impairment. I am sure that my father, who does not remember what he had for breakfast or even if he had breakfast, has no recollection of when he last had a panic attack. He is simply unable to evaluate the situation, and to rely on the opinion he had 1.5 years ago (assuming he understood the issues then, which is another matter), is absurd. “Respect for autonomy” is not equivalent to “the customer is always right.” It is not respectful of a person’s right to determine what happens to his body for a physician to mindlessly follow the dictates of the patient. When a cancer patient declines potentially life-prolonging treatment, should his oncologist accede to his wishes without first being sure the patient understood both what would happen if he got the treatment and what would happen if he didn’t?

There’s another problem with the assertion that my father should continue to get valium today just because he previously requested the drug. Leave aside for the moment the issue of whether he has the capacity to make any medical decisions. Even a competent patient cannot demand non-beneficial treatmentThis is a point that both patients and physicians seem to have trouble accepting. Medicine is a profession and the essence of a profession is that its members have a particular expertise. Physicians are uniquely positioned to make medical diagnoses and to offer treatment based on their clinical assessment and medical judgment. Patients can decline the treatment if there are several reasonable options, and they can select which of the various possibilities makes most sense to them, given their personal views of the side effects they are keenest to avoid and the benefits they are most eager to experience. But patients cannot demand antibiotics for treatment of a viral infection or laetrile for treatment of cancer. Sometimes the treatment the patient wants is possibly effective, though only very, very rarely, and the issue becomes whether patients have a right to insist on treatments that are exceedingly unlikely to work—especially if they are fraught with danger and very expensive. But in my father’s case, it just doesn’t make sense to assert that he could demand valium if his physician believes it is not medically indicated (and his doctor agrees it is not a good drug for him), even if he had the cognitive capacity to discuss medical issues.

But perhaps even more troubling to me than the failure to recognize that the right to make medical decisions presupposes competency, and even more disturbing than the confusion about whether patients can demand non-beneficial treatment, is the profound misunderstanding about the nature of advance care planning. Now advance care planning is something I think about a great deal. It’s a topic I write about on this blog and elsewhere. Advance care planning is a process in which a person who is of sound mind indicates what approach to medical care he would want if he became ill and was unable to make decisions for himself. If advance care planning is to work, it’s crucial that when a patient articulates his wishes about future care at one point in time, and then finds himself in exactly the situation he envisioned at a later time, his physicians abide by those wishes. What’s not right—and this is what my father’s doctor worried about—would be to cavalierly ignore or even reverse a thoughtful, carefully made decision once the patient loses the capacity to make decisions. It would make a mockery of advance care planning if, for example, a patient while clear-headed said he would under no circumstances want CPR attempted, and as soon as he developed dementia, his health care proxy or physician reversed the patient’s “DNR” order. 

So at issue is what exactly my father meant when he said, 1.5 years ago, that he wanted to continue taking valium. Did he mean that he wanted to take valium for the sake of taking valium? Did he meant that if his Parkinson’s disease became so severe that he could no longer swallow, he would want a feeding tube inserted just so he could continue to get valium? Did he mean that if a better drug came along, one that was more effective and with no side effects at all, he would nonetheless prefer to keep his valium? Or was he really saying that he wanted to continue taking valium as long as it effectively controlled his panic attacks, and he was willing to put up with some minor side effects in return for this benefit? If so, then it follows that if the valium is no longer needed for control of panic attacks, there is no reason to keep on taking it.

The story has a happy ending in that my father’s physician acknowledged my reformulation of the earlier statement “I want to keep taking valium” was plausible. The doctor will discontinue the valium on a trial basis. Now it’s conceivable that the panic attacks will return. Perhaps the reason my father hasn’t had any such episodes in the last 3 years is that the valium has been working wonders—even though for the previous 30 years, valium never ablated the panic attacks, it merely attenuated them. In that case, the doctor will again prescribe valium for my father. It’s also quite possible that discontinuing valium will have no discernible effect—either on panic attacks or on my father’s cognition. He will remain just as befuddled and sleepy as he is now. But at least we will not have uncritically adhered to something my father once said, in a misguided attempt to respect his autonomy.

While this particular “ethical dilemma” looks as though it will be resolved, I worry about all the other physicians who fail to appreciate the importance of ascertaining the patient’s understanding of the issues before blithely following his wishes; I worry about all the patients and physicians who do not distinguish between refusing unwanted medical treatment (a legitimate patient right) and demanding non-beneficial treatment (not a patient right); and I worry about how advance care planning is implemented. The latest variant of advance care planning is the POLST form (physician orders for life-sustaining treatment) and related efforts with similar names (in Massachusetts, it is MOLST), which is actually a medical order. In this approach, patients decide together with a clinician what specific treatments they would accept and which they would not (this can include CPR, ventilators, dialysis, feeding tubes, intravenous fluids or other interventions) and sign an order to this effect, an order that is supposed to be binding on all medical personnel: on EMTs in ambulances, nurses in nursing homes, and physicians in emergency rooms and hospitals. It’s a valiant attempt to make sure that patient autonomy is respected. But whether it will achieve this laudable aim depends on whether patients have the capacity to make decisions when they sign the form and whether they truly understand the underlying issues. Today, patient’s wishes are often not respected. Tomorrow, we may be imputing “wishes” to patients that they never had.

March 16, 2014

No Man is an Island

Early in my career as a geriatrician, a colleague of mine asked me to see a hospitalized patient of his who was having a great deal of difficulty with self-care. The patient lived with her daughter, who was finding caring for her mother an overwhelming responsibility: her mother just needed more help that she could provide. I suggested that the patient work with a physical therapist, recommended adjusting some of her medications, and proposed hiring a home health aide (a person who could assist with bathing and dressing), but the reality was that even if the patient’s balance improved and she had more assistance, the situation would be tenuous at best. But Mrs. Palmer, as I’ll call her, was adamant: she wanted to return to her daughter’s home. Her daughter was equally insistent: she could no longer provide the care her mother needed; her mother would have to move to a nursing home. 

When I discussed the stand-off with my colleague, Mrs. Palmer’s primary care physician, I told him it was the patient’s decision. That’s what my training in biomedical ethics had taught me—patients had the right to make their own decisions about their own health care. He was incredulous. He felt it was entirely up to the daughter whether or not she took in her mother. Finally, we agreed that it really was a joint decision and that our role was to sit down with both mother and daughter and facilitate a discussion between the two of them in which they each explained their concerns.

Years later, I remember this story because it was probably the first time that it struck me just how individualistic our model of healthcare is--and how unworkable that model is. When we speak of medical decision-making, the image we have is of a patient rationally weighing the pros and cons of the various alternatives that the physician presents and making a choice based on personal values and preferences. The current standard of care is “shared decision-making,” which means the physician provides the patient with the alternatives, explains the risks and benefits of each, and helps guide the patient through the decision process, but the final decision is the patient’s. If the patient is incapable of making a decision, usually because of either temporary or permanent cognitive impairment, then our expectation is that the health care proxy, usually a family member, will make the decision instead, and that that decision will be made from the point of view of the patient. The proxy is supposed to use “substituted decision-making,” which means doing what the patient would want if the patient were capable of choosing. Rarely does “shared decision-making” mean that the patient, together with significant others, together discuss what would be best for all of them. But for frail elders—and maybe for many other people as well—it is this sense of “shared” decision-making that is most appropriate.

The importance of this kind of shared involvement in medical care is highlighted in a short piece in the Journal of the American Medical Association this week. Appearing in the section labeled “A Piece of My Mind,” a pediatrician laments the decisions that were made for her father, who has dementia, decisions that failed to include the interests or well-being of her mother, his primary caregiver. At issue is not just “caregiver burden,” the topic of another article in the same issue of JAMAalthough this is certainly a concern. At stake is the recognition that no man is an island. 

The choices we make affect others around us, from our immediate family to our community, to the society at large. The decisions made by a single individual acting in his or her best interest may have emotional, physical, or financial repercussions. I don’t mean to suggest that making medical decisions is some sort of zero sum game—anything that helps me will hurt someone else, maybe even, as in the case of the Palmer family, the patient’s child. Often, the unit of analysis should be the couple or mother and daughter, recognizing that it is their joint welfare that we are seeking to maximize. 

The US is a highly individualistic society. As we age, the limits of such a relentless focus on each person, with little regard for family, community, or nation, becomes dramatically apparent. Perhaps it’s time to rethink how we make the medical decisions that affect older people, and everyone around them.

March 09, 2014

Everyday Ethics

 Nearly 25 years ago, gerontologists wrote about what they called “everyday ethics” in the lives of older people. They wanted to move the focus from the dramatic, life-or-death decisions that were the bread and butter of medical ethics, to the more mundane, but far more common concerns affecting elderly individual. These kinds of issues ranged from seemingly trivial concerns that nonetheless affected quality of life, such as the freedom of nursing home residents to decide when to get up or where to sit at breakfast, to medically consequential decisions such as whether to be treated at home or in the hospital. In some cases, older people had strong opinions about what they wanted, but needed help implementing their choices—in ethical lingo, they were “decision-competent,” but did not have “executional autonomy.” In other cases, older people did not have the cognitive capacity to make choices and needed a surrogate to decide on their behalf. 

Everyday ethics never caught the imagination of physicians or of the general public. It just wasn’t as exciting as the momentous decisions about who would get an organ transplant or whether someone could be taken off a ventilator. But the commonplace decisions that have to made each day for frail older individuals collectively have far greater import than the much rarer life-or-death decision. Someone has to decide whether an 85-year-old woman with dementia and difficulty caring for herself will stay in the community or enter a nursing home. Someone has to decide whether a 90-year-old with pneumonia will be treated in her home or in an acute hospital. Someone has to decide whether the 79 year-old with very advanced dementia should enroll in hospice. But the focus of the medical literature, of empirical studies of what actually happens in daily life and theoretical essays about who should make decisions and on what basis, tends to be on the use or withdrawal of technology, of the major symbols of medical treatment. So a new study that purports to look at the role of surrogate decision-makers outside the intensive care unit setting is a welcome reminder that what matters to older people—and what accounts for most of their healthcare utilization—is not just procedures and surgery and machines.

This new study makes the important but not surprising observation that surrogate decision-makers are critically important to older patients. They report that within 48 hours of admission to a hospital, 47% of older adults require that a medical decision be made in which a surrogate participates. In 23% of cases, these decisions are made exclusively by the surrogate. Unfortunately, this study is confined to the acute hospital setting. It still deals with big ticket items—in 57% of cases, the decision in question related to life-sustaining care, principally whether to attempt CPR in the event of a cardiac arrest, and in 49% of cases, the decision related to an operation or procedure. Not only was the study restricted to the hospital, but it included decisions made in the ICU, even though the authors specifically give as the impetus for their work the need to extend the discussion to settings outside the ICU. But at least it is a start. We need to look at the everyday decisions made by surrogates for their aged, frail, or demented family members and examine how they make these decisions, what help they need, and how they could make better decisions, ideally reflecting the values and needs of those they love.

March 03, 2014

In Good Company

In Britain, a growing number of companies are recognizing the wisdom of providing eldercare assistance to their employees. This isn’t a matter of altruism; as many firms discovered years ago when they opted to offer childcare benefits, employees are more productive if family pressures do not intrude on their work. And while not all workers have children, everyone has or once had parents. Sooner or later, those parents are likely to need help with some of the most basic daily tasks.

As the population ages, more and more adults are engaged in caregiving. A recent American study found that nearly half of all family caregivers perform significant medical or nursing tasks for their relatives. Most commonly this includes giving prescription medications; it may also involve bandaging wounds, preparing special diets, and even assuring the smooth operation of medical devices such as ventilators or feeding tubes. And nearly half of all family caregivers are employed outside the home, with the vast majority between the ages of 35 and 64. Moreover, it’s not just women who are the caregivers: 56% are women but 44% are men. They all report that their caregiving responsibilities are stressful, and the greater the number of medical or nursing tasks they perform, the greater the stress. 

Picking up on this theme, the AARP Public Policy Institute has written a position paper urging employers to recognize the toll taken by family caregiving and to do something about it. In particular, the authors support giving caregivers flexible hours, paid sick leave, and family leave. They recommend offering on-site support groups and referrals to community-based home care agencies. Such measures, AARP argues, can enhance productivity, lower absenteeism, and decrease a company’s costs. In particular, it’s a great deal more expensive to hire and train a new employee than to invest a little in a current employee. In fact, these outcomes are not merely theoretical; they’ve been shown to work, unlike some of the current efforts of companies to promote preventive health care among their workers. 

Linking essential benefits to employment can be problematic: the decision to tie health insurance to one’s job, a decision made in order to circumvent wage controls during WW II, led to an almost exclusive relationship between health insurance and work, and to 47 million uninsured Americans. Only gradually is this connection unraveling. But in this era of shrinking government, creation of an expensive new social program for caregivers, irrespective of employment status, seems highly unlikely. Asking corporations to shoulder some of the responsibility is a reasonable way forward. It’s in their interest, it’s in the interest of their employees, and it’s in the interest of the millions of older people who rely on their families to meet their basic needs.