Can We Talk?

This week, the Massachusetts Coalition for Serious Illness Care released the results of a survey of state residents about advance care planning. The coalition wanted to know whether people were talking about their preferences for care near the end of life and if so, with whom—family? Physicians? The concern was also with whether people who had suffered a serious illness over the preceding year were more likely to have had such conversations and whether factors such as age, ethnicity, or gender influenced behavior. And regardless of whether people had discussed their views, had they designated a health care proxy, a substitute decision-maker in the event of incapacity?

On the assumption that more talk is better, it’s difficult to spin the results as encouraging. Massachusetts residents do not talk much to their doctors about such issues, even if they have had a serious illness and even if they are over age 65—although these two groups do have appreciably higher talk rates than their healthier or younger counterparts. On average, they are not very different from people in the rest of the country and the rates of conversation have not appreciably changed since the last such survey was administered in 2016.

In the population as a whole (the survey sampled adults over the age of 18), only 13 percent had had a conversation with a health care provider about their end of life preferences. Among those with a serious illness or over age 65, this rose to 27 percent.

Those surveyed were more likely to have chosen who would make decisions for them than to talk about what their surrogate should decide, with 63 percent of those over 65 having completed a health care proxy form. 

Perhaps what’s most interesting is that among those who reported they had had a discussion of their wishes, 59 percent said they had initiated the conversation, not the physician or other member of the health care team. Moreover, 34 percent of those surveyed said they did not want to have such a discussion with their doctor—they felt confident that their family members understood their wishes.

Before we get too carried away by the numbers, we should note that only about 210 of the participants were over age 65 (according to the 2010 Massachusetts census, 14 percent of the population was over 65; there were 1500 people sampled in the survey). That’s not many people on whom to base sweeping conclusions and this is the group for whom advance care planning is most essential.

Which leads me to my conclusion: advance care planning doesn’t make much sense in young people or healthy people. The likelihood that such a plan will have to be implemented is just too remote (Karen Ann Quinlan, Nancy Beth Cruzan, and Terri Schiavo notwithstanding—they are the exceptions, not the rule) and the chance that their perspective on what they would want if they were in an unimaginable future state reflects what they would actually want if such a situation came to pass seems slim. Efforts to think about future wishes make most sense for people who already have the condition that is apt to kill them in the future. Once they have started on a particular path, they are better positioned to think about the next steps on that journey.

Geriatricians learned a long time ago that “targeting” interventions to the appropriate population is crucial if they are to be beneficial (and cost-effective). Proponents of advance care should likewise concentrate their efforts on the people who stand to gain the most from discussions of the goals of care—and who are in a position to imagine their future. Even in this arena, we have a great deal of work to do. But spreading our efforts too thinly won't help.

To Fix or Not To Fix

Over the past ten years, people with advanced dementia have gradually come to be recognized as dying. Death may not come in a day or a month, but it will usually arrive within six months and almost always within a year. In recognition of this reality, growing numbers of physicians recommend a palliative approach to medical care for persons with advanced dementia, and increasing numbers of family members accept comfort care for their relatives. But what, exactly, is the best way to make someone with advanced dementia comfortable?

One common problem in this population, an event that is decidedly uncomfortable, is falling, especially when it results in a hip fracture. In nursing homes, which many family members assume is a perfectly safe environment, falls and fractures among individuals with advanced dementia in fact occur with some regularity. Individuals with advanced dementia by definition have poor judgment, limited awareness of the risks to their own safety, and may suffer from visual problems or gait abnormalities on top of their cognitive impairment. Nursing home staff members cannot provide constant one on one supervision. At the same time, walking around may be one of the few remaining sources of enjoyment for the person with dementia. If he or she does fall and does break a hip, and if the person’s family has indicated that comfort is the most important goal, how should that goal be translated into practice?

While we know that over one-third of nursing home residents with advanced dementia and a hip fracture die within six months of their fracture, what we don’t know is how operative treatment (hip fracture repair) compares to non-operative treatment (bed rest and pain medication) in terms of either comfort or mortality. Berry and colleagues attempt to provide some insight into this question in an article appearing in JAMA Internal Medicine. 

Because it’s not currently feasible to randomize patients to the two strategies, the authors emphasize, they resorted to administrative databases. They use information from the Minimum Data Set, an extensive database mandated for use in long term care facilities, together with Medicare claims data to define a population of nursing home residents with advanced dementia and a hip fracture and to look at what happened to them. So, what did they find?

Over a two-year period, they were able to identify 3083 nursing home residents with both advanced dementia and a hip fracture. Fully 85 percent of them underwent surgical repair; the remaining 15 percent were treated non-operatively. Those who underwent surgery were considerably less likely than those treated conservatively to die; early on, there was a 12 percent mortality rate in the surgical group compared to a 31 percent rate in the comparison group. The median survival among those with surgery was 1.4 years; the median survival in the other group was 5 months. 

Perhaps more interesting than survival, since family members tend to regard comfort rather than life-prolongation as the primary goal of care, is differences in pain control. This is especially important since one of the main reasons given for advocating surgery is to control pain. What Berry et al found was that at six months, 29 percent of the post-surgical group were in pain vs 31 percent of the non-operative group. While this difference was statistically significant, it’s actual clinical importance is less clear. Moreover, we really want to know how much pain was experienced in the immediate post-fracture period, probably the first 30 days, which the methodology used cannot tell us. The investigators also found that only 11 percent of those individuals who had been able to walk before the fracture and who underwent surgery were still able to walk six months after the surgery. Retaining the ability to walk is the other major reason for contemplating surgical repair of a hip fracture.

One problem with the study is that we don’t have any information about why surgery was not done in 15 percent of people. Maybe their physicians or their family members perceived them as closer to the end of life than their counterparts who underwent surgery, even if the two groups are indistinguishable in terms of measurable risk factors, and maybe they were correct in their assessment. Or, what is at least as likely, the families who advocated a non-surgical approach were also likely to favor withholding antibiotics or other treatments (with the exception of pain medication) in the ensuing months. It may well be that it was the decision to minimize all kinds of interventions, not just surgery, that led to a shorter life. 

A second problem is that we don’t know anything about the quality of life in the immediate post-fracture period. We know about pain, restraint use and pressure ulcers at six months—but not at one month, which is the time frame over which the treatment decision is most apt to matter. For all we know, people who don’t have surgery have better, more aggressive pain management in the weeks after the fall because physicians understand they are in pain, whereas they are notoriously poor at pain management after an operation, especially with patients who cannot articulate that they are in pain.

Berry et al deserve kudos for asking the right question—what constitutes good palliative care in advanced dementia? They've made a good start, but much more research is necessary to answer the question.