Us or Them?

Nearly 30 years have passed since Congress passed the Patient Self-Determination Act, enthroning advance care planning as an important part of care in the last phase of life. While the frequency with which patients designate someone to serve as their proxy in the event of incapacity has increased dramatically and the use of various planning instruments such as living wills and instructional directives has also risen, in most settings no more than one-third of patients with serious illness actually have conversations with their physicians about their preferences. 

Assuming that it’s a good idea for patients with serious illnesses to speak with their physicians about their goals of care, whose responsibility is it to raise the question? Does it make more sense to concentrate on educating physicians to communicate well about goals or to focus on empowering patients? 

Over the years, different initiatives have targeted one population or the other. The Robert Wood Johnson’s “Project on Death in America,” a multi-hundred-million-dollar project launched in 1994, focused to a large extent on prospective patients. The AMA’s program, “Education on Palliative and End-of-Life Care” (EPEC), also introduced in the 1990s, is targeted entirely to physicians (in fact, the “P” in the title used to refer to physicians: when first launched, the program was called “Educating Physicians on End-of-Life Care”.) More recently, a series of videos by Angelo Volandes of ACP Decisions aims to show patients and their families what various medical treatments entail, while the “Serious Illness Conversation Guide” from Susan Block, Atul Gawande and others at Ariadne Labs offers a checklist of questions to help physicians structure their discussions.

So, who needs more attention, the doctors or the patients? A new study in Health Affairs may offer some clues. I should point out at the outset that the Health Affairs article does not seek to weigh in on the question of whether to concentrate on physicians or on patients when designing interventions to promote advance care planning. The aim of the study, as indicated by its ponderous title, “Factors Contributing to Geographic Variation in End-of-Life Expenditures for Cancer Patients,” is to understand why some regions of the US spend so much more on care near the end of life than other reasons, with no discernible difference in outcomes. 

There are methodological problems with this study, as with all studies that start with death and work backwards—it is possible that although the people who died had similar outcomes (perhaps not surprising, as they all died), other people who weren’t considered in the study because they didn’t die were more likely to do well if more money was spent on them. Nonetheless, we have two groups of people with advanced lung or colorectal cancer on whom very different amounts of money were spent—in the lowest quintile, the average outlay was $10,131 and in the highest quintile, the average expenditure was $19,318). Was the decision to spend more coming from patient pressure or was it something that physicians were pushing for?

What the authors found was that in the high spending areas, physicians were less knowledgeable about treating dying patients (by their self-report), less comfortable providing care to patients near the end of life, and had less favorable attitudes toward hospice than their counterparts in the low spending areas. The high spending areas also tended to have more specialty physicians but fewer primary care physicians, as well as fewer hospices (per capita) than elsewhere. But—and here’s the key—patients’ beliefs about what they wanted were no different in high and low-spending areas.

All the statistically significant findings were in the domain of physicians, not patients:

Now, this finding does not directly translate into the question of who drives decision-making near the end of life in general and advance care planning discussions in particular. But it strongly suggests that physicians play an outsized role in shaping what happens to patients. Many patients don’t have pre-determined preferences; their values do not unambiguously determine what kind of medical treatment they should get. Or, if they do have some idea of what would be best for them, they are nonetheless strongly influenced by the views of their physicians. If “shared decision-making” is to work, both partners need to be informed and on board—and the physicians are particularly in need of some attention.

All that Glitters...

          Admissions to American Intensive Care Units (ICUs) from hospital emergency departments are on the rise—they doubled from 2003 to 2009—and admissions among patients aged 85 and older growing the most rapidly of all: they increased 25 percent every two years. What we still don’t know is whether or when the ICU helps them. This past week, French researchers published a study in which they shed some light on the question. What they found is that ICU admission in basically high functioning people over age 75 did not improve their chance of survival—and may have made it worse. The ICU probably didn’t make any difference in their level of function or health-related quality of life six months after discharge (if they were still alive)—but there is some suggestion it caused a deterioration.

         In a nutshell, what the researchers did was to come up with a standardized protocol for determining who should be admitted to the ICU, based on the particular conditions they had and how severe the conditions were. They then randomized hospitals to either use this special protocol or to rely on whatever they normally did to make decisions about ICU admission. To be eligible for the study, you had to be at least 75 years of age and at baseline, ie before you got acutely ill, you had to be independent in almost all your daily activities. When physicians used the special triage system, older patients were far more likely to be admitted to the ICU (61 percent) than when they did not (34 percent). But the death rate in the ICU, and the length of stay in the hospital were the same in the two populations. Overall hospital mortality was higher in the intervention group (30 percent) than in the controls (21 percent). Moreover, decline in independent functioning was greater at six months in the intervention group than in the controls.

         What should we make of all this? I think it’s reasonable to conclude something about what we're not doing. We’re not currently depriving many older patients of care that would be beneficial for them. Maybe all those physicians who don’t admit certain elderly individuals to the ICU aren’t discriminating against them; maybe they’re on to something. What we don’t know is whether the doctors who provide “routine care,” those who use criteria other than the officially sanctioned ones for determining who gets in to the ICU, are still over-utilizing the ICU. What we don’t know, although it’s a bit implausible, is whether there are older patients who are excluded both by the seat-of-the-pants criteria and the rigorously-determined criteria, who would nonetheless benefit from a trip to the ICU.

         Behind all the methodological considerations and the statistical conclusions, we have two inescapable realities: first, there are many older people who are so sick and so close to the end of life that no technology, no medication, no amount of monitoring or nursing care will keep them alive—and that’s true even for the population addressed in this study, which excluded anyone who was frail. Second, the ICU is a medical intervention, much like a drug or a procedure, and it comes with side effects. For older individuals, those side effects may outweigh any potential benefits of the intervention. So when the physician recommends the ICU for you or your older relative, think twice before agreeing.

What the New Year Will Bring

I’ve been searching for something upbeat to say about health care for older people in 2017. It’s been difficult to find anything newsworthy. The best I could come up with was that the direst predictions might not come to pass. Speaker of the House Paul Ryan says he wants to privatize Medicare by instituting “premium support,” which means giving people fixed amounts of money to buy health insurance on the private market instead of using government-run Medicare. But he might not get his way; after all, there are 46 million older people on Medicare and they like their program. Assurances that any changes won’t go into effect for several years may not be good enough. The nomination of Georgia Representative Tom Price to serve as head of the Centers for Medicare and Medicaid Services strongly suggests there will be a push toward substituting block grants for the federal Medicaid program, which would mean large cuts to Medicaid in many states. It might not happen; there are roughly 6 million older people who are dually eligible—they qualify for both Medicare and Medicaid, and they survive thanks to the current arrangement.  And then there’s the vaunted repeal of the Affordable Care Act, which might mean axing the Center for Medicare and Medicaid Innovation, an institute that has been testing strategies to improve quality and save money, as well as PCORI, the Patient Centered Outcomes Research Institute, a major source of grants for studies of innovative health care programs. Congress might leave those parts of the ACA intact, but CMMI was budgeted $10 billion for the period 2010-2019, of which about $3.5 billion remains. This money looks to me to be ripe for cutting by an administration that touts ideology as the basis for decision-making, not science. But surely there must be something uplifting to say about the new year. Judith Graham of Kaiser Health News suggests there is.

Beginning in January, 2017, Medicare will introduce new rules that offer incentives for physicians to change the way they care for the sickest, most vulnerable older patients, those with multiple serious chronic conditions, those with dementia, and those suffering from mental illness, especially depression. Medicare is changing its reimbursement system for “complex chronic care management.” Basically, it will pay more for coordination of care and require jumping through fewer hoops to get the extra payments. Medicare is also going to be more generous in paying for comprehensive dementia assessment—if physicians follow a number of rules. They have to assess their patient’s ability to perform activities of daily living, they have to evaluate behavioral symptoms, they need to review medications, and they need to use standardized tests for assessing cognition. Finally, they will have to elicit the patient’s goals and values and determine the caregiver’s knowledge and resources to develop a care plan for the patient—including plans for what to do when the patient becomes acutely ill. Medicare will offer an incentive for primary care doctors and behavioral health specialists to work together to deliver effective care for older patients with mental illness. Finally, Medicare will recognize that taking care of elderly patients involves more than classic “visits” consisting of a doctor sitting opposite a patient, taking a history, doing a physical exam, and prescribing tests or treatment: it entails such activities as talking to family members and reaching out to community service providers. Recognizing the value of physician work that doesn’t involve face time with patients means reimbursing physicians for their time and that’s exactly what Medicare will initiate.

These are all good developments. Physicians do need to coordinate complex chronic disease management and they ought to properly assess patients with cognitive impairment and develop an advance care plan for them. Similarly, they have to be able to spend time working with families, caregivers, and other professionals to do a good job for their oldest patients. But whether tweaking the fee-for-service system to achieve these ends will work is another question. What we know works are special programs for eligible patients, programs such as GRACE (Geriatric Resources for the Assessment and Care of Elders) or PACE (Program of All Inclusive Care for the Elderly) or Guided Care. These are comprehensive programs with a dedicated staff of physicians, social workers, nurse practitioners, and others who already provide complex care management,  who already know how to evaluate memory, and who often work with behavioral health as well as caregivers. Whether encouraging primary care doctors to adopt these approaches simply by offering to pay extra for incorporating these strategies into routine practice will be equally effective is far from clear. But it might be a step in the right direction. And if there’s money available to measure whether it works or not, we might actually find out.

Pursuing Palliation

We’ve known for a long time that breaking a hip can be devastating for an older person. It often leads to a loss of independence and it's associated with a substantial increase in the risk of both nursing home placement and death. While the rate of hip fractures declined in the US between 1990 and 2010, it remains stubbornly high: every year, 300,000 people fall and fracture a hip. A new study suggests the consequences of a hip fracture are especially severe in people who live in nursing homes.  In light of the high rate of disability and death in the 6 months after a hip fracture, an accompanying editorial recommends that breaking a hip in the nursing home signal the need for palliative care. Absolutely—but many of the patients reported in the new study should have been getting palliative care long before their fateful fall.

The authors of the study in JAMA Internal Medicine identified 725,000 Medicare fee-for-service patients who broke a hip during a 4-year period between 2005 and 2009; just over 60,000 of them, or 8%, lived in a nursing home prior to sustaining a hip fracture. It was these 60,000 who were the basis of the study:  the vast majority were women (75%), white (92%) and demented (91%). They also tended to have multiple chronic diseases and to have difficulty with many basic daily activities, which is hardly surprising, as their illnesses and their impairments were precisely why they lived in the nursing home.

After their hip fractures, many patients went downhill quickly. Fully 36% were dead within 6 months. Among those who survived to the 6 month mark, over a quarter had become totally dependent in walking. By the time a year had elapsed, just under half of the residents who had fractured their hip had died. Only 1 in 5 of those who started out being fairly independent in walking had regained their previous level of function. Risk factors for death or disability included male sex, advanced age, white race, multimorbidity, cognitive impairment, and dependence in basic activities. Of note, patients treated non-operatively (11.8% of the sample) did particularly poorly in terms of physical functioning and survival.

These findings fit with the results of earlier, smaller studies. But I couldn’t help asking, as I read this dismal portrait of life-after-hip-fracture-in-the-nursing-home, what happens to people who live in a nursing home who don’t break a hip? How many of them decline? The study in JAMA Internal Medicine had no control group, no nursing home residents with a comparable degree of physical and mental impairment, cared for during the same time period, who happened not to sustain a hip fracture.

I turned up another study also published this year entitled “Natural course of dependency in residents of long-term care facilities: prospective follow-up study.” The study was carried out in Dutch nursing homes and it included both people who had hip fractures along with those who did not. The population was reasonably similar to the US nursing home Medicare population: 75% were women and their mean age was 84. The Dutch have a system for reporting dependency that is different from (and more sophisticated than) the American approach: they report on the “Care Dependency Scale (CDS),” a 15-item scale that grades patients from 15 (totally dependent) to 75 (almost independent in eating, dressing, walking, and dressing). What they found was that among 890 Dutch nursing home residents, just under 15% had died at 6 months and another 18% had died by one year. But the degree of dependency at baseline was strongly predictive of the outcome, with higher dependency leading to greater likelihood of death, even after correcting for gender, age, and the presence of diagnoses such as cancer or dementia. Among residents in the low CDS group (that is, the most independent people), 20% actually improved over a 12-month period and the vast majority (80%) remained unchanged. Among residents in the highest CDS group (the most dependent people), no one improved, 64% remained stable over 6 months, and 36% got worse. The middle group, not surprisingly, fell between these extremes.

How did the nursing home residents in the Dutch study (some unknown fraction of whom fell and broke a hip) compare to the nursing home residents in the American study (who were selected based on their having fallen, broken a hip, and been hospitalized)? Those with hip fracture did worse: over the course of a year, 80% deteriorated markedly in their independence, compared to only 36% of the worst-off Dutch residents; and by 6 months, 36% had died, compared to about 20% of the worst-off Dutch.

These comparisons are approximate at best, but they give some hint of what the Medicare nursing home residents might have expected if they hadn’t broken a hip. So while a hip fracture does represent a turning point, admission to a nursing home in the first place also represents a turning point, a transition to life’s final chapter. Thus while it is eminently reasonable to offer palliative care alongside of surgery to all nursing home residents who break a hip, it would be even better to offer palliative care alongside conventional medical care to everyone in the nursing home.