Pushing Palliative Care

The July issue of Health Affairs, a leading health policy journal, is devoted to “advanced illness and end-of-life care.” While most of the articles focus on people who are dying, or at least who are likely to die in a matter of months, a few shining exceptions endorse a broader view. The center piece of this effort, and arguably of the entire issue, is the call to action by several palliative care luminaries and two senior figures from prominent foundations. This distinguished group of health care professionals put forward an idea at once radical and conventional: a national strategy for palliative care, to be spearheaded by the federal government (based in the Department of Health and Human Services) and grounded in a public-private partnership involving payers, regulators, and foundations.

The idea is radical because it would put palliative care, a field only established in the United States in the 1990s, at the forefront of care for the majority of America’s sickest, neediest, most vulnerable—and most costly—patients. It is conventional because it follows the model of earlier bipartisan initiatives that influenced the health care system, such as the Office of National AIDS policy. And it is conventional because it continues the tradition of specialist care established in the US after World War II, an approach to medicine that is uniquely American—and at the heart of what makes our system expensive, inefficient, and out of touch with the needs of sick patients.

Don’t get me wrong—there is much to like and admire about this proposal. It rests on the assumption that the essence of palliative care, an emphasis on symptom management, advance care planning (or as the authors put it, communication about goals and preferences), and psychosocial support to patients and families, is exactly what people with serious illness and functional impairment need. I agree. It endorses the view that this approach to medical care is best delivered by a team of health care professionals. I agree, although I would add family caregivers to the team. And it assumes that the best way to move forward is to expand palliative care expertise (through research, workforce training, and caregiver education), establish standards of care, and assure access—which will require oversight, regulation, and financial support. I’m not sure this is the only way forward, but it is probably the most expeditious way to proceed and parallels the successful models introduced in New Zealand and Australia. It’s the specialist part of the proposal that makes me uneasy.

The authors define palliative care as a “team-based specialty focusing on improving quality of life and relieving suffering,” though they acknowledge that “primary-  or generalist-level palliative care” is another variant, one that “integrates palliative care elements into the care provided by all clinicians serving the seriously ill.” Implicitly, they hew to the old, and I would argue antiquated, distinction between “curing” and “caring.” Standard medicine, in this view, is about curing; palliative medicine is about caring. But in today’s world, where most, although not all, diseases are chronic, cure is seldom what usual treatment is about. Physicians cannot cure diabetes or congestive heart failure, they cannot cure endstage kidney disease or chronic obstructive pulmonary disease, nor can they cure Alzheimer’s disease or many cancers. There are, to be sure, some diseases that can truly be cured, principally infectious ones, but also some cancers and surgical problems. But for the vast majority of serious conditions that afflict adults today, all treatment is palliative. Modern medicine may prolong life, but above all, it lightens the burden of disease, thereby improving quality of life.

Now, if most of today’s serious illnesses are chronic, and most of contemporary medical treatment is inherently palliative, then why limit treatment to palliative care specialists? Surely all physicians who provide care for conditions such as congestive heart failure or COPD should be palliatricized. Only in particularly challenging cases would palliative care specialists be called in. Just as most cases of high blood pressure and heart failure are treated by internists, not cardiologists, but heart specialists have a role in refractory or tricky cases, just as most cases of depression and anxiety are treated by generalists, not psychiatrists, but mental health clinicians have a role in a subset of specially complicated cases, so too should non-palliative care specialists take the lead in caring for most patients today.

American medicine is at a crossroads. We could expand specialty care further by growing the field of palliative care. This is certainly the approach we have taken since World War II to dealing with burgeoning medical knowledge. It’s part of why American medicine is so much more expensive and inefficient than medicine in other developed nations. It is precisely the reaction against highly specialized care that resulted in the kind of person-centered care that is at the heart of palliative care. It is probably the easier path—easier than trying to educate internists, cardiologists, neurologists, oncologists and all other physicians who provide care to patients with advanced illness. Or we could re-conceptualize much of modern medicine as palliative and get rid of the false dichotomy between curative care and comfort care. The century is still young. Let’s get this right.

Life in the End Zone will be on vacation until August 13.

        

           

-->

The Secret to Staying Sharp

The last time that NIH requested a review of the data on preventing cognitive decline in old age (including Mild Cognitive Impairment, Alzheimer’s type dementia, and “usual” age-related cognitive deterioration) was in 2010. At that time, the systematic review of the published literature (performed by the Agency for Healthcare Research and Quality) and the associated state of the science conference (convened by NIH) concluded there was insufficient evidence to make any recommendations about interventions to prevent cognitive decline and dementia.

Now, the NIA has asked the National Academies of Science, Engineering, and Medicine to commission a new systematic review of the data and, based on that review, to issue recommendations about prevention. Its report, optimistically entitled, “Preventing Cognitive Decline and Dementia: A Way Forward,” was just released.  Alas, while the commission bent over backwards to find beneficial interventions, adding observational, non-experimental studies, risk factor analysis, and neurobiological work to the randomized controlled trials (RCTs) that were supposed to provide the evidence for their conclusions, it was forced to conclude, once again, that  the review “identified no specific interventions that are supported by sufficient evidence to justify mounting out an assertive public health campaign to encourage people to adopt them for the purpose of preventing cognitive decline and dementia.” The best the group could come up with was that the review did “find some degree of support for the benefit of three classes of intervention: cognitive training, blood pressure management in people with hypertension, and increased physical activity.

If we examine these three domains, what we find is not entirely encouraging. The arena of cognitive training (brain games, crossword puzzles, studying a foreign language, etc.) had the greatest degree of evidence. There is good evidence that it can improve performance in a trained task—that is, if you work at generating synonyms for words over and over again, you will get better at finding synonyms, at least in the short term. What is less clear is whether the benefits are sustained, whether training in one domain yields benefits in other domains, and whether it translates at all into improvement in daily functioning, in areas such as shopping, cooking, or paying bills. The good news, such as it is, about cognitive training, derives principally from one study, the Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE), which provides moderately strong evidence of effectiveness in the training domain after 2 years but low strength evidence after 5 or 10 years. The improvements that were found failed to translate into areas other than the one where training was provided.

Perhaps surprisingly, given the strong evidence that blood pressure control in people with hypertension is beneficial in preventing stroke and coronary artery disease, vigorous blood pressure treatment did not so readily translate into prevention or delay of any form of cognitive decline in old age. One British study did show efficacy. Given that blood pressure treatment is already recommended for other reasons, encouraging its use in the hope that it might also help fend off cognitive decline evidently seemed harmless enough to the committee.

The story on exercise is similar to that on blood pressure control: the RCT data are inconsistent, but there’s at least some data that shows a positive effect. Exercise studies are problematic because they so often utilize different forms of exercise and prescribe varying duration and frequency of exercise. Nonetheless, given the evidence that exercise is useful to promote mobility and to prevent depression, and that some studies find it beneficial in preventing cognitive decline, the committee opted to include exercise in its short list of interventions for which there is “some degree of support.”

The main justification, it seems to me, for subtitling this report “A Way Forward” is the section on recommendations for future research. The areas that have shown some promise deserve further study. And that study, as well as all other avenues that might be pursued, should be methodologically sound. That means acknowledging the deficiencies of existing work and avoiding those flaws in the future.

I suppose that whether this report is encouraging or not depends on whether you are a glass half full or half empty sort of a person. I will certainly continue to exercise regularly and challenge my mind, as long as I am able to. If I develop high blood pressure, I’ll want it adequately controlled. But I won’t kid myself that any of these measures will get me off the hook. And I will continue to support ongoing research in preventing or delaying cognitive decline in old age. But I won’t hold my breath. So far, the secret to staying sharp is that there isn't one.

Transfers Redux

Last week, I praised MedPAC for devoting an entire chapter of its June report to Congress to strategies for decreasing transfers from nursing homes to acute care hospitals. Some of the pilot projects reported had successfully reduced potentially burdensome, unwanted, and costly hospitalizations of the frail, very elderly population who live in nursing homes. So I was dismayed to read this week about a follow-up study to one of these pilots, a large, randomized controlled trial—that failed to produce any change whatsoever.

Robert Kane, the lead author, who sadly passed away several months before the publication of the article, was a prolific, influential, and thoughtful scholar of geriatrics in general and long term care in particular; Joseph Ouslander, the senior author, is likewise a giant in the field of geriatrics, who has similarly focused much of his research on long term care. Their report of the INTERACT (Intervention to Reduce Acute Care Transfers) trial, begins by observing that the core principles underlying the study are 1) early recognition and proficient management of acute conditions has the potential to prevent the progression of disease to the point where hospitalization is deemed necessary; 2) the availability of communication, documentation, and decision tools can facilitate care by advanced practice clinicians; and 3) an emphasis on advance care planning, hospice, and palliative care can lead to a higher frequency of “do not hospitalize” orders. Encouraged by the results of their non-randomized pilot study, which demonstrated a 24 percent decrease in all-cause hospitalization among residents of study nursing homes (facilities that volunteered to participate) during the study period compared to baseline, rather than a 6 percent decrease in control facilities, the authors developed a larger, randomized controlled trial to further test the effectiveness of their program. The new program relied on webinars and on line courses to educate nursing home staff and monthly phone calls for support.

The authors reported on 227,140 person-years of observation in 264 nursing homes (randomized to intervention homes, usual care homes, and usual care plus phone contact). Careful statistical analysis revealed no difference in the overall hospital admission rate, the potentially avoidable hospitalization rate, or the rate of Emergency Department visits. No effect at all.
       So was the conclusion I arrived at last week—that people living in nursing homes will forgo hospital care if they are offered a viable alternative and if they (or their surrogate decision-makers) understand both their overall health status and the perils of hospitalization—totally unjustified? Maybe. But maybe not. 

       All we know is that the essence of the project involved educating nursing home personnel to allow them, in principle, to provide more on site care. We know that core staff members, who were obligated by the terms of the study to complete all training modules, in fact only attended 67 percent of the webinars and completed only 52 percent of the online courses; they also only participated in 52 percent of the monthly supportive/feedback phone calls. We know that when push came to shove, either patients or families wanted to go to the hospital, staff members wanted to send them, or both.
       What is far from clear is whether the INTERACT intervention actually improved the quality of care available on site, whether residents and families were aware of and trusted in the improvements, or whether any staff members in fact spoke to patients and families about their state of health, explored goals of care, or offered either hospice or palliative care services. 
       Before we abandon the effort, let’s be sure that the training truly “took,” both in the sense of better capabilities (on the staff side) and of heightened awareness (on the resident and family side). As the authors acknowledge, maybe distance learning is not the right way to teach new knowledge and skills. 
       It's premature to conclude that an approach to decreasing transfers is a failure just because the educational intervention on which it is based was unsuccessful. Before making that leap, we need to be sure that the educational effort truly translates into more advance care planning discussions, more widespread detection and treatment of acute medical conditions, and institution-wide familiarity with the changes. There's still hope that better on site medical care and advance care planning will ultimately reduce the transfer rate from the nursing home to the hospital. But first we need to figure out how to provide reliable, competent, trustworthy nursing home-based treatment and then we need to develop a system of advance care planning that builds on the availability of this kind of treatment.

To Transfer or Not to Transfer

With the Senate’s attempt to repeal and replace the Affordable Care Act temporarily on hold, I turned my attention to the MedPAC report sent to Congress earlier this month, its annual report on “Medicare and the Health Care Delivery System.”  MedPAC, I once said, is one of the most-important-organizations-you-never-heard of. It is an independent group of 17 commissioners appointed by the US Comptroller General that advises Congress on the Medicare program. Some of Medicare’s most influential programs in recent years, such as the readmissions reduction program and the hospital acquired conditions reduction program, had their origins in MedPAC recommendations.

One  chapter that I found particularly intriguing was the one on hospital and SNF (skilled nursing facility) use by Medicare beneficiaries who reside in nursing facilities. Much attention has been paid to patients going from the hospital to home and back to the hospital, and a fair amount of attention accorded to patients going from the hospital to the SNF (rehab) and back to the hospital. But this section addressed a different population: the frailest 1.6 million people in America, those living in long term care facilities. It asked whether they were being appropriately transferred to the acute care hospital. As the MedPAC report noted, these are patients who often get into trouble when they are hospitalized: they are prone to falling, developing delirium, suffering from hospital-associated infections, and to experiencing the adverse effects of “polypharmacy,” the prescribing of multiple medications. These are individuals who live in an environment that provides nursing care 24/7 along with personal care, as well as access to physicians, prescription medications, and physical therapists. Surely it would be better for the nursing home residents—and for Medicare’s bottom line—if they could be treated where they live. Are they? If not, why not?

The answer is that they aren’t cared for in the nursing facility as often as they should be. The single most important factor determining if a person is treated in the nursing home or sent to the hospital is the availability of on-site medical care, both physicians (or advanced practice clinicians such as physician assistants or nurse practitioners) and diagnostic modalities (such as x-rays).

Suddenly this conclusion had a familiar ring and I remembered that 35 years ago, during my fellowship in geriatric medicine, I decided to study why nursing home residents were transferred to the acute care hospital. I spent many long hours in the emergency department of Boston City Hospital examining medical records—I didn’t stop until I had identified 100 patients who arrived in the ED from any of 22 area nursing homes. During the same period, 338 older individuals who lived in the community, in their own homes, had sought care, and these people served as controls. What I found was that the patients coming from the nursing home were remarkably similar to those coming from home in terms of their severity of illness. They were, on average, older (83 compared to 77), whiter (92 percent compared to 56 percent), and more likely to be female (64 percent compared to 51 percent). They were more apt to present with fever or a change in their mental status, both common problems with increasing age. But otherwise, the two groups looked very similar from a medical perspective. I concluded that we could increase the efficiency of medical resource utilization and promote better care if we simply improved on-site care in nursing homes. Almost exactly what MedPAC found in its analysis today.

To be sure, some nursing homes have programs in place that go a long way to rectifying the situation, and CMS has supported several pilot programs designed to avoid hospitalizing nursing home residents. These programs have several features in common: they enhance the treatment available in the nursing home by using advanced practice clinicians or providing in-service training to other staff members; and they encourage advance care planning by residents and their families to promote discussions of prognosis, preferences, and planning for future illness.

-->

So why, after over three decades, do we still transfer many patients from the nursing home to the hospital? Why don’t we provide more on-site medical care? The reasons are complex and include an historical lack of interest by physicians in the frailest, oldest patients as well as poor reimbursement for nursing home medical care. But fundamentally, what the enduring problem shows is that we continue to fail to recognize that people in nursing homes—and their families—do want treatment of their medical problems. They may be willing to forgo the most invasive and burdensome forms of treatment—such as ICU care, ventilator care, and major surgery—but that doesn’t mean they are satisfied with a focus exclusively on comfort. If all the nursing home can offer is Tylenol and oxygen, perhaps along with morphine or other opioids, then nursing home residents will want to go to the hospital when they become acutely ill. 

We need to offer nursing home residents a viable alternative to the extremes of comfort care only, on the one hand, or maximally aggressive care on the other. And we need to explain what the various approaches to treatment would mean for them. Only then will we stanch the flow from the nursing home to the hospital.

-->