How We Die

The data are out: in 2017, the opioid epidemic took even more American lives than in any previous year: a record 72,000 people died of an opioid overdose. As we struggle to figure out how to deal with this problem, it seems more important than ever to remember that opioids--morphine and its cousins--when used appropriately, can also be life giving. This is particularly true near the end of life, and one setting where people often receive such opioids is hospice care. Why are opioids beneficial in this setting and how can abuse be avoided?

For starters, we need to recognize that not everyone who is in the last phase of life needs opioids. Patients enrolled in hospice, for example, who typically have a prognosis of six months or less (the commonly used eligibility criterion) have a wide variety of diagnoses.  Of the 1.43 million Medicare patients enrolled in hospice in 2016 (only 5% of hospice patients are under age 65), 27% had cancer as their principal diagnosis. The remainder suffered primarily from cardiac disease, dementia or any of a number of other conditions. Some of the non-cancer patients experienced pain, but many suffered chiefly from other symptoms such as nausea, confusion, or fatigue, most of which are not treated with opioids. 

Among hospice patients who do experience pain, hospice nurses, under the direction of a physician, arrange for medical treatment—and this commonly includes opioids. Opioids are also sometimes prescribed to ameliorate severe shortness of breath. This last claim sounds paradoxical—don’t opioids cause respiratory depression? In large doses or when rapidly escalating the dose they suppress respiration. Patients who are short of breath due to advanced heart or lung disease and whose underlying cause of the shortness of breath is no longer treatable often feel as though they are suffocating. They become tremendously anxious—which makes their breathing even worse. Low doses of opioids in this setting can make them less anxious, terminating this vicious cycle and providing a modicum of relief. 

Conventional wisdom in palliative care circles (palliative care is an interdisciplinary approach to advanced illness that encompasses but is not synonymous with hospice) is that with expert pain management, 90% of pain in serious illness can be well-controlled. This involves use of round the clock medication with supplementary doses for “breakthrough pain,” pain that develops before the next scheduled dose of medication. The medication is usually administered orally or via a patch on the skin; occasionally, a continuous intravenous infusion (“pump”) is needed and even more occasionally, a sophisticated method of providing pain relief will be provided by an anesthesiologist (for example, an epidural injection or a nerve block).

So perhaps quality of life can be improved in the hospice setting, but is it at the cost of shortening life?  What’s fascinating is that effective pain and other symptom management at the end of life may actually prolong life. This was demonstrated most dramatically in a widely cited study of patients with very advanced lung cancer. In this study, patients who got early palliative care alongside of traditional oncologic care had a median survival of 11.6 months compared to 8.9 months among controls who had usual care but did not receive palliative care. To put this in perspective, a differential survival of 1.7 months is substantial in the world of cancer. If a new chemotherapy drug resulted in an extra 1.7 months of life compared to conventional treatment, the new drug would get expedited approval by the FDA and be enthusiastically promoted by oncologists.

Maybe palliative care can prolong life, but palliative care does a great deal more than treat pain. Maybe the life prolongation that was found in the lung cancer patients is because their depression was treated or because they declined experimental chemotherapy that actually shortened life. What do we know about opioids themselves? Do they shorten life? This question is difficult to answer definitively because it’s not ethical to do a randomized study—taking two groups of people and assigning one group good pain management and another group inadequate pain management. We do know that among home care patients who received high or escalating doses of opioids, survival was the same as among similar home care patients who got low dose opioids. 

Perhaps opioids don’t shorten life on average, but you might think they precipitate death when used in actively dying patients. Once again, there are no good studies to address this question and there will never be any because we cannot ethically randomize dying patients to either receive doses of medicine that are adequate to relieve pain or to be left in pain. But after reviewing the available observational literature, physicians concluded that opioids prescribed in the palliative care setting for dying patients do not result in death. In fact, they argue that the “doctrine of double effect,” which is widely cited as justifying opioid-induced death by arguing the intent was pain-relief and not death, need rarely if ever be invoked.

Despite the data indicating that pain management near the end of life is tremendously beneficial and, in competent hands, is associated with minimal risk, pain in this setting continues to be under-treated. Contrary to the public perception that hospice nurses deliberately give high dose opioids to put patients out their misery, nurses tend to under-treat patients because they worry that opioids will cause harm. A recent position statement by the American Society for Pain Management Nursing and the Hospice and Palliative Nurses Association exhorts its members to “advocate for humane and dignified care, promoting ethical, effective pain and symptom management without exception.” This is not an endorsement of either physician assisted suicide (legal in 7 states and the District of Columbia under highly specific circumstances) or euthanasia (illegal throughout the US). Rather, it is a ringing endorsement of the view that high-quality pain management improves quality of life until the very end—and can decrease the demand for interventions of last resort like physician assisted suicide.

The Truth About Hospice

Hospice is widely touted as the best form of care near the end of life. As a result, the proportion of people who are enrolled in hospice at the time of death has been steadily increasing. Nearly half of all Medicare patients are receiving hospice care at the time of death. But a new report suggests that the quality of care they receive may not be what it should be. Moreover, a chunk of the $16.7 billion that Medicare spends on hospice (that was in 2016; it's more today) goes towards care that is unnecessary or not provided at all. What exactly is the problem? How widespread is it and how can patients and families identify hospices that provide high quality care?

While substandard care and fraudulent billing are distributed throughout the country, these practices occur disproportionately in the 64 percent of hospices that are for-profit. The bad behavior predominantly involves two specific variants of hospice care: general inpatient hospice care and hospice services that are provided within institutions, whether skilled nursing facilities or assisted living facilities. General inpatient care is an intensive form of care offered when symptom control cannot be achieved elsewhere (ie at home], so the patient is transferred to a hospital or skilled nursing facility. For this type of care, Medicare pays a per diem rate of $720, compared to $187 for home hospice (actually this is the rate for days 1-60, after that, the rate drops to $147 per day). The kinds of abuses that have been reported are indeed disturbing: the report gives several examples.

However,  General Inpatient Care accounts for only 1.5 percent of all the days that patients were enrolled in hospice. 

Other cases of allegedly inappropriate billing take place in Skilled Nursing Facilities (SNF) or in Assisted Living Facilities (ALF). Some instances were unequivocally fraudulent, as when hospices paid facilities to enroll patients in hospice, sometimes without the knowledge of patients or their families.  But again, it’s important to keep this in perspective.  A minority of hospice patients are cared for in these environments: 25 percent of hospice beneficiaries during the period the study examined (2006-2016) lived in a SNF and only 13 percent in an ALF.

Several of the criticisms leveled by the report are of questionable significance. The study says that many hospices fail to develop the mandatory “comprehensive care plan,” a document that spells out what services the patient needs and how they will be provided. This failing was especially egregious in the inpatient setting, where in 85 percent of cases, no such plan was documented. But the absence of a written plan doesn’t mean there was no plan or that inadequate care was provided. It means just what it says—the hospice did not create the requisite piece of paper. Maybe, just maybe, they thought it was a waste of time, a meaningless bureaucratic requirement.

Hospice care is also criticized for failing to provide physician visits. Actually, hospice does provide one physician visit. A face to face visit with a physician at the time of admission to hospice has been mandatory since 2011, so hospice patients do see a physician at least once during their hospice stay, which in many cases is short: over half of all hospice patients are enrolled for less than 30 days, and over one-fourth are enrolled for a week or less. Many hospice patients and their families would like more involvement of the medical profession, particularly their primary care physician or the relevant specialist, but that’s different from suggesting that the quality of care was poor because there were no medical visits at all.

Skilled nursing facilities are accused of double dipping, of billing Medicare for services that they already routinely provide as part of their usual care. This has been a worry since Medicare agreed to cover hospice care in a SNF. Care by nurses and nurses’ aides are a normal component of nursing home care. But that doesn’t mean that the services offered by hospice are redundant; on the contrary, the reason that hospice can be beneficial in the SNF environment is precisely because the usual nurses may not be skilled in pain management and the amount of aide time may be totally inadequate for a dying patient.

Lastly, the report argues that the payment system incentivizes hospices to minimize services and to cherry pick patients, selecting low-need, long-stay patients, such as those with advanced dementia, rather than high-need, short-stay patients, such as those imminently dying of cancer. We’ve known about this phenomenon for some time. In fact, CMS responded by modifying its payment system to pay more for the first few days of care and for the last few days of care and less for the in-between days. The practice of complementing high-cost patients with low-cost patients is only a problem if the low-cost patients don’t deserve to be enrolled in hospice at all. If they do, and there’s every reason to think they do, then it’s simply a good business strategy. Hospitals do the same thing when they add services for which they are generally reimbursed well to compensate for the services for which they are poorly reimbursed. The alternative would be to abandon the per diem payment system and go to fee-for-service. But that’s the model that is gradually fading away from the rest of the medical system because it promotes the use of volume rather than quality.

What should we conclude about hospice care in America? How should prospective patients respond to this report and how should Medicare respond? 

Patients and their families would do well to consult Hospice Compare, the CMS website, for basic information about quality. This tool relies principally on patient and family satisfaction surveys rather than objective measures, but it’s very revealing. Rather than add more measures, which is what the authors of the report propose,  I think the tool should be publicized: I was familiar with Hospital Compare and Nursing Home Compare, but I confess I did not know about Hospice Compare until recently--and the site was launched in August, 2017. 

If families have a choice between a not-for-profit hospice and a for-profit hospice, they may find it prudent to select the not-for-profit option.  On average, not-for-profit facilities are associated with higher quality care. 

As to steps that Medicare should take, increased across the board regulation, which is what the report advocates, seems unduly burdensome. Far wiser would be to target enhanced supervision and regulation to those areas that need it most, namely skilled nursing facilities and assisted living facilities. Stiffer penalties for malfeasance would also be wise. As with banking fraud, it’s not enough to slap the owner or executive director on the wrist. Jail time is a much more powerful disincentive to bad behavior. And the bad behavior we’re talking about here is neglecting people who are dying and in pain.

Where We Die

Honoring patient preferences, which is shorthand for providing an approach to medical treatment consistent with what patients say they want, has become a fundamental tenet of American medicine. And one preference that the vast majority of Americans share, according to multiple studies, is the wish to die at home. 

Whether dying at home is actually what patients want when they are faced with impending death, rather than an abstract preference expressed when they are healthy, is another matter—and I’ve previously argued that as hospital-based palliative care improves and home-based palliative care places an ever-growing burden on families, hospitals have become more attractive as a site for dying. But what patients tend to agree on is that they don’t want to suffer as they are dying.

To the extent that hospital care entails interventions such as ventilators or ICU treatment or chemotherapy, patients are reluctant to subject themselves to this type of care, especially if its likelihood of prolonging life is remote. To the extent that fewer hospital deaths and more home deaths is a marker for less suffering at the end of life, change in this direction is very desirable. A new study by Teno and colleagues shows we are continuing to make progress in this direction.

A few years ago, Teno et al performed a similar study comparing the experience of patients in 2000 to the comparable experience in 2009. What they found then was a marked decrease in the percentage of elderly Medicare fee- for-service decedents (health-policy-speak for people over age 65 with conventional Medicare who died) who expired in the hospital (32.6 percent vs 24.6 percent). Over the same period, however, they found ICU use increased among decedents in the last month of life (from 24.3 percent to 29.2 percent) as did the percentage of dying patients who underwent a transition of care (nursing home to hospital, for example) in the last 3 days of life (10.3 percent to 14.2 percent). The current study updates these findings by extending the period of analysis to 2015 and by adding data from older patients enrolled in Medicare Advantage programs, who now account for 30 percent of the Medicare population.

What they discovered today was that the proportion of hospital deaths among the fee-for-service group has continued to fall, going from 32.6 percent in 2000 to 24.6 percent in 2009 to 19.8 percent in 2015. ICU use in the last 30 days of life, which had risen between 2000 and 2009, remained stable at the 2009 level in 2015. Transitions to another site of care in the last 3 days of life, which had also risen between 2000 and 2009, went back down in 2015 to the same level as in 2000. And the chance of being enrolled in hospice at the time of death rose from 21.6 percent in 2000 to 50.4 percent in 2015. When the investigators looked at a sample of Medicare Advantage patients, they found these individuals had the same experience in 2015 as their fee-for-service counterparts.

What does all this mean? I suspect what it means is that when we know with a high degree of certainty that someone is going to die in the very near future, we tend to focus on comfort care. If physicians, patients, and families recognize that death is imminent, hospitalization is relatively unlikely, as is ICU care or transfers from home or nursing home to another site of care. However, physicians often cannot be so certain that death is likely to occur in the next few weeks or months. As long as the usual strategy is to pursue maximally aggressive care until death is virtually sure to occur in the immediate future, and then to abruptly transition to care focused exclusively on comfort, the picture we see today is likely to continue.

There is another approach. That approach involves opting for a goal that is neither comfort only nor life-prolongation at any cost. Instead, maximization of function is paramount; treatment aimed at prolonging life is also acceptable, provided it will not affect quality of life in a major way. So, too, is comfort a goal, but only to the extent that it does not conflict with maintaining function. For people who are frail, extremely old, or both this alternative strategy translates into fewer hospitalizations, fewer ICU stays, and fewer transitions of care in the final stage of life, whether that period is measured in weeks, months, or even years. 

Medical treatment does not have to be all or none; there is something in between. It’s quite possible that many people would opt for this type of care—if only they knew it existed.

A Shot of Irish Whiskey

I recently stumbled across The Way We Die Now in the new books section of my local library. I hadn’t heard of it or its author, the Irish gastroenterologist Seamus O’Mahony, and I couldn’t find any reviews in American publications. Intrigued, I checked it out. It’s one of the more insightful—and simultaneously annoying—-of the  long list of books about death and dying.

The author makes several observations that are worthy thinking about. First, he says that dying is inherently messy and distressing; our attempts to sanitize it with what he calls the “syringe-driver” (Britishese for a “pump,” a way to deliver opioids such as morphine intravenously or subcutaneously or even directly into the central nervous system in a continuous, steady fashion) or with physician assisted suicide are vain attempts at controlling the uncontrollable. Second, and on a related note, he mocks the insistence by some that dying should be an occasion for “personal growth;” there’s nothing uplifting about dying and it is seldom an opportunity for repairing longstanding personal rifts. Third, he derides all self-proclaimed “death experts,” by which he principally means palliative care physicians, although he regards proponents of “narrative medicine” as similarly tainted. While acknowledging some of the contributions of palliative medicine, such as better pain control and the development of inpatient hospices, he feels strongly that the medical care of the dying should remain in the hands of primary care physicians.

Death is messy: O’Mahony discusses the writings of several public intellectuals, Philippe Aries, Ernest Becker, and Ivan Illich, on this subject. Aries, writer of the monumental history, Western Attitudes Towards Death, O’Mahony describes as a “romantic reactionary who looked back to an idealized, pre-industrial past” because he yearns for a peaceful death, at home, surrounded by family. Becker, author of The Denial of Death, argues that fear of death is the essence of being human and that each individual must sublimate his or her “fear of extinction with heroic projects designed to transcend death.” And Illich, iconoclastic writer of Medical Nemesis, laments the medicalization of death, exhorting us to “learn to cope” with the external constraints on the human condition.

I also was deeply influenced by these three writers: Aries because the historical perspective helps us see that the way things are today isn’t necessarily the way things have to be; Becker because I agree that the idea of an “immortality project” is tremendously useful for those of us who are aware of our mortality and don’t believe in an afterlife; and Illich because he opened my eyes to the notion that our world is excessively medicalized. Thanks to Aries, I have sections on history in many of my books—including my forthcoming Old and Sick in America, where I use an historical perspective to demonstrate the power of the Medicare program to shape the experience of illness. In homage to Becker, I called my last book, The Denial of Aging. And one of my earliest articles, a critique of the modern nursing home, decries its medicalization. I share with O’Mahony the view that death today is over-medicalized, that we shouldn’t expect to control the exact time and course of our dying, and that the clergy (including secularly oriented chaplains) and social workers are as necessary as medical doctors.

Death isn’t an occasion for personal growth: It’s not just dying that isn’t an opportunity for personal growth. The whole idea of “personal growth” rubs me the wrong way, at least as embodied in the work of Abraham Maslow, with his claims about self-actualization, or the “desire to become more and more what one is, to become everything that one is capable of becoming.” I’ve tended towards the view that each person should make the most of his or her own talents and abilities, and should seek satisfaction by applying those talents and abilities to improve the world. But whether or not self-actualization is every a desirable goal, surely it is too much to ask of someone who is dying that he or she continue to “grow.”

We shouldn’t leave death experts in charge: Palliative care increasingly sees itself as the specialty that is uniquely able to communicate, to break bad news, to help patients fill out advance directives, and to control pain and other symptoms. I am not as cynical as O’Mahony about the importance of communication and the possibility of physicians learning to be better at it—he drips with disdain as he asserts that “one of the more pernicious myths of modern medicine is the notion that a doctor with ‘communication skills’ and a sympathetic manner can somehow magically transmute bad news into something palatable…” Yet at the same time, he acknowledges that the “Liverpool Care Pathway,” an algorithm for caring for dying patients in British hospitals that was done away despite its many successes because of lapses in communication: “poor communication was at the root of virtually all complaints about the LCP.” And I think O’Mahony is mistaken when he ridicules the idea that breaking bad news is a special skill—the issue isn’t that when done well, patients accept the news with good grace; rather it’s that when done badly, patients feel abandoned, frightened, and angry. Finally, I share O’Mahony’s concerns about instructional advance directives—documents that purport to dictate exactly what medical procedure will be done in particular circumstances. He writes that “advance directives perpetuate an illusion that we can control, in minute detail, our treatment of an unpredictable illness at some unknown time in the future.” But to confound advance care planning, which can focus far more broadly on goals rather than on the specifics of treatment, with advance directives, that are either uselessly vague or excessively specific, is profoundly misguided. 

That said, I agree that palliative care principles—a view of the end of life as necessitating far more than just medical care, a belief that patients and families need information and guidance to be provided by a kind and compassionate professional, and a recognition that physical symptoms can often be ameliorated if not ablated---should be an essential part of what all doctors do.

So ignore the misunderstandings about the American health care system—O’Mahony says that nearly half of Americans die in hospice care because insurers discovered that “it saves money” and is seemingly unaware that this is predominantly home hospice, not institutional hospice, and that tthat the work from Mass General showing that early palliative care prolongs life in advanced cancer said nothing about cost. He likewise thinks that “in the US” death with dignity “has become a euphemism for euthanasia” (it hasn’t). Try not to mind the ridicule he heaps on both dignity therapy and narrative medicine, which he accuses of advocating that physicians take on a “quasi-sacerdotal role.” Appreciate instead the nuggets of truth: a physician’s job is the treatment of illness (not spiritual malaise or existential angst); the syringe-driver (or morphine pump) “allows for a softer, less frightening, final agony;” “palliative care should be at the center of what all doctors do;” and physicians should treat patients with kindness, courtesy, and yes, dignity.

Growth and Transcendence?

In 2003, I decided to branch out from geriatrics and try something new. Well, a little new. I recreated myself as a palliative care physician. I’d previously been a bit dubious about palliative care, which in its early days focused principally on people with cancer and almost exclusively on people who were imminently dying. My interest was in people who were in the last phase of life, whether that phase would last days, months, or even years. My patients at Hebrew Rehab Center, where I had worked for the previous eleven years, had an average age of 88. They all had major limitations in their ability to function independently, otherwise they wouldn’t have been living at Hebrew Rehab: either significant physical problems or, a large proportion of cases, cognitive dysfunction, or both. I had come to realize that many if not all of them stood to benefit from a palliative approach to medical care. So why not embrace palliative care as a specialty, focusing principally on very old people, but also expanding my horizons to include younger individuals?

Palliative care was a good fit for me. I came to see the field as built on three legs: advance care planning (some people include communication here), psychosocial support, and symptom management. It is an interdisciplinary field and its focus is on supporting patients and their families through a difficult period of their lives. Much of the work involves making sure people understand their condition and what they are facing so they can make realistic and wise decisions about the treatments they receive as well as about where and how they live. Many of my colleagues shied away from such discussions; I thrived on them, feeling I could help assure that patients got the kind of care that made sense for them as they approached the end of their lives. Often, I rescued them from needlessly burdensome and ultimately futile medical interventions. There was, however, one strand of palliative care that disturbed me.

What bothered me was the tendency to exalt dying, to see dying as an opportunity for growth and transcendence. Now, not all palliative care physicians, hospice nurses, and other professionals are afflicted by this tendency, but for some it was kind of a religion. The business of palliative care, in this view, is to promote spiritual growth. And by implication, patients who don’t find dying uplifting, who aren’t able to reach new heights or discover new aspects of themselves, are failures.

I confess that I’ve never been enthusiastic about the American psychologist, Abraham Maslow, with his five (later nine) stages, culminating in “self-actualization,” or the experience of  “self-fulfillment” manifested by “peak growth experiences.” I’m even less enthusiastic about applying this model to people approaching the end of life.  Dying, and even living the last six or twelve or twenty-four months of life, is often a messy business. It seems to me to be good enough to be physically and emotionally reasonably comfortable. That’s hard enough to achieve. Ideally, it involves attaining a certain level of inner peace, of acceptance of the life one has led. But growth experiences? Euphoria? Joy? Wonder? That seems a bit much. So I was pleased to read the article in the Sunday NY Times about B.J. Miller, a palliative care physician who is a triple amputee and who until recently served as executive director of the “quirky” Zen Hospice Project in San Francisco.

Miller is by all accounts a remarkable doctor and human being. He is charismatic. He is intense. He has the capacity to truly “be” with people and help them come to terms with their condition and their lives. His story, well told by journalist Jon Mooallem, is inspiring. But he isn’t big on transcendence. In his own words, palliative care in general and Zen Hospice in particular aren’t about our need for death to be a hypertranscendent experience: “Most people aren’t having these transformative deathbed moments. And if you hold that out as a goal, they’re just going to feel like they’re failing.” Instead, the name of the game is to allow those who are dying and the people who love them to “live a succession of relatively ordinary, relatively satisfying present moments together.” Now that’s a philosophy that makes sense.

Making Dollars and Sense with MediCaring

For roughly 20 years, a proposal to offer a new Medicare benefit for frail older people has gradually been building momentum. Named Medicaring, it's the brainchild of the pioneering geriatrician and palliative care physician, Dr. Joanne Lynn. Now, the Altarum Institute, where Dr. Lynn is the director of the Center for Elder Care and Advanced Illness, has launched "MediCaring Communities." Lynn and colleagues describe this new, revised model and offer a simulation to show how it could play out in practice in an article in the Milbank Quarterly. The bottom line is that the concept not only makes sense, but it also makes dollars and cents.

The basic premise is that we still do a poor job of caring for frail elders, exactly what I repeatedly argue in my blog posts: we prescribe the wrong medications, subject frail elders to too many tests, and provide treatment that makes sense for people with just one medical condition, not for people who are very old, have multiple chronic conditions, and suffer from impairments in their daily activities. As a result, frail elders are often hospitalized, where they develop delirium and falls and endure incontinence and iatrogenesis. If this state of affairs wasn’t bad enough, all this costs a fortune.

In response, the proponents of MediCaring Communities argue that we should instead address frailty by providing “reliable, supportive services and a care plan that reflects the frail person’s situation and priorities.” This is best achieved by integrating supportive services (transportation, social services, and housing) and medical care and by replacing some of the most expensive and burdensome medical services with additional support services. Those who would be eligible for this program would either be over 65 and have at least 2 areas of physical limitation (or dementia) or over 80, regardless of limitations. In addition to incorporating health, social, and supportive services, a community board would monitor and revise the program. And each participant in MediCaring would have a longitudinal care plan that reflects his or her personal goals of care.

The authors simulated how this program would unfold in 4 different communities, reflecting diverse environments: Akron, Ohio, Milwaukie, Oregon, Queens, New York, and Williamsburg, Virginia. Working with leaders in each area, 4 separate plans were developed that varied in the details of their operation but were similar in the overall strategy. What they found was that all 4 communities would generate substantial savings every month for each enrolled beneficiary. These savings would arise from reductions in inpatient hospitalization, decreased use of skilled nursing facilities, and lower use of long term nursing home care. In Queens, for example, the monthly savings per enrollee would total $250 in the first year, but rise to $537 by the third year. Cumulative net savings from the 4 communities was projected to be about $11 million by the end of the second year and $31 million by the end of the third year for the 15,500 eligible patients.

For MediCaring to work in practice, CMS would need to grant waivers to bypass various regulations that govern current Medicare provider organizations. But most important—and most challenging—it would require older people to be identified as frail (an estimated 10 percent of the population over age 65 is frail, with that percentage rising with age) and it would require that frail patients and their families accept the tradeoffs that underlie MediCaring. Is that a realistic possibility in this era where people don’t want to think about declining health and don’t want to limit their options?

The good news is that 42 percent of Medicare beneficiaries are enrolled in hospice at the time of their deaths--and hospice, like the proposed MediCaring program, demands tradeoffs. It's taken 30 years to reach the current level of participation: in 1987, 4 years after the hospice benefit was first introduced, only 7 percent of older patients were enrolled in hospice at the time of their death. But still today, many people only enter hospice in the very last days of life, too late to derive maximal benefit. Nonetheless, Americans gradually came to understand that their needs changed as they entered life's last phase and that hospice provides more of what they need and less of what they don't than conventional Medicare. We need to help older people and their families reach the same conclusions about MediCaring.

Palliative Care Comes of Age

Last week, the New England Journal of Medicine published a short review article entitled “Palliative Care for the Seriously Ill.” Eleven years ago, the NEJM also published a review of “Palliative Care,” at that time putting it in the section of the journal called “Clinical Practice.” What has changed over the decade? What has remained the same?

Comparing and contrasting the two short articles, both of which emanate from the Mount Sinai School of Medicine, reveals some interesting changes. Perhaps the first change worth noting is that the Mount Sinai School of Medicine is now the Icahn School of Medicine at Mount Sinai. That a venerable school of medicine should now be named after a business magnate known as a ruthless corporate raider instead of after the alleged birthplace of the Ten Commandments says worlds about developments in the field of medicine. Palliative care itself has been affected by the widespread corporatization of medicine, with 2/3 of all hospice providers for-profit in 2013, compared to 5% in 1990. But the article rightly concentrates on describing the field of palliative care rather than one specific program, hospice care. The authors carefully distinguish between the population who stand to benefit from palliative care--those with serious illness--and those who may benefit from hospice care--those who are in the last months of life.

What stood out reading the new and older articles side by side is that in 2004, Morrison and Meier were at pains to explain the rationale for the very existence of palliative care. They emphasized the under-treatment of symptoms such as pain, delirium, and nausea in very sick patients. They discussed the fixation of American medicine on cure, even when cure was not possible, and the false dichotomy between cure and comfort. In 2015, Morrison, writing this time with Kelley, a young colleague (also a marker of change as a new generation of physicians rises to prominence in palliative medicine), do not feel the same need to justify palliative care. To the extent that they do feel obligated to explain why palliative care should exist, they provide data, itself a welcome development over the past decade, offering a graph showing the prevalence of ten specific symptoms in advanced illness, broken down by disease category (cancer, congestive heart failure, chronic obstructive pulmonary disease, advanced kidney disease, dementia, and AIDS).

Another area discussed in some detail in the new article but scarcely mentioned in 2004 is the various delivery models for palliative care. Ten years ago, palliative care consisted principally of in-hospital consultation and of home-based hospice. Today, it is both of those but it is also increasingly provided in the outpatient arena and in the nursing home.

The discipline of palliative care is much the same today as it was a decade ago: it is based on the three-legged stool of communication (which includes establishing the goals of care and planning for the future), symptom management (which addresses symptoms from pain to constipation), and psychosocial and spiritual support (which is targeted to families along with patients). But it has grown into a mature field with a small but robust and burgeoning research base. It is an interdisciplinary form of care that offers an “added layer of support” to conventional care (words chosen from market research done by the Center for the Advancement of Palliative Care); it is for the “seriously ill,” (as the authors quietly insert into the title of their article), not just for the dying; and it is for people of “any age,” not just for older people (who seemed to be the primary target in the earlier article that emphasized the graying of the population).

The field has made remarkable strides. I have just one nagging concern. In its eagerness to view palliative care as a supplement to rather than a replacement for conventional care, the field has a tendency to ignore the important truth that when palliative care clinicians review the prognosis and the options with patients, the conclusion may well be that less is more. And in its excitement over the surprising finding in one important study that patients with palliative care may actually live longer than those receiving usual cancer care, the field glosses over the importance of making trade-offs between life-prolongation, comfort, and maximizing function. Sometimes, to be sure, there are no life-prolonging options: the aggressive chemotherapy that oncologists offer and patients seize upon simply won't work and may paradoxically shorten life. But sometimes--and I would argue more often--there is a potentially life-prolonging option. That course of treatment, however, is typically very risky. Its likelihood of succeeding may be extremely small and its probability of causing misery extremely high. What palliative care does in this scenario is to lay out the alternatives and figure out which makes most sense for a patient and family in light of their goals of care. What palliative care does not do, however, is deny the importance of making trade-offs. 

Perhaps when the New England Journal publishes a review article about palliative care in another ten years, the authors will not feel the need to view the field as an add-on, but rather as the more realistic and comprehensive approach to the management of advanced illness. The truth is that most of the diseases that kill people today--heart disease, many cancers, and dementia, for example--are chronic diseases. They cannot be cured. All treatment for these conditions is inherently palliative. Cardiologists, oncologists, and neurologists all practice palliative care all the time; they just don't do as good a job as they might. Here's to Palliative Care 3.0!

The Benefit of Medicare and the Medicare Benefit

When Congress first introduced a hospice benefit into the Medicare program in 1982, it did so out of the recognition that patients who are very near the end of life need special treatment. Conventional medical care doesn’t work well for them; another type of care, focused intensively on symptom management and delivered principally in the home, tends to be far more beneficial. The problem—aside from the psychological issue of both patients' and doctors’ reluctance to acknowledge the imminence of the end of life—was how to pay for this kind of labor-intensive care. The legislation, introduced on a trial basis at first and then on a permanent basis in 1986, instituted an approach to payment that offered patients a trade: either Medicare paid for what was assumed to be life-prolonging care (for example, hospitalization and chemotherapy) or Medicare paid for what was assumed to be exclusively comfort-oriented care (for example, home nursing and medications such as morphine). The nice clean boundaries between life-prolongation and comfort-maximization turned out to be rather fuzzy: sometimes palliative care prolongs life more than does aggressive, high-tech medicine and sometimes the treatments that are thought of as life-prolonging, such as radiation therapy, are the best way to maximize comfort. But leaving aside the issue of whether we should decide what counts as life-prolonging on a case-by-case basis rather than by category (ie viewing all chemotherapy as life-prolonging), the fundamental principle remains—health insurance benefit packages necessarily involve both inclusions and exclusions.

The trouble with the structure of Medicare is that it provides well for the extremes, for people who are very vigorous or who are imminently dying, but it doesn’t provide well for those who are in between. To be fair, Medicare has evolved over the past ten years and pays far more attention than previously to people with chronic diseases and increasingly greater attention to people with multiple chronic diseases. It has introduced disease management programs, typically involving nurses who help patients adjust their own medications for diseases such as diabetes or heart failure. But patients who are frail or who have moderate to severe dementia benefit from many of the same intensive home care services as dying patients. They also often want to avail themselves of many of the same kinds of high-tech care as robust older patients. Medicare rightly balks at the prospect of paying for everything—it’s just too expensive. So what people with frailty and advancing dementia need is their own special Medicare benefit that is midway between conventional Medicare and the hospice benefit. They need what I call intermediate care; the way to pay for intermediate care is through a new benefit tier.

The comprehensive package—sandwiched between the intensive package and the palliative package—would be modeled on the Program of All-Inclusive Care for Elders (PACE), a very successful program in which only a very small number of patients have enrolled, providing integrated, multidisciplinary care outside the hospital or nursing home. Unlike PACE, it would not focus on the adult day health center (many older people don’t want to go to “daycare,” where lots of the PACE services are delivered) and it would not require that patients change physicians (an impediment to joining PACE as currently conceived). In exchange for the enhanced home services, the intermediate care benefit package would exclude a variety of high tech, high expense medical care that is seldom useful for frail or very demented patients. It would not cover ICU care. It would not cover surgery for devices such as the Left Ventricular Assist Device, a kind of partial artificial heart. It would exclude dialysis, which doesn’t prolong life in frail elders. What the intermediate care benefit would provide is a coordinated, integrated approach to care, with plans in place for what to do in the most likely scenarios for a given patient—what to do when the patient with advanced heart failure develops pulmonary edema, when the patient with advanced emphysema develops pneumonia, or when the patient with moderately severe dementia develops a fever. These plans would involve intensive home treatment or transfer to a skilled nursing facility, but not the current approach of emergency room—hospital—rehab—home. It would look similar to another variant of Medicare than has been proposed, called MediCaring. 

Medicare is a great program but it needs substantial modification to truly benefit all those it is intended to serve: the robust, the frail and the demented, and the dying. Just as we don’t expect one antibiotic to treat all infections or a single chemotherapeutic agent to treat all types of cancer, we cannot expect one benefit package to make sense for all older patients. Offering three distinct packages, an intensive package, a comprehensive package, and a palliative package, as I argued in my book The Denial of Aging, would go a long way to making Medicare work for everyone.