Blog No. 48. Dying in America: Yes, There Is a Better Way

“Most people envision their own death as a peaceful and an ideally rapid transition. But with the exception of accidents or trauma or of a few illnesses that almost invariably result in death weeks or months after diagnosis, death comes at the end of a chronic illness or the frailty accompanying old age. Few people really have the opportunity to know when their death will occur.”

That unsurprising but sobering observation was included in the Preface to a report issued on September 14 by the Institute of Medicine (IOM), “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.” The IOM is an affiliate of the National Academy of Science and the report was prepared by a nonpartisan committee that included physicians, nurses, insurers, lawyers, and gerontologists. The goal of the report was to offer a road map to providing care at the end of life that is “person-centered, family-oriented, and evidence-based.” To that end, the report proposed sweeping reforms to end of life care, including the nature of care provided, how the government and insurers compensate for medical service, and the focus of medical education. It is a lengthy report, some 507 pages, that reflects the complexity of the issues and the care that went in to the study of them by the IOM committee. It is a document that deserves the attention of the medical community, patients and their families, political leaders, and the public at large.

Unfortunately, the problems of end-of-life care became a divisive political issue in 2009 when the Affordable Care Act included a provision authorizing Medicare to compensate doctors for counseling patients concerning advance directives (“living wills”) and options for end-of-life care. In a stunning piece of demagoguery, Sarah Palin and some others on the right attacked the provision as somehow involving “death panels” comprised of bureaucrats who would determine when treatment should be withheld or, as sometimes crudely put, when doctors would “pull the plug on Grandma.” Even John Boehner reportedly asserted that, “This provision may start us down a treacherous path toward government-encouraged euthanasia if enacted into law.” Despite the fact that the provision did not remotely provide or contemplate anything of the sort, the backlash was sufficient to have the provision withdrawn. It was, to say the least not a moment to the credit of the Republican Party.

Since 2009, end-of life-care has not been a major political issue and the Centers for Medicare and Medicaid Services (CMS) is currently considering a detailed proposal by the American Medical Association to include billing codes for end-of-life conversations. According to The New York Times, this proposal has drawn the support of some Republican politicians, and no significant opposition has appeared thus far. We believe that, in principal, the proposal is eminently sensible. As documented in the IOM report, the lack of communication between doctors and patients, and between patients and their family members, often results in patients receiving treatments that provide little or no medical benefit and actually conflict with the patient’s desires and values. Far from putting care determinations in the hands of the government, serious consultations between doctors and patients on the course of end-of-life care will empower patients to make informed decisions about their care. It could hardly be more consistent with conservative values that stress individual responsibility.

What do end-of-life conversations consist of? In simplest terms, they advise the patient when there is little or no prospect that further treatments will be effective in significantly prolonging his or her life and, in that context, seek to determine the patient’s personal goals. How does the patient prioritize quality of life with length of life? It will advise the patient of the availability of palliative care and the possible benefits from enrollment in a hospice program.

To clarify terms, palliative care is treatment that is not curative but relieves symptoms, pain, and stress in cases of serious illness. Many may assume that palliative care is something that would be provided as a matter of course by their attending physician, but that is true only up to a point. In cases of serious illness, palliative care may require a team of specialists trained in that discipline. Palliative care is provided under hospice programs, but unlike hospice, it is not limited to end-of-life situations and may be called for at any age and any stage of serious illness.

Hospice care is fully reimbursable by Medicare for patients with a terminal prognosis whose physician certifies that that their normal life expectancy is less than six months. Hospice care may be provided in a hospital or nursing home but is generally administered in the patient’s own home. The distinctive features of such care include not only medical treatment but also the patient’s emotional, spiritual and social needs. Compelling vignettes of hospice care are recounted by Dr. Atul Gawande in a recent column in The New York Times, “The Best Possible Day,” and in a 2010 article in The New Yorker “Letting Go.” The New Yorker article also included an extensive discussion of the challenges of end-of-life care from a doctor’s perspective. (Dr. Gawande has also published this month a best-selling book, Being Mortal: Medicine and What Matters in the End.)

For some patients, an impediment to enrolling in hospice has been the fact that most hospice providers have required patients to forgo all curative treatments. That, however, is not necessarily the case, as some hospices have followed an “open door” policy under which patients are permitted to continue with curative treatments. One such program has been offered for some time by HopeHealth of Cape Cod. (Disclosure: the writer served for several years on the Board of Directors of that organization when it was known as Hospice and Palliative Care of Cape Cod.) As explained on the HopeHealth website:

At Hope Hospice, we’re committed to increasing access to hospice care. We want to make it easy to receive the care you deserve. That’s why we created and follow what we call an “Open Door Philosophy”. This Philosophy means we work hard to reach out to care for everyone in our community who is eligible for hospice — regardless of the complexity or cost of their care. We believe that those who are eligible are entitled to the full range of hospice benefits. And, we want to start helping those that are eligible at the earliest possible point in their disease process.

So, we listen carefully, serving as your advocate to provide the optimal care plan for you or your loved one’s individual needs and goals. We admit eligible patients who may be receiving treatments such as chemotherapy, radiation, dialysis, blood transfusions, TPN, IV and other therapies. There is no treatment that disqualifies an eligible patient from admission to our hospice service.

Under the open door policy, the cost of curative treatments is borne not by Medicare but by the hospice. Although HopeHealth has found the policy to be financially sustainable, the burdens or risks of increased costs have prevented the policy from being widely adopted. It was, therefore, an important but not widely reported development when CMS announced last March a demonstration project under which Medicare would reimburse patients at selected hospices for the cost of curative treatments. The project sought to address the fact that only 44% of Medicare patients use hospice and many of them do so for only short periods of time that limit the benefits the program can provide. The demonstration is expected to involve 30,000 patient beneficiaries over a three-year period and we are hopeful that it will provide a foundation for making the approach generally available.

The economics of consultation are only one factor that may affect the ability of patients to understand, choose and receive the care that is most consistent with their own values and desires. One obstacle may lie in the training and instincts of physicians. Physicians by nature are dedicated to curing and to expending every effort to do so. Theresa Brown, an oncology nurse and author put it this way in a September 6 op-ed piece in The New York Times: “Many oncologists, focused on keeping patients alive for as long as possible and hoping, always, to beat the odds, find it hard to discuss what might happen if they don’t.” Dr. Gawande’s New Yorker article candidly expressed the difficulty that he and other doctors had in discussing with a patient his or her impending death. 

A solution to the dpctors’ dilemma was proposed in the IOM report, which urged reform of medical education for students and practicing physicians:

In the committee’s judgment, three deeply ingrained educational patterns obstruct further development of palliative care.

First, hospice and palliative care are generally absent from the usual curricula of medical and nursing schools. One way to ensure attention to this topic in the undergraduate curriculum, in graduate training, and among future health professionals would be to add more such content to licensure and certification examinations.

A second negative pattern is the persistence of single-profession education silos. This is problematic because palliative care embraces an interdisciplinary, team-based approach.

A third pattern, most notable among physicians, is the lack of attention to developing clinicians’ ability to talk effectively to patients about dying and teaching them to take the time to truly listen to patients’ expression of their concerns, values, and goals. Studies have established that physicians can be taught the communication skills needed to provide good end-of-life care, but few medical educators teach these skills.

In some cases, of course, patients or their families, will actively seek the continuation of treatments that will provide no realistic benefit and will prolong and intensify their suffering. A Pew Research Poll a year ago suggested that such patients would be a minority, but a sizable one:

When thinking about a more personal situation, many Americans express preferences for end-of-life medical treatment that vary depending on the exact circumstances they might face. A majority of adults say there are at least some situations in which they, personally, would want to halt medical treatment and be allowed to die. For example, 57% say they would tell their doctors to stop treatment if they had a disease with no hope of improvement and were suffering a great deal of pain. And about half (52%) say they would ask their doctors to stop treatment if they had an incurable disease and were totally dependent on someone else for their care. But about a third of adults (35%) say they would tell their doctors to do everything possible to keep them alive – even in dire circumstances, such as having a disease with no hope of improvement and experiencing a great deal of pain. In 1990, by comparison, 28% expressed this view. This modest uptick stems largely from an increase in the share of the public that expresses a preference on these questions; the share saying they would stop their treatments so they could die has remained about the same over the past 23 years.

The results of the Pew poll may be misleading in that the respondents were necessarily answering on a hypothetical basis, having experienced neither the pain of serious illness or the reality that further treatment will almost certainly be ineffective. Nevertheless, it is clear that patients in some number will hold that view even after being fully informed of their conditions and the alternatives to curative treatment. It is their prerogative and should remain so. They should, however, be disabused of thoughts that enrollment in hospice is “giving up.” As explained by HopeHealth:

Often, people hear the “hospice” word and think that it means giving up. In fact, many of our patients would tell you that it means just the opposite. Research shows that patients in hospice care are more likely to live longer than patients with comparable diagnoses who are not receiving hospice care. And because of the quality of our care, their quality of life is often much improved.

Inadequate communication and lack of information sufficient to make informed choices are not the only problems that confront patients and their caregivers. On September 25, The New York Times printed a lengthy and poignant saga of end-of-life, the essence of which was captured in its title: “Fighting to Honor a Father’s Last Wish: To Die at Home.” The article recounts the agonizing story of an elderly patient trapped in a seemingly endless round-robin of transfers between home, hospitals and nursing homes, largely dictated by a complex and often contradictory payment system. As for dying at home, one expert said, “you can’t believe the forces of the system that are arrayed against it. The way the reimbursement system works, these decisions are not made on the basis of what the individuals need. They’re based on what the institutions need.”

The IOM report faced up to this problem squarely:

At present, the U.S. health care system is ill designed to meet the needs of patients near the end of life and their families. The system is geared to providing acute care aimed at curing disease, but not at providing the comfort care most people near the end of life prefer. The financial incentives built into the programs that most often serve people with advanced serious illnesses—Medicare and Medicaid—are not well coordinated, and the result is fragmented care that increases risks to patients and creates avoidable burdens on them and their families. From a system perspective, fragmented, uncoordinated care and unwanted and unnecessary acute care services—which in the current system constitute “default care”—are extremely costly. At the same time, many of the practical, day-to-day social services that would allow people near the end of life to live in safety and comfort at home, where most prefer to be, such as caregiver training and support, meals and nutrition services, and family respite, are not easily arranged or paid for.

The IOM report saw a need for fundamental redesign of Medicare and Medicaid: “Incentives under fee-for-service Medicare result in more use of services (hospital days, intensive care, emergency care), more transitions among care settings that are a burden on patients, and late enrollment in hospice, all of which jeopardize the quality of end-of-life care and add to its costs.” The report acknowledged that reform of Medicare and Medicaid might require legislation and urged the Administration to seek it and Congress to enact it. We join in that plea. While attacks on (and defense of) the Affordable Care Act will doubtless continue, reform of Medicare and Medicaid to improve end-of-life care is a cause that deserves bipartisan support.