Should we Bury “The Good Death?”

This is the second joint editorial by the editors of Journal of the American Geriatrics Society and Age and Ageing.¹ The intent is to discuss important policy or clinical issues from our respective viewpoints. The companion to this editorial, published in Age and Ageing, was authored by Kristian Pollock and Jane Seymour and is titled, “Reappraising the “Good Death” for Populations in the Age of Ageing.”² Our papers are united around a common message: a critique of the notion of “the good death,” greater need for appreciation of diverse perspectives, and failure of our current systems to meet the needs of older frail people nearing the end of life. The goal is to provide two complementary perspectives on a topic of interest to our readership. Thus, each paper provides a unique window for viewing these issues. The JAGS paper is grounded in the perspectives of our experiences as academic clinicians, while the Age & Ageing paper begins with wider lens of epidemiology, history, and culture. In preparing these editorials, we have engaged in three cross Atlantic conversations between authors, and one in-person meeting at the 2017 meeting of the International Association of Gerontology and Geriatrics meeting in San Francisco, California.

What is “the good death?” How do we define it? How is the notion of “the good death” useful, and what are the unintended negative consequences for practice, policy, and research? These are the questions we will unpack in this editorial. We cannot, in this limited space, present a full review of this topic.³ Rather, we hope to share our perspectives on this issue, informed by our clinical experiences in geriatrics and palliative care, and enriched by discussions with our colleagues across the Atlantic.

Let us begin by grounding this editorial in our current experiences as clinical faculty. We note that many geriatric and palliative medicine fellows are drawn to this field by the specific goals of promoting “good deaths” for their patients and the broader aspiration of changing the healthcare system to enable good deaths for all. Most seem to espouse certain beliefs about what constitutes a good death and a bad death. Typically, a good death is constructed as death that occurs at home, with the support of hospice, and surrounded by family. A death in the Intensive Care Unit is labeled as a “bad death.” In fact, ineffective cardiopulmonary resuscitation (euphemistically described by trainees as “flogging the patient”) has become a medical ritual that precedes what most doctors would describe as a “bad death.” These notions are deeply embedded in medical training, influenced by hospital culture, and part of the “hidden curriculum” that American medical students and residents learn on the hospital wards.^4,5

Place of death has, if anything, been placed on a higher pedestal in the UK than the US.⁶ Place of death is a key metric used in the UK to evaluate the quality of hospitals and health systems. The ‘good death’ has, for many in the UK, become synonymous with matching the patients preferred place of death with their actual location of death. In contrast to the US, where a good death is assumed to occur in the home, the UK notion focuses on the of alignment between the patient’s preferences, as far as location of death, and clinical decision making and practice.

A 2015 international country-by-country ranking of “Quality of Death” placed the UK in first place and the US ninth⁷. The UK comes out ahead of the US in part due to the fact that palliative care in the UK has a longer history and growth trajectory, and is well integrated into the fabric of the UK national health care system. One challenge in the US is the small pool of the palliative physician workforce. This is due to a variety of factors including the fact that the field is relatively new in the US, and the salaries are not comparable to procedure oriented specialists, or even the level of hospitalists. This international ranking, notably, did not factor place of death in the rankings. In 2015, 30% of US decedents died in the home and 36% in the hospital⁸, compared to 23% at home and 47% in the hospital in England (Figure 1).⁹

Figure 1. Place of Death in the U.S. and England, 2015.

Data for deaths in the U.S. came from the Centers for Disease Control and Prevention, National Center for Health Statistics, 1/15–12/15. Data for deaths in England came from the Office of National Statistics 4/2015–3/2016.

Let us continue by placing the concept of “the good death” within contemporary social context in the United States. Americans prioritize personal choice and individual liberty in our culture, our politics, and our daily lives. Recent efforts to extend and expand control over how we die are epitomized in the activism around legalization of physician assisted death. While these efforts may increase social awareness of and discussion about death, they mask the stark daily reality of how individual autonomy around the manner and timing of our deaths are routinely constrained by institutional structures and governmental policies. Poor patients, those who reside in rural areas, and people of color have less access to pain medications, hospice, and palliative care services than wealthy patients, those in urban areas, and Whites. Many new treatment modalities, including the much-publicized precision medicine treatments for chronic and serious illnesses, are priced far out of reach for many Americans and covered in a limited fashion by third party payers, effectively rationing choice to those who can afford to pay.¹⁰ For those who are dying, their specific terminal illness diagnosis has an impact on if and when they are eligible for hospice care. Most notably, progressive frailty, although common in older adults at the end of life, cannot be listed as the principal hospice diagnosis for hospice eligibility, effective October 1, 2014.¹¹

The notion of the good death really falls apart at the individual level. If a good death is one in which the manner and circumstances of death match the patient’s goals, then mismatches are unavoidable. For example, a patient with early Alzheimer’s Disease may voice a strong desire to die at home but lack the requisite social and fiscal resources to be able to do this. Or a patient with metastatic lung cancer may express a desire to “have everything done” including indefinite life support. Steinhauser’s landmark national survey of factors important to patients, caregivers, and clinicians near the end of life found tremendous variation between these three groups, particularly for how they ranked the importance of knowing the timing of death, controlling the timing of death, and dying at home.¹²

What does this mean for the practicing clinician in a broader context? We argue the notion of a monolithic “good death” should be abandoned. It does not exist. A good death is individual, and is highly influenced by social relationships, cultural, religious and historical factors. On the one hand, imposing our values about what constitutes a “good” or “bad” death unfairly constrains the choices of individuals and family caregivers. On the other hand, burying the notion of the good does not mean that clinicians’ moral responsibility and agency should be abandoned in the interest of unfettered patient choice. As the physician-bioethicist Robert Truog has noted, “individuals in our society have been largely shielded from the process of dying…And yet we harbour an assumption that each of us should be able to plan for this moment, and should have authority to script how it occurs, even among those who have almost no knowledge about what might be involved.”¹³ Clinicians have an ethical duty to guide when they perceive that a patient is making a choice about their end-of-life care that (often unknowingly) conflicts with their values and life goals. In an increasingly diverse society, we have a responsibility to respect diversity in goals of care, perspectives, and preferences. This requires clinicians to reflect on their own assumptions and biases, and being open to supporting patients’ in preferences and choices that we would never make for ourselves. Most importantly, it requires a careful review of the available care options within the context of the patient’s choices and honestly and compassionately discussing these issues and helping them make realistic plans.

We are at the inflexion point of a rapidly aging society, not only nationally, but globally. Advances in modern medicine have succeeded in not only postponing death but also in slowing down the dying process. Most older adults today are going to bear the burden of disability, dementia, and multiple chronic illnesses for months to years before succumbing to them. In fact, death itself has arguably shifted from being an event at a single point in time to becoming a process that occurs over years to decades. It is high time we shift from the notion of a “good death” as a specific event for an individual person, to a larger vision of a society that meets the diverse priorities of older adults not at the moment of death, but during their last years and decades of life. Our current system constrains choice by providing near unlimited access to and payment for high intensity life-prolonging treatment, while providing scant resources for living in the community, the top priority for most older adults. We need a fundamental reallocation of the massive resources currently dedicated to implementing burdensome high-intensity treatment to infrastructure and services that support the ability of older adults to live in their communities for as long as possible, including home-based primary and palliative care, support for caregivers, and home health aides.¹⁴