Mark D. White
The latest issue of Health Economics, Policy and Law (7/4, October 2012) is a special issue on th topic of end-of-life care, stemming from a workshop held by the London School of Economics/Columbia Health Policy Group in December 2010:
Introduction (Adam Oliver)
The conventionally antithetical stereotypes of the United Kingdom and United States health care systems needs to be modified in the case of the elderly. Relative to the rest of the population, the over-65s in the United States are more satisfied with their medical care than their UK counterparts. There is also much common ground: shared worries about the quality of elderly care and similar attitudes towards assisted death. Comparison is further complicated by within country variations: comparative studies should take account of the fact that even seemingly polar models may have pools of similarity.
Evidence and values: paying for end-of-life drugs in the British NHS (Kalipso Chalkidou)
In January 2009, Britain's National Institute for Health and Clinical Excellence (NICE), following a very public debate triggered by its decision, six months earlier, provisionally to rule against the adoption by the National Health Service (NHS) of an expensive drug for advanced renal cancer, introduced a new policy for evaluating pharmaceuticals for patients nearing the end of their lives. NICE's so-called end-of-life (EOL) guidance for its Committees effectively advises them to deviate from the Institute's threshold range and to value the lives of (mostly) dying cancer patients more than the lives of those suffering from other, potentially curable, chronic or acute conditions. This article tells the story of the EOL guidance. Through looking at specific EOL decisions between 2009 and 2011 and the reactions by stakeholders to these decisions and the policy itself, it discusses the triggers for NICE's EOL guidance, the challenges NICE faces in implementing it and the policy's putative implications for the future role of NICE in the NHS, especially in the context of value-based reforms in the pricing and evaluation of pharmaceuticals, currently under consideration.
Valuing end-of-life care in the United States: the case of new cancer drugs (Corinna Sorenson)
New cancer therapies offer the hope of improved diagnosis to patients with life-threatening disease. Over the past 5–10 years, a number of specialty drugs have entered clinical practice to provide better systemic therapy for advanced cancers that respond to few therapeutic alternatives. To date, however, such advances have been only modestly effective in extending life and come with a high price tag, raising questions about their value for money, patient access and implications for health care costs. This article explores some of the key issues present in valuing end-of-life care in the United States in the case of advanced cancer drugs, from the difficult trade-offs between their limited health benefits and high costs to the technical, political and social challenges in assessing their value and applying such evidence to inform policy and practice. A number of initial steps are discussed that could be pursued to improve the value of advanced cancer care.
Health technology assessment processes aim to provide evidence on the effectiveness and cost-effectiveness of different elements of health care to assist setting priorities. There is a risk that services that are difficult to evaluate, and for which there is limited evidence on cost-effectiveness, may lose out in the competition for resources to those with better evidence. It is argued here that end-of-life care provides particular challenges for evaluation. Outcomes are difficult to measure, can take place over short time scales, and services can be difficult to characterise as they are tailored to the specific needs of individuals. Tools commonly used to measure health care outcomes do not appear to discriminate well in the end-of-life care context. It is argued that the assumption that units of time of different quality of life can simply be added to assess the overall experience at the end of life may not apply, and that alternative perspectives, such as the Peak and End Rule, might offer useful perspectives.
The End of Life Care Strategy (Department of Health, 2008) radically raised the profile of end-of-life care in England, signalling the need for development in planning and delivery, to ensure that individuals are able to exercise genuine choice in how and where they are cared for and die. Research has indicated that there have been continuing difficulties in access to high-quality and appropriate support at the end of life, particularly for patients with a diagnosis other than cancer. This article uses research findings from three case studies of end-of-life care delivery in England to highlight some of the barriers that continue to exist, and understand these challenges in more depth. Access to high-quality and appropriate end-of-life care has been a challenge for all patients nearing the end of life. However, the findings from this research indicate that there are several interrelated reasons why access to end-of-life care services can be more difficult for patients with a non-cancer diagnosis. These issues relate to differences in disease trajectories and subsequent care planning, which are further entrenched by existing funding arrangements.
US health care: the unwinnable war against death (Daniel Callahan)
For well over 40 years, the United States has struggled to improve end-of-life care. This effort, heavily focused on living wills, hospice and improved doctor–patient communications and palliative care, has been a modest success only. Both doctors and patients are often unwilling to accept the fact that death is on the way – only 25% of Americans have an advance directive. Advances in medical technology have provided more ways of keeping dying patients alive, making the line between living and dying harder to discern. The way physicians are paid promotes the use of technology not for talking with patients. Underlying these practical problems is a culture of American medicine with deep historical roots: that medical progress should be unending and is a moral imperative, that death is the greatest enemy and that cure, not care, is the primary goal. A better balance between care and cure is needed.
Stealing on insensibly: end of life politics in the United States (Lawrence D. Brown)
Because the United States often seems (and seems eager to present itself as) the home of the technological imperative and of determination to brand all challenges to it in end-of-life care as a descent into death panels, the prospects look unpromising for progress in US public policies that would expand the range of choices of medical treatments available to individuals preparing for death. Beneath this obdurate and intermittently hysterical surface, however, the diffusion across US states and communities of living wills, advanced directives, palliative care, hospice services and debates about assisted suicide is gradually strengthening not so much ‘personal autonomy’ as the authority, cultural and formal, of individuals and their loved ones not merely to shape but to lead the inevitably ‘social’ conversations on which decisions about care at the end of life depend. In short, the nation appears to be (in terms taken from John Donne's mediations on death) ‘stealing on insensibly’ – making incremental progress toward the replacement of clinical and other types of dogma with end-of-life options that honor the preferences of the dying.
Few are satisfied with end-of-life care in the United States. For families and friends of people with dementia, end-of-life care is particularly frustrating. Providing better end-of-life care to people with dementia is urgent because the prevalence of the disease is increasing rapidly. Dementia is currently the seventh leading cause of death in the United States and fifth leading cause of death among people aged 65 years and older. By 2050, there will be around 19 million people with Alzheimer's disease. This article reviews ethical and policy challenges associated with providing end-of-life care for people with dementia in the United States. I explain how disagreements about the meaning of futility lead to poor care for people with dementia. Most people agree that we should not provide care that is futile, but there is little agreement about how futility should be defined. US policies and politics clearly tip the balance in the direction of treatment, even in the face of strong evidence that such care does more harm than good. Although we may never reach a consensus, it is important to address these questions and think about how to develop policies that respect the different values.
Dementia, death and advance directives (Jonathan Wolff)
This article considers the ethics of advance directives, especially in relation to conditions such as dementia. For some choices, such as over whether one's life should end at home or in a hospice, advance directives can be very enlightened and helpful. For others, such as those to end the life of an autonomous subject, against their will, have no moral appeal and would rightly be ignored. In a wide range of intermediate cases, given our typical lack of insight into how changes in our health condition will affect us in other ways, we should be very cautious indeed in promoting the use of advance directives in end-of-life decisions, at least where a reasonable quality of life remains. There may be some reasons for giving priority to the earlier autonomous self over a later, contented but non-autonomous self, but these reasons seem far from compelling.