According to Joanne Lynn, the author of Sick to Death and Not Going to Take It Anymore: Reforming Health Care for the Last Years of Life, those of us spared an accidental or traumatic death will experience one of three trajectories of health and decline toward the end of our lives. People experiencing the first trajectory will remain active and comfortable until only a few weeks prior to death, when a severely debilitating decline will occur. Those experiencing the second will live for years with relatively minor debilitations associated with chronic illness, but these will be exacerbated at intervals over time, and death will occur unexpectedly. Those experiencing the third trajectory—nearly half of all Americans—will dwindle away slowly, becoming increasingly incapacitated from frailty and/or dementia over years or even decades.

The first trajectory, a short period of decline, is typical of many cancer patients. They are able to maintain comfortable and functional lives for years, until the illness becomes overwhelming, at which time they typically decline rapidly and die within weeks. During their decline, about half of such patients enroll in hospice through Medicare. But many do not, or they fail to do so in time to receive the full benefits of hospice care. Moreover, prostate and some other cancers follow a different trajectory. Thus the needs of many cancer patients are not fully met through the existing U.S. healthcare system.

The second trajectory, often associated with chronic illness, usually involves organ system failure such as heart, pulmonary, or kidney disease. These patients face an uncertain prognosis, and most die suddenly from an unpredictable complication of their disease. Most are stable and comfortable one week or a few days before dying. Effective disease management reduces exacerbations and improves survival, but even with their doctors' guidance, some patients are unable to manage their disease. Some forget instructions about medications or diet, others can't afford to buy medications or may not be able to recognize or treat early signs of exacerbation. A combination of advance care planning, routine and urgent home care services, and deathbed care at home can reduce exacerbations, cut costs, and be more satisfactory to patient and family. Again, our existing health system does not provide all of these services to any given patient who needs them. Moreover, accessing these services involves overcoming significant hurdles and bureaucratic challenges. It requires energy, effort, and resources that sick or dying people typically do not have. For most patients in the chronic illness trajectory, the existing healthcare system does not provide accessible care. The system itself is not compassionate or user friendly to patients in need.

The third trajectory involves those who die late in life with generalized frailty of all body systems and/or neurological failure. This includes a huge number of individuals. Alzheimer's disease, for example, is predicted to affect 14 million people in 2050. These people will lose the ability to care for themselves long before death. Their health needs differ from those in the other trajectories, but until they become homebound, they are ineligible for Medicare benefits or homecare. They tend to have uncertain prognoses early on, and are therefore also ineligible for hospice. As they age, they become more dependent on assistance with everyday activities like dressing and even eating. Whether at home or institutionalized, they require a greater variety of support services and, as time passes, increasingly frequent provision of services that may ultimately be needed round the clock.

Patients in the first two trajectories need mostly prevention and acute care services, whereas those with frailty or dementia tend to have serious chronic conditions that will slowly worsen and cause death. Not surprisingly, people want to live as well as possible for as long as possible. But their illnesses create multiple and complex goals for each patient that evolve over time. Lynn describes these trajectories in depth, as well as their implications for patients, families, caregivers, and the healthcare system. Reform strategies based on these three trajectories, she argues, will be more practical and cost effective than approaches centered on diagnosis or place of treatment. Lynn also examines what the present health system does provide for these patients and outlines specific needs that might be cost-effectively addressed through system reform.

Everything that matters in the life left to a dying patient hinges on the care arrangements for effective support services. Caregiving nearly always involves a family member, and support services for both patient and caregiver are necessary. Lynn describes the realities of caregiving and both the financial and emotional hardships on caregivers and families. Illustrating the different types of care needed by patients in each trajectory, Lynn shows the failure of our system to provide effectively or efficiently. The existing system makes it difficult for patients to access homecare or caregiver support that would help patients remain more independent for longer. Lynn explains that “[n]o one can count on good care. Some combination of pain, disability, financial ruin, family stress, and powerlessness awaits most of us.” But she states repeatedly that we can do better, and she offers constructive suggestions.

For more than 20 years, Joanne Lynn has provided medical care to people at the end of life. Her previous books, advocacy efforts, and policy-related activities focus on improving care for the dying and alleviating the hardships on their families and caregivers. Lynn's clinical experience guides her suggestions, and her professional accomplishments attest to her ability to motivate others. Her book is a compelling, quick read about a topic that impacts directly on all of us. Each of us who has not already cared for or lost a loved one will do so eventually. Moreover, we ourselves are likely to live through an eventually fatal illness causing progressive disability in the short or long term.

Lynn's ideas for shaping reform include addressing the issue of language. We do not have adequate language to express the types of care people need when facing eventually fatal chronic illnesses. Policymakers and the public use misleading words and ideas to describe healthcare delivery and patient needs. This has led to disregard for death as the outcome of serious or chronic illness and denial of various types of care that would benefit patients immensely before they die. Suitable language is critical to designing reforms that would improve patient satisfaction because the subjective nature of how we decline and die shapes how we judge the merits of different treatment strategies and influences which ones our healthcare system may offer. Our healthcare system should make it almost automatic to get services that would enable us to live well through the period of serious disability before death, Lynn argues. And who would disagree?

Lynn also addresses economic concerns, citing savings to hospitals that have implemented palliative care services. Regardless of the type or size of palliative service offered, institutional and individual savings arise through decreased length of stay and decreased use of redundant, unnecessary, or ineffective tests and pharmaceuticals. Lynn is a proponent of the case management approach because of the efficiency and continuity of care provided and because it can be cost effective. Although institutional costs sometimes increase with case managers, subsequent expenditures on nursing homes drop, resulting in a net savings.

Much has been documented about the prevalence and undertreatment of pain among chronically and terminally ill patients and about barriers to pain relief. Strides have been made in improving the management of pain through training and institutional policy. But untreated pain, anxiety, and discomfort associated with dying continue to plague many in the United States and elsewhere. Lynn's ideas to motivate and guide reform are new, and pertain directly to the U.S. system. In defining end of life trajectories as she has, however, these ideas also have relevance elsewhere. Her book has potential to motivate individuals and give them tools with which to seek improvement within their own professional capacities and settings.

Written in simple language, the book will be of interest to patients, providers, policymakers, bioethicists, and others. In a positive and exciting way, it addresses a topic many would otherwise avoid. It shows that our health system can be redesigned to cost effectively ease the hardships of dying and is likely to motivate readers to consider what they can do to bring about change. Chapters center on facts about the last phase of life, ideas bearing on reform, opportunities and challenges for reform, and building a system to provide the care we would like for ourselves before we die, without leaving us or our families bankrupt.

Most chapters end with contributed anecdotes or perspectives relevant to the issues presented therein. Combined, they provide scientific and economic facts about dying and ideas about the kinds of care that would make dying easier on patients, families, caregivers, and physicians. Individually or collectively, knowing what lies ahead will help us plan to make the care we receive while dying more effective, compassionate, and accessible. Even readers uninterested in end-of-life care, health systems, or health policy will find this book enriching and well worth reading.