Sick To Death > Chapter 2 > Summary of Ideas to Shape Reform

Summary of Ideas to Shape Reform

We are all still learning how to respond to our new way of living at the end of life. The care system shaped in the decades after World War II aimed to provide surgeries and other dramatic interventions to most of the population, and it largely succeeds. Indeed, its success is part of what led to the burgeoning numbers of patients and families who face serious chronic disease in old age.

Our very language of care no longer fits the population and its needs. Policy makers ordinarily operate without the data they need to establish goals and priorities in this area or even to assess the effects of changes. Federal health agencies working amid competing priorities have little time for innovations in end-of-life care; indeed, our leaders of medicine and public health do not yet fully realize that health care concentrates more and more on supporting people with fatal chronic illness. Many patients and families still do not know what to ask of their health-care providers.

Even those seeking reform in this area are split among advocacy groups on aging, disability, hospice, nursing homes, rehabilitation, and individual diseases. Most services in the current health-care system are not tailored to meet the needs of individuals with serious, eventually fatal chronic illness. The gaps in our care system place these vulnerable patients at risk for unrelieved pain, indignity, and powerlessness and also burden and impoverish their families. Yet few organizations take up the cause.

Some better ideas have been emerging to remedy these deficiencies, including some important revisions of conventional wisdom. The changes in clinical, institutional, and financing policy this chapter has presented could be the foundations for a reliable care system that serves people living with serious chronic disease in the last phase of life.

We will see data differently if we bear in mind that people get to live bounded lives, not to live on indefinitely. Success in prevention, public health, and health care have led to putting most of the burden of illness on the last few years of life, which is a laudable accomplishment that creates new challenges.
The claim that people generally move from wanting to live and receive medical care to accepting death and wanting hospice care is a widespread but misleading social construction of reality. The more accurate and useful claim is that most patients facing serious chronic illnesses have decreasing opportunities to delay progression of their illnesses and increasing needs to live well despite those illnesses.
Since most people in this last phase of life have multiple health problems, diagnoses and cause of death are more complex but less relevant than when people generally had one serious problem at a time.
Since most people will need multiple settings for care (home, hospital, nursing home), integration and linkages among these settings are essential to quality care. Measuring quality requires focusing on a population in need (like those living with advanced heart failure) rather than only a setting of care (such as nursing homes).
Services tailored to the end of life can target people who are seriously ill or disabled, with a generally worsening condition (or conditions) that will cause death. This last part of most lives requires long-term services, complex balancing of priorities, and increasing support for personal care.
Clinicians can identify the target population with the "no surprise" question: would it be no surprise if this sick person died within the coming year (or the coming few months)? Asking for a reliable prognosis of less than six months, as the Medicare hospice benefit requires, identifies only a small proportion of the population and generally does so long after these individuals have started to suffer from eventually fatal chronic illnesses.
Trajectories of disease or disability usefully divide the population with eventually fatal chronic illness into three groups:
- Short period of evident decline, typical of cancers
- Long-term limitations with intermittent serious episodes (and sudden dying), typical of organ system failures
- Prolonged dwindling, typical of dementia, disabling strokes, and frailty of old age
Advance care planning is useful not only for allowing care decisions to proceed when the patient is incompetent but also for avoiding specific and otherwise automatic responses of the health-care system to illness and complications, and for putting in place the concrete services that ensure implementation of preferred options.
The number of persons living with eventually fatal chronic illnesses will increase dramatically over the coming quarter century. The paucity of family and paid caregivers is already evident and likely to worsen. The obvious crisis of caregiving generates substantial challenges and opportunities for creative steps toward reliable and sustainable care arrangements.