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
- 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
- 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.