Sick To Death > Chapter 1 > Shortcomings in Current Care

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Shortcomings in Current Care

Surgery, pacemakers, and intravenous antibiotics are readily available in the United States to most patients who need them while living with fatal chronic illness. Those in need generally have adequate insurance because they are old enough for Medicare, have private insurance through employment, or are poor enough for Medicaid. But few patients facing old age and eventually fatal chronic illnesses can count on some other essential elements of good care: for example, relief of symptoms, continuity of services and providers, a safe and functional environment, and help with planning for the future (Institute of Medicine 1997; Wenger et al. 2003).

The health-care system regularly fails to provide sufficient prevention and relief of pain. Among people living in nursing homes, one-fourth of those with pain every day received no pain medication at all, and another half had orders only for trivial kinds and amounts of medication (Bernabei et al. 1998). Another study showed that, among out-patients with pain from metastatic cancer, 42 percent did not receive adequate pain medication (Cleeland et al. 1994). Medications have proven effective in treating and managing pain, making it unnecessary - and even outrageous - for anyone to suffer from overwhelming pain or discomfort (National Cancer Policy Board 2001; Doyle, Hanks, and MacDonald 1998).

If a person's heart stops, a set of procedures called cardiopulmonary resuscitation (CPR) can sometimes get it started and the person's life can go on. A person with a sudden heart attack or injury ordinarily wants CPR tried, even though surviving it will usually mean living through a period of critical illness. However, a person with serious illness, disability, and short life expectancy may well prefer to forego attempts at CPR, accepting death when the heart stops rather than endure more travail for a small chance of a short, and even more disabled, survival. Good practice requires giving the patient (or a surrogate if the patient is too sick or otherwise unable to make decisions) the opportunity to consider the merits in advance and to decide whether CPR should be attempted. This seems obvious, yet a study of ten thousand patients hospitalized for at least a week with very advanced stages of serious illnesses found that doctors addressed this issue in less than half the cases (SUPPORT Principal Investigators 1995).

What each of us wants when close to the end of life is confidence that care will be there when we need it, that the people providing care will be competent and kind, and that we will have comfort and respect, right up to the end. But physicians now cannot promise patients with lung cancer or emphysema and facing a long course to death that every health-care provider in the area - every emergency room, nursing home, home-care agency, and hospice - is reliably competent to provide relief of pain and shortness of breath (National Cancer Policy Board 2001; Lynn and Goldstein 2003). Americans who face serious, eventually fatal, chronic illness must navigate a care system - really, a patchwork of uncoordinated services - that does not meet their needs and can even cause them harm (Institute of Medicine 2001). Furthermore, the costs of that care have increased substantially; for example, more than half of personal bankruptcy cases arise from health-care costs (Jacoby, Sullivan, and Warren 2001).