Correspondence

Long-Term Care at Home

N Engl J Med 1999; 341:1004-1005September 23, 1999

Article

To the Editor:

The story Levine tells in her Sounding Board piece (May 20 issue)1 is tragically familiar to any primary care physician. I sympathize with her for the loss of the man who was once her husband and is now her family care patient. Clearly, she is still grieving after nine years.

However, I am not sure her odyssey is much different from that of many family care givers, dating back to a time long before managed care and a “market-driven health care economy.” Medical technology saves even more critically ill and injured patients than before, but outcomes are still often poor, as is the case with Levine's husband. Families have always borne, and continue to bear, the primary burden of long-term care.

How can we as physicians help these families? We must encourage healthy families to discuss advance directives in frank detail before such directives are needed. We need to be honest at an early stage about likely outcomes — not just best-case scenarios — after a catastrophic accident or illness. We must support a family's choice to forgo aggressive treatment when the outcome is likely to be poor. When family members choose aggressive care, we must be advocates for them in their struggles with unreasonable payers. Finally, we must be mindful of the health care needs of care givers, such as Levine. I hope she is receiving professional help to deal with her obvious feelings of grief, loss, despair, anger, and even hopelessness for the future. My patients, especially the elderly, uniformly feel less concerned about dying than about being disabled. Levine's story demonstrates why.

Jeffrey D. Kirkpatrick, M.D.
Gilbert Health Center Urgent Care, Gilbert, AZ 85234

1 References

1
Levine C. The loneliness of the long-term care giver. N Engl J Med 1999;340:1587-1590
Full Text | Web of Science | Medline

To the Editor:

The Sounding Board article by Levine struck a deeply resonant note. I went through a similar odyssey with my husband — 12 years of total aphasia and hemiplegia after a stroke in the left hemisphere. For 10 years he was at home. For most of this time I held a job as a faculty member at a medical school.

But there was one big difference. My husband's stroke took place in the course of an automobile accident. Thanks to New Jersey's no-fault automobile-insurance law, the insurer paid for most of the medical expenses not covered by Medicare, including 24-hour nursing assistance. Princeton University's retiree health benefits paid for most of the balance.

This left me with the problem of providing good home care. The solution included an interesting group of part-timers — aides, students, an occasional licensed practical nurse, and one devoted registered nurse who trained the others and maintained the detailed medical records necessary for reimbursement. It was not easy. At one point, I had 14 people on my “payroll” awaiting reimbursement from the two carriers.

But despite my age — I was 66 years old when my husband had the stroke and 78 when he died — I survived, and I think his quality of life was as good as possible under the circumstances.

Three years into my odyssey, in 1982, the Journal published my article calling for Medicare coverage of all appropriate long-term care.1 Aside from the work of a few geriatricians,2 the silence on this subject has been deafening. The recent National Bipartisan Commission on the Future of Medicare did not even consider the issue.

Meanwhile, the population needing long-term care increases with each new acute care “miracle.” Thousands of these patients are warehoused in underfunded and professionally isolated nursing homes. Still, the costs of such care continue to grow and threaten to overwhelm Medicaid, diverting it from its basic purpose of caring for poor mothers and children. Dedicated care givers, like Levine, are subjected to the callousness of a prosperous society that turns its back on this devastating problem.

The suffering of patients needing long-term care and the “loneliness of the long-term care giver” can never be fully relieved. But the financial burden — which determines our ability to provide decent care for the patient and to offer a reasonable chance of survival for the family care giver — can and should be relieved. My experience shows that it can be done. It will not be cheap, but it is feasible. The lack of such relief is primarily a problem of public policy and political will.

Anne R. Somers
Pennswood Village, Newtown, PA 18940

2 References

1
Somers AR. Long-term care for the elderly and disabled: a new health priority. N Engl J Med 1982;307:221-226
Full Text | Web of Science | Medline

2
Cassel CK, Besdine RW, Siegel LC. Restructuring Medicare for the next century: what will beneficiaries really need? Health Aff (Millwood) 1999;18:118-131
CrossRef | Web of Science | Medline

To the Editor:

In her Sounding Board article, Levine rightly points out some of the sad consequences of the American health care system's emphasis on the treatment of acute episodic illness (or injury) and its relative neglect of chronic illness long-term care. A few numbers on costs from the national health expenditures (NHE) reports put the issue in perspective.1 In 1997, expenditures for home health care were $32.3 billion, and those for nursing homes were $82.8 billion, for a total of $115.1 billion. That is just about 10 percent of the $1.1 trillion total for national health expenditures in 1997, or approximately the amount that was spent on drugs and other medical nondurables — $108.9 billion.

However, the official NHE reports ignore the contribution worth approximately $200 billion by informal care givers, as Levine notes.2 Add to that the imputed costs of mental anguish and physical strain on informal care givers, for which there seem to be no reliable numbers. Levine offers a telling anecdote: “During the past year [the insurer] paid more for my stress-related medical problems than for my husband's medical care.” Perhaps the NHE estimates are half a trillion dollars too low?

Ted Wall
P.O. Box 5933, Boston, MA 02114

2 References

1
Levit K, Cowan C, Braden B, Stiller J, Sensenig A, Lazenby H. National health expenditures in 1997: more slow growth. Health Aff (Millwood) 1998;17:99-110
CrossRef | Web of Science | Medline

2
Arno PS, Levine C, Memmott MM. The economic value of informal caregiving. Health Aff (Millwood) 1999;18:182-188
CrossRef | Web of Science | Medline

Author/Editor Response

Ms. Levine replies:

To the Editor: After reading these and dozens of other intense, personal responses to my essay, this long-term care giver does not feel quite so lonely. Although I agree with some of Dr. Kirkpatrick's advice, family care givers like me are not dealing with death but with finding ways to go on living. His assertion that I (and presumably other family care givers like me) need professional help to deal with “obvious feelings of grief, loss, despair, anger, and even hopelessness” is well-meaning but patronizing. It shifts the focus away from systemic problems and places the burden on the individual care giver.

Counseling is important in dealing with grief and loss, and it should be reimbursed like other needed care. But for too long loving and devoted family care givers have passively accepted the indignities, irrationalities, and hardships imposed on them by an unresponsive health care system. A little anger, combined with a determination to promote positive change, is definitely in order.

Carol Levine, M.A.
United Hospital Fund, New York, NY 10018-2399

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