Book Review

Bringing the Hospital Home: Ethical and social implications of high-tech home care

N Engl J Med 1996; 334:1204-1205May 2, 1996

Article

Bringing the Hospital Home: Ethical and social implications of high-tech home care
Edited by John D. Arras. 259 pp. Baltimore, Johns Hopkins University Press, 1995. $40. ISBN: 0-8018-4990-X

Recently I was in a patient's hospital room, discussing her possible discharge to home. The patient had been very sick, had a gastrostomy tube, required dialysis, and had seizures complicating multi-infarct dementia. The family was not united. Her elderly husband wanted to care for her at home, enlisting their children to manage the feedings and transport her to dialysis. The children were reluctant to provide personal care and were intimidated by the tube. I felt under pressure to discharge this patient. She had stayed in the hospital beyond the time allotted for her diagnosis-related group, and I was inclined to send her home. After all, her family would figure out how to provide the care.

While we talked, I could overhear one of the daytime talk programs, in which a family was accosting a young widower for the disrespect they felt he had shown his dying wife. The man's mother-in-law asked, “But didn't you love her?” To which he answered, “I did once, but during the last eight months of her life I was no longer her husband. I was her nurse. I had to clean her, toilet her, give her shots, manage her medicines. I wasn't her husband anymore, and I hated it.” Had he come to hate her, being required to provide care at home that he was not prepared to give? This juxtaposition of events made me rethink our eagerness to displace patients from the hospital without the true informed consent of the patients and their families, and with no alternative plan in the event home care proves too much for those involved.

This collection of essays is a forum for clinicians, ethicists, and policy specialists to address the social and ethical implications of both the basic and the high-technology aspects of caring for very ill or very dependent patients in their homes. Unfortunately, the writing is uneven, with much repetition. It is not clear whether the anticipated audience is health care professionals or the general public, for some of the offerings are very sophisticated, while others are written for readers with little medical knowledge. Despite these criticisms, several chapters provide important, insightful, challenging, even provocative visions of what home care means to patients and their families, what it may mean to society, and what the costs may be for all of us, providers and recipients.

One of the best essays is the introduction, by Arras and Dubler, which sets the tone by questioning the apparent benefits of home care as compared with institutional care and identifying how the rosy, abstract vision of care at home is often at odds with the actual experience of patients and their caretakers. Caretakers often carry unacknowledged burdens and have a high risk of failure, in both human and technological terms. Ethical conflicts are intensified, because more patients are receiving more complex care in the home for longer periods. There are financial as well as personal costs.

Recalling the mythological human–animal hybrids, Kohrman, a pediatrician, discusses the unique and disturbing question of the technologically dependent child whose life requires connection to a machine — a ventilator, an intravenous pump, or a feeding tube. Such children must struggle to understand who they are in relation to their machines. How do we, as a society, view them, particularly when the machines are visible and intrusive?

Two tragic cases of terminally ill elderly persons illustrate the real-life challenges of home care. Kayser-Jones observes that the physical and emotional requirements of home care may be too taxing for family caretakers. Communication may be inadequate between them or among patient, family, and professional. Home care agencies may not be prepared to meet the complex demands of care, and physicians may not be aware of its risks and limitations.

A particularly controversial essay by Noddings analyzes the ethical distinction between moral obligation and moral support. From a feminist perspective, she challenges commonly accepted views of duty and care, suffering and the capacity to care, and wonders how we should weigh care givers' abilities and society's expectations of women.

Ruddick, a medical ethicist, examines our stereotypes of home and hospital and identifies ways in which the medicalization of the home may permanently alter the comfort and security of the patient and of other family members. The need for autonomy and privacy creates different challenges at home and in the hospital. The interdependence of the patient and the family, the assumption of the role of a sick person, “domestic paternalism,” hidden financial costs, and the increased sense of burden by caretakers may make for sticky ethical complications when patients face death in the home. And the Kafkaesque policies and procedures that limit the terminally ill patient's rights to accept or reject medical care in the home is described by Kapp.

How should we ration expensive high-technology home care? Should the most seriously ill patients, those requiring the most costly technological support, receive it? Should we require that it be provided in the home if it is cheaper there? Perhaps we should offer more limited benefits to a larger group of patients who need less complex home care. Daniels, another medical ethicist, wonders whether we have enough information about costs and risks to make these kinds of rationing decisions.

This book may help clinicians reframe and reorganize their thoughts about how home care may benefit or harm their patients. It should also be brought to the attention of the health policy analysts and politicians who believe cheaper care at home will solve our health care crisis.

Katherine Hesse, M.S.W., M.D.
Deaconess Hospital, Boston, MA 02215