THIS MONTH'S ISSUE:
Health Care on Main
A 70-year-old rancher whose family has worked the same land for 150 years is diagnosed with possible coronary artery disease. The nearest acute-care hospital is 200 miles away. The ranchers problem is highly treatable but will involve several tests, possible surgery and continuing medication.
He tells the family doctor that he has no medical insurance nor anything to sell to pay for extensive medical care. He does not wish to pursue treatment or discuss options with his wife. His primary concern is to preserve the ranch land for future generations.
If I ransom this place to pay for a heart, he says, there wont be much left for anyone to live for.
The doctor, a close family friend, is left to sort out a tangle of ethical questions: Does his patient have enough information about his condition to make a fully informed decision? What are the doctors obligations, if any, to the patients family? How far can he go to persuade his patient to seek further treatment? Respect for patient autonomy is put into direct conflict with questions of cost, competency and doctor-patient trust.
The hypothetical case study outlined above is part of a new manual being developed by Ann Cook and Helena Hoas of the High Mountains High Plains Rural Bioethics Project at UMs Rural Institute on Disabilities. Its purpose is to help staff in rural hospitals address ethical questions that arise when distances to health care are great; financial, medical and personnel resources are scarce; and the tight-knit social fabric of small, scattered communities means that privacy, confidentiality and objectivity are difficult to maintain.
Health-care providers in rural communities encounter these types of bioethical dilemmas all the time, project director Ann Cook says. But so far little research has been done on how they might best be resolved in such settings.
Filling the gap
From their analysis of 123 surveys representing about 56 percent of hospitals in the area the researchers are developing and evaluating specially tailored bioethics materials, including bibliographies, case studies, how-to worksheets and summaries of pertinent legal and legislative issues. They hope to identify the tools most useful in rural settings and create a sustainable resource network for staff and community education.
The project began in January 1998 with a three-year, $270,000 research grant from the Charles E. Culpeper Foundation, the first such grant ever awarded in Montana. Cook expects the first phase of the project to end soon and a revised version of the manual to be distributed to all participating hospitals early next year.
She says that hospitals throughout the study area are eager for information to help them cope with dilemmas arising from patients cost concerns, managed care requirements, and new regulations about the procurement and allocation of transplant organs.
Cook and Hoas received advice on the project from established bioethics centers around the country hungry for information from rural areas and are working closely with regional entities such as the North Dakota Medical Association. The Rural Bioethics Project has become part of a national consortium that shares information from around the country and compares how medical- ethics decisions are made in rural regions with different social, cultural, and economic histories.
Rural vs. urban
They just dont have the time or staff to devote to it, she says.
Rural hospitals tend to be very small 80 percent of those surveyed have 50 or fewer beds with a limited nursing staff and sometimes only one or two attending physicians. Primary care is the main focus; specialists are rare. Many rural hospitals provide both acute and long-term care in the same facility, compounding the types of ethical issues staff must handle.
And, as percentages, rural hospitals often handle more older, poorer and disabled patients many of whom are uninsured or underinsured than their urban counterparts. In some areas of the country, too, differences between Native American attitudes toward medicine and the standard Western tradition also may lead to unique ethical debates.
In small communities, Cook says, patients and health-care providers inevitably know each other outside the boundaries of a professional practice to a degree that makes objectivity and confidentiality difficult.
Familiarity may be a concern in urban hospitals, she says, but it is pervasive in rural settings.
Distance to care is another factor frequently leading to ethical quandaries in rural hospitals. When serious complications develop, patients may need to transfer to a larger hospital far away where specialized care is available. Yet many are reluctant to seek needed services. They worry about the price of care and the risk of losing social supports at home. And while cost-saving measures such as early discharges may inconvenience city patients who live minutes away from a medical center, for patients who live 20 miles down an unpaved road and 70 or 100 miles from the nearest hospital, the consequences can be devastating, Cook says.
On the other hand, patient transfers also can jeopardize the financial well-being of rural hospitals.
The ethics of cost containment is a very real issue because if rural hospitals close, important jobs are lost and medical care becomes even more inaccessible, Cook says.
Over the next two years, the Rural Bioethics Project will focus on developing the tools to help hospital staff address ethical questions surrounding end-of-life care, patient autonomy and competence, and physician-patient trust the areas cited most often by survey respondents as causing debate.
Cook and Hoas also are exploring the use of distance-learning technologies to link hospitals to remote resources and conducting more research on how rural health-care providers identify ethical issues and use the projects materials.
The researchers have been invited to present the results of their work so far at several bioethics conferences, including the National Conference on Organization Ethics and Health Care at the University of Virginia and the Regional Conference on Medical Ethics in Grand Forks, N. D.