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The biggest issue in medical ethics today is the growing occurrence of conflict between health care providers, their patients and patients' families over treatment options, according to Canadian medical ethicists in a survey published today.
Asked by the University of Toronto Joint Centre for Bioethics, an international medical ethics think tank, to rank "the top 10 ethical challenges that Canadians may face in health care," 12 full-time ethicists at Toronto area hospitals cited as number one: disagreements over treatment decisions between health care professionals, patients and their families.
Panelists say such disagreements typically involve health care professionals who recommend a treatment option (i.e. increased or decreased treatment) with which patients and their families disagree, and vice versa.
In a paper published today in the peer-reviewed, open access UK journal BMC Medical Ethics, the researchers say that while such disagreements are most common in the intensive care unit, they occur in virtually every health care context, including palliative care, rehabilitation, mental health, surgery, internal medicine and family medicine.
Disagreements range from withdrawing aggressive treatment from a terminally ill patient to a family physician refusing a patient's request for antibiotics for a viral infection.
End-of-life critical care cases tend to be the most emotional and hardest to resolve, the recent public outcry surrounding patient Terri Schiavo in Florida a vivid example. (The survey was conducted prior to the Schiavo controversy, in which her immediate family members were very publicly conflicted over continuing life-support).
Such cases are usually very private, however, typically involving a family demanding that everything be done to maintain a patient's life versus a medical team that views continuing aggressive intervention as tantamount to torture. Families may cite deeply held religious beliefs and argue they are shared by the patient, or accuse the health care team of wanting to save money or to give the resources to another patient. Conflict ensues and communication often breaks down.
At the root of such conflicts is often a clash of value systems in Canada and elsewhere as nations become more culturally diverse.
JCB director Dr. Peter A. Singer said he hopes the study will help focus attention on the top challenges and build public support for action to address the problem of conflict between health care professionals and the people they treat. "To our knowledge this is the first time a list of top ethical challenges has been systematically developed by bioethicists anywhere. Such lists are often the first step to an action plan, and nowhere is this needed more than for this survey's number one challenge!
"We hope this research will be followed by a global level study of top ethical issues facing health care workers, patients and families. We believe the results would be similar throughout the industrialized world," he added.
"The results are interesting because the ethical challenge rated highest by the panel is rarely in the public eye, compared to issues such as waiting lists or access to resources for the chronically ill," said study leader Susan MacRae, head of the JCB's Clinical Ethics Group, created in 1995 in part as a sounding board on challenging cases for hospital bioethicists.
"These medical conflicts are far from rare, however, and constitute probably the most common reason for requests for ethical consultations today," she added.
"I hope this study will encourage more investigation into the conflicts and dilemmas of healthcare from both the perspective of healthcare professionals and also from the perspective of patients and their families."
In their paper, the JCB group recommends addressing the problem through such steps as:
- Teach negotiation and mediation skills in all health education programs – undergraduate, postgraduate and continuing;
- Ensure every hospital has policies and mechanisms to resolve disagreements between the health care team and patients or their substitute decision makers;
- Establish national networks to gather the lessons from different approaches used across the country and make those lessons known nationally for health care institutions to build upon.
The survey involved four rounds of response from the panel to reach consensus. The other top 10 ethical challenges:
2) Priority setting related to medical waiting lists
Waiting lists represent a growing problem in Canadian health care as increasing demand for services puts mounting pressure on already strained provincial systems countrywide. The panel says waiting for care may in some cases compromise the health status and outcomes of patients, impede their ability to return to normal, or contribute to psychological distress. Waiting lists may contribute to inappropriate use of scarce resources, as is the case when acute care beds are used for long-term care patients, or ICU beds for chronic care patients. They also raise the issue of geographical inequities among provinces or various health centres.
3) Access to needed health care resources for the growing numbers of aged, chronically ill or mentally ill
There are two components to this set of issues, according to the study: The marginalization of populations such as the elderly and mentally ill due to negative attitudes and the historically low priority these populations receive in funding decisions. The funding priorities of governments have traditionally been acute, life-saving care, while long-term care, rehabilitation care, and mental health have been "grossly under-funded," the study says. Socially or economically disadvantaged or mentally ill patients require appropriate advocacy to ensure their needs are met. Lack of patient compliance or self-care is sometimes used as the reason to withdraw resources. Panel members say there's an ethical obligation to acknowledge and challenge discriminatory beliefs around age, culture, and mental illness that are culturally and socially constructed in order to reduce the risk of emotional and physical harms of the vulnerable in our hospitals and nursing homes.
4) The shortage of family physicians / primary care teams
The paper notes this problem is so significant Ontario recently offered incentives to physicians to join "primary care teams" (family doctor groups), to work nights and weekends, and to practice in rural areas. Many Canadians living in rural areas have no family physician; many patients in cities must wait so long to see family physicians that some choose to seek care in emergency rooms, adding pressure on already stressed emergency systems.
5) Medical error
Examples include a patient receiving the wrong prescription or dosage of medication, a patient having the wrong surgery performed, or errors impacting a larger group, as when a hospital fails to properly sterilize surgical equipment.
6) Palliative treatment for the terminally ill
The concern of doctors over appropriate dosages of pain medication when it could potentially hasten death contributes to widespread under-treatment of pain in the terminally ill, according to the paper. Another challenge in this category is deciding when to shift from a curative to a palliative care approach.
7) Achieving informed consent
Research and experience consistently show a huge gap between informed consent in theory and informed consent in practice. Many patients do not or cannot read consent forms. Consent discussions and capacity assessments are often superficial and rushed due to time constraints; rushed staffs often fail to use interpreters with patients whose first language is not English.
8) Issues related to research
Ethical issues around medical research include informed consent; the balance between fair compensation and the risk that compensation will constitute a coercive influence; balancing benefits and risks; patient privacy and confidentiality.
9) Substitute decision-making
When a patient is incapable of doing so, health care teams turn to a substitute decision maker (typically a spouse or partner or another relative, according to a government-established hierarchy). The struggle with responsibility for a potentially life-altering or life-ending decision is greatest when the patient has given no guidance on his or her wishes. Conflict often ensues between health care providers and the family/substitute decision makers as to what would be in the patient's best interests. Making these sorts of life and death decisions for loved ones can have an enormous impact emotionally on family members charged with such responsibility.
10) Surgical innovation and new technologies
Since variation is part of perfecting surgical techniques, it's difficult to determine when surgical innovation becomes a research experiment subject to ethics approval. Also at issue: ensuring that innovative techniques or procedures can be developed while minimizing risks to patients.
JCB Clinical Ethics Group
"The results of our study demonstrate just how ethically complex health care has become," says report co-author Jonathan Breslin, the JCB's Senior Clinical Ethics Fellow. "This complexity is one of the main reasons why it is becoming more and more common for health care institutions to hire bioethicists to help families, staff, and administrators grapple with these challenges,"
Marking its 10th anniversary this year, the JCB's Clinical Ethics Group is the largest organised multidisciplinary group of in-hospital clinical ethicists and fellows in Canada (and believed to be the world's largest). The clinical bioethicists work in a range of health care institutions and come from various backgrounds including nursing, medicine, social work, law, philosophy, anthropology, theology, and psychology.
In addition to consultative role, the Group's work includes developing models of clinical ethics practice in diverse health care settings and continuing education programs for health care providers.
Top 10 Ethical Challenges in Health Care: Canadian Ethicists Rank
- 1 -- Disagreement between patients/families and health care professionals about treatment decisions
Score 113 - 2 -- Waiting lists
Score 102 - 3 -- Access to needed health care resources for the aged, chronically ill and mentally ill
Score 89 - 4 -- Shortage of family physicians or primary care teams in both rural and urban settings
Score 82 - 5 -- Medical error
Score 76 - 6 -- Palliative treatment
Score 56 - 7 -- Achieving informed consent
Score 43 - 8 -- Ethical issues related to subject participation in research
Score 40 - 9 -- Substitute decision-making
Score 38 - 10 -- The ethics of surgical innovation and incorporating new technologies for patient care
Score 21
Report authors (Jonathan M. Breslin, Susan K. MacRae, RN, Dr. Peter Singer and Jennifer Bell, University of Toronto Joint Centre for Bioethics).
University of Toronto Joint Centre for Bioethics
Innovative. Interdisciplinary. International. Improving health care through bioethics.
The JCB is a partnership among the University of Toronto and 14 hospitals. It provides leadership in bioethics research, education, and clinical activities. Its vision is to be a model of interdisciplinary collaboration in order to create new knowledge and improve practices with respect to bioethics. The JCB does not advocate positions on specific issues, although its individual members may do so.
The goals of the JCB are:
- To foster interdisciplinary research and scholarship, link education to research, and disseminate research findings to improve policies and practices.
- To support undergraduate, graduate and postgraduate educational programs in bioethics.
- To support clinical ethics activities including continuing education for health care providers, ethics committees, ethics consultation, and projects to address specific issues arising in JCB hospitals.
- To foster collegial discussion of bioethics issues throughout the JCB participating institutions, and to serve as a resource for the media, policymakers, and community groups.
For more information: http://www.utoronto.ca/jcb
Journal
BMC Medical Ethics