Clinical ethicists' perspectives on organisational ethics in healthcare organisations.

BACKGROUND: Demand for organisational ethics capacity is growing in health organisations, particularly among managers. The role of clinical ethicists in, and perspective on, organisational ethics has not been well described or documented in the literature. OBJECTIVE: To describe clinical ethicists' perspectives on organisational ethics issues in their hospitals, their institutional role in relation to organisational ethics, and their perceived effectiveness in helping to address organisational ethics issues. DESIGN AND SETTING: Qualitative case study involving semi-structured interviews with 18 clinical ethicists across 13 health organisations in Toronto, Canada. RESULTS: From the clinical ethicists' perspective, the most pressing organisational ethics issues in their organisations are: resource allocation, staff moral distress linked to the organisation's moral climate, conflicts of interest, and clinical issues with a significant organisational dimension. Clinical ethicists were consulted in particular on issues related to staff moral distress and clinical issues with an organisational dimension. Some ethicists described being increasingly consulted on resource allocation, conflicts of interest, and other corporate decisions. Many clinical ethicists felt they lacked sufficient knowledge and understanding of organisational decision-making processes, training in organisational ethics, and access to organisational ethics tools to deal effectively with the increasing demand for organisational ethics support. CONCLUSION: Growing demand for organisational ethics expertise in healthcare institutions is reshaping the role of clinical ethicists. Effectiveness in organisational ethics entails a re-evaluation of clinical ethics training to include capacity building in organisational ethics and organisational decision-making processes as a complement to traditional clinical ethics education.

Applying genomics-related technologies for Africa's health needs.

While the past century has seen significant improvement in life expectancies in the developed world, it has also witnessed diseases like HIV/AIDS, malaria and tuberculosis ravage populations in the developing world. In some Sub-Saharan African countries, life expectancies have plummeted to less than 40 years--nearly half of those in developed countries. Unequal access to the benefits of science and technology, including medical advances, exacerbate this disparity. In order to address the challenge of global health inequities and strengthen the role of science and technology innovation in contributing to real solutions, the Canadian Program on Genomics and Global health (CPGGH), based at the University of Toronto, has identified three guiding questions: Which genomics-related technologies are most likely to improve the health of people in developing countries?; How can developing countries harness these technologies for health development?; and What can industrialized countries do to assist developing countries?

Clinical bioethics integration, sustainability, and accountability: the Hub and Spokes Strategy.

The "lone" clinical bioethicist working in a large, multisite hospital faces considerable challenges. While attempting to build ethics capacity and sustain a demanding range of responsibilities, he or she must also achieve an acceptable level of integration, sustainability, and accountability within a complex organisational structure. In an effort to address such inherent demands and to create a platform towards better evaluation and effectiveness, the Clinical Ethics Group at the Joint Centre for Bioethics at the University of Toronto is implementing the Hub and Spokes Strategy at seven hospitals. The goal of the Hub and Spokes Strategy is to foster an ethical climate and strengthen ethics capacity broadly throughout healthcare settings as well as create models in clinical bioethics that are excellent and effective.

Stem cell research and transplantation: science leading ethics.

One of the most exciting developments in the biological sciences in the past decade has been the discovery and characterization of human embryonic stem cells (ESCs). The interest to transplanters is the potential applications of stem cells in regenerative medicine (RM), which may involve tissue engineering, genetic engineering, and other techniques to repair, replace, or regenerate failing tissues and organs. There is little controversy surrounding human adult stem cells. However, human ESCs are surrounded by a number of ethical controversies, the extent of which is partly dependent on their source. Those derived from currently existing embryonic stem cell lines are less controversial than those derived from "excess" embryos from in vitro fertilization (IVF) clinics, while ESCs derived from IVF embryos specifically created for the purpose are not acceptable to many people arguing from religious and other moral perspectives. Somatic cell nuclear transfer, or therapeutic cloning, must be distinguished from reproductive cloning. It holds the most promise for regenerative medicine. ESCs can also be derived from gonadal ridges of aborted fetuses. The transplant community must strive to uphold societal values in its effort to find remedies for their ailing patients and address the perennial problem of organ shortage. Transplanters also have a responsibility to engage the public in their efforts to gain public understanding and support, and policy makers must take into account public opinion. Only in this way can we realize the great potential of stem cell research for organ transplantation.

Better governance in academic health sciences centres: moving beyond the Olivieri/Apotex Affair in Toronto.

The Toronto experience suggests that there may be several general lessons for academic health sciences complexes to learn from the Olivieri/Apotex affair (OAA) regarding the ethics, independence, and integrity of clinical research sponsored by for profit enterprises. From a local perspective, the OAA occurred when there already was a focus on the complex and changing relationships among the University of Toronto, its medical school, the fully affiliated teaching hospitals, and off campus faculty because of intertwined interests and responsibilities. The OAA became a catalyst that accelerated various systemic reforms, particularly concerning academic/industry relations. In this article, the evolving governance framework for the Toronto academic health sciences complex is reviewed and these policy and process reforms discussed. These reforms have created collaborative activity among research ethics boards and contract research offices of the partner institutions, and allowed the joint university/hospital ethics centre to play a role in governance and policy, while respecting the missions and mandates of the involved institutions. Although few of the policies are dramatically innovative, what is arguably novel is the elaboration of an overarching governance framework that aims to move ethics to a central focus in the academic complex. Time alone will tell how sustainable and effective these changes are.

Public health. Grand Challenges in Global Health.

This week an international panel announces a list of 14 Grand Challenges in Global Health, and scientists throughout the world will be invited to submit grant proposals to pursue them with funds provided by the Bill and Melinda Gates Foundation. We describe the characteristics of these challenges and the process by which they were formulated and selected after receiving over 1000 responses to a "call for ideas" from the scientific community.

Access to intensive care unit beds for neurosurgery patients: a qualitative case study.

OBJECTIVES: The purpose of this study was to describe the process used to decide which patients are admitted to the intensive care unit (ICU) at a hospital with special focus on access for neurosurgery patients, and evaluate it using "accountability for reasonableness". METHODS: Qualitative case study methodology was used. Data were collected from documents, interviews with key informants, and observations. The data were subjected to thematic analysis and evaluated using the four conditions of "accountability for reasonableness" (relevance, publicity, appeals, enforcement) to identify good practices and opportunities for improvement. RESULTS: ICU admissions were based on the referring physician's assessment of the medical need of the patient for an ICU bed. Non-medical criteria (for example, family wishes) also influenced admission decisions. Although there was an ICU bed allocation policy, patient need always superceded the bed allocation policy. ICU admission guidelines were not used. Admission decisions and reasons were disseminated to the ICU charge nurse, the bed coordinator, the ICU resident, the intensivist, and the requesting physician/surgeon by word of mouth and by written documentation in the patient's chart, but not to the patient or family. Appeals occurred informally, through negotiations between clinicians. Enforcement of relevance, publicity, and appeals was felt to be either non-existent or deficient. CONCLUSIONS: Conducting a case study of priority setting decisions for patients requiring ICU beds, with a special focus on neurosurgical patients, and applying the ethical framework "accountability for reasonableness" can help critical care units improve the fairness of their priority setting.

Priority-setting decisions for new cancer drugs: a qualitative case study.

BACKGROUND: Frameworks for legitimate and fair priority setting emphasise the importance of the rationales for priority setting decisions. However, priority setting rationales, in particular for new cancer drugs, are not well described. We describe the rationales used by a committee making funding decisions for new cancer drugs. METHODS: We did a qualitative case study of a priority setting committee (Cancer Care Ontario Policy Advisory Committee for the New Drug Funding Program) by analysing documents, interviewing committee members, and observing committee meetings. FINDINGS: We identified and described decisions and rationales related to 14 drugs in eight disease conditions over 3 years. Our main findings were that: priority setting existed in relation to resource mobilisation; clinical benefit was the primary factor in decisions; in the context of an expanding budget, rationales changed; rationales could change as costs for individual treatments increased; when all options were reasonable, groups funded a range of options and let patients decide; and priority setting rationales involve clusters of factors, not simple trade-offs. INTERPRETATION: Observing priority-setting decisions and their rationales in actual practice reveals lessons not contained in theoretical accounts.

Harnessing genomics and biotechnology to improve global health equity.

With decisive and timely action, genome-related biotechnology can be harnessed to improve global health equity. In June 2002 in Kananaskis, Canada, leaders of the G8 industrial nations will develop an action plan to support implementation of the New African Initiative. By extending their discussion of health issues raised in the New African Initiative to include genomics, G8 leaders could signal their intention to increase global health equity by preventing a health genomics divide from developing. There are already some early and growing examples of genome-related biotechnology being applied successfully to health problems in developing countries. But how can genomics be systematically harnessed to benefit health in developing countries? We propose a five-point strategy, including research, capacity strengthening, consensus building, public engagement, and an investment fund.

Origins of the desire for euthanasia and assisted suicide in people with HIV-1 or AIDS: a qualitative study.

BACKGROUND: Euthanasia and assisted suicide, and policies to address them are the subjects of contentious debate in many countries. However, the question of why people desire euthanasia or assisted suicide has not been coherently answered. We aimed to answer this question in a specific group of patients. METHODS: We did a qualitative study of 32 people with HIV-1 or AIDS, who were enrolled in the HIV-1 Ontario Observational Database at Sunnybrook and Women's College Health Sciences Centre, Toronto, Ontario, Canada. We elicited participants' experiences of deliberation about euthanasia or assisted suicide, and the meaning of these experiences with in-depth, face-to-face interviews. We analysed our data with grounded theory methods. FINDINGS: Participants' desire for euthanasia and assisted suicide were affected by two main factors: disintegration, which resulted from symptoms and loss of function; and loss of community, which we defined as progressive diminishment of opportunities to initiate and maintain close personal relationships. These factors resulted in perceived loss of self. Euthanasia and assisted suicide were seen by participants as means of limiting loss of self. INTERPRETATION: These determinants of desire for euthanasia or assisted suicide in people with HIV-1 or AIDS have implications for the debate on these practices, and development of policies to regulate them.

Chinese seniors' perspectives on end-of-life decisions.

Making end-of-life decisions is a painful and difficult process; one that can be intensified by cultural differences between physicians and their patients. The objective of this study was to examine attitudes of Chinese seniors towards end-of-life decisions. We conducted a qualitative survey in a Chinese community centre in Toronto, Canada. Face-to-face interviews, in Cantonese, were conducted with 40 Chinese seniors 65 years of age or older. Respondents based their end-of-life decision making on the following factors: hope, suffering and burden, the future, emotional harmony, the life cycle, respect for doctors, and the family. Respondents rejected advance directives. Respondents' attitudes toward end-of-life decision making can be understood through the lens of values from Confucianist, Buddhist and Taoist traditions. Health care workers can best achieve quality end-of-life care--and address the cultural differences that may arise--by focusing primarily on understanding the perspectives of patients and their families, and by continually striving for balanced and open communication at all stages of the caregiving process.

Communicating advance directives from long-term care facilities to emergency departments.

Many residents of long-term care (LTC) facilities are transferred to Emergency Departments without advance directives (AD). The goal of this study was to describe an ideal model for the transfer of AD from LTC facilities to Emergency Departments. Health care providers were asked to describe their ideal model for the completion and transfer of the ADs of LTC residents. A grounded theory methodology was used to identify significant themes. The model we present as a result of this analysis acknowledges the importance of simplifying and standardizing ADs, but focuses more attention on the process of completing and transferring the AD. A key feature of this model is an emphasis on the education of LTC residents and their relatives about ADs and advance-care planning. This education should involve a variety of resources used in creative ways; it should begin as soon as LTC placement is being considered, and the emphasis should be on providing information and discussing options rather than pressuring residents to make a decision.

Bioethics for clinicians: 25. Teaching bioethics in the clinical setting.

Bioethics is now taught in every Canadian medical school. Canada needs a cadre of teachers who can help clinicians learn bioethics. Our purpose is to encourage clinician teachers to accept this important responsibility and to provide practical advice about teaching bioethics to clinicians as an integral part of good clinical medicine. We use 5 questions to focus the discussion: Why should I teach? What should I teach? How should I teach? How should I evaluate? How should I learn?

Waiting lists for radiation therapy: a case study.

BACKGROUND: Why waiting lists arise and how to address them remains unclear, and an improved understanding of these waiting list "dynamics" could lead to better management. The purpose of this study is to understand how the current shortage in radiation therapy in Ontario developed; the implications of prolonged waits; who is held accountable for managing such delays; and short, intermediate, and long-term solutions. METHODS: A case study of the radiation therapy shortage in 1998-99 at Princess Margaret Hospital, Toronto, Ontario, Canada. Relevant documents were collected; semi-structured, face-to-face interviews with ten administrators, health care workers, and patients were conducted, audio-taped and transcribed; and relevant meetings were observed. RESULTS: The radiation therapy shortage arose from a complex interplay of factors including: rising cancer incidence rates; broadening indications for radiation therapy; human resources management issues; government funding decisions; and responsiveness to previous planning recommendations. Implications of delays include poorer cancer control rates; patient suffering; and strained doctor-patient relationships. An incompatible relationship exists between moral responsibility, borne by government, and legal liability, borne by physicians. Short-term solutions include re-referral to centers with available resources; long-term solutions include training and recruiting health care workers, improving workload standards, increasing compensation, and making changes to the funding formula. CONCLUSION: Human resource planning plays a critical role in the causes and solutions of waiting lists. Waiting lists have harsh implications for patients. Accountability relationships require realignment.

Hospital policy on appropriate use of life-sustaining treatment. University of Toronto Joint Centre for Bioethics/Critical Care Medicine Program Task Force.

OBJECTIVE: To describe the issues faced, and how they were addressed, by the University of Toronto Critical Care Medicine Program/Joint Centre for Bioethics Task Force on Appropriate Use of Life-Sustaining Treatment. The clinical problem addressed by the Task Force was dealing with requests by patients or substitute decision makers for life-sustaining treatment that their healthcare providers believe is inappropriate. DESIGN: Case study. SETTING: The University of Toronto Joint Centre for Bioethics/Critical Care Medicine Program Task Force on Appropriate Use of Life-Sustaining Treatment. PARTICIPANTS: The 24-member Task Force included physician and nursing leaders from five critical care units, bioethicists, a legal scholar, a health administration expert, a social worker, and a hospital public relations professional. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Our specific lessons learned include a) a policy focus on process; b) use of a negotiation and mediation model, rather than a hospital ethics committee model, for this process; and c) the policy development process is itself a negotiation, so we recommend equal involvement of interested groups including patients, families, and the public. CONCLUSIONS: This article describes the key issues faced by the Task Force while developing its policy. It will provide a useful starting point for other groups developing policy on appropriate use of life-sustaining treatment.