Practice

What a consultation actually is

A clinical ethics consultation begins with a phone call, usually from someone who is out of options.

A registrar who does not think the consent that was obtained is real consent. A charge nurse whose team is being asked to continue treatment they believe is now harming the patient. A family that cannot agree, or an executive facing a decision the hospital has no policy for.

It is not an opinion service. The ethicist goes to the ward, reads the notes, and talks to everyone — the treating consultant, the nursing staff, social work, pastoral care, and, above all, the patient and the family. Most of what looks like a moral disagreement turns out on inspection to be a failure of communication, an unspoken prognosis, or a question nobody has been willing to ask out loud. What remains after that is the genuine ethical problem, and it is usually smaller and harder than it first appeared.

The work ends with a recommendation the people involved can actually act on, and with follow-up to see that a plan of care was agreed and implemented. It is done at the bedside, at whatever hour it is needed.

As Hospital Ethicist to the Mater Misericordiae Hospitals Complex in Brisbane, I ran this as a twenty-four-hour, seven-day service across five hospitals. Requests averaged three major cases a week. They included life-and-death decisions for adults, children and newborns.

Building a service where none exists

An ethics service is an institution, not a person, and building one is mostly political.

At the University of Nebraska Medical Center I wrote the proposal, secured institutional approval, and built an eighteen-member multidisciplinary consultation service at University Hospital — six physicians, six nurses, and six others including hospital chaplains, social workers, an attorney, a psychiatrist, a genetic counsellor and an ethicist. I wrote the medical centre policy, the operating plan and the case consultation protocol; administered a twenty-four-hour on-call roster staffed by small teams; established the service’s own bioethics education program; and put in place evaluation procedures that used client feedback to improve the work.

I chaired the University Hospital Advance Directives Task Force, a twelve-hospital regional working group formed to develop policy and procedure for implementing the Patient Self-Determination Act.

At the Mater I established the clinical ethics consultation service from scratch and worked with the Chief Operations Officer to develop on-site legal services as an active resource for the consultation process and for policy review.

Governance and policy

Ethics that lives only at the bedside cannot protect anyone systematically. The durable work is at board level.

With the Acting Director of Mission and Ethics, I created The Ethics Advisory Council as a principal committee of the Mater Governing Board — wrote its operating program and terms of reference, published the resource handbook that oriented its members, and served as the primary staff resource setting its agenda and producing its work.

Policy developed or led through that process included informed consent for post-mortem examination, confidentiality of health information, sterilisation of intellectually disabled girls and young women, and the prenatal testing program of the Maternal-Fetal Medicine Centre. I initiated a comprehensive ethics policy review for the entire hospitals complex, and authored the formal responses issued by the CEO to community organisations challenging hospital practice — including a challenge from the disability community regarding prenatal ultrasound screening in research and clinical practice.

I coordinated the strategic ethics review of the proposed Queensland Statewide Maternal Fetal Medicine Service, which specified the corporate ethical terms on which the Mater could participate in a network including state hospitals and outside medical staff, and how requests for termination of pregnancy were to be handled within it.

I initiated and led the Ethical Criteria for Resource Allocation project with the Executive Leadership Team, and served on the Executive Resource Allocation Committee commissioned by the CEO.

Research ethics

I served as ethics consultant to each of the Mater’s research ethics committees — Adult, Mothers’, Children’s and Private — and in that role participated in the ethical review of hundreds of clinical trial protocols.

I chaired the twenty-member, five-hospital planning committee that created the Mater Research Secretariat, and was principal designer of its structure and process, producing the implementation plan and budget with hospital executive directors. I developed and published research ethics guidelines for the scientific and ethical assessment of protocols across the complex, including new processes for budget accountability, monitoring of protocols within hospital units, and training research staff in best-practice informed consent.

I established a research ethics orientation program for newly appointed committee members with quarterly workshops, founded Letter from The Hospital Ethicist as a standing publication on research ethics, and delivered special seminars in research ethics for Mater staff and scientific investigators across the Brisbane region. I participated in the NHMRC workshops implementing Australia’s National Statement on Conduct of Research Involving Humans.

I was a member of the management committee of the Perinatal Epidemiology Centre, working with its Director on the scientific and ethical review of study design and patient protections, and was a regular participant in the Fetal Dysmorphology Review Group — the interdisciplinary meeting convened for the most difficult cases of fetal pathology and impaired neonates.

Setting standards beyond one hospital

As bioethics consultant to the External Advisory Working Group of the Joint Commission on the Accreditation of Healthcare Organizations, I helped develop the Patient Rights and Organisational Ethics section of the JCAHO accreditation standards — the standards against which American hospitals are measured.

I was a participating consultant in the development of the Code of Ethical Practice for Biotechnology in Queensland for the Queensland State Government’s Biotechnology Regulation Program.

I was a faculty member of the U.S. Department of Education’s interdisciplinary national program Starting and Strengthening Hospital Ethics Programs, and worked under the Department’s Fund for the Improvement of Post-Secondary Education on Educating Health Care Ethics Committees: A National Dissemination Project, coordinating intensive education programs for ethics committees, hospital and nursing home executives, and clinical staff. The published chapter of the same name sets out that method in full.

As Director of Outreach Programs at the University of Virginia’s Center for Biomedical Ethics, I was project officer for a Virginia Humanities grant that established ethics programs in ten Virginia hospitals and trained twenty Visiting Fellows.

Independent practice

After the Mater I established The Ethics Consultation Group, providing custom clinical and corporate ethics programs to hospitals and health care professionals across Queensland — among them Redland Hospital, Royal Brisbane Hospital, Princess Alexandra Hospital, Rockhampton Hospital, Gold Coast Hospital, and the Intensive Care Society of Australia and New Zealand.

Contracted to the Bayside Health Service District, I developed the health district ethics program covering Redland Hospital and the Moreton Nursing Care Unit: conducted the corporate ethics retreat for district executive directors, created and trained the district ethics committee and helped administer it, developed its policies, ran courses, workshops and case consultations, and completed the formal needs assessment and program review delivered to the District Manager.

I convened the Bioethics Briefing 2001 seminar series on ethical and legal issues at the beginning and ending of human life, with a faculty drawn from the Queensland Clinical Genetics Service, health law practice, and Queensland University of Technology.

Now

I work in support of First Nations human rights and truth-telling in Australia.

The work is communications, research and video. It is a supporting role, carried out at the direction of the people whose work it is.