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Appendix A1

A first hand account of the experience of ethics support in the United States.

Dr Ainsley Newson, Imperial College, London
In May 2004, I undertook a one-month placement with a Department of Clinical Bioethics in a large not-for-profit hospital in the United States. Here, I had the opportunity to observe ethics consultations and to discuss the various approaches to providing clinical ethics support with a variety of professionals in this field.

The Department in which I worked has been established for over twenty years and was one of the first such units in the US. Three clinical ethicists are employed in the department full-time, with ancillary research and support staff. On average, the Department handles around five ethics consultations a week, in addition to ongoing work in policy, education and academic research. Ethics consultants rotate on service approximately every three weeks.

The consultants make decisions about a similar range of issues as do clinical ethics committees in the UK: DNR orders, medical futility, withdrawal of treatment, decision-making capacity, treatment refusals, compliance concerns and disagreements between patients/families and health professionals. Cases also arose, however, to illustrate the broad range of theoretical and practical skills required to undertake successful ethics consultation. For example:

  • Should an ethics consultant become involved when a dying child’s family wants to undertake a loud and involved religious service at the bedside?
  • What, on a practical level, should an ethics consultant do when a potentially manageable genetic condition is identified in a donor organ?
  • How much knowledge of surgery and its attendant risks is required in order to ensure a patient is providing fully informed consent rather than mere acquiescence?
  • Should patients with impaired mental capacity who have limited family support be denied access to risky surgery?
  • Should parents who ‘want everything’ for their terminally ill newborn have access to a full range of treatments even if these are futile?
  • How should the demands of agitated families be managed?

The largely theoretical nature of the discussion and debate on these topics in the literature and the lack of consensus on many ethical issues in health care are brought into stark reality when a decision has to be made.

The level of consultation the Department provides varies with the kind of issue at hand. Ethics consultants regularly provide advice to the health care team, facilitate at patient/family meetings, provide education or refer on to another service (such as the institutional ethics committee). In contrast to the majority of UK clinical ethics committees, Department members undertake a significant proportion of their consults directly with patients. Often, ethics consultants take on a role beyond that typically construed as ‘clinical ethics’; Bioethics is often paged by health care team when, for instance, the hospital ombudsman or the social work team are unavailable. Staff also perform research ethics consults: assisting with the creation of consent forms or deliberating on the sensitive ethical issues in a proposed trial.

The approach to ethics consultation is largely individual, although unusually complex or difficult problems are discussed amongst the team. Cases are reviewed at a fortnightly meeting, in collaboration with other clinical staff interested in bioethics and academic medical ethicists from nearby universities.

The Department is also supported by an institutional ethics committee. This committee, like the majority of those in the UK, tended to work at arm’s length; generating and responding to hospital policy and considering more difficult cases, such as maternal-foetal relations.

The Department also provides regular ethics liaison services throughout the hospital, including twice-weekly rounds in Intensive Treatment Units. Bioethics staff also provide regular support to a number of clinical programs, notably those committees assessing candidates for organ transplantation, living donor transplants and pre-surgical consults for procedures such as deep brain stimulation for Parkinson’s disease, or epilepsy surgery. This more ‘proactive’ or preventive approach to ethics consultation has three main aims:

  1. 1. To address specific ethical questions raised by patients, families, or the health care team;
  2. 2. To determine whether there are any ethical contra-indications;
  3. 3. To ensure the patient has the ability to judge the risks and benefits of the intervention and that the patient’s values match with the desire for the intervention.

All ethics consultations (whether simple or complex) are logged using a written summary report. This contains all relevant patient information, the requestor’s details, a description of the problem and a report of the processes used in resolving it. In many cases, the clinical ethicist will make a note in the patient’s chart or electronic patient record reporting his / her view as to the most appropriate course of action.

During my visit, I was struck by the significant integration of Bioethics into the provision of standard clinical care. Clinical staff were very aware of the bioethics service, and demonstrated no hesitation in asking for advice. The Department’s details were highly visible on all hospital paperwork and the availability of bioethics was well-publicised to patients. After-hours access to consultation was also possible.

My observations also indicated that the success or failure of an ethics consultation is easily determined by the approach taken. Ethics consultation will only rarely involve one particular issue. If a consultant immediately jumps to classifying a problem, then it is likely that the consultation will fail as this will limit the range of thinking that will be undertaken. Rather, it is important to think widely and creatively about any given scenario: approaching problems in clinical ethics is a very creative process. Further, the qualities of a good ethics consultant range far beyond mere theoretical knowledge. Consultants need to be able to engage with a wide variety of people, listen, facilitate and show empathy.

The minutiae of details discussed in a consultation can also be vital: one patient being assessed for epilepsy surgery told the consultant that she knew the risk of her surgery being successful was 60%. Yet, when asked how many people from a room of 100 would represent this percentage, she could not answer. What does this indicate about her understanding of the surgery? What impact might this have on her ability to provide informed consent, and what are the ethical implications?

US clinical ethics consultation is by no means a static discipline and several methodological issues are currently being debated. For example, there is increasing concern about the ‘professionalisation’ of ethics consultation and the kind of qualifications and training that should be required. Additionally, anonymous consultations sometimes occur, particularly where there is a disagreement within the clinical team.

Further Reading

Aulisio MP, Arnold RM, Younger SJ (eds) Ethics consultation: From theory to practice. Baltimore: Johns Hopkins University Press (2003).

Dr Newson’s visit to the United States was supported by a Small Research Grant from the British Academy.

Copyright of Appendix A1 is held by Dr Newson.

Dr Ainsley Newson
Medical Ethics Unit, Imperial College London
London IDEAS Genetics Knowledge Park