Dr. Joan McCarthy:

I thank the Chairman and members for inviting me to attend these important hearings. My background is in ethics, in teaching ethics and in researching ethical topics with health professionals in Cork, Ireland and abroad. I will focus on ethical problems and suggest solutions in respect of some of the core issues and ethical challenges I see arising for people involved in end-of-life care.

When it comes to death and dying, patients, health professionals and families must make decisions in tense, fraught, emotionally demanding and constrained circumstances. In this context, recent research indicates that the general public has little understanding of the basic terminology relating to end-of-life care. People are confused with regard to the processes relating to such care and uncertain about the role of families in the context of information-sharing with patients or in respect of making decisions for patients. In addition, health professionals are uncertain with regard to patient autonomy rights and can feel pressurised by family members into denying patients relevant information or carrying out treatments they consider futile.

An understanding of the ethical challenges at the end of life is central to good end-of-life care because lack of knowledge, uncertainty about ethical obligations and responsibilities, lack of confidence in expressing nagging doubts and concern with regard to litigation and professional accountability can and do lead to oversight, error and poor practice. As previous speakers indicated, Irish legislative and regulatory bodies are driving reform in this area. This is long overdue and welcome, but if the kinds of reform envisaged in the national consent policy or the Assisted Decision-Making (Capacity) Bill are to be fully realised, then there must be a cultural shift in health care organisations and in practices. Such a shift must also take place among members of the general public. Ultimately, it makes good clinical, social and economic sense to develop educational strategies and support to ensure that clinical practice is ethically and legally sound.

We might live in an age of instant solutions but ethical problems in end-of-life care are not easy to resolve because they involve value-laden opinions, strong personal beliefs and emotional responses. As Professor O'Shea observed, the increasing diversity of the Irish population means that different cultural values must be respected and different religious perspectives understood. There is also a need for greater sensitivity, deeper understanding and more inclusive policies and practices. Increasingly, ethics is everybody's business. We cannot just leave ethics to the ethical experts; nor can we assume that clinical expertise implies ethical expertise. Moreover, recent legal challenges in respect of assisted suicide and euthanasia might have captured the public imagination but clarity and understanding are also required in order to engage with or understand more usual but also very complex and contested decisions and interventions such as those which relate to starting, stopping and de-escalating treatment, sedation, pain management and the provision of nutrition and hydration.

It follows from that kind of complexity and the dense textured challenges that are presented in end-of-life decision making that educational strategies, policies and research need to be put in place. One set of educational resources that has already contributed to demystifying ethical issues that arise in regard to end-of-life care is the document, Ethical Framework for End-of-Life Care. It is the outcome of a unique collaboration between my team in University College Cork, UCC, the Royal College of Surgeons in Ireland, RCSI, and the Irish Hospice Foundation. It is a set of resources for health and allied professionals and the general public. It considers ethically challenging situations in end-of-life care in the context of ethical values, professional codes and laws.

In this presentation, I suggest two important simple, practical and economic initiatives that will consolidate and extend the work and the impact of the ethical framework. The first initiative is a national network of clinical ethics committees. Introducing clinical ethics committees into model one to four hospitals and other health care providers in the community would bring us in line with international practice. In Canada, Australia and the United States they have such multidisciplinary committees, which perform a threefold function: To provide ethics education for health professionals, staff, patients and families; formulation and review of health care policies in the light of ethical considerations and; consultative support to staff with complex and difficult clinical cases. Some committees already exist, for example, in Beaumont Hospital and the Bon Secours organisation in this country but I suggest that they are introduced across the board and that there is a regional and national network among the clinical ethics committees. In light of budgetary constraints, the cost would be minimal and largely administrative at local level but there is a need for some support at national level to co-ordinate the network and ensure there is translation among various committees around best practice.

My second suggestion is a national end-of-life health care ethics observatory. That would be a joint initiative of institutes and universities in partnership with hospital education centres and professional bodies in Ireland. Building on the collaboration between UCC and RCSI the observatory would include tasks, such as providing educational support to the general public; to improve the training and continuous professional development of clinicians and health care staff; to develop and update the ethical framework to ensure that it is current and fit for purpose; and to initiate fourth level educational programmes, PhDs and clinical doctorates in clinical ethics and bioethics to support ongoing work. Research would be included in that area. Again, with an eye to budgetary constraints, the observatory could start as a virtual observatory. What is important is that it is national not where it is sited. It could be supported initially by a network of key people and eventually should find accommodation in the longer term in a large hospital.
Finally, when the Liverpool Care Pathway was found wanting in the UK, the reviewers called on the British Government to ensure that "guidance on care for the dying is properly understood and acted upon, and tick-box exercises are confined to the waste paper basket for ever".Drawing on the experience of others, we can see end of life and dying as a complex art. Care of the dying is a complex art that demands a range of many skills, including ethical skills and competencies so that sight is not lost of the fundamental bond between professional and patient. Where ethics support is part of a standard practice of health care organisations, the international evidence indicates that health care staff are more ethically literate leading to improved patient and family outcomes and less moral stress, desensitisation and burnout for health professionals who are struggling at the coalface due to current budgetary constraints. The two initiatives I suggest, namely, the national clinical ethics committee network and the observatory would work together to ensure the development of that kind of ethical literacy. It presents an opportunity for Ireland to take a leadership role internationally in the development of ethically and legally sound clinical practices in end-of-life care.