Professor Eamon O'Shea:

My background is primarily in aging and dementia studies. I possess a particular knowledge of end-of-life care, having doing some work in this area during the past five years or so.

Irish people are living longer and this means that more of them are going to reach the stage at which end-of-life care will be necessary. One of the important aspects of the work I do relates to transitioning to death. Many people die outside the home, but transition to end of life is a really interesting concept in long-stay care in particular. People transition into older age; they then transition into some level of dependency, then into perhaps residential care and then into the end-of-life stage. It must be recognised that they undergo a series of transitions and that everything does not happen all at once. We sometimes think of death as coming suddenly, but it often does not do so. To reinforce what previous speakers stated, we must be aware of the need to integrate care structures in order to ensure that the various services work together. I refer in particular to gerontology and palliative care services, which are critical.

The other generic context is that of information flows between living and dying. I spend a great deal of time in nursing homes and residential homes. These are places of living but they are also places of dying. What one notices immediately in these homes is the need to create a culture of understanding of death and of support for those who will be left behind. Information flows between care staff and people who are dying and those who remain living are critical. These are the critical interfaces we sometimes forget when considering palliative care services.

The third generic concept relates to quality-of-life issues. These are serious issues and one of the critical dimensions of the human rights of people who are dying is that they must continue to live until they actually pass away. The sort of personhood associated with dying must be to the forefront in the context of how we care for those who are dying. In this regard and in the context of the work I do in the area of dementia, it must be to the fore when it comes to those who are cognitively impaired. There is a need to support those who cannot communicate in ways which would be considered normal but who can still communicate in some fashion. These are critical aspects which we need to discuss.

Another major issue relates to "mediating differences", as I term it, and communication. Ms Rickard-Clarke referred to communication and advanced directives. There is a need to take on board how we communicate decisions at various times in our lives. For example, decisions we take now might resonate in ten, 20 or 30 years' time. There is a need to be aware of this factor and the progress being made towards introducing legislation in this regard is really welcome.

On the locus of decision-making among individuals, health professionals and families, we have all been at the interface at which we feel we want to give and receive information. However, we do not always get the information we require. Information is critical, as is the discourse relating to life and death. It is difficult for people to discuss death, but this is so necessary if the quality of life and standard of care that are essential are to be achieved.

Issues relating to communication and language barriers and to different cultural ways of dying are arising with increasing frequency. Some of the staff at residential care homes come from different cultures and they may have a different interpretation and understanding of death and dying. Increasing numbers of people from other cultures will be dying in our hospitals and residential care homes and we need to consider the differences to which I refer if we are to meet the requirements of such individuals.

The final aspect of mediating differences relates to education and training. It is critically important that generic staff should be trained to understand end-of-life care issues. This matter cannot be viewed as being one with which palliative care services will deal. All care staff in hospitals and residential care will be obliged to deal with death and dying and they need to be trained to do so.

On facilities and services, we need to think more about the infrastructure of dying - that is, the places in which people die and the privacy, dignity and respect associated with death. It is not always possible to do so but we need to make much better efforts to get the infrastructure right in terms of our approach to dying. The position is similar with regard to the bereavement services required after death. When someone in a residential care home dies, everyone notices. We need to discuss this matter and put in place services for those who are left behind in such homes when a valued member of the community dies. So often, this matter is just passed over.

I wish to make a quick comment on dementia and the need to make cognitive impairment an issue. There is some international evidence to the effect that people with dementia are often subject to unnecessary investigations, receive less pain relief and are the subject of over-prescribing. There is a need to be careful when it comes to those with dementia who are nearing death.

Following a number of years of research, I am of the view that there is a need for greater consultation with individuals for many years before death, as death approaches, when they are transitioning into long-stay care, and right up to the time of death. We need to talk to people but we also need to learn how to talk to them. Dialogue is extremely important. The second element is that we must improve both the physical infrastructure and bereavement services. The third element relates to enhanced education and training for staff, which is really critical. The fourth element relates to the need to make end of life and bereavement major public policy issues. I would encourage movement in that direction.