DEATH HAS many faces. Some of these are becoming apparent as the Forum on End of Life in Ireland finalises its formal listening process. After months of written submissions, workshops and public meetings, patterns are beginning to emerge on how people view death, dying and bereavement. It is clear, for example, that dying is an issue that goes far beyond the medical model. Death issues are not just for doctors and nurses.
Although decision-making and treatment at the death bed get considerable publicity, often arising from the ethical complexities involved, there is increasing recognition that we have to prepare as a society for all issues surrounding death. Administrators, lawyers, religious, environmentalists, architects, carers, emergency services, statutory agencies, as well as the various groups representing those who are ill and marginalised all have a role.
This was partly reflected in the panels at forum meetings organised by the Irish Hospice Foundation at locations around the State since March. Doctors and nurses were present but the attendance also included bereavement counsellors, funeral directors, solicitors, chaplains and social workers. The workshops too engaged many interests, taking evidence from more than 90 different groups. The submissions were varied and sometimes harrowing.
Emerging themes indicate that people want information to allow them to make choices on where they wish to die and on treatments that may be open to them. Some want to be involved in advanced care planning. They want their autonomy respected. They want to be dealt with sensitively either as relatives or when dying themselves. Doctors can worry, in turn, about being coaxed by relatives to utilise futile therapies when caring for dying patients. There is a universal desire for effective communication between doctors, patients and relatives, and within the broader health-care team.
Informed discussion is vital on quantity versus quality of life, pain control, hydration, nutrition and resuscitation. There needs to be modern practice guidelines and legal and ethical frameworks. Palliative care provision, in which there are many geographical and training gaps, must be enhanced. Most of all, everyone who influences or works in arenas touched by death should be sensitised to the physical, emotional, social and spiritual needs of dying people and their relatives.
The forum is scheduled to publish a draft report on its activities by next March. This will be subject to further public consultation before a final report is produced by the end of April. This process will succeed if it galvanises the relevant interests and engenders changes in policy and practice. Then Ireland will start to become a “good” place to die by virtue of accessible information about medical choices, bereavement support, clear legal frameworks, single rooms for dying patients, an understanding of spiritual and cultural differences, and hospice care. The 30,000 people who die each year and their loved ones should expect no less.