Report of a talk by
Judge Catherine McGuinness,
Chair of the Council of the Forum on the End of Life,
to the Humanist Association of Ireland meeting on
Sunday 6th July 2014 in Buswell’s Hotel, Dublin
Judge McGuinness presented the Think Ahead concept (1). It was developed as an outcome of the Irish Hospice’s Forum on End of Life (2) deliberations held every two years since 2009; from this the Council of the Forum on the End of Life was formed to carry out the work of the Forum. Its work principally looked at the need to legislate for and organise practical matters for people as they approached the end of their lives when people are in need of respect, care and dignity.
The principal subject of discussion is the advance healthcare directive (3) which is a set of instructions regarding what procedures you would not like to have done in the event that you are unable to communicate with your medical carers. The Oireachtas Committee on Justice is to consider legislation covering this directive. At present such directives have only the force of common law based on case law. The new provision is that people over 18 and who have capacity to make an advance healthcare directive, may do so in writing witnessed by a non-relative; this directive would have legal force. Such a directive may be revoked verbally but may only be changed in writing. Making a directive is to be voluntary. In the directive you may nominate another person to act on your behalf if you lose capacity. The directive will help to make your care more straightforward as the medical and nursing staff will be acting clearly according to your wishes. These directives do not include euthanasia or assisted suicide as these are illegal in Ireland at present. The patient, even when unconscious, is an autonomous person who may refuse treatment against medical advice and may even refuse treatment which would be expected to prevent their death. A person may not demand treatments as this is a matter for the provision of services from hospitals and the health service generally.
Fundamental to the experience of the end of life is the human need for respect, empathy, care and kindness. Unfortunately at the time of severe illness when a person cannot communicate, decisions are often made very quickly with perhaps more concern for the wishes of the relatives than for the person’s own wishes.
Most people prefer to die in their own homes surrounded by their friends and family however most people actually die in hospital surrounded often by noisy machines and busy medical and nursing staff. There is a need to allow people to die at home and a need to improve conditions in hospitals so that the building and rooms speak of comfort and light. On a practical matter it is the case that only a medical doctor may declare someone to be dead, this delays the obvious reality from relatives. Is it possible that the HSE could change its procedures and allow experienced nurses and paramedics to make that declaration when they are certain that death has occurred?
The main issue that Think Ahead deals with is our reluctance to discuss our own death with our friends and family. It is almost as if we hope it won’t actually happen to us, or that we are afraid of bringing it upon us by talking about it. There are many financial, legal and funeral arrangements to be made when you die; these may cause major and long-lasting problems for your relatives and friends who may have different opinions as to your wishes.
The practical response of the Council on the End of Life is to produce the Think Ahead form. This provides a means for us to record our wishes and collect important information. The form has five sections: key information, care preferences including an advance healthcare directive, legal issues, financial issues and what to do when I die. An important issue is to decide whether you want to appoint someone with an enduring power of attorney so that practical financial decisions may be made while you are still alive but are incapacitated.
In trials (4) so far in Kildare, Louth and Limerick it has been shown that the Think Ahead form is very helpful in encouraging people to talk about their concerns about death with their family (83%) and a majority found it fairly easy to use.
The Forum on the End of Life has not approached the subject of euthanasia or assisted suicide and is unlikely to do so due to its origins in the Hospice movement, however the Council intends at least to study these matters.
Questions from the members and visitors brought up the following points.
It was suggested at the meeting that there do not seem to be any non-religious hospices in the Republic (5). (However this reporter notes that the Foyle Hospice (6) in Derry and the other hospices in Northern Ireland (7) appear to be non-religious, this may be because of sensitivities in Northern Ireland where non-denominational public services are considered normal).
The practice in Ireland seems to be that medical staff will ask an incapacitated patient’s relatives for guidance on what is the course of action to take regarding the balance between quality of live and extension of life; in the USA advance health care directives are normal. Part of the difficulty in legislating for directives is that an elderly person with little support and perhaps with burdened relatives (who might prefer to be unburdened) may make a directive under emotional duress.
Another issue at present is the fear of nursing and medical staff to get sued if they administer medication to increase the patient’s level of comfort (e.g. morphine) which as a side effect may reduce the number of days the patient remains alive. One member told of the delight of a nurse when given permission to administer such medicine to the member’s neighbour who was near death.
From a chaplaincy point of view there were many ways to celebrate the life of a person which could respect the wishes of the deceased and their relatives; there is certainly room for the Irish wake complete with story-telling, tears, laughs and a drop of the good stuff.
Judge McGuinness’ talk was very well received by the meeting which was full to the doors, attracted no doubt by the importance of the topic and the reputation of the speaker.