Planning your death while alive

Gabriel Byrne

Issue 392, vol.98, Winter 2009

Dr Maurice Manning delivered the keynote address at the inaugural session of the Forum of End of Life in Ireland, of which I am a patron, and I was particularly struck by one comment he made: “Both as citizens and as a society we need to break the taboo that surrounds death and assert clearly that, when it comes to end-of-life, we need more rights than the last rites and we also need to develop a greater sense of personal responsibility and put effective systems in place to enable people to act responsibly.” He went on to state that the health services had a responsibility to promote greater public participation in healthcare and to develop the skills of healthcare providers in helping us to consider aspects of our future that we might rather not consider.

Dr Manning’s challenge to take responsibility for our own death should be heeded, although it will take a culture change because, like many other societies, we are all in death denial. The Irish may be seen as having a comfort with death traditions, with waking and funeral ritual, but this does not translate to better ageing, better care and better planning.

Death is certainly a scary subject. In a world that is obsessed with beauty and youth, it is too much of a stretch for many of us to consider a time when we are in a doctor’s surgery and get the diagnosis of a life-limiting illness or a moment when we loose control over our bodily functions or, we are forced to cede control to the professionals.

Many of us have visited hospitals to say our last farewells to much-loved family members or friends. Far too many patients end their days in a busy public ward with poor sanitary facilities, little or no privacy, save for a flimsy curtain around the bed, no space around the bedside for relatives to spend time and no room for the exchange of sensitive medical information, nor those precious last conversations with loved ones. No wonder people consign any nagging fears and worries about death and dying to the dark recesses of their minds!

At least we are not denying that we are in denial – research from the Irish Hospice Foundation in 2004 found that 51% of people felt there was not enough discussion on death. In fact, it is claimed that thinking ahead could be a liberating experience. At a public lecture in Dublin in September 2009, Professor Allan Kellehear of the Centre for Death & Society at the University of Bath stated: “The more you know and understand about death and dying, the less you worry and the less depressed you get. There is a lot to know about living with life-limiting illnesses - it does not mean a death sentence. The more knowledge we have, the more we can support the bereaved and ourselves.”

An international expert on death and dying, Prof. Kellehear believes that providing services for the dying was not enough. A broad public health approach, which encourages people to look after themselves and other people, is required.

Under a public health approach, as people age or develop life-limiting illnesses they can be supported to take positive measures to live with their condition. Dying impacts on the person, the community and the family, so there should be engagement with schools and workplaces on issues around death and dying. The public should be educated on how to live healthily, what to expect when grieving and how to support the bereaved in their community. Prof. Kellehear says that community development and health promotion at end of life is crucial if we are to strengthen our chances against the erosion of our independence, and to draw a line against encroaching professional control at end of life.

Embracing Prof. Kellehear’s approach will involve changing policy, but its success will also depend on each one of us engaging with the process. We plan our holidays and we would give some thought to buying a new car. You would think ahead for your child’s education or inheritance. Why not think ahead for your own experience of dying and death?

We can make life easier for ourselves and for people who we leave behind by recording what we want to happen at the end of our lives. Life does not always turn out as we want, nor does death. Some of us will live to a ripe old age, but others will die in accidents or in middle age. By making decisions now about future treatment and care – and regularly reviewing our decisions - we can relieve any burden on our families and ensure that we are centrally involved in decision making.

Now, when you are in your full health, is the time to consider what you would prefer to happen if you could not speak for yourself. Would you want doctors and nurses to take extraordinary steps to prolong your life? Who would you like to make decisions on your behalf? Would you like to donate your organs or leave your body to medical science? Do you want to be cremated or buried? Where would you like to be buried and what kind of ceremony would you like at your funeral?

Some welcome news about patient involvement in their own care emerged last autumn when the Law Reform Commission published its report on Advance Care Directives (ACDs) or ‘living wills’. An ACD is a statement about the type and extent of medical or surgical treatment you want in the future if you are not able to make that decision when the time comes. While some countries, such as the USA and the UK have legislated for living wills, Ireland has no legislation in this area. The Commission has recommended that a law to recognise ACDs should be introduced which would include setting up an ACD register and a code of practice to provide guidance on the creation and execution of ACDs.

This is a welcome move. The status of any living wills that are currently drafted are unclear in Ireland, as they have no legal force. The Irish Hospice Foundation (IHF) is encouraging people to think ahead and to consider their care options. In January 2009, the IHF’s Hospice Friendly Hospitals (HfH) Programme called for the right of individuals to record their preferences for future care in a submission to the Law Reform Commission’s public consultation on ACDs.

The submission stated that it would seem to be an appropriate aspect of care and support that citizens should have a right to record their preferences on how they would like to be cared for in certain future circumstances. Laws were needed to facilitate processes whereby individuals could indicate in advance their preferences for care and treatment and to establish their right to have these preferences respected particularly at the end of life.

Any such legislation should be concerned with broader process issues and the HFH submission supported the view of The Irish Council for Bioethics in their document ‘Is it Time for Advance Healthcare Directives?’ (2007) which stated: ”While advance directives are widely advocated for end-of-life decisions, they should be seen as part of an overall process that aims to adjust and improve the culture of end-of-life treatment and care for all parties concerned”.

This approach is also consistent with efforts to promote user involvement in the health services, which was defined by the Health Boards Executive in 2002 as: “A process by which people are enabled to become actively and genuinely involved in defining the issues of concern to them, in making decisions that affect their lives”. The HSE’s National Strategy for User Involvement in the Health Services (2008) also aims to promote patient involvement in their own care as partners with health professionals.

The HFH programme, which operates in more than 40 community and acute hospitals countrywide, has expressed concerns regarding the level at which decisions on resuscitation are made, the way in which decisions are made without consultation and frequently expressed disquiet about the wishes of patients being ignored. It has also highlighted concerns about the avoidance of discussion on patient preferences by some care staff.

Public Education is required in the context of any proposed legislation, to ensure that the public understand the scope of the legislation and what it will or will not permit. Only an informed public can frame useful and effective statements of care preferences or advanced care directives.

 Citizens have the right and also the responsibility to record their preferences and have them taken into account in future health care. The public also needs to learn about what can be involved in the process of resuscitation and what the implications and outcomes are likely to be. People must also become aware that preferences for care are likely to change as circumstances change and that the formulation of preferences is part of a process, rather than a once-off event. How you feel at this very minute in one scenario may not reflect your views in ten years time, when faced with the same circumstances. Laws need to be introduced that enable systems to be established for recording, accessing and particularly updating statements of care preferences.The beginning of action is awareness.

Under the UK’s Medic-Alert System, specific illness or drug allergy information and family emergency contacts are recorded through a charitable organisation and the member wears a bracelet or neck chain, providing emergency personnel with a number to call to obtain information in circumstances where the wearer is unable to communicate. A development of this system and the provision of other opportunities, such as standard forms for recording preferences made widely available and promoted through outlets such as general practitioners, hospital clinicians and heath centres, would be helpful.

While having difficult conversations is partly our own responsibility, staff, who are there to help, should be skilled in initiating sensitive conversations regarding potential end of life issues. There should be mandatory training in communications skills for health care staff involved in this and related processes such as the breaking of bad news to patients and relatives and the initiation of discussion with relatives regarding patient preferences and relatives wishes.

Any legislation should require care providers and others engaged in establishing the care preferences of individuals to ensure conditions of privacy and confidentiality when initiating or undertaking a process of recording care preferences. This is particularly important in the context of older people being admitted to long-stay facilities, where access to private rooms may be few and the culture of personal discussions within earshot of other people may be predominant.

Processes will have to be put in place to review the extent to which peoples’ wishes are being recorded and/or acted upon. A system for review and learning about deaths at ward/unit level - not currently a routine practice - could assist in developing good practice in this area. There is also a need for a thorough review of resuscitation policies, practices and protocols, before any legislation is introduced, to ensure that the new law is not undermined by practices on the ground.

Nobody should die alone, in pain, frightened and in an alien environment. By taking control and writing down our preferences, we can put our minds at rest that we have made every effort to secure a comfortable death for ourselves. It also relieves any future pressure in the family, when in the absence of any direction, a spouse and/or offspring struggle to make the right decision on your treatment.

Making decisions in advance, does not mean that death will happen any sooner. But it might help you to secure the kind of death that you wanted while alive. Ultimately, what all of these movements and developments are saying to me, is that death is the most certain and personal things that will happen to me. While I do not intend to go around with it in my consciousness 24/7, I do believe that regularly visiting the notion of my death can enrich my life.

                  For The Anniversary Of My Death

Every year without knowing it I have passed the day
When the last fires will wave to me
And the silence will set out
Tireless traveler
Like the beam of a lightless star

Then I will no longer
Find myself in life as in a strange garment
Surprised at the earth

And the love of one woman
And the shamelessness of men
As today writing after three days of rain
Hearing the wren sing and the falling cease
And bowing not knowing to what

                                               William Stanley Merwin

Gabriel Byrne is an actor. 
He is a supporter of the Irish Hospice Foundation 
and patron of the Forum on End of Life in Ireland.