Medical Matters: Documenting decisions about end-of-life care

Many moons ago I worked in a hospice. Well, to be accurate, I was the first doctor on the homecare team at St Francis Hospice in Raheny, Dublin.

There was no building back then, just a Portakabin in the grounds of the Capuchin friary. We had no beds of our own, and the beautiful building that is there now was merely a twinkle in the architect’s eye.

However, what I and a group of dedicated nurses achieved was to enable, in tandem with GPs and public health nurses, people from all over north Co Dublin to die at home.

While it was tough going at times, it was also extremely rewarding work.

People face their impending death in so many different ways: from a kind of “constructive denial” to an amazing acceptance best exemplified by one man who kept a diary of his last few months.

I was really humbled when his family gave it to me after he had died.

Taboo

This was in the late 1980s, at which time there was still something of a taboo about cancer. Some relatives spoke in hushed tones about the “Big C” and occasionally families would ask us not to tell the person they had cancer, which, of course created an ethical dilemma.

Others openly planned their own funerals, which, while sad at times, did seem to be a liberating experience.

I am reminded of my hospice days by a most interesting documentary to be broadcast on RTÉ1 television tonight at 9.30pm. Way to Go? Death and the Irish was funded by the Irish Hospice Foundation (IHF) in support of its Think Ahead campaign and produced by New Decade TV and Film.

Think Ahead is a citizen-led advance planning tool which has been developed by the National Council of the Forum on End of Life in Ireland and the IHF.

It guides people into looking at and recording all aspects of end of life: legal, economic, healthcare preferences and wishes for organ donation and funeral arrangements.

The idea is to get us all to think about our own deaths and to consider making our preferences known to others.

Comfortable

As many of the contributors to the documentary note, we may be reasonably comfortable about dying when it comes to other people, but less so when it comes to our own demise.

There are some key issues worth considering. Are you happy to have chemotherapy for cancer in all situations, or might you wish to record any caveats about the issue? Is there a point in any illness you might develop in the future at which you would – or, indeed, would not – wish that a “do not resuscitate” order was made by your doctors?

The detail

Then there is the detail of your funeral. Burial or cremation? Do you want a religious or a secular service? You could be doing your relatives a huge favour, especially if you were to die unexpectedly, for them to be able to access a Think Ahead form that you have filled out.

Research published recently in the Irish Medical Journal by Dr Brendan O'Shea and colleagues from the Trinity College GP training scheme is also reassuring.

Some three-quarters of the 100 people who were approached by their GPs said they did not find completing the form upsetting while 83 per cent had subsequent discussions with family members after reading the Think Ahead document.

Tonight's film, which is narrated by Norah Casey, contains some fascinating individual insights. One woman speaks about the value for her of having a "midwife for death"; someone to smooth your exit from this world in a reversal of the birthing process.

There are some lovely vignettes from comedian Dave Allen, GAA legend Mícheál Ó Muircheartaigh, and a poignant contribution from the late Nuala O’Faolain.

This documentary is well worth watching. See thinkahead.ie.

[ mhouston@irishtimes.com ]