What makes a 'good death'?

 

Dying patients who are sedated too much can be deprived of the chance to make their farewells to loved ones

IN LEO TOLSTOY’S famous novella The Death of Ivan Ilyich, the title character is a noted magistrate in Russia who is suddenly struck down by a terminal illness.

In his dying days, he screams in agony and rails against his misfortune. He is notably blind to the fact that he has lived a selfish life, putting his career before his wife and children.

Though he is in great pain, in his last hours he finally gives in to his fate and becomes reconciled to his family.

The story is cited in a recent paper by the Lancetwhich addresses the controversial issue of pain control in terminally-ill patients.

The article in the Lancetsays there is such a thing as a “good death” and the desire, especially among relatives to control pain whatever the cost, can have unintended consequences.

Chief among these is that many dying patients do not get a chance to make their farewells at the end of life because they are too sedated.

The issue of the “good death” has been addressed in a recent discussion document issued by the English Catholic bishops entitled A Practical Guide to the Spiritual Care of the Dying Person.

Terminally ill people can achieve the “good death” by “setting things right as much as they can, making peace, saying their goodbyes”, the document says.

It warns that overtreatment of pain can “render people unconscious or semi-conscious when this is not necessary for effective symptom treatment”, adding that “some people will prefer less comfort for more lucidity”.

Dr Stephen Higgins, a consultant in palliative medicine in Tallaght Hospital and at Our Lady’s Hospice in Harold’s Cross, says the document encapsulates many of the issues facing those involved in palliative care.

Higgins will be speaking at a conference on palliative care to be hosted in Our Lady’s Hospice tomorrow. It will seek to address the fact that although 90 per cent of patients who receive palliative care have cancer, the disease accounts for less than a third of all deaths.

Higgins says the Catholic Church’s discussion paper is a “very good document”, adding: “I’d struggle to find anything in it that I would disagree with.”

He is particularly impressed with the contention that sedation which leads to a lack of consciousness is unnecessary in most cases.

“There is a perception that there is a great struggle within palliative care between symptom control and sedation. It is an issue sometimes, but is very much in a minority of situations.”

Higgins says the sleepiness that people often associate with sedation is frequently the natural process of dying.

He believes it is critical that the wishes of the patient should be sought when they are well enough to issue instructions about how they want to be treated in their final days.

“We try to get a steer every time from the patients or from the family. The ‘good death’ varies. It is not the same for everyone,” he says.

“It is rare that we reach a stage where the painkillers are going to cause so much trouble that the person is going to be sedated.”

Geriatrician Prof Desmond O’Neill says the story of Ivan Ilyich is a perfect illustration of the importance of people being sentient in their final hours.

“There is an issue of undertreatment of pain out there, but things are getting better.

“The polar opposite to the threat of undertreatment is a monosomatic overtreatment and not looking at the wider spiritual picture of families and other people,” he says.

“It is helpful that somebody says there is a wider picture here and remembers that it is not just pain, and I think that is very sensible.”

He believes that the desire to control pain is often a well-intentioned one among the relatives of terminally-ill people, but it can often be contrary to the wishes of the dying person.

“A child might be concerned about their mother’s pain, but their mother might have other priorities. The danger is that the family will want to have their hand on the steering wheel and they are not listening to the older person,” he explains.

The Catholic Church in Ireland has made its own contribution to the end-of-life care issue with a submission to the Law Reform Commission, entitled Advanced Directives for Care, and also to the Irish Hospice Foundation’s Forum on End of Life in Ireland.

Fr Kevin Doran, the Irish Catholic Church’s spokesman on bioethics, says part of the spiritual dimension of dying is to allow the patient come to terms with their own death in their own way.

Fr Doran says he has come across dying people who were too sedated to participate in the last rites.

“We were going through the motions. We weren’t able to pray with them and help them in the process of dying,” he says.

Anything which unnecessarily reduces a person’s awareness diminishes the chances of them participating in one of the key moments in their journey of life, he believes.

“Part and parcel of palliative care is to allow people to deal with the reality of their death in a fully personal way so their death is not just something that happens to them,” he says.

“It is important that they are not torn from life so to speak, but rather that they take leave of their lives and their loved ones in a calm, less traumatic way.”


The 17th Moving Points Conference hosted by Our Lady’s Hospice in collaboration with the Irish Hospice Foundation takes place at the hospice’s education and research centre in Harold’s Cross, Dublin 6W, tomorrow and Thursday, www.hospice-foundation.ie