Ask any older adult in Malta about their end-of-life strategy and you get an embarrassed silence. “When the Lord wants to take you...” The topic of death might not be the most encouraged topic in Malta because the Catholic Church has a very exact meaning as to what is not allowed at the end of life.
Although we assume priests are experts in dealing with death, we might be surprised to find that they are not at all that comfortable with the topic. Some of my students in the master of science programme in California conducted research on this topic. We find that across all religions, faith leaders are poorly trained in end-of-life issues.
Most faith leaders reported little to no formal training, and even those who have been exposed to some training admitted that they are ill-equipped to deal with end-of-life issues of their congregation. And this finding was consistent for all religions studied.
We find the same story in other research. In a 2008 report by the Duke Institute on Care at the end of life, they also reported that faith healers were least comfortable and least prepared working with children, healthcare providers and providing grief support when death is unexpected. As you would expect, faith leaders reported being more comfortable with the rituals of their religion than with initiating discussions on end-of-life issues or training others to provide such support.
Kaye Norris and her colleagues reported similar results from two separate 1997 studies. One is a Gallup survey which describes how people may not always receive the level of support and spiritual care they desire, which is not surprising since respondents in the survey also reported low expectations of clergy. This finding was supported by a survey from Missoula community – 68 per cent describing themselves as religious or spiritual – which reported that people as they near life’s end are more likely to rely for support on, in order of importance, a spouse, children, immediate family members or relatives, friends and then on a faith leader or faith community.
Priests’ lack of education and training about end-of-life issues and grief counselling is an obstacle that prevents them from giving more effective support to the dying
Priests’ lack of education and training about end-of-life issues and grief counselling is an obstacle that prevents them from giving more effective support to the dying and the bereaved in Malta. The surprising result is that all faiths seem to lack end-of-life training. But at least the issue surrounding end of life has entered into a discussion. Especially around the highly divisive issue of assisted end of life.
Some religions embrace the option. Such as the Unitarian Universalist, United Church of Christ, Evangelical Lutheran Church of America, Methodists, Mainline and Liberal Christian denominations, Episcopalian (Anglican) Unitarian, Methodist, Presbyterian and Quaker movements. Even the American Baptists Churches – in contrast to the Southern Baptist Convention – support the right to decide.
It is not that we should completely eliminate religion from any discussion relating to end of life. As Sam Harris argues in the 2004 book The End of Faith: Religion, Terror and the Future of Reason: “We need religion because people expect their religion to console them in moments of need.”
The issue is that with the medicalisation of death there is a passive acceptance by priests and other faith leaders that death is a medical event rather than a spiritual journey.
But medicine is relying on religion to guide it through this moral obstacle. The idea that human life is sacred, given by God and taken by God, remains useful in distinguishing murder as wrong, but does not help those who are dying in pain. The Church allows for “discontinuing medical procedures that are burdensome, dangerous, extraordinary or disproportionate to the expected outcome can be legitimate; it is the refusal of ‘over-zealous’ treatment. Here one does not will to cause death; one’s inability to impede it is merely accepted.”
So although receiving pain medication is allowed, it should not cause death.
Despite the overwhelming desire to not die in pain and despite the primary desire for those who are dying in hospital to receive adequate pain and symptom management, most of us will still die in pain.
We do not know how many people die in pain in Malta. A British study found that over a third of dying patients die in pain. Nearly eight out of every 10 hospital deaths occurred without a formal pain management, while more than eight out of every 10 older nursing home residents experienced untreated or undertreated pain at the time of death.
Today, the majority of older adults still die in pain. Physicians look at religion and the law for guidance, whereas religion and especially the legal system depend on physicians to tell them what is needed.
At the end, older adults continue to die in pain. We continue to fear dying because we cannot dictate how we want to die when “the lord wants to take me…”
Mario Garrett was born in Malta and is currently a professor of gerontology at San Diego State University in California, US.