The subject of death and dying should not be taboo and there needs to be more honesty around the topic from healthcare professionals, writes Terry Maguire
People seldom, if ever, die at convenient times. Edith was no exception, yet she would have been annoyed had she thought her demise, when it eventually happened, would inconvenience anyone, never mind me, whom she didn’t know. Her daughter, a close work colleague, meant I was duty-bound to attend her memorial service at the crematorium and it was an irony that the largely unplanned memorial at mid-day on Wednesday clashed with a long-planned training event on palliative care. Edith, diagnosed with cancer, was spared a prolonged debilitating illness, dying precisely one week later, having refused all interventions. The benefits of a swift death, painful as it was for the family, soothed their loss. At the Humanist ceremony before the coffin was lowered into the furnace, her daughter bravely recounted stories of her many stunning talents but accepted that she was now gone, sad as it was.
Edith’s commendable stoicism, and that of her family, was in complete contrast to a family I dealt with the previous day. They had been told, in what seemed a masterfully ambiguous and roundabout way, that their 84-year-old mother, let’s call her ‘Mary’, was dying. Such was the confusion that the GP spread, the family were convinced mother was on the road to recovery. The GP’s conversation was nuanced and conditional to the point of being pointless. The GP’s aim, as was his professional responsibility, was to inform the family at this most poignant and important of times that their mother was finished but in his timidity, he failed miserably.
When the eldest sibling told me the good news that mother was on the mend, I cautioned her enthusiasm, only to be strictly admonished. When she started palliative care treatment two weeks later, I received a tearful apology that was accepted with a caring hug — not politically correct but justified, given my service of over 30 years to Mary.
Death, for most, remains such a taboo. We just cannot have that conversation, so impressed are we that all can be fixed by the miracles of modern medicine. So heavily invested have national health services and politicians become in addressing sickness that it seems almost heresy to suggest that we can’t cure everything, which of course we can’t — unless we use cannabis oil!
In the modern era, we live such safe lives that most of us live long enough to reach the end of our natural lives, rather than get eaten by a wolf, speared by a savage or killed by an exploding shell. We are so good at avoiding sudden death that eventually our batteries run down, the wheels come off and the plumbing leaks dangerously. We transform from productive, sentient individuals to hopeless and helpless masses of bones and flesh.
Palliative care is not new and has been used for terminal cancer patient for decades. What is newer is its application to those with terminal conditions — heart failure, COPD, renal failure, dementia and neurological conditions.
Palliative care is not new and has been used for terminal cancer patients for decades
Unlike cancers, these conditions do not have the cliff off which most cancer patients fall and death’s timeline is easily predicable. Rather, the journey to death is a slog of minimal gradient, with pot-holes of more rapid decline from which the patient emerges to rally, to the amazement of family and physicians. This is never the road to recovery and there needs to be wider recognition of this natural fact.
Of the 15,000 deaths in Northern Ireland each year, 11,000 have palliative care needs. Where most individuals and families want deaths to happen at home, the vast majority happen in hospital, and in spite of efforts to support more home deaths, in our ‘End-of-Life Strategy’, little has changed since 2006 in terms of the place we make our appointments with death.
To support our final journey, most of the UK regions initially adopted the ‘Liverpool Pathway’, which defined what should be done and when. There was a backlash from families who felt that this approach was too callous and perhaps there was too much focus on death, so it was abandoned.
Medicines for most chronic long-term conditions need to be withdrawn when death is imminent, but there is little evidence that this is happening. Certainly most drugs, statins, endocrines, respiratory, etc, can and should be withdrawn, administering only those that specifically support palliative care. Antibiotics are a cause of particular passion. Giving an antibiotic while the patient is clearly dying may stop or delay the process of dying, leaving the end to another time but with no other material benefit to the patient.
Above all, when death is a few days away, there is a need to withdraw food, then fluids, and provide support and comfort only as-needed. Too many family members intervene and insist on oxygen therapy, PEG tube feeding and then saline drips. While these interventions are largely pointless, they are not sufficiently challenged by medical staff who seem to go with the notion that something positive should be done.
Both Edith and Mary are now gone. Each family has a different view of the palliative care process. Edith’s family were spared a long, lingering death, but Mary’s was not and the longer it went on, the more futile the interventions being tried were and rather than being caring were, in a distorted and unintentional way, cruel.
As a society, we need to talk more about death and dying and we need to do it more generally, so that when a family is faced with the huge challenges of the last few weeks of someone’s life, they can make decisions from a position of caring, informed understanding, rather than cruel emotional ignorance.