The Last Taboo
Sue Smith, RGN, RHV (Rtd)
As November is Remembrance Sunday month, it seemed that talking about death is not inappropriate...
But why, with nurses, should 'talking about death' ever be inappropriate? I ask this question in all seriousness, because back in August 1983 my first published article appeared in Nursing Mirror.
The title was 'Break the Taboo' and this was the opening sentence:
"Polite conversation 50 years ago avoided sex, religion and politics. Today these are commonplace talking points. Paradoxically, death, once openly acknowledged by large funerals, drawn curtains and black armbands, in now a taboo topic."
I wrote this 32 years ago, and concluded:
"Perhaps I am lucky to be a member of such a caring profession, but as there are so many nurses in society we should try to enlighten attitudes towards grief, bereavement and death. It is the one experience we will all face."
But I fear our attitudes are still unenlightened--because death is now often perceived as medical failure. When it becomes inevitable...we try to avoid its approaching reality.
That article was prompted by the sudden and unexpected death of my clever, fit, much-loved and respected father at 7.10pm on a Sunday night.
At 9am the next morning, I was due to study 'Bereavement' on the Health Visitor Course at college.I was in class but did not contribute anything, and a chill settled. After class the tutor took me aside and my tears flowed. That week I learnt more about bereavement than anything in any lecture. Fellow students, even those I did not know, shared experiences with me and I felt welcomed into a club I never knew existed.
My father was an engineer, but he had a natural gift for teaching. As someone remarked months later: "It was his last gift to you, dying the night before you were due to tackle 'bereavement'." Talk about experiential learning!
But it was true. Nurses' attitudes to dying and death became a continuing interest. Although Dame Cicely Saunders had done so much to improve the care of those dying of cancer, the long-term dying of those with incurable conditions, such as Parkinson's Disease or Multiple Sclerosis, did not get the help needed.
The difficulty seems to be in understanding the trajectory of this ever-increasing range of conditions. Recognising the stage at which they become 'terminal' is not easy--and not welcome.
Perhaps this is what makes everyone involved in health care shy away from talking about death.
It is so much safer to be ever-optimistic and look at what the patient can still do, rather than anticipate what they may not be able to do in a few months, weeks or days time. It requires a very sensitive and perceptive approach to recognise when the patient, or their nearest and dearest, tip into the 'need to know' frame of mind. By this, I mean that there are many people who actually want the chance to address any 'unfinished business', whether personal, practical or financial. For many of us, as nurses, it is so much easier to avoid the issue altogether, and chivvy people into an unrealistic and rather cruelly optimistic false hope.
Is it because we do not have the time? Or is it because it touches on our own fear of the unknown? Or is it because we just do not know what to say? I think the answer to the latter is: it is not our words that patients want to hear--they want us to listen. They want the chance to voice any fears, or take control of things that they can. It could be that the acknowledgement of a last request makes the difference between a peaceful death--or dying in mental agony.
The path begun at my father's death led me to organise conferences on dying and death, and the increasing ethical issues surrounding death in our hi-tech, medically advanced era--where death is so often seen as a failure (and with the now attendant fear of litigation).
But these issues need to be brought out into the open and discussed in the profession. It is not just the issue of 'assisted dying' that needs discussion. It is more about 'allowing people to die', even though we have the advanced technology that can seize them from the jaws of death. Sometimes with their eternal gratitude-- but not always.
I did the research for my MSc in Medical Anthropology through observation and nurse interviews in an Intensive Care Unit. I wanted to study nurses' attitudes to dying and death in a unit where the outcome for most of their admissions could go either way--recovery, or death.
One of the saddest 'cases' was of a 90 year old woman who had been mugged in her home. On admission she had been resuscitated, intubated and was on a plethora of machines and drugs to keep her alive. She had never regained consciousness, and was treated by the physiotherapists every 4-6 hours to keep her chest clear.
Just imagine: you have been attacked in your home, and have the painful injuries and bruises to prove it. You are 'saved', and then have to suffer what must feel like a similar, chest pummelling attack many times every day, but now in the name of life-preserving therapy. She was unmarried, and didn't have any visitors. Although her nurses were relatively caring, she was unresponsive, so the last few weeks of her life must have been a continuing hell.
Many issues come into play here. For example, if her mugger was caught, and she had died almost immediately--there would be a murder charge. If she 'survived' for a certain length of time, it would be a manslaughter charge.
What are we--the collective medical/nursing 'we'--doing here? Can we argue any 'quality of life' for this patient?
Another patient's heart had stopped during aplanned cholecystectomy. He had been resuscitated 'on the table' (nobody wants a death in theatre) and transferred to ICU. He regained consciousness and appeared to be recovering. But gradually his kidneys failed and he needed dialysis. He developed an infection and his body systems gradually broke down, and he was in an induced coma. At every stage 'everything possible' was done to maintain his physical life. His family came every day. They were in limbo and no one would talk about death. He died six weeks later--his body grossly changed with all the extra fluid, and the tightening of his paper-thin skin. He was no longer the man his wife, children and grandchildren recognised from just two months before.
I was an observer (allowed in because I had been a nurse, and was still registered, but not as a working nurse on the unit).
One of the aspects of my research that worried me most, was the lack of any opportunity for the nurses to talk about the sensitive emotional and ethical issues surrounding the death of their patients. Again, time is a factor, and maybe nurses would find it just too difficult after a heavy shift.
What do readers think?
Until we grasp the nettle and encourage discussion of the reality of death, many people will continue to die in a way not unlike guinea pigs.Ironically in the 'laboratory' of intensive care, where the intention is to save lives. We have to learn to change the perception of death as failure.
I see preparing for as good a death as possible to be as important to me, at this stage of my life, as preparation for childbirth was 40 years ago.
Death really is the one experience guaranteed to all of us--no exceptions. Carpe diem!
"It was his last gift to you, dying the night before you were due to tackle 'bereavement'."