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Authentic human communication and encounters have been trademarks of the fine tradition of hospice care, now often termed, end of life care. All of us have the fundamental human need to be known and affirmed by others. This is especially so for people experiencing the distress and often profound losses of terminal illness and their life drawing to a close.

A certain measure of an individual’s suffering and distress may always remain private and personal, to some degree inconsolable, and to be borne alone; but as the hospice movement so importantly brought to the forefront of end of life care: human individuals benefit enormously by being taken seriously, by being comforted with genuinely human attentive care and concern. Many would argue that this ought always to be centre stage in any endeavour of end of life care, with medicine and nursing taking on the role of complementary clinical support.

This is not to suggest that human vulnerability is intrinsically bad. In fact, it can be freeing: we can become someone new through falling into a place that is radically unfamiliar and that renders status and accumulated layers of personality less prominent. Notwithstanding, an important quality of care is that of cradling and companioning a person’s vulnerability with unassuming attentiveness and compassion.

In end of life care, patients need to be offered a quality of care that helps them face the reality of their own powerlessness; and empathy of care that can help keep them in the embrace of human community, so that their sense of selfhood is not trivialised or inconsequentially cast aside. Perhaps this is what people may find contradictory about medical care as it is sometimes administered in end of life care settings, medical care which in better times focussed on curing disease and enabling continuity of life.  Applied with these emphases in end of life care it can render a person merely an object of treatment (one of dubious benefit), and a bewildered, depersonalised and dehumanised self whose value feels cast into the oblivion of a medical, nursing, and administrative system that nonchalantly persists with a logic of its own.

Maybe this is why most people, given the choice and opportunity, would prefer to die at home – within the care of family and friends, even if that poses many practical difficulties and challenges.
The advent of palliative care and palliative medicine have brought much to the care of the dying, but their legitimacy and appropriateness will always need to be
measured in relation to the irreducible principle of respectful enquiry and patient and family centred care, whose questions will include: can you describe how you are experiencing what is happening to you? What can we do that you will find most helpful and supportive? How can we most assuredly respect and value you, your wishes, and your needs as a unique human individual?

Whatever advances occur in medicine and medical technology in the foreseeable future, people will still die, they will still require end of life care, and carers who both understand and respond appropriately to the deepest depths of their human experience.

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*Article excerpted from: In Search of a Good Death (see:  Publications/Podcasts)

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