Quality of life and death

Quality of life and death

The night was long, but strangely bereft of anxiety and hopelessness. My sisters and I sat around my mother’s bed. After her second stroke we had watched a steady and progressive deterioration in her condition and now she was slipping away. There was a difference, however: Amma was at home with us, her pain was controlled and she was kept as comfortable as possible by following instructions of the palliative care team. Above all she was at peace with herself and her Maker. We had also shared a few beautiful moments and heartfelt sentiments with her. The dawn ushered in the first few rays of the sun through the window. We held her hand as she breathed her last…
                                                                             - A family’s experience                               

Death is an inevitable reality for all. The only certain event after birth is death. We do our best to make birth a safe and good event. However, there is much to be desired in the way we die. According to medical ethics doctors have a dual responsibility: to preserve life and to relieve suffering. As a person approaches the end of life, relief of suffering is the more important of the two, especially as it becomes increasingly impossible to preserve life.

The four cardinal principles of medical ethics are: patient autonomy (or respect for the patient as a person), beneficence (doing good), non-malificence (minimising harm) and justice (including the fair use of available resources).  These must be applied against the background of respect for life, on the one hand, and acceptance of the ultimate inevitability of death, on the other.

Doctors should certainly strive to preserve life but, when such attempts turn biologically futile, it is equally important for them to provide comfort during the dying process. Overlooking this balance can result in untold suffering for both the person who is dying and for that person’s family.

As Dame Cicely Saunders, pioneer of the modern hospice and palliative care movement, said, “How people die remains in the memory of those who live on.” A bad death complicates the grieving of those left behind. Palliative care emphasises quality of life, which includes quality of death.

The debate on euthanasia intensifies now and then and the collective wisdom over the ages has rightly kept this at bay. With only a handful of countries allowing euthanasia, it is illegal everywhere else. Dignity in death can be provided by good palliative care, which aims to restore the shattered comfort and dignity of people affected by a terminal illness by alleviating their suffering. When such people are supported by holistic palliative care they invariably want to live.

The principles of a good death — as outlined by ‘Debate of the Age Health and Care Study Group’ published in the British Medical Journal in January 2000 — includes the following:  

*To know when death is coming and to understand what can be expected
*To be able to retain control of what happens
*To be afforded dignity and privacy
*To have control over pain relief and mitigation of other symptoms
*To have choice and control over where death occurs (at home or elsewhere)
*To have access to information and expertise of whatever kind is necessary
*To have access to spiritual or emotional support, as required
*To have access to hospice care in any location — not only in hospital
*To have control over who is present and who shares the end
*To be able to issue advance directives which ensure last wishes are respected
*To have time to say goodbye

These principles must, of course, be applied in the context of regional and cultural backgrounds. We must all do our bit to make death good. As individuals facing death we can express our wish that we do not want our life to be prolonged by inappropriate interventions — and even leave clear instructions to this effect.
 As health professionals we should, through joint multi-professional consultation, respond to the complex decision that death is imminent and change focus to provide comfort in dying.

This is possible by applying existing, evidence-based guidelines, such as the Liverpool Care Pathway for the dying. As a community and a society we must accept the inevitability of death and let nature take its course. A peaceful and dignified death surrounded by loved ones can be a reality if we all work towards this.
In the words of Rabindranath Tagore, “Death is not extinguishing the light. It is putting out the lamp because dawn has come.” We can all find meaning in death when it is good.                                                                                     

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