Quality in Living, Dignity in Dying

Most of us, we fear death like the children fear ghosts and seek for utopia forgetting that death is as natural as birth. In an essay “Of Death”, David Bacon writes, “Cogita quamdiu eadem feceris; mori velle, non tantum fortis aut miser, sed etiam fastidiosus potest” which translates as – “Consider how long you have done the same things; a man may wish to die not only because he is brave, or unhappy, but also because he is simply tired of living”. Jean-Jacques Rousseau, a Genevan philosopher in his book “Emile, or On Education” had stated – “To live is not to breathe but to act. It is to make use of our organs, our senses, our faculties, of all the parts of ourselves which give us the sentiment of our existence. The man who has lived the most is not he who has counted the most years but he who has most felt life.” It is understood from the past that satisfaction with one’s life is an inherent component of the quality of life.

euthanasia

In 2012, several newspaper covered the case of a 58 year old British former rugby player Tony Nicklinson suffering from Locked-in syndrome (following a stroke in 2005) when he went to the court for “right to die”. He described his life as “dull, miserable, demeaning, undignified and intolerable” stating – “It is misery created by the accumulation of lots of things which are minor in themselves but, taken together, ruin what’s left of my life. I can’t tell you how significant it would be in my life, or how much peace of mind I would have, just knowing that I can determine my own life instead of the state telling me what to do – staying alive regardless of my wishes or how much suffering I have to tolerate until I die of natural causes. I cannot scratch if I itch, I cannot pick my nose if it is blocked and I can only eat if I am fed like a baby – only I won’t grow out of it, unlike the baby. I am washed, dressed and put to bed by carers who are, after all, still strangers. You try defecating to order while suspended in a sling over a commode and see how you get on”. [1]

Deciphering his statement gives rise to the dilemma of “quality vs quantity” of living. What is more important – adding years to our lives or life to our years? There has always been a great debate of different philosophies regarding this. Let us review what the people think. A 2011 survey conducted through telephone in 7 European nations among more than 9,000 people explored their priorities when confronted with a serious disease and had less than a year to live. In the survey, 71% considered quality over quantity of life for the time left, 4% considered quantity as more important irrespective of the quality of life and the remaining 25% considered both as equally important.[2] It also shows that at-least in the context of terminal illness, it seems that majority of people prefer quality over quantity of life.

Today, biomedical equipment and medical research have advanced enormously, allowing physicians to prolong life in circumstances that were not possible in the recent past. In the recent era of medical advancement, dying and death have been thoroughly medicalized. But it is equally important to understand as a physician that ventilators, dialysis, defibrillators, feeding tubes, etc. do prolong death and not the life in certain situations. Besides, medical and surgical treatment, helping individuals live their final days in comfort and dignity is a major responsibility of medical profession. Dignity in medical ethics refers to the respect for persons and their autonomy. Autonomy refers to individual control of decision making and other activities. Both the dignity and the autonomy of a terminally ill patient are often undermined in healthcare settings.

We must have heard that in the ancient Athens, the magistrates supplied poison to those who demanded death under situations like illness or old age. “Whoever no longer wishes to live shall state his reason to the Senate, and after having received permission shall abandon life. If your existence is hateful to you, die; if you are overwhelmed by fate, drink the hemlock. If you bowed with grief, abandon life. Let the unhappy man recount his misfortune, let the magistrate supply him with the remedy, and his wretchedness will come to an end.[3] However, in many parts of the world, active form of euthanasia is incompatible with the physician’s duty legally as well as morally. The oath of Hippocrates has been held sacred and considered the gold standard of ethics in medicine for more than two millennium. The original version of the oath states, “I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect.” Physicians are entrusted for preservation of the life and not otherwise even if they were to decide that the patient were “better off dead”. However, passive euthanasia is generally accepted worldwide. DNR (Do not resuscitate) is considered as passive euthanasia and it means that the attending doctor is not required to resuscitate a patient if their heart stops. The main purpose of withdrawing or withholding of life-prolonging treatment and hastening the death being in patient’s own best interests. Euthanasia and Physician assisted suicide remains a topic of controversy and have different schools of thought in favor and in opposition.

Exploring further into the topic of euthanasia is beyond the scope of this writing and without further ado I would like to move to another aspect of dignified death. Euthanasia does not equate to dying with dignity. There is an alternative option that stands between the painful death and controversial euthanasia, i.e. the palliative care that would promote the quality of life while rejecting the idea of death on demand. “Though there may be an end to cure, there is no end to the care”. This statement is core to the idea of palliative treatment. When the ‘caring’ aspect of medical care is missed, patients and their family members are left unsatisfied. End-of-life interventions need to have a holistic approach with due considerations to the physical, emotional and spiritual needs of the terminally ill patients rather than focus predominantly on symptom control. Good physical symptom management and placement in the correct environment are important to meet the physical needs of the patient. Pain, dyspnea, constipation, nausea, and respiratory secretions can be managed and must be taken care of adequately as these allow for opportunities to work through other needs of the patients in ensuring a dignified death. Communicating, listening, conveying empathy, and involving patients in decision-making are central to the emotional needs and these must be promoted between the patient and the physician as well as his/her family members. The spiritual needs of the dying consist of the need to preserve their identity as a person until the end of life, and the need to know the truth about their illness. Other measures that are equally important are enabling of the financial management, allowing them to spend time with their family, and providing choices regarding the place of death. Religious concerns of the patient must be addressed as well.[4]

Finally, “dignified death” as quoted in peoples own words –
“To not have to suffer or to watch the people you love suffer as they watch you. It means peace and freedom to make a choice. To be able to die with grace and peace.”
“The ability to determine when and at what time I can end my life, comfortably and with dignity on my terms, without pain.”
“Being able to take that final choice out of the hands of the doctors and putting it squarely in my hands. There is something extremely comforting in knowing that I am in control of my future and my end of life decision.”
“To die at home with loved ones. It’s about the quality of life, not the quantity of life. And we as intelligent beings should be able to make those choices ourselves, not some stranger who knows nothing about us.”[5]


[1] Miller, D. (2012). My life is miserable, demeaning and undignified says locked-in syndrome sufferer as he asks High Court judges to give him the right to die. Mail Online. Available at: https://www.dailymail.co.uk/news/article-2161494/Tony-Nicklinson-euthanasia-My-life-miserable-undignified-says-locked-syndrome-sufferer.html [Accessed 19 Oct. 2019].

[2] Europe-wide survey reveals priorities for end-of-life care [Internet]. ScienceDaily. 2011. Available from: https://www.sciencedaily.com/releases/2011/03/110323214430.htm

[3] Westendorf J. Historical Look at Euthanasia [Internet]. Christian Life Resources. 2019. Available from: https://christianliferesources.com/2018/05/21/historical-look-at-euthanasia/

[4] Kennedy G. The Importance of Patient Dignity in Care at the End of Life. Ulster Med J. 2016 Jan;85(1):45-8. PMID: 27158166; PMCID: PMC4847835.

[5] What Death with Dignity Means – Death With Dignity [Internet]. Death With Dignity. 2017 [cited 2019 Oct 19]. Available from: https://www.deathwithdignity.org/news/2017/07/death-with-dignity-means/


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