To die a dignified death

Stephen Chen 陳紹德

HK Pract 2007;29:217-219

On 17 August 1935, Charlotte Perkins Gilman, writer and an advocate of the right-to-die, took an overdose of chloroform to pre-empt a perceived horrific ending from cancer. Her suicide note is still a relevant plea nowadays for the right to die in dignity when all pertinent treatment fails with the following message.

"When all usefulness is over, when one is assured of an unavoidable and imminent death, it is the simplest of human rights to choose a quick and easy death in place of a slow and horrible one."

Therein for some lies the crux of the advocacy of the right of patients with terminal illnesses to choose to die in a dignified way. The importance of patients (and their immediate relatives) being sufficiently informed about their incurable clinical conditions and given the right to choose to bow out of this world, whether bedridden or wheelchair-bound, yet comfortably and gracefully, is well-illustrated in an article written by a British General Practitioner.¹

Voluntary euthanasia has until recently been avoided by the local media and medical profession as a topic for discussion due probably to its controversial nature and the Oriental tendency to circumnavigate or sidestep confrontational issues. Nevertheless, it is precisely because of the ethical, medicolegal and religious complexities, as well as the human rights concern involved that we should endeavour to tackle the issue head-on. It is only with open uninhibited and well-informed discussions that the barriers of bigotry can be broken down, consensus of opinion reached and empathic understanding attained.

World media interest in the topic has recently been rekindled by a widely reported case² in Italy, where a male patient (Piergiorgio Welby) paralyzed by progressive muscular dystrophy failed to win a court battle for the right to die, but succeeded in securing his doctor's (Mario Riccio's) consent to ending his miserable existence by switching off the respirator - Welby's unwanted raison d'tre. The attending physician gave the patient a sedative prior to switching off the respirator, on which Welby's bedridden life totally depended. Having expressed "thank you" three times to his wife, friends and doctor at the outset of his chosen finale, Welby died peacefully and presumably comfortably 45 minutes later. A politician (well, who else would indulge in such opportunism!) in Italy has accused Dr Riccio of homicide and called for his arrest, but it is hitherto uncertain if the humanitarianism-motivated doctor will be charged with any offence.

On the Eastern front, a 28 year old girl (Li Yan) in Liaoning Province³ in mainland China submitted a request for voluntary euthanasia to the Central Government via a representative member of the Central People's Consultative Committee, whilst simultaneously sending her death wish to the Central Television Studio for broadcasting. Li is also a sufferer of progressive muscular dystrophy and since one year old, has relentlessly deteriorated to the current status of being able to only slightly move her head and a few fingers. She is totally reliant on her mother for feeding, urination, defaecation and cleansing. Even when sleeping in bed, she is dependent on others to turn her more than ten times nightly so as to avoid bedsores.

"I love life, but I do not wish to live."
(我愛生命，但我不願活。)
"A human being not only has the right to live, but also the freedom to die."
(人有生的權利，也有死的自由。)

These two quotes have been translated verbatim from Li's Chinese text and this author takes responsibility for any inaccuracy contained therein. She wants to end her already miserable existence before her parents die for obvious reasons expounded above; and also when she can still sit in a chair and has the capacity for speech, in short, when she still possesses a certain degree of personal dignity. Li vowed she would donate all her functional organs to medical research if granted her death wish. When asked what she would do if her plea for voluntary euthanasia was rejected, Li indicated that the only alternative is for her to starve herself to death (surely a slow painful one and seemingly inhumane to any bystanders) because she has lost all ability to hold any weapon to kill herself more instantly.

The two cases in opposite corners of the world highlight the dilemma doctors face when managing patients with terminal illnesses. Whilst it is a patient's basic human right to decline life-sustaining treatment, is it ethically correct for doctors to partake of voluntary euthanasia or assisted suicide?

Medicolegally, a prerequisite for any treatment is a patient's informed consent, unless in dire life-saving situations. If a patient is mentally incapable of giving such informed consent, then the closest next-of-kin should assume the responsibility. Doctors cannot impose unwanted treatment, however justifiable or desirable, on reluctant patients; otherwise the criminal charge of assault or grievous bodily harm may be filed. Doctors may disagree with patients' decision not to undergo certain treatment, but professionally they should respect the patients' right to such tenet. Most countries recognize a patient's legal right to refuse medical treatment, and in a few, namely, the Netherlands, Switzerland, Belgium and the American state of Oregon, doctors are even allowed to assist patients with medicolegally justifiable reasons to achieve voluntary euthanasia by means other than stopping on-going treatment. In other words, doctors in these minority countries are allowed to partake of assisted suicide, thus enabling patients with terminal illnesses to die in whatever personal dignity they still retain, i.e. "a quick and easy death in place of a slow and horrible one".

Let us consider Welby and Li in juxtaposition as the two cases bear some resemblance to each other. If Dr Riccio had not switched off the respirator because of his patient's refusal to undergo the said treatment any further, Welby would probably have had to starve himself to death, thus a "slow and horrible one" and surely a much more inhumane way of ending one's life. Li also threatens to starve herself to death if her request for voluntary euthanasia is not officially granted. However, in Li's case, she is not yet reliant on a life-sustaining respirator which can be simply withdrawn. To enable Li achieve her goal, the participating doctor would be involved in an act of assisted suicide, which is still illegal and medico-ethically frowned on in most countries.

In 1980 Pope John Paul II approved the Declaration on Euthanasia which states that refusal of burdensome medical treatment "is not the equivalent of suicide".⁴ The Catholic Church has for a long time subscribed to the view that use of "extraordinary" or "disproportionate" ways to prolong life is not obligatory. Furthermore, the refusal of such burdensome treatment "should be considered an acceptance of the human condition, or a wish to avoid the application of a medical procedure disproportionate to the results that can be expected, or a desire not to impose excessive expense on the family or the community".⁴ Nevertheless, the Catholic Church is still opposed to voluntary euthanasia and assisted suicide per se.

The Netherlands was the first country to legalize voluntary euthanasia and has since witnessed a change in government; but there has been no relevant statutory repeal despite allegations from critics that such legalization has engendered a breakdown of trust in the medical profession and other adverse sequelae. According to Peter Singer, Professor of bioethics at Princeton University, "the Dutch know that legalizing voluntary euthanasia has improved, rather than harmed, medical care, and they want the possibility of assistance in dying".² As Benjamin Franklin (1706 - 1790) once said, "in this world, nothing is certain but death and taxes", perhaps we should all spare some time to ponder over Professor Singer's soul-searching question on the possibility of assistance in dying -

Professional competence is multi-dimensional; it is not possible to have one single test that can validly and reliably measure all the required indicators. Multiple methods have to be used to determine whether a candidate has achieved the required level of competence. An adequate number of questions and examiners should be used to improve the reliability. Clearly defined assessment criteria are essential to ensure fairness. Standards should be set at an absolute level to assure the quality of the profession.

Assessment is a complex form of measurement. All measurements reflect not only the true result (the candidate's competence) but also variations that are related to the assessment content and context, examiners and other unknown factors. Research has shown that candidate factors explain no more than 50% of the variance in the results.⁷ No assessment is perfect; we can only try to make it as good as possible through a rational choice of methods and questions, fair setting of criteria and standards, and adequate examiner training.

"Isn't that a choice that everyone should have?"²