Sunday, 17 December 2017

Euthanasia: A good life to the end, or a quick death

The Victorian state of Australia has legalised euthanasia. Concerns about a slippery slope are real. The alternative to euthanasia is palliative care to alleviate suffering.
By Chong Siow Ann, Published The Straits Times, 16 Dec 2017

The Australian state of Victoria recently legalised assisted suicide. This law, when enacted, will enable a resident who has lived in Victoria for at least a year, and who has a terminal, incurable illness with a life expectancy of less than six months, to obtain a lethal drug to commit suicide.

Victoria has now joined the ranks of the Netherlands, Canada, Belgium, Colombia and Luxembourg which have legalised euthanasia. Several states in the United States, including California, Washington, Vermont and Oregon, have passed laws allowing assisted suicide.

In physician-assisted suicide, a physician supplies a lethal drug or suggests a means by which a patient will use it to complete the act that brings about death.



In euthanasia, the physician performs the act of directly injecting the medication to cause death. These terms do not apply to a patient's refusal of life-support measures, or to the request for these life-prolonging measures to be withdrawn.

We would think that it would be terminally ill patients with grievous and irredeemable pain who are most likely to want physician-assisted suicide or euthanasia, but the laws permitting this were mainly motivated by the concerns of the "worried-well" - by healthy people who fear the unknown future and the possibility of dying painfully, and who want that control and assurance that they can have the legalised means to end their lives if things become unbearable.

But empirical studies of physician-assisted suicide and euthanasia in the Netherlands and the United States indicate that pain played a relatively minor role in motivating requests for assisted suicide. These studies showed that in only 11 to 32 per cent of all cases was pain the reason for requests for euthanasia.

Depression, general psychological distress, and fear of a loss of control or dignity, of being a burden, and of being dependent on others, were the common reasons. This prompted oncologist and bioethicist Ezekiel Emanuel to ask (in an article published in The Atlantic) if the wishes of these patients should then be granted. He followed with this riposte: "Our usual approach to people who try to end their lives for reasons of depression and psychological distress is psychiatric intervention - not giving them a syringe and life-ending drugs."



SLIPPERY SLOPE

One of the biggest - and perennial - concerns of legalising physician-assisted suicide and euthanasia is that it will lead to the "slippery slope".

The slippery slope argument contends that even a relatively conservative law like the Victorian model would evolve over time, becoming more permissive and with the right to receive assisted suicide extending to many others: from physician-assisted suicide for the terminally ill and fully consenting adults to euthanasia for patients who cannot give consent - the unconscious, severely disabled children, and the mentally ill.

And it seems to be happening in a couple of countries.

In the Netherlands, which was the first country to legalise euthanasia in 2001, there is the Groningen protocol. Written in 2004 at the University Hospital of Groningen, it was authorised by the Dutch Association for Paediatric Care the following year as a national guideline to help doctors decide when to actively end the life of a newborn. These include infants with severe underlying disease who will die despite optimal care; infants with severe brain abnormalities or extensive organ damage who are dependent on intensive care; and infants with a hopeless prognosis who do not need intensive care but experience what parents and medical experts deem to be unbearable suffering. An example of this last group would be a child with the most serious form of spina bifida (a congenital birth defect of the vertebrae and spinal cord) who is expected to have an extremely poor quality of life despite many operations.

Belgium, which legalised euthanasia in 2002, further amended its law in 2014 to allow for the euthanasia of terminally ill children. The law also allows euthanasia for patients suffering "unbearably" from any "untreatable" medical condition, terminal or non-terminal, including mental disorders. The law has been used for patients with autism spectrum disorder, eating disorders, bipolar disorder, and major depression - which, as a psychiatrist, I find profoundly disturbing.

Psychic suffering is often temporary and with proper treatment, patience and time, would lessen. I would consider the labelling of even severe mental illnesses as "untreatable" truly questionable, as the course of these illnesses may fluctuate; the prognosis is uncertain; and in no way would mental illnesses be considered "terminal". Further, the presence of a mental disorder could affect the mental capacity to make an informed decision.

The slippery slope argument also raises a practical concern: If assisted suicide were legalised, there must be regulations to ensure that a patient's decision for suicide is informed, competent, and made without any external coercion. There must be a tight process of robust vetting, assessment and consultation. The doctor has to provide detailed information, including the diagnosis and prognosis, and possible treatment options, and assess the patient's mental capacity to make that fateful decision.

But the danger is that such regulations and safeguards cannot be adequately enforced in practice, and that particularly vulnerable patients - for example, the aged and those with severe disabilities - might be pressured into accepting assistance in dying when they do not really want it.

There may be that additional indirect pressure when the onus of responsibility is being shifted to these patients who may then be seen to have the power to end their suffering; and refusing would be seen as the patient's own doing - something which might even engender resentment in overwrought caregivers who are physically, emotionally, and financially exhausted.

PALLIATIVE CARE

I have lived long enough and worked long enough as a doctor to witness heart-wrenching cases of individuals who suffered a slow and difficult death, and in such instances, assisted suicide and even euthanasia seemed to be the most humane option.

But I'm troubled by the potential effect that the legalisation of physician-assisted suicide and euthanasia would have on doctors should such measures become routine and we become too comfortable in prescribing and giving injections to end life. It seems anathema to what doctors do, and violates a core tenet of the Hippocratic Oath that we had sworn the day we became doctors, which is "first, do no harm".

And, it could also undermine the nature and quality of the doctor-patient interaction which is a relationship that is built on trust; most dying patients, even when suffering, would also want to live as long as possible and expect their doctors to respect this and trust that they would help them and not push them to end their lives. We certainly would not want to raise the spectre of Jack Kevorkian, the Michigan pathologist who went on a zealous crusade to assist some 130 people to end their lives with his makeshift "suicide machine" that administered a lethal injection to them or allowed them to inhale carbon monoxide before he was convicted of second-degree murder and imprisoned.

Professor Ezekiel Emanuel writes: "Providing the terminally ill with compassionate care and dignity is very hard work. It frequently requires monitoring and adjusting pain medications, the onerous and thankless task of cleaning people who cannot control their bladders and bowels, and feeding and dressing people when their every movement is painful or difficult. It may require agonising talks with dying family members about their fears, their reflections on life and what comes after, their family loves and family antagonisms. Ending a patient's life by injection, with the added solace that it will be quick and painless, is much easier than this constant physical and emotional care."

And he warns that resorting to this quick way of exiting, which also obviates all this hard work, would be tempting and makes it difficult not to use it, particularly in an overburdened healthcare system.

In his book Being Mortal, surgeon and writer Atul Gawande also cautions that this "capacity" of assisted suicide could "divert us from improving the lives of the ill". He thinks that the growing number of assisted suicides in the Netherlands, where the system has existed unopposed for decades, is not a measure of success but a measure of failure.

He posits that it could be because the Dutch have been slow in developing a system of palliative care and this tardiness stems from their entrenched system of assisted suicide and euthanasia that might have "reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill".

The goal of assisted suicide/euthanasia and palliative care is purportedly to relieve suffering, but their means are different: the former does it by stopping life while the latter tries to reduce suffering by treating physical, psychosocial and spiritual distress.

A study published in the New England Journal of Medicine in 2010, which evaluated the potential benefits of early palliative care among a group of patients with terminal lung cancer, described the "specific attention" given to assessing "physical and psychosocial symptoms, establishing goals of care, assisting with decision-making regarding treatment, and coordinating care on the basis of the individual needs of the patient" as part of palliative care. The researchers found that those who received palliative care not only chose less aggressive therapies but also lived longer and had better quality of life compared to those who received the usual care.

The truth is that even if the most terrible pain in a terminally ill patient can be eased, there could be other distressing symptoms like nausea that is the side effect of powerful pain-relieving medication, extreme fatigue, breathlessness, the humiliating loss of bodily functions, and the terror of impending death.

But these may be indicators that not everything possible has yet been done and perhaps, we have to hunker down and do more of the sort of hard work described by Prof Emanuel.

If we could ensure that terminally ill patients have access to good palliative care and compassionate mental health attention, then we would probably think less and want less of assisted suicide and euthanasia.

The medical profession is dedicated to preserving life when there is hope of doing so, and even if there is no more hope and death is imminent, we should and could alleviate suffering. "Our ultimate goal, after all, is not a good death," Dr Gawande said, "but a good life to the very end."

Professor Chong Siow Ann, a psychiatrist, is vice-chairman of the medical board (research) at the Institute of Mental Health.





Let's talk about Advance Care Planning to die with dignity
Such planning helps patients and families talk through options in end-of-life care
By Philip Yap Lin Kiat, Published The Straits Times, 16 Dec 2017

Just last month, the state of Victoria in Australia legalised euthanasia with effect from 2019. Proponents appear to be driven by a human rights perspective to uphold self-determination and to relieve suffering.

While euthanasia is illegal in Singapore given its inherent intent to end life, Advance Care Planning (ACP) has been advocated in Singapore, particularly for people suffering from advanced illness to allow them to make important future healthcare decisions before they lose the capacity to do so.

The issues encompassed in ACP include life-sustaining treatments in Do Not Resuscitate (DNR) Orders and artificial ventilation, tube feeding, use of antibiotics in terminal illness, and one's preferred place of care and death.

ACP is pertinent not only for people with a prognosis of weeks to months, such as in life-limiting advanced cancers; it is also relevant for those with a protracted course of an incurable illness that may span several years in neurodegenerative diseases such as dementia and motor neuron disease.

ACP not only promotes self-determination in enabling people to decide autonomously what they desire for themselves, but it also helps family and friends navigate complex decisions for their loved ones, and allows the healthcare profession to safeguard ethical practice that upholds autonomy in the best interest of the patient.

In essence, ACP provides a guide to the journey from serious or terminal illness to death, helping patients and family members talk through and prepare for various options.

Like euthanasia, it puts patient autonomy at the centre of end-of-life decisions; but unlike euthanasia, it is not prescriptive of a certain final outcome, but responsive to what may arise.

Despite its benefits to help end-of-life patients cope with the difficult journey, the uptake of ACP has generally been modest in developed countries despite its embrace by the healthcare and some legal fraternities, with only about 20 per cent of suitable patients adopting it.

In Singapore, a more limited form of ACP in the Advance Medical Directive (AMD), which is confined to only life-sustaining treatments, was first introduced in 1997. As of 2015, less than 25,000 people had signed an AMD.

END-OF-LIFE CONVERSATIONS

For several years now, we have been advocating ACP for people with early cognitive impairment who retain mental capacity to make informed decisions in Khoo Teck Puat Hospital. We published separate studies in 2015 and this year which showed that less than half of the 158 patients we engaged were willing to partake in further conversations on the subject, and eventually only 22 per cent went on to formally document advance directives.

Those who had not been married and hence had limited family relations were more likely to embrace ACP. Likewise individuals who were better educated or had higher executive function which encompasses the ability to plan and make complex decisions.

Major reasons for unwillingness to engage included a preference to delegate end-of-life decisions to family members, inability or refusal to engage in such conversations, and an attitude of acquiescence to what the future holds.

Importantly, the modest uptake of ACP calls for deeper exploration into the complexities that underlie the issue.

AMD MAY LIMIT CHOICES

For example, it is possible that a formally documented advance directive may actually limit one's freedom in some contingencies. The very uncertain nature of illness, even for an incurable condition, calls for latitude to make critical decisions that impact life and death.

Take, for example, a patient with advanced cancer, struck by an acute life-threatening pneumonia which is amenable to treatment with antibiotics and artificial ventilation. Or another patient with advanced dementia who was eating well, but is struck by a viral illness that renders her unable to eat and drink adequately on her own.

In these instances, a course of antibiotics and tube feeding respectively are viable treatment options.

However, advance directives can include withholding the use of antibiotics; or an advance directive may say no tube feeding. A strict adherence to these directives means that the first patient won't get antibiotics to treat the pneumonia; and the second won't get temporary tube feeding that may help her tide over the phase of acute illness while awaiting the return of some degree of eating function.

In the two cases above, one can see that while advance directives are meant to free one from burdensome treatments that are seemingly futile, they may in some situations limit possibilities by consigning the person to a self-imposed bondage.

Therefore, while ACP may reduce the need for difficult end-of-life decisions, it would serve us well to remember that good decisions in such circumstances often result from thoughtful conversations and elaborate deliberations that ACP may not always anticipate and encompass, given that ACP discussions are by their nature hypothetical.

DIALOGUE AND DIGNITY

In the absence of advance directives, the time-honoured practice of active listening, respectful dialogue, mutual trust and understanding between healthcare professionals and surrogate decision makers acting in the interest of the patient is often the best recourse.

Ultimately, ACP is meant to uphold personhood and dignity in securing a good death that respects a person's values and preferences.

Conversations need to be initiated early and tailored to the particular needs and situation of the person.

For those who are not ready to engage, a willingness to pace with them and revisit the issue is appropriate. As for those who have made advance directives, flexibility and openness to new conversations and change in plans are necessary.

Within the medical and social care fraternity, there is a risk of being dogmatic in ACP engagements so it is crucial that professionals not impose their own values or be overly prescriptive.

We need to be constantly mindful that it is the patient's choice and not ours. For those who may not be able to engage in discussions on specific care plans, a general discussion to know the person, his values, wishes and preferences might suffice to guide decision making for surrogates if the need arises in future.

Although ACP and euthanasia espouse self-determination, there may be tension between one's individual choices and the choices of our immediate families and the larger community, as our personal choices impact not just ourselves but also those around us. The freedom to make choices for ourselves does not remove the need to be responsible to others.

Just as euthanasia can hurt our loved ones if it is not a collective decision, advance care plans should be made in concert with one's closest associates where appropriate, especially in an Asian society like ours where collective familial decision making have socio-cultural roots.

As we continue to promote ACP given its benefits in helping to fulfill a person's wishes, it is necessary to be cognisant that advance directives may not appeal equally to everyone. Adhering to the adage "to each his own" will do us well, as does learning to live without certitude what manner or time of death.

A colleague remarked that the most important things in life are often beyond our control after her patient's wish of wanting to pass on at home was not fulfilled.

If euthanasia or even ACP is symptomatic of man's quest for complete agency, then being open to what life or death brings would be wise, given what the limited human mind can fathom or wish for.

A few years ago, I received a Christmas card from the daughter of a patient who had passed on. Her mother had been suffering from advanced dementia and had lost the ability to eat and swallow well. Her mum had mentioned when she was still mentally lucid that should she one day be bedfast and completely dependent, she would like her life to be terminated. What her daughter wrote in the card amounted to this: "My mum's last gift to me was her dementia. I would not have learnt to love through the travails of caregiving if I had not given of myself to caring for her until the very end."

Life and death hold lessons for us, and it is good not to close doors on the possibilities that time alone will unveil.

The writer is director, geriatric centre, and senior consultant at Khoo Teck Puat Hospital.





3,000 South Koreans opting to 'die well'
They opt to forgo treatment when incurably ill, ahead of new law
By Chang May Choon, South Korea Correspondent In Seoul, The Sunday Times, 17 Dec 2017

More than 3,000 people have signed papers to forgo artificial life-extending treatment when they become incurably ill, in a pilot programme leading up to South Korea's first "dying well" law.

The Bill, passed in Parliament early this year after nearly two decades of debate, will go into effect in February.

The trial, which started on Oct 23 after months of preparation for end-of-life care, will allow the authorities and hospitals to test public reaction and check what measures are lacking, said Vice-Minister of Health Kwon Deok Cheol.

"We will respect a patient's will to die with dignity and do our best to guarantee the patient's well-being," he said in a statement.



At least seven people who joined the trial, conducted over three months at 13 hospitals around the country, have since died.

The first is a man in his 50s, who died of gastrointestinal cancer last month. He had signed a Physician Order for Life-Sustaining Treatment, which allowed him to reject four life-prolonging treatments - cardiopulmonary resuscitation, kidney dialysis, mechanical ventilation and cancer medication.

Death is a taboo subject in South Korea's Confucian society, which values respect for the elderly and caring for aged parents.

The dying well law has been hotly debated since two doctors were convicted of assisted murder and given suspended prison terms in 1997 for pulling the plug on a brain-damaged patient at the request of his wife.

Attitudes started shifting as the country tackled problems arising from a fast-ageing society and increasing elderly suicide rates.

A 2009 landmark ruling by the Supreme Court for a hospital to respect a family's wish to remove life support for a 76-year-old comatose woman paved the way for a dying well movement in the country.

Surveys have shown that over 80 to 90 per cent of South Koreans do not want to receive life-prolonging treatment if they know they are beyond hope of recovery.

Cancer is the top cause of death in South Korea. More than 78,000 people died of it last year, accounting for 27.8 per cent of total deaths, according to Statistics Korea.

Heart-related diseases are second (10.6 per cent), followed by neurological illnesses (8.3 per cent).

The dying well law was passed on Jan 8, despite criticism from civic and religious groups which said it is immoral. A similar legislation was passed in Singapore in 1996, and in Taiwan in 2000.

Pathology professor Yu Eun Sil of Seoul's Asan Medical Centre, who has written books about how to die well, said South Koreans should start opening up about the topic of death. In interviews with local media, she voiced hopes that the law can spark more discussion.

Dr Lee Dong Hyoun from Kangbuk Samsung Hospital told The Sunday Times that the new law would "allow patients to make choices about their life and prevent excessive medical spending".

But he warned of difficulties faced by doctors in deciding on the right time to stop treatment, and said that legal protection should be provided for medical staff, in case of disputes with family members.

The new law requires two doctors to make the decision, but some doctors think that stopping treatment at any stage is morally wrong.

For relocation agent Kim Jung Pil, 52, the new law is a welcome move as she grapples with the care of her elderly in-laws. Medical bills for her 83-year-old mother-in-law, who has dementia and diabetes and is staying in a hospice, cost the family more than 30 million won (S$37,000) a year.

"Hospitals are making money out of prolonging old people's suffering," she told The Sunday Times.

"My father-in-law has already said he does not want to spend money extending his life if it's such poor quality, and I also don't want to be a burden to my family when my time comes. I'd rather die with dignity than to suffer."





Laws elsewhere
By Chang May Choon, The Sunday Times, 17 Dec 2017

Assisted dying is legal in several countries and states in the US. There are also nations that allow terminally-ill patients to reject life-prolonging treatments. Here are some examples:

OREGON, UNITED STATES: Oregon passed its Death with Dignity Act in 1994 - the first in the world. Since 1997, terminally-ill patients with six months left to live have been allowed to end their life through voluntary administration of lethal drugs prescribed by doctors.

SINGAPORE: Singapore passed the Advance Medical Directive Act in 1996, allowing people to sign a legal document in advance to indicate they do not want any life-sustaining treatment when they become terminally ill.

TAIWAN: Dying with dignity became a legal option in Taiwan in 2000 when a Bill was passed to allow terminally-ill patients to reject medication or treatment that they think would only prolong their pain. In 2011, close relatives of such patients were given the right to decide whether to remove life support, a move the Health Department said was aimed at preventing unnecessary suffering.

THE NETHERLANDS: It legalised euthanasia and assisted suicide in 2002. But there are stringent conditions, like the patient must be stricken with an incurable disease, suffering unbearable pain and fully conscious when requesting death.

VICTORIA, AUSTRALIA: The state will allow voluntary assisted dying from June 2019, after a landmark Bill was passed last month. The law, which passed by 22 to 18 votes despite opponents trying to defer the motion indefinitely, will allow incurably-ill patients to ask for a lethal drug after clearing two independent medical reviews.


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