The Medical Journal of Australia published a commissioned paper this week by US oncologist and bioethicist, Dr Ezekiel Emanuel entitled: Euthanasia and physician-assisted suicide: focus on the data.
Emanuel is a widely published author and commentator on a wide range of subjects. In this article he argues essentially that the focus should shift away from the idea of euthanasia and assisted suicide towards improving the care of dying patients.
Naysayers will argue that this is not an 'either-or' proposition; that both can be achieved. Countering that, Emanuel points out that arguments for euthanasia and assisted suicide are really a 'sideshow' in the end-of-life care discussion adding that E & AS are, 'championed by the few for the few, extensively covered by the media, but not targeted to improve the care for most dying patients who still suffer.'
What is missing? Emanuel seeks to contribute by his paper to, 'ensure evidence-based discussions and policy formulation, it is important to consider three major points regarding the practices of euthanasia and PAS.' His points, considered in order are matters that rarely gain a hearing in the media debates but, in reality, are important elements in end-of-life literacy that demand consideration if our society is to make fully informed decisions about end-of-life care and euthanasia and assisted suicide in particular.
Emanuel cites the data from places where E & AS are legally practices and notes that premature death by the methods employed are rare. While rarity is a matter of degree and interpretation, it is true to say that the vast majority of people do not seek to access premature death. Emanuel concludes:
"These data mean that the claim that legalising euthanasia and PAS will help solve the problem of poor end-of-life care is erroneous. Euthanasia and PAS do not solve the problem of inadequate symptom management or improving palliative care. These interventions are for the 1% not the 99% of dying patients. We still need to deal with the problem that confronts most dying patients: how to get optimal symptom relief, and how to avoid the hospital and stay at home in the final weeks. Legalising euthanasia and PAS is really a sideshow in end-of-life care â€” championed by the few for the few, extensively covered by the media, but not targeted to improve the care for most dying patients who still suffer."
It's not about pain
The public perception of the supposed need for E & AS seems to be largely focussed on pain. The word 'suffering' is also utilized in an attempt to broaden the argument somewhat to 'existential' issues. But 'existential suffering' - like pain itself, is well managed by good care. In any case, it remains the case that the drivers of euthanasia argument and understanding in the community is about a supposedly compassionate response to pain experienced by people with difficult and demanding prognoses.
Emanuel debunks this myth by reference to the data:
"Second, pain is not the primary reason why people seek euthanasia or PAS. It is commonly thought that patients in excruciating and unremitting pain would want these interventions. Many healthy people believe that pain would be the reason why they may want them; however, evidence suggests otherwise. Patients who request and receive euthanasia or PAS infrequently experience pain; similarly, few patients in pain actually want euthanasia or PAS. Two decades ago, research with patients who had cancer or HIV showed that those who were interested in euthanasia or PAS were not those experiencing pain. This has been confirmed multiple times; for instance, the data from the state of Oregon in the US, which has followed patients who have requested and used PAS for 17 years now, show that fewer than 33% of patients are experiencing â€” or fearing â€” inadequate pain control. Even in Australia, when for a brief moment seven patients were given euthanasia in the Northern Territory, none had uncontrolled pain.
"If not pain, then what motivates patients to request euthanasia and PAS? Depression, hopelessness, being tired of life, loss of control and loss of dignity. These reasons are psychological â€” they are clearly not physical pain â€” and are not relieved by increasing the dose of morphine, but by antidepressants and therapy. In the states of Oregon and Washington, the reasons for wanting PAS were: 90% of patients reported loss of autonomy, 90% were less able to engage in activities that make life enjoyable and 70% declared loss of dignity â€” depression and hopelessness are not listed and are not included in the reporting list. Likewise, in the Netherlands, the main legal requirement is "extreme physical or mental suffering," and patients' reasons are classified in this manner, making it hard to know whether the reasons are physical symptoms of depression. However, when researchers from the Netherlands â€” who were convinced that the main rationale was pain â€” interviewed patients who requested euthanasia, they found that few of the ones using euthanasia were experiencing pain, but most were depressed".
He moves on to discuss psychological suffering which, generally speaking, would include a great deal of that which is claimed to be 'existential':
"The importance of psychological suffering as patients' rationale for requesting euthanasia and PAS indicates that these interventions are less like palliative care and more like traditional suicide condoned and assisted by the medical community. The main drivers of traditional suicide are psychological problems. Despite the importance of psychological suffering as the main motivator, few physicians in the jurisdictions where euthanasia and PAS are legal receive psychiatric consultation. Indeed, in the states of Oregon and Washington, less than 4% of patients who had PAS had a psychiatric consultation.5-7 In Belgium, where an independent physician needs to be consulted for non-terminal cases, in 42â€“78% of cases that physician is a psychiatrist. Since psychological reasons dominate, one would think that requiring psychiatric evaluation would be a reasonable safeguard before providing euthanasia or PAS. Therefore, we need to think very differently about what drives people to want euthanasia. The picture most people have of patients who are writhing in uncontrolled pain despite morphine is simply wrong." (emphasis added)
A painless exit?
The marketting and sloganeering of the pro euthanasia & assisted suicide brigade would have us believe that the provision of a premature death by way of a lethal dose is 'dignified' because it is quick and painless. The likes of Exit International and Philip Nitschke goig so far as to market products and methods under the title 'peaceful pill'. This is a falsehood and ignores the reality, as Emanuel points out:
"Third, many people believe euthanasia and PAS are flawless, quick and painless. This belief is common but mistaken. No medical procedure â€” even simple ones like blood draws â€” is flawless; every medical procedure has problems and complications. Euthanasia and PAS are no exceptions. According to a study in the Netherlands from 2000, 5.5% of all cases of euthanasia and PAS had a technical problem and 3.7% had a complication. An additional 6.9% of cases had problems with completing euthanasia or PAS. Technical problems, including difficulty finding a vein and administering oral medications, occurred in 4.5% of euthanasia cases and in 9.8% of PAS cases. Moreover, 3.7% of euthanasia cases and 8.8% of PAS cases had complications, such as nausea, vomiting and muscle spasms. Overall, an additional 1.1% of patients who had euthanasia or PAS did not die but awoke from coma. The data suggest that the common view of euthanasia and PAS as quick, flawless, and painless ways to die is unrealistic." (emphasis added)
In conclusion, Emanuel questions the entire thrust towards patient killing and patient suicide:
"When considering this evidence, the case for legalising euthanasia and PAS looks less compelling. They will not improve the care of many dying patients, they are not helping people in pain and enduring inadequately treated physical symptoms, and are far from quick and flawless. What is then the great impetus to legalise interventions to end lives for a small minority of patients who are depressed, worried about losing autonomy and being tired of life?
"We should end the focus on the media frenzy about euthanasia and PAS as if it were the panacea to improving end-of-life care. Instead, we need to focus on improving the care of most of the patients who are dying and need optimal symptom management at home."
If Emanuel is right that we should 'end the focus on the media frenzy' then it would seem to be an imperative that the media, in turn, report on his observations. Yet, in Australia, this paper was noted only once in the daily papers and only twice in brief news articles on line.
The full text can be accessed HERE.
Ezekiel J. Emanuel is the Vice Provost for Global Initiatives, the Diane v.S. Levy and Robert M. Levy University Professor, and Chair of the Department of Medical Ethics and Health Policy at the University of Pennsylvania. He is also a Senior Fellow at the Center for American Progress. Dr. Emanuel was the founding chair of the Department of Bioethics at the National Institutes of Health and held that position until August of 2011. Until January 2011, he served as a Special Advisor on Health Policy to the Director of the Office of Management and Budget and National Economic Council. He is a breast oncologist and author.