Dying With Dignity
Original article was published by World Health Forum (WHO) 1998, Vol. 19, No. 4: 429-430. The readers are encouraged to read the Round Table Discussion.
Every one of us will be confronted by our own death and that of the people we care about, yet it is difficult to name any other fact of life that is so fiercely resisted. In our culture denial of death is pervasive. In the past, death at home surrounded by relatives was perhaps easier to accept as a natural event. Now that more people die in hospitals, set apart from the living, death seems all the more mysterious, frightening and remote from our existence.
Hospice care has accomplished a great deal in preventing the lonely and painful deaths that many people fear, and we physicians caring for people dying from cancer or AIDS find it difficult to discern a need for physician-assisted suicide. It is deceptive and demeaning to suggest that all such requests are the result of inadequate professional care, psychopathology, or the spiritual weakness of patients. Nevertheless, surveys show a growing acceptance of physician-assisted suicide by the medical community, even though it is a power many doctors do not want to have.
Despite laws against it, it is generally accepted that assisted suicide is practiced, particularly by physicians treating AIDS patients. Without this possibility, patients may attempt to end their lives early on and without assistance because they are afraid of losing control and of becoming unable to act as their illness progresses. Especially if they are distressed enough to end their lives in a violent way, their families bear that scar for ever. A planned, assisted suicide, it is argued, allows for reconciliation and saying goodbye: there is a peacefulness that does not occur otherwise. The movement to legalize physician-assisted suicide does not say that people ought to die in this way, but that they should have the option to do so if they wish.
In this view of the situation, the question of who administers the final medication to a terminally ill person may be less important than that of who determines whether that life should end. Guidelines on eligibility for assisted suicide would guard against abuses; their development should include such verifiable terms as "terminally ill", "mentally competent", and "adult". As long as the practice is covert there is no hope of establishing such guidelines. Meanwhile, the American Medical Association, which considers physician-assisted suicide "fundamentally incompatible with the physician's role as healers", plans to launch a programme to educate doctors and patients on the best end-of-life care.
In July 1997 the US Supreme Court unanimously ruled that terminally ill patients do not have a constitutional right to physician-assisted suicide, but did not bar states from legalizing the practice. I see this decision as one step in a very long process: the debate about the legality and practicality of physician-assisted suicide should continue in our democratic society, and state legislature may be a better forum that federal courts for dealing with the thorny issue.
Assisted suicide is currently illegal in 44 US states and the District of Columbia, and the law is unclear in five other states. In Oregon, physician-assisted suicide was legalized in 1994 but has not been put into effect; 18 states have been considering initiatives for or against the matter in recent months, but no legislative support for assisted suicide has been forthcoming.
Dr. Rita Luthra
Director, Women's Health & Education Center
Readers may be interested in WHO's Round Table discussion on terminal care:
Abiven M. Dying with dignity.
World Health Forum, 1991, 12: 375-381;discussion 382-399.
Addendum - Discussion by the Editors of WHEC Publications
What do patients and clinicians need to know about dying and care at the end of life? What barriers exist to accessing and employing this knowledge in the face of difficult decisions? Which critical communication skills are essential in end-of-life discussions, and how these decisions should be regarded?
Dying is uniquely individual yet deeply shared and universal experience; it profoundly impacts perceptions of culture, personhood and identity. Assisting or hastening death is a dilemma with many ethical as well as practical issues facing healthcare practitioners in most countries worldwide now. Various arguments for and against assisted dying have been made over time, but the call from the public for legislation of euthanasia and assisted suicide has never been stronger.
The role of healthcare providers has clearly and undoubtedly changed over the years in healthcare practices, but the duty of care has not changed. The dilemmas for healthcare practitioners thus who have competent patient requesting hastened death, extends far beyond acting within a country's laws, as they go to the very heart of the relationship between the practitioner and patient. Caring well for dying patients requires understanding how prognosis, culture, policy, and training shape physicians' capacities, to communicate with and care for dying patients.
Euthanasia is defined as, a deliberate act undertaken by one person with the intention of either painlessly putting to death or failing to prevent death from natural causes in cases of terminal illness or irreversible coma of another person. The term comes from the Greek expression for "good death." A healthcare provider is allowed by law in some countries, where it is legalized, to end a person's life by a painless means, as long as the patient and their family agree. Euthanasia can also be classed as voluntary or involuntary.
Voluntary euthanasia is conducted with consent. It is currently legal in Belgium, Luxembourg, The Netherlands, Switzerland, and the states of Orgon and Washington in the United States of America (USA). Involuntary euthanasia is euthanasia conducted without consent. The decision is made by another person, because the patient is unable to make the decision.
There are two procedural classifications of euthanasia: passive and active euthanasia.
- Passive euthanasia is when life-sustaining treatments are withheld. The definitions are not precise. If a healthcare provider prescribes increasing doses of strong painkilling medications, such as opioids, this may eventually be toxic for the patient. Some may argue that is passive euthanasia.
- Active euthanasia is when someone uses lethal substances or forces to end a patient's life, whether by the patient or somebody else. It is more controversial, and it is more likely to involve religious, moral, ethical and compassionate arguments.
Assisted suicide is defined as a healthcare provider assisted a patient commit suicide if they request it.
Interventions – Past, Present, and Future
Effective prognostic communication requires that clinicians (and patients) have the will and ability to communicate about prognosis. There are many impediments to prognostic communication. However, each impediment provides an opportunity in the form of a potential target for future communication interventions. What the roles of clinicians and patients should be defining what constitutes a quality dying experience and good care of dying people has received less attention than issues like euthanasia and assisted death. Which parts of dying if any, should be medicalized and why? By taking honest measures of current challenges to communicate and limitations of clinicians and patients, paving the way to better communication and better care, is the way forward in end of life care management.
In our current health care climate, it is becoming more and more self-evident that clinicians must think critically about systemic implementation of effective communication concerning patients' prognosis and end-of-life care. In order to care well for dying patients and their families, it is necessary to understand how prognosis, culture, policy, and training all shape a physician's capacity to provide exceptional care for those navigating an experience, that is without exception shared by all (1).
As of June 2016, human euthanasia is legal in Netherlands, Belgium, Columbia and Luxembourg. Assisted-suicide is legal in Switzerland, Germany, Japan, Canada, and in the US states of Oregon, Washington, Colorado, Vermont, Montana, Washington DC, and California.
- Stol I. Ethical dimensions of caring well for dying patients. AMA J Ethics 2018;20(8): E678-682
I. Dying With Dignity Act in Oregon (USA): 20 Years of Experience
Twenty years ago, Oregon (USA) voters approved the Death With Dignity act, making Oregon the first state in the United Sates to allow physicians to prescribe medications to be self-administered by terminally ill patients to hasten their death. This report summaries the experience in Oregon, including the numbers and types of participating patients and providers (1). These data should inform the ongoing policy debate as additional jurisdictions consider such legislation.
From 1998 through June 2017, 1,857 Oregonians received prescriptions under the Death With Dignity Act, and 1,179 (64%) died from ingesting the prescribed medications. The overall deaths increased by an average of 14% annually, and from 2013 to 2015 the increase was 36%. The most frequent underlying disease recorded was cancer (77%), followed by amyotrophic lateral sclerosis (ALS; 8%), chronic respiratory disease (5%), and heart disease (2%). Among the population of Oregonians who died of the same underlying diseases, rates were highest among patients with ALS, human immunodeficiency virus (HIV) / acquired immunodeficiency syndrome (AIDS), or cancer.
During the second decade (2008 – 2017), only three Deaths With Dignity Act patients had HIV / AIDS as their underlying disease. Since 2000, 374 physicians have written prescriptions under the Death With Dignity Act. Of these, 230 (62%) wrote 1 prescription and 110 (29%) wrote 2 to 5 prescriptions, 24 (6%) wrote 6 to 19 prescriptions, and 10 (3%) wrote more than 20 prescriptions. Most prescriptions written by one physician were 85; second most were 33. Annually the number of physicians who wrote a prescription increased from 22 (0.2% of licensed Oregon physicians) in 2000 to 102 (0.6%) in 2016.
This review is important because the experience of Oregon can help the rest of the USA craft legislative policy that is informed with data. Over the past 20 years, the Oregonian participation in the Death With Dignity Act increased among terminally ill patients but is still low when compared with all Oregonian deaths.
Previous concerns that Death With Dignity Act patients would be disproportionally uneducated or lack financial resources are not demonstrated by these data. In fact, most participants have some college education with 22% having post-bachelor degree and education. Although many still have some concerns about the ethics and legalization of physician-assisted suicide, this report provides insight into those patients that request these services. This is a very complex and personal issue, and the experience of Oregon will no doubt help make future legislation based more on real data and less on personal belief of the legislators.
- Hedberg K, New C. Oregon's Death with Dignity Act: 20 years of experience to inform the debate. Ann Intern Med 2017;167:579-583
II. Dying in Switzerland: Responding to individual needs
Most people in Switzerland die in hospitals and nursing homes. Their specific needs are often not adequately met. In addition, professional caregivers are not well sufficiently coordinated. This situation could be improved by promoting palliative care, which cares for people's every need at the end of life. These are the conclusion reached by the National Research Programme (NRP) "End of Life." Palliative care has great potential and may be able to improve this situation. It takes a holistic approach to care, focusing on pain relief, maintenance of quality of life and self-determination.
Public is willing to bear high costs. The high costs of treatments in the final phase of life are often the subject to public debate. Findings of NRP 67 show that the costs associated with dying are typically lower for older people than for younger ones (1). One of the reasons for this is the fact that older people are less likely to die in the hospital. The treatment of cancer patients at the end of life is particularly expensive. However, the public is overall willing to bear the high costs incurred at the end of life - in French-speaking Switzerland and even more so than in the German-speaking part.
Decisions at the end of life can be highly diverse. In 70% of the non-sudden deaths recorded in 2013, a decision was made to either forego further treatment, break off an ongoing therapy or initiate pain and symptom relief measures that might have a life-shortening effect. Only 3% of deaths were preceded by life-ending decisions. These include active euthanasia on request, or in the absence of any explicit request from the patient, and assisted suicide. A striking number of patients are sedated in their last phase of life, and they therefore do not consciously experience dying. In 2013, every sixth person who died in Switzerland died in this manner (1). Deep sedation is a drug-induced deep sleep until death, which medical staff resort to certain symptoms are not otherwise containable during the dying process. However, if people who are not at the end of life are sedated in this manner, this is considered intentionally life-ending sedation and it is forbidden in Switzerland.
New legal regulations on assisted suicide have been under discussion for years. Only half of all cases of suicide that were reported to the Federal Statistical Office between 1985 and 2013 were investigated forensically (2). There was, therefore, no satisfactory legal control, and the protection of autonomy and rights to life were inadequately regulated. One of the possibilities under discussion was that legislators should be restricted to procedural regulations: to evaluate decision-making capacity according to civil law as well as medial clarification and counseling, and to fulfill the administrative requirements for assisted suicide and compliance with legal requirements (organizational and personal requirements, supervision and measures).
- Synthesis report of National Research Programme End of Life (NRP 67). Available at, http://www.snf.ch/SiteCollectionDocuments/nfp/nfp67-synthesebericht-en.pdf Accessed on 12 January 2018
- End of Life. National Research Programme NRP 67. Available at, http://www.nrp67.ch/en Accessed on 15 January 2018
III. Euthanasia in Netherlands – how does it work?
Euthanasia in the Netherlands is regulated by the "Termination of Life on Request and Assisted Suicide (Review Procedures) Act" from 2002. It states that euthanasia and physician assisted suicide are not punishable if the attending physician acts in accordance with criteria of due care (1). These criteria concern the patient's request, the patient's suffering (unbearable and hopeless), the information provided to the patient, the absence of reasonable alternatives, consultation of another physician and the applied method of ending life. To demonstrate their compliance, the Act requires physicians to report euthanasia to a review committee (1).
At present, physician-assistance in dying is known to be provided in several countries in varying frequencies. In the Netherlands, euthanasia is defined as deliberately ending a person's life at the person's request. In physician-assisted suicide, the person self-administers medication that is prescribed by a physician. Euthanasia and physician-assisted suicide are allowed provided that a physician performs the act while adhering to specific requirements. In the Netherlands, physicians must report euthanasia and physician-assisted suicide to enable review by one in five regional multidisciplinary review committees. They should comply with criteria of due care that have been developed by the courts during the preceding decades and are generally considered to be a summary of case law (2).
Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decision in the Netherlands. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in most of cases. Further, it has been shown that most physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. More education and debate are needed to disentangle in these situations with acts should be regarded as euthanasia and which should not. Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is now-a-days widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life.
A certain level of trust between review committees and reporting physicians is a prerequisite for an adequate reporting procedure, as this would stimulate physicians to report their acts. Review committees seem to mainly verify that the physician acted with due care, rather than trying to falsify this by looking for incongruent information. They concentrate their additional inquiries on two specific criteria; a subjective one (the patient's suffering) and a procedural one (the consultation), but hardly ask questions about the physical condition of the patient and the presence of possible alternatives. Possibly, their basic attitude of trust in the reporting physician is primarily related to criteria that physicians can assess within their own medical professional domain. Unbearable suffering is the most debated requirement, being subjectively and openly framed. Review committees possibly view their role as more relevant for this specific criterion than for criteria that mainly ask for profound medical knowledge.
The Dutch review procedures seems to concentrate on the criterion of (unbearable) suffering and on procedural issues. US legislations do not contain criteria concerning the patients' degree of suffering: the patients' medical situation is addressed in the criterion concerning the patients' life expectancy which should be six months or less. In actual medical practice, the characteristics of patients who died because of euthanasia are rather similar in the Netherlands and Oregon (USA) and in both counties reported cases are rarely not approved. Differences in the formulation of due care criteria concerning the patients' medical situation apparently only have a limited impact in the practice of physician-assisted dying.
- Buiting H, van Delden J, Onwuteaka-Philpsen B, et al. Reporting of euthanasia and physician-assisted suicide in the Netherlands: descriptive study. BMC Med Ethics 2009;10:18 Available at, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2781018/ Accessed on 2 February 2018
- de Haan J. The new Dutch law on euthanasia. Med Law Rev. 2002;10(1):57-75
IV. End-of-Life Decisions in Australia
The end-of-life laws are very complex in Australia where the law differs between States and Territories, and where areas of uncertainty about the law exist. There are mixed views about the role of this area of law in medical practice. While there were concerns about how long resolving legal disputes took, there was strong agreement that law has a place in medical practice and decision-making. Respondents also broadly supported the need to know and follow the law, and most wanted to learn more about this area of law. Palliative care specialists and geriatricians had significantly more positive attitudes to the role of law in this area of medical practice than did the other specialists. The current law in Australia:
What is legal in Australia now?
- Both suicide and attempted suicide;
- Refusing unwanted, painful and futile medical treatment leading to death from the illness;
- Refusing food and drink leading to death from starvation and dehydration;
- Being administered large doses of pain-relieving drugs, even though this may hasten death. This is not against law if the primary intention of the sector of the doctor is to relieve pain;
- Being put into a permanent state of unconsciousness leading to death – this is often called 'continuous palliative sedation.'
What is illegal in Australia now? This means it is a crime for any person, medically qualified or not, to aid or abet another person to commit or attempt to commit suicide.
- Voluntary assisted dying;
- Voluntary euthanasia.
The End of Life Directions for Aged Care (ELDAC) project was officially launched by the Minister for Aged Care in June 2018. The ELDAC initiative aims to improve the care of older Australians by providing aged care workers and generally practitioners with information, guidance, and resources to support palliative care and advance care planning for older people and their families (1). ELDAC is funded by the Australian Government Department of Health. Please see toolkits below.
Medical advances have enabled doctors to prolong lives, yet some treatments towards the end of life little chance of benefiting the patient. These treatments can cause moral distress to clinicians, increase risk of a 'bad' death by prolonging or increasing patient suffering, and result in wasted healthcare resources.
- End of life Directions for Aged Care (ELDAC) Toolkits; available at, https://www.eldac.com.au/tabid/4889/Default.aspx accessed on 10 August 2018.
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