Clinical Professor, Division of Palliative Care, Department of Family Medicine, University of British Columbia
What Health Care Professionals Need to Know about Physician-Assisted Suicide and Euthanasia

This article will discuss the following:

  • What is meant by withholding and withdrawing potentially life-sustaining care, physician-assisted dying (PAD) and euthanasia, and palliative sedation?
  • What is the controversy surrounding PAD?
  • Is palliative sedation a form of euthanasia?
  • What regulations have been proposed in certain states or countries for physician-assisted dying?
  • Why do some people request hastened death?
  • Why do some people follow through with physician-assisted suicide?
  • Why are physician-assisted dying and euthanasia not part of palliative care?

Definitions

Withholding and withdrawing care

A competent adult patient who has been informed of the benefits and risks of a therapy or treatment may refuse or stop it, even if doing so may shorten his or her life. This typically happens during a life-threatening condition, where death may be delayed by artificial means.

The right to withhold and withdraw potentially life-sustaining therapies is consistent with the ethical principle of autonomy. In other words, a mentally competent person has the right to decide that the burdens of a certain treatment outweigh the potential benefits or that there is no reasonable hope of achieving those benefits. The ethical principles of beneficence (doing what is best for the patient) and nonmaleficence (not causing harm) are not inconsistent with withholding or discontinuing a therapy, so long as patients understand their options and the consequences of their choice. Withholding therapy is considered morally and ethically equivalent to withdrawing therapy.

The terms withholding and withdrawing therapy are not well named and can be misunderstood; because no matter what treatment decisions are made, physical, psychosocial and spiritual care and support of the patient and loved ones are never withdrawn. This is true, whether we are referring to curative, disease-modifying or palliative care. While the care plan changes, the provision of care is never negotiable; this should always be made clear to patients and decision-makers. The withholding or withdrawing of therapy recognizes the limits of medical interventions, not the limits of care. Physicians should raise the possibility of stopping or not starting treatments with patients and substitute decision-makers as part of letting them know what their options are; and that sometimes, certain treatments or therapies may cause more harm than good.

An example of withdrawing treatment is the discontinuation of a ventilator for a patient with advanced COPD who may not be able to sustain adequate ventilation without it. This is preceded by a discussion with the patient—or when necessary, his or her appointed decision-maker—to obtain informed consent. An example of withholding treatment would be not administering antibiotics to patients with advanced dementia and aspiration pneumonia, based on a previous written directive that is validated with their current proxy decision-maker.

Sometimes, health care professionals find it difficult when someone declines a therapy we would judge worthwhile. For example, a patient might refuse chemotherapy for a cancer that might very well respond to treatment. But the principle of autonomy allows patients to decline suggested treatments, so long as they understand their options, the implications of their decisions, have all the information they need, and are capable of making those decisions.

Palliative sedation

Palliative sedation is formally called “continuous palliative sedation therapy” (CPST) A national framework for this approach was developed and published in 2012.1  The indications for palliative sedation include refractory and intolerable suffering in the last two weeks of life after a thorough search (using consultants if necessary) to ensure that all other avenues of treatment have been considered. The intent of palliative sedation is to titrate the sedative medication to reduce consciousness, only to the degree that is required to relieve suffering. Often the sedation does not render the person unconscious, although that may be necessary at times. Benzodiazepines and sedating antipsychotics are the medications recommended for use.

The decision to use palliative sedation involves the patient, the family, the whole health care team and clinicians experienced in the use of the therapy. As well, the health care team frequently monitors and reviews the patient’s status and the family’s reaction to the therapy.

Physician-assisted suicide and euthanasia

One of the clearest definitions of physician-assisted suicide and euthanasia is from the Canadian Medical Association Policy, which states:

“Assistance in suicide means knowingly and intentionally providing a person with the knowledge or means or both required to commit suicide, including counselling about lethal doses of drugs, prescribing such lethal doses or supplying the drugs.

“Euthanasia means knowingly and intentionally performing an act that is explicitly intended to end another person’s life.”

The main difference between these two is who is taking the action. The patient is the one who chooses to use the fatal medication provided by the physician and self-administers it. In euthanasia, the physician administers the fatal medication. The intent of both is the same—the death of the patient. In physician-assisted suicide, consent by the patient is implied by their own administration of the fatal drug. In euthanasia, it is less clear and some programs will distinguish between voluntary and non-voluntary euthanasia.

While there are significant differences between physician-assisted suicide and euthanasia, this article will consider them together as physician-assisted dying (PAD).

The controversy surrounding PAD

The major argument for the legalization of PAD is respect for the autonomy of a capable adult. The rise of autonomy as a central principle of medical ethics has been growing since the mid-1900s, when patients began to insist on a right to know about their illness and prognosis. This has grown into the practice of informed consent and shared decision-making. The promotion of advance directives to ensure that patients maintain some autonomy, even when they lose capacity, was a further step in the growth of patient autonomy. It is also this principle that underpins the right for patients to refuse or withdraw from potential life-sustaining treatment. Proponents of PAD argue that autonomy should extend to the right of controlling the timing and means of one’s death.

The rise of technology and the focus on disease indices and vital functions rather than on the person’s physical, psychological and spiritual needs has led to a fear of suffering and loss of control at the end of life. Inconsistent access to palliative care services and lack of awareness of what palliative care can offer have also contributed to ongoing episodes of poor dying that further fuel these fears.

Another argument used to advocate for PAD is the duty of physicians not to abandon their patients. Proponents argue that when suffering cannot be alleviated through conventional means, the duty of non-abandonment should include—as a last resort—helping patients end their lives.

A powerful argument against PAD is that it betrays the role of doctors as healers and could cause a fundamental loss of trust in a therapeutic patient-physician relationship. PAD also moves physicians away from attempting to understand and mitigate the suffering that causes patients to consider hastened death. Instead, PAD replaces that mandate with one where physicians determine if patients meet specific eligibility criteria for a hastened death option. Empowering physicians to cause death intentionally would dramatically change many of the relational assumptions and ethical principles upon which medical care has been built. Some feel the legalization of PAD would “medicalize” death to an even greater extent and would result in greater power for the physician rather than greater autonomy for patients.

There is concern that the capacity of a person asking for assistance in dying might be compromised by worries about being a burden to others because of care needs or costs. Most concern, however, is about a person’s capacity being distorted by demoralization, adjustment disorders or clinical depression. Clinical depression is often under-diagnosed in those with terminal illness because many of the physical symptoms overlap with chronic illness. There is an established link between depression and request for hastened death.2

A person’s capacity may be affected by delirium. A systematic review of the prevalence of delirium in palliative care patients varied with a range of: 13.3%–42.3% at admission, 26%–62% during admission, and increasing to 58.8%–88% in the weeks or hours preceding death.3 Hypoactive delirium was the most prevalent delirium subtype (68%–86% of cases). Hypoactive delirium is more difficult to appreciate than hyperactive and is often under-diagnosed.

Some criticisms of PAD programs are about inadequate evaluation of the capacity of the patient as well as the extent to which a patient might be swayed or influenced by other factors. Only 2 of the 77 patients who died in Oregon’s PAD program during 2012 were referred for formal psychiatric or psychological evaluation before receiving a prescription for lethal drugs.4  Another concern is that the prescribing physician has not known the patient for any significant length of time. In the first year of the Oregon PAD program, the median length of the patient-physician relationship was measured in PAD patients who completed suicides versus a control group of Oregon patients who died of similar illnesses. There was a significant difference in the median relationship length of 69 days for the PAD group versus 720 days (p=0.03) for the control group.4

Another major argument implies that the prohibitions against and exclusions for physician-assisted dying may be relaxed over time, leading to an abuse of the process. This “slippery slope” is of particular concern to the disability community, whose members may not be able to speak for themselves or who may be tragically viewed as living lives that are more expendable. Patients in a medical system that is financially strapped by the cost of complex care for people who are terminally ill or disabled may also be vulnerable to exploitation. Policies in Belgium that support the use of physician-assisted dying for children, the mentally ill or the elderly who have grown “tired of life” suggest that these concerns are well founded.

PAD proponents have generated further controversy by attempting to blur the lines between what nature does to us and what we do to each other. The argument is made that because the outcome is identical—death—withholding and withdrawing treatment are morally the same as euthanasia or physician-assisted dying.

This ignores the fact that the agent responsible for the death in withdrawal and withholding is the disease (or “nature”), but in the case of euthanasia or PAD, the cause is a lethal substance administered or prescribed by a physician. Withdrawal or withholding of treatment on its own would not achieve death if there were not a terminal illness nearing the end of its course. The intention of withdrawal and withholding is allowing nature to take its course, while in PAD, the intention is ending life.

Palliative sedation: Is it a form of euthanasia?

Palliative sedation is another controversial area. Proponents of PAD suggest that without legalizing the practice and regulating its use, palliative sedation is a subtle form of euthanasia that is regularly practised. As discussed above, palliative sedation is really an intervention of last resort, best provided when palliative care cannot control or overcome a patient’s suffering. The goal of palliative sedation is to help the patient cope with physical and/or emotional or existential suffering, not to end the patient’s life.

A recent systematic review of whether palliative sedation shortens life found 11 retrospective and prospective studies involving 1,807 patients in which 621 patients received sedation.5  There was no significant difference in time to death between the sedated and non-sedated patients. A recent prospective study found that palliative sedation was a definable clinical intervention that had no effect on survival.6  Both studies noted the most frequent reason for palliative sedation was delirium.

Palliative sedation differs from euthanasia in the following respects:

  • It is undertaken only in the last one to two weeks of life.
  • It is used after an exhaustive search for relief of suffering through other therapies.
  • Its intention is to reduce consciousness in order to relieving suffering.
  • It has not been shown to shorten life.
  • The cause of death is not the sedative but the underlying progressive illness.

Where is PAD legal and what are the regulations?

In North America, several US states permit physician-assisted dying but not euthanasia. In Oregon, which has the longest running PAD program, the patient must be a capable adult (18 years and older), a resident of the state, and diagnosed with an illness likely to result in death within 6 months. A request for PAD from a physician must be made verbally at least twice, with a minimum of 15 days between requests, as well as a written request.

The physician who writes the prescription must consult with another physician. Both are obliged to confirm the diagnosis and prognosis, and the ability of the patient to provide informed consent. If either is concerned about impaired judgment due to depression, delirium or other factors, the patient must be referred for “counselling.” However, such referrals are rarely made. The prescribing physician is also obliged to make the patient aware of all other options including palliative care. There is no mechanism, however, for doctors whose opinions differ to reconcile their differences.

Oregon collects data that is available on their public health website. Reports are written for every year of the PAD program. The rate of PAD is about 1–2 deaths per 1,000. Of the 77 deaths during 2012, most (67.5%) were aged 65 years or older, with the median age being 69 years. As in previous years, most were white (97.4%), well-educated (42.9% had a least a baccalaureate degree), and had a diagnosis of cancer (75.3%).

In Europe, PAD is permitted in the Netherlands, Belgium, Luxembourg and Switzerland. Each country has similar requirements: a competent patient who understands his or her medical situation and who has been informed of all other reasonable options. Patients are also required to consult with an independent physician. A major difference from North American programs is that patients do not need to have a terminal illness with a specific prognosis; they must only demonstrate unbearable suffering.7

A Netherlands research group compared the number of PAD cases reported to a local review board to a random sample of death certificates where PAD may have been involved but death by natural causes was cited by physicians. The group’s study, published in The Lancet,8  noted that in 2010 only about 8 out of 10 PAD cases were reported by physicians. The same study reported the absolute number of deaths by euthanasia or physician-assisted suicide as 4,050, a rate of 30 PAD deaths per 1,000 deaths. There are a number of concerns with the program in the Netherlands. These include: euthanasia is undertaken without a patient’s specific request (adults and newborns); reporting is not mandatory for physicians; and the medications for euthanasia are not regulated.

Why do people request hastened death?

It is important to understand the complexity of feelings behind a request for hastened death. It is also important to acknowledge that accepting one’s approaching death is a process. Patients often voice their feelings about dying—which can include expressing a desire for an early death or even suicide—as they work through their sense of loss and mounting grief. A qualitative study identified six stages, or “mind frames,” about death and dying:9

  1. neither ready nor accept death;
  2. not ready but do accept death;
  3. ready and accept death;
  4. ready, accept and wish death would happen;
  5. ready, accept, are considering hastened death but have no plan;
  6. ready, accept, have a specific plan to hasten death.

People who are considering a hastened death (mind frames 5 and 6) would likely enquire about the possibility of PAD if it were available. Individuals in mind frame 4 may also speak of death as part of their acceptance of its approach but do not necessarily wish it to be hastened. As health care providers, it is crucial that we clarify exactly what patients are asking for and the reasons for their requests. It is also important for clinicians to understand that being open to these conversations, while respecting the boundaries of what is legally permissible, is essential to developing a therapeutic dialogue meant to assuage suffering.

A number of studies about the desire for hastened death have been systematically reviewed and summarized.10  In general, poorly controlled physical symptoms such as pain or dyspnea are not drivers for the request for hastened death; although fear of these symptoms in the future can be. Depression and hopelessness have been found to positively correlate with a desire for hastened death, and clinical depression should be a consideration in all requests for hastened death.

Perhaps the most useful way to summarize the evidence is to consider a 2012 systematic review and meta-ethnography of the underlying issues from the patient’s perspective. The study identified six themes that seemed to lie behind the request for hastened death:11

  1. a response to total pain (physical/psychological and spiritual suffering;
  2. the loss of self—the loss of bodily function and the ability to manage one’s life leading to perceived loss of dignity and perceived loss of meaning in life;
  3. the fear of the dying process and imminent death;
  4. the seeing of death as a way to end one’s suffering due to fear and loss of self;
  5. an expression of wanting to live—but just not in this way; and
  6. a way of maintaining control over one’s life.

Regardless of our individual viewpoints on these issues, we must become comfortable discussing the feelings behind individuals’ desire to die in order to understand and help those who are encountering end-of-life suffering.

Why do people follow through with physician-assisted suicide?

The data we have gathered from places where physician-assisted dying is legal demonstrates that more people request hastened death or get a prescription for lethal drugs than those who actually complete the act. In Oregon from 1997 to 2012, 64% of the 1,050 individuals who received a prescription actually used it to cause their death.4 About 1 in 6 people discuss this issue with their families, and 1 in 50 discuss it with their doctors. Physician-assisted suicide accounts for about 1 in 1,000 deaths in Oregon.

The main reasons given for the 77 people who chose to take a fatal prescription in 2012 were loss of autonomy (93.5%), decreasing ability to participate in activities that made life enjoyable (92.2%), and loss of dignity (77.9%). These three reasons have been consistent since the start of Oregon’s PAD program. Only two patients who completed suicide were referred for psychiatric or psychological assessment before receiving their lethal prescriptions. Those who oppose physician-assisted dying would view this with concern, citing the higher frequency of depression in those who request hastened death.12, 2, 7

Why are PAD and euthanasia not part of palliative care?

The WHO Definition of Palliative Care (1990) states that palliative care “affirms life and regards dying as part of the normal process of living” and it “neither hastens or prolongs dying.” Current definitions also respect the process of dying naturally. Palliative care aims to help people live as fully as possible until their natural death occurs. Nowhere within palliative care definitions, values, norms of practice or principles does palliative care claim to provide access to lethal medication so that individuals may control the timing and circumstances of their death.

According to the WHO’s 1990 definition, palliative care can “enhance quality of life and may positively influence the course of illness.” Recent medical evidence confirms that the introduction of palliative care early in the trajectory of metastatic lung cancer can control symptoms, reduce depression, improve quality of life, and help patients to live longer.13  There is also evidence that patients with heart failure live longer when they are enrolled in the US hospice program of services.14

Studies of health care providers’ attitudes and willingness to be involved in physician-assisted dying show that palliative care providers are least likely to be in favour. This is not surprising, given that support for PAD is highest among those with the least experience and the most anxiety around dealing with patients who are nearing death.15  The desire to end life is often driven by the patients’ and/or clinicians’ sense of hopelessness. There is ample evidence that palliative care interventions can mitigate the desire to die: People who at one time would have requested assisted suicide during the course of their terminal illness change their minds along the way.

Palliative care clinicians encounter multiple requests for hastened death and learn to work effectively with patients and families in order to understand and address the issues behind these requests. Recognizing suffering and working with patients and their loved ones to assuage suffering is the essence of palliative care. Much of this work involves helping people adjust to and cope with their progressive illness. This includes supporting people in healing relationships, reconciling with estranged family, fostering a sense of meaning, and, at its most fundamental, keeping people comfortable until they die. Making a commitment to address suffering until the very end of life, and assuring patients and families that they will never be abandoned is, for most palliative care clinicians, antithetical to the role of eliminating the person or abandoning the sufferer to only one option—physician-assisted dying.

November 2014



Notes

  1. Dean M, Cellarius V, Henry B, Oneschuk D, Librach L. Canadian Society of Palliative Care Physicians Taskforce. A framework for continuous palliative sedation therapy in Canada. J Palliat Med. 2012;15(8):870-879.
  2. Wilson KG, Chochinov HM, McPherson CJ, et al. Desire for euthanasia or physician-assisted suicide in palliative cancer care. Health Psychol. 2007;26(3):314-323.
  3. Hosie A, Davidson P, Agar M, Sanderson C, Phillips J. Delirium prevalence, incidence, and implications for screening in specialist palliative care inpatient settings: a systematic review. Palliat Med. 2013;27(6):486-498.
  4. Oregon Health Authority. Death with Dignity Act.
  5. Maltoni M, Scarpi E, Rosati M, et al. Palliative sedation in end-of-life care and survival: a systematic review. J Clin Oncol. 2012;30(12):1378-1383.
  6. Maltoni M, Miccinesi G, Morino P, et al. Prospective observational Italian study on palliative sedation in two hospice settings: differences in casemixes and clinical care. Supportive Care Cancer. 2012;2829-2836.
  7. Buiting H, van Delden J, Onwuteaka-Philipsen B, et al. Reporting of euthanasia and physician-assisted suicide in the Netherlands: descriptive study. BMC Med Ethics. 2009;10:18.
  8. Onwuteaka-Philipsen B, Brinkman-Stoppelenburg A, Penning C, de Jong-Krul G, van Delden J, van der Heide A. Trends in end-of-life practice before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey. Lancet. 2012;380(9845):908-915.
  9. Schroepfer T. Mind frames towards dying and factors motivating their adoption by terminally ill elders. J Gerontol B Psychol Sci Soc Sci. 2006; 61(3):S129-39.
  10. Monforte-Royo V, Villavicencio-Chavez C, Tomas-Sabado J, Balaguer A. The wish to hasten death: a review of clinical studies. Psychooncology. 2011;20(8);795-804.
  11. Monforte-Royo V, Villavicencio-Chavez C, Tomas-Sabado J, Mahtani-Chugani V, Balaguer A. What lies behind the wish to hasten death? A systematic review and meta-ethnography from the perspective of patients. PLoS One. 2012;7(5):e37117.
  12. Beitbart W, Rossenfeld B, Pessin H, et al. Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA. 2000;284(22):2907-2911.
  13. Temel J, Greer J, Muzikansky A, et al. Early palliative care for patients with metastatic non small-cell lung cancer. N Engl J Med. 2010;363(8): 733-742.
  14. Connor S, Pyenson B, Fitch K, Spence C, Iwasaki K. Comparing hospice and non-hospice patient survival among patients who die within a three-year window. J Pain & Symptom Manage. 2007;33(3);238-246.
  15. Portenoy R, Coyle N, Kash K, et al. Determinants of the willingness to endorse assisted suicide: a survey of physicians, nurses and social workers. Psychosomatics. 1997;38:277-287.