Ethical Issues Regarding Palliative Sedation
Margaret Van Dyck, RN, BScN, CHPCN
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The article "Confused, Restless, Agitated- Can We Cope?" (Doorway, May 2009) addressed the symptom of delirium or agitation in end-of-life care and reviewed some of the complexity in managing such a commonly occurring symptom in palliative care. Palliative sedation, the term commonly applied to the use of sedation "to control refractory symptoms in patients near the end of life" (1), can be used to control physical symptoms such as agitation, restlessness, pain, nausea and vomiting, and dyspnea, to name a few. While relief of suffering is central to good palliative care, the practice of palliative sedation is more controversial when the aim is to treat not physical symptoms but instead, uncontrolled psychosocial or existential suffering. Experts in the area can be found on both sides of this issue, with some convinced that the ethical lines are becoming blurred, and this practice might be the start of a slippery slope to euthanasia (2).
Much work has been done to define terms and produce guidelines covering the care of patients, to guide the decision making involved, and to address concerns about the comfort level of caregivers regarding this issue of palliative sedation. This article cannot begin to address the full scope of these issues, but we can begin by settling on some helpful definitions. For example, the HPNA (Hospice Palliative Nurses Association) position statement describes palliative sedation as "the monitored use of medications intended to induce varying degrees of unconsciousness, but not death, for relief of refractory and unendurable symptoms in imminently dying patients" (3). Other sources confirm that the essential parameters for this definition to apply must include the following: death must be imminent; suffering must be refractory (resistant) to aggressive palliative care interventions; and the intent behind the administration of the sedation must be to control the symptom and not to hasten death (4,5). A recent study by Maltoni provided some reassurance to those who fear palliative sedation therapy will lead to euthanasia, concluding that the practice does not shorten life when used to relieve refractory symptoms in advanced cancer, terminally ill patients (6). However, defining psychosocial and spiritual or existential suffering is problematic and presents challenges, given that it is subjective, often influenced by personal, cultural, religious values and beliefs, and can present at many times during the trajectory of someone's illness. How is a decision to be made that this suffering is refractory?
To help navigate the ethical issues involved, one needs to look at some ethical principles such as autonomy, beneficence, and the doctrine of double effect. Autonomy is the right of a capable person, or his/her proxy, to make health care decisions: for example, to relieve their suffering (1,2). Ethical dilemmas can surface if there is deemed harm from the exercise of someone's autonomy, for example, if a patient should request physician assisted suicide (PAS) or euthanasia. Canada does not presently afford legal immunity in such a situation, and clinicians are not obligated to comply, though Bill C384 which was recently presented in the federal Parliament tries to address this issue. CHPCA (Canadian Hospice Palliative Care Association) published a communication, urging that discussion be focused on good hospice palliative care, thereby reducing excessive focus on PAS (7)
Hospice palliative care providers have observed ... that the desire for euthanasia or physician-assisted suicide usually stems from one or more of the following factors: a desire not to be a burden on others; the individual's need for control over the illness and his or her body/life; depression and psychological distress often associated with illness; the pain and suffering caused by all terminal illnesses. Comprehensive hospice palliative care can help alleviate many of the factors that may cause people to consider physician-assisted suicide, particularly the burden on loved ones, depression and pain and symptom management. (7)
Another ethical principle, termed beneficence, refers to the ethical duty of a clinician to do well, to promote wellbeing (2), to benefit the patient (e.g. relief of suffering with the use of palliative sedation). One difficulty here is that once sedation is initiated the patient is no longer able to communicate if the intervention is effective or to change his/her mind about the decision(2).
Finally, we need to consider two other ethical principles which are crucial to guiding the clinical practice of palliative sedation: the doctrine of double effect and the principle of proportionality (8). The doctrine of double effect seeks to distinguish between an intended and an unintended effect of an action.
The act itself must be good or at least neutral (administering pain medications or sedation); the intention of the act is to produce a good effect (relief of pain or suffering; although a harmful effect (death) is foreseeable...; the harmful effect of the act must not be the means to the good effect (death is not the means to relieve suffering); and the good effect must outweigh or balance the harmful effect (principle of proportionality). The principle of proportionality is established by the terminal condition of the patient the urgent need to relieve suffering, and the consent of the patient or health care proxy (8)
At the heart of the ethical debate over palliative sedation and euthanasia or physician-assisted suicide is the question of intent. "The intent of palliative sedation is relief of intractable distress whereas the intent of euthanasia is to end life "(8). Even with these differentiations, the boundaries for determining intent can be blurred. It is significant that, while attending palliative care conferences in Ontario in 2009, I heard the discussions ranging from those who want to reinforce the CHPCA position that "euthanasia and PAS is not and never will be a part of hospice palliative care"(9), to others who advocated a more soft, circumstantial, case-based solution.
Only a few studies address the issue of sedation used for refractory psychosocial or existential suffering, since objective data is difficult to research in this area. Often the studies are case studies that help discussions for teams grappling with ethical issues but not multicentre comparative research studies. Also usually physical suffering is overlaid and intertwined with existential pain (10). A study by Morita clarified that 19 of 20 patients who expressed existential distress and received sedation also had distressing physical symptoms, and the median survival was 1.5days after sedation (11). So it is difficult to isolate studies focused primarily on existential suffering and narrow the scope to just this area.
It is more difficult to establish that profound psychosocial and spiritual suffering are refractory to treatment and that all treatment options have been utilized. Another problem is that this suffering may present earlier in the trajectory of illness; death may in fact not be imminent. The problem then becomes that palliative sedation may potentially hasten death, by altering the level of consciousness, and altering the ability to take nutrition and hydration in someone not exhibiting signs of physiological organ failure from impending death. Another aspect to this issue is that existential suffering may at times actually be beneficial, benefiting us as a time of personal growth, affording an opportunity for personal or spiritual reconciliation (12) In such circumstances, palliative sedation could preclude these opportunities for communication and relationship. Therefore, discussion among patients, families and caregivers regarding palliative sedation in situations of existential suffering would need to be approached carefully, with multidisciplinary team consultation including psychiatric support and second opinions. Palliative care settings should have guidelines in place to navigate through these discussion (5). If any member of the team is feeling pressured to make an unethical conclusion regarding palliative sedation in a particular situation, advocacy and communication are vital to allow time for proper and unified decision making. One must remember that families are left with lasting impressions and memories of those last days of being with their loved one, and those memories will influence their grieving.
In conclusion existential suffering is difficult to define and to label as 'refractory' and may be present in someone not imminently dying. In these situations the use of palliative sedation becomes more complex and ethically controversial.
When considering palliative sedation, it is important to remember these key points:
- The symptoms are refractory to non-sedating treatments; consult with experts in palliative medicine to ensure other therapeutic options are exhausted.
- The patient is terminally ill, usually with death imminent and expected.
- The goal of treatment is the control of symptoms and not the hastening of the patient's death.
- Sedation may be intermittent or continuous; consider "respite" sedation of a predetermined duration, followed by lightening of unconsciousness to assess response.
- Sedation for existential suffering must be approached cautiously, with both psychiatric and interdisciplinary consultation in advance; consider issues of informed consent. (13)
References/Sources Cited
- Cooney, Gail Austin. Palliative Sedation: The Ethical Controversy. http://www.medscape.com/viewarticle/499472 (accessed 7/23/2008)
- Ibid
- HPNA Position Statement Palliative Sedation At End of Life. June 2003. http://wwwhpna.org/pdf/Palliative_Sedation_Position_Statement_ppo./pdf (accessed 01/14/2009)
- AAHPM Position Statement on sedation at the end of life. American Academy of Hospice and Palliative Medicine. September 2002
- Clinical Practice Guideline for Palliative Sedation. Alberta Health Services-Calgary Zone. Developed 2005; Revised 2009. http://www.calgaryhealthregion.ca/clin/cme/cpg/cpg-Palliative Sedation Guidelines2009v4-2.pdf (accessed 01/14/2009)
- Maltoni, M et al. Palliative sedation therapy does not hasten death: results from a prospective multicenter study. Annuls of Oncology 2009 20(7): 1164-1169 http://annonc.oxfordjournal.org/cgi/content/full/20/7/1163 (accessed 01/14/2009)
- CHPCA "Let's Talk About Hospice Palliative Care Instead Campaign" http://www.chpca.net/press-releases/2009-11-12_LTAHPC_MR.pdf (accessed 11/11/2009)
- Bruce S, Hendrix C, Gentry J. Palliative Sedation in End of Life care. Journal of Hospice and Palliative Nursing. 2006:8(6):320-327 http://www.medscape.com/viewarticle/550666 (accessed 01/14/2009)
- CHPCA "Let's Talk About Hospice Palliative Care Instead Campaign" http://www.chpca.net/press-releases/2009-11-12_LTAHPC_MR.pdf. (accessed 11/11/2009)
- Cooney, Gail Austen. Palliative Sedation: The Ethical Controversy http://www.medscape.com/viewarticle/499472 (accessed 7/23/2008)
- Morita T et al. Terminal sedation for existential distress. American J. Hosp. Palliative Care 2000, 17:189-195 cited in Cooney, Gail Austin. Palliative Sedation: The Ethical Controversy http://www.medscape.com/viewarticle/499472 (accessed 7/23/2008)
- Shaver WA, Rousseau PC. A challenge to the ethical validity of palliative sedation. Program and abstracts of the American Academy of Hospice and Palliative Medicine/Hospice and Palliative Nurses Association Annual Assembly; January 19-23, 2005; New Orleans, Louisiana. Abstract 318. Cited in Cooney, Gail Austin. Palliative Sedation: The Ethical Controversy. http://www.medscape.com/viewarticle/499472 (accessed 7/23/2008)
- Cooney, Gail Austen. Palliative Sedation: The Ethical Controversy http://www.medscape.com/viewarticle/499472 (accessed 7/23/2008)
The Author: Margaret Van Dyck, RN, BScN, CHPCN, is a community palliative care nurse practicing inDurham Region, Ontario, Canada
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