#422

Bioethical Distinctions of End-of-Life Care Practices

  • Travis Rinderle DO
  • James Willett MD

Download PDF

Background: Clinicians who care for seriously ill patients must be able to distinguish commonly referred terms in the published medical literature and lay press that aim to define end-of-life care practices. This Fast Fact offers a concise review of these terms and practices.

Withholding or withdrawing life-sustaining interventions: A patient with decision-making capacity may choose to withhold or withdraw life-sustaining therapies such as mechanical ventilation, hemodialysis, medically assisted nutrition and hydration (MANH), a pacemaker, etc. if such therapies are not meeting an agreed upon medical goal of care, even if doing so is anticipated to lead to a shorter survival (1). A surrogate decision maker can also make this request ethically if it aligns with the incapacitated patient’s best interest or substituted judgment (1). The ability of a surrogate to withdraw MANH (colloquially referred to as artificial hydration and nutrition) in an incapacitated patient, can be more nuanced, however. For example, in some states, there must be clear evidence MANH is not wanted anymore if the surrogate was not designated as power of attorney by the patient (2,3).  It is important that clinicians be aware of their institutional and state legal precedence regarding MANH.

Use of opioids in terminally ill patients: Since pain and dyspnea are common as patients near the end of life, the use of appropriately dosed opioids is legal and supported by bioethicists. The principle of double-effect has been utilized to justify the use of opioids at the end of life, since the primary aim (relief of pain or dyspnea) outweighs or is proportional to any unintended potential adverse effects (decreased consciousness or respiratory drive). Some question whether the principle of double effect is even needed to justify the use of opioids for symptomatic patients nearing the end of life, since published evidence suggests that appropriately dosed opioids do not shorten survival in these patients (4). 

Palliative Sedation (PS) commonly refers to the use of medications to relieve suffering by decreasing patient alertness for refractory symptoms in a terminally ill patient (5). Within this definition, deliberate deep sedation often describes the use of a continuous infusion to induce a level of unconsciousness which patients cannot be easily aroused from, and proportionate sedation describes the use of sedatives which are progressively increased according to symptom burden, resulting in unconsciousness in some cases and retention of awareness in others (6). Agitated delirium, severe dyspnea, and uncontrolled pain are common indications for PS (7,8). Midazolam, lorazepam, pentobarbital, and propofol are commonly utilized agents (7,8).  See Fast Facts # 106 and 107.  

Voluntary Stopping of Eating and Drinking (VSED): A deliberate decision to avoid hydration and nutrition, including parenteral fluids or feeding tubes (9). This is an ethically and legally acceptable process in decisional patients with a terminal illness. It offers the option of resuming eating and drinking at any point. Questions about decision-making capacity as care evolves, symptom management, and acceptability in care settings such as long-term care facilities can make requests for VSED complex. VSED in non-decisional patients is more controversial but has been described. See Fast Fact #379.    

Medical assisted death/medically assisted suicide/physician assisted suicide/physician aid in dying (death): The process in which a terminally ill individual with decision-making capacity works with their clinician to be prescribed a life-ending medication, which the person self-administers at the time of their choosing. While a variety of terms are used to describe this practice, there is not clear consensus on the preferred phrasing. In general, there is broad public support in many states and countries as it enables a sense of autonomy, perhaps even enables psychological comfort for some patients even if the medication is not used. It is legal in many states and Canada, but bioethical concerns about whether the intended effect of death is proportional to the intended benefit of relief of suffering makes it controversial. AAHPM has expressed “studied neutrality” (11); the IAHPC expressed it should only be legalized in countries/regions with universal access to appropriate palliative care services and medications (12).

Euthanasia: The intentional act of a third-party, usually a physician, to administer a life-ending medication to a patient. Euthanasia may be subdivided into voluntary, non-voluntary, and involuntary forms, which are ethically distinct, as is the controversial application of “voluntary euthanasia” to mentally capable, informed patients who do not suffer from a terminal illness. Most major medical groups such as the AMA and AAHPM do not support euthanasia due to bioethical concerns about proportionality and the appropriate role of clinicians. Voluntary euthanasia for patients with intractable suffering from a terminal illness, is legal in many countries such as the Netherlands, Colombia, Belgium, Australia, Luxembourg, Canada, and Spain (13). In Canada, both lethal prescription for self-ingestion and direct administration by a clinician for a decisional patient are referred to as Medical Aid in Dying (14).

 Withholding/ withdrawing life-sustaining therapiesUse of opioids in the terminally ill Palliative Sedation  VSEDMedically assisted suicide/ death  Euthanasia
GoalRelief of suffering from medical interventionsRelief of sufferingRelief of sufferingRelief of suffering through the primary intention of shortening survivalRelief of suffering through the primary intention of shortening survivalRelief of suffering through the primary intention of shortening survival
MeansDiscontinuing interventions providing iatrogenic discomfortPharmaco-logic treatment of pain or dyspneaPharmaco-logic sedation of refractory symptomsStopping oral intake that sustains lifeMedical killingMedical killing
AgentClinician, surrogate, and/or patientClinicianClinicianPatientPatient via medication prescribed by a clinicianPhysician
Cause of deathPrimary illnessPrimary illnessPrimary illnessDehydration or starvationMedication administered by the patientMedication administered by the clinician

*Table adapted from Olsen et al. (15)

References

  1. American Medical Association.  Chapter 5: Code of Medical Ethics: Caring for patients at the end of life. Available at: https://www.ama-assn.org/delivering-care/ethics/code-medical-ethics-caring-patients-end-life  Last accessed June 7, 2021
  2. U.S. Supreme Court. Cruzan v. Director, Missouri Department of Health. Wests Supreme Court Report. 1990 Jun 25;110:2841-92. PMID: 12041283.
  3. Jaeger JA.  The bright misplaced line: persistent vegetative state and withdrawal of artificial sustenance.  Marquette Elder’s Advisor 2000; 1(4):Article 4.
  4. Fohr SA. The Double Effect of Pain Medication: Separating Myth from Reality. Journal of Palliative Medicine. 1998;1(4):315-328. doi:10.1089/jpm.1998.1.315 
  5. Starks H, Dudzinski D, White N, Braddock III CH. Physician Aid-in-Dying. https://depts.washington.edu/bhdept/ethics-medicine/bioethics-topics/detail/73. Accessed March 6, 2021. 
  6. Imai K, Morita T, et al.  Efficacy of two types of palliative sedation therapy defined using intervention protocols: proportional vs deep sedation.  Supportive Care in Cancer 2018; 26:1763-71.
  7. Lux MR, et al. A survey of hospice and palliative care physicians regarding palliative sedation practices. Am J of Hospice and Pall Med 2015; 34(3): 217-222; Elsayem A, et al. Use of palliative sedation for intractable symptoms in the palliative care unit of a comprehensive cancer center. Supp Care in Cancer 2009; 17(53); 
  8. Maiser s, et al. A survey of hospice and palliative care clinicians’ experiences and attitudes regarding the use of palliative sedation. JPM 2017.
  9. Voluntarily Stopping Eating and Drinking (VSED). Compassion & Choices. https://compassionandchoices.org/end-of-life-planning/learn/vsed/. Accessed March 6, 2021. 
  10. Medical Aid in Dying is NOT Assisted Suicide. Compassion & Choices. https://compassionandchoices.org/about-us/medical-aid-dying-not-assisted-suicide/. Published February 12, 2020. Accessed March 6, 2021. 
  11. AAHPM Board of Directors. Statement on Physician-Assisted Dying. 2016. Available at http://aahpm.org/positions/pad. Last accessed 4/19/2021
  12. De Lima, L, et al.  International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide. Journal of Palliative Medicine, 2017; Vol 20 (1). Pages 8 – 14.
  13. Euthanasia & Physician-Assisted Suicide (PAS) around the World – Euthanasia – ProCon.org. Euthanasia. https://euthanasia.procon.org/euthanasia-physician-assisted-suicide-pas-around-the-world/. Published December 3, 2020. Accessed March 6, 2021.
  14. Gilbert S. Physician aid in dying? Euthanasia? Getting the terminology straight. Center for Health Journalism. https://centerforhealthjournalism.org/2015/09/15/physician-aid-dying-euthanasia-getting-terminology-straight. Accessed March 6, 2021.
  15. Olsen ML, Swetz KM, Mueller PS. Ethical decision making with end-of-life care: Palliative sedation and withholding or withdrawing life-sustaining treatments. Mayo Clinic proceedings. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2947968/. Published October 2010. Accessed April 28, 2021.

Authors’ Affiliations: Saint Joseph Hospital, Denver, CO

Conflicts of Interest:  None

Version History: originally edited by Sean Marks MD; first electronically published June 11, 2021. Based on reader feedback a revised version was published June 25, 2021 to better reflect the lack of consensus in terminology and the distinctions between voluntary and involuntary euthanasia.