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(NHPCO) Position Statement and Commentary on the Use of Palliative Sedation in Imminently Dying Terminally Ill Patients Timothy W

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(NHPCO) Position Statement and Commentary on the Use of Palliative Sedation in Imminently Dying Terminally Ill Patients Timothy W 914 Journal of Pain and Symptom Management Vol. 39 No. 5 May 2010 NHPCO Special Article National Hospice and Palliative Care Organization (NHPCO) Position Statement and Commentary on the Use of Palliative Sedation in Imminently Dying Terminally Ill Patients Timothy W. Kirk, PhD, and Margaret M. Mahon, PhD, RN, FAAN, for the Palliative Sedation Task Force of the National Hospice and Palliative Care Organization Ethics Committee Department of History & Philosophy (T.W.K.), City University of New YorkdYork College, Jamaica, New York; and School of Nursing (M.M.M.), College of Health & Human Services, George Mason University, Fairfax, Virginia, USA Key Words Palliative sedation, hospice care, palliative care, terminal care, ethics, medical ethics, intractable pain, position statement, practice guideline, decision making Introduction definition of ‘‘palliative care’’ put forth by the National Quality Forum.1 It reads: The National Hospice and Palliative Care Organization (NHPCO) endorses the Palliative care refers to patient- and family- centered care that optimizes quality of life by anticipating, preventing, and treating suf- This paper was written by Timothy W. Kirk, PhD, and fering. Palliative care throughout the contin- Margaret M. Mahon, PhD, RN, FAAN, on behalf of uum of illness involves addressing physical, the Palliative Sedation Task Force of the National intellectual, emotional, social, and spiritual Hospice and Palliative Care Organization (NHPCO) needs and facilitating patient autonomy, ac- Ethics Committee. Members of the Palliative Seda- 1 (p. 3) tion Task Force were Timothy W. Kirk, PhD (Chair), cess to information, and choice. Kathleen Bliss, MSN, RN, CHA, Pamela Dalinis, MA, The purpose of palliative care is to provide ag- BSN, RN, Margaret M. Mahon, PhD, RN, FAAN, Mar- tha McCusker, MD, FACP,W. Brian Guthrie, MD, Mar- gressive symptom management, supported de- ian Silverman, PhD, RN, CHPN, and Joseph Wadas, cision making, and, when appropriate, STL. This paper was approved by the NHPCO Ethics optimal end-of-life care. Palliative care is Committee in October 2009 and the NHPCO Board family-centered although in those cases in which of Directors in December 2009. the needs and preferences of the family counter Creation of this manuscript was not supported by the best interests of the patient, the needs of the external funding. All members of the NHPCO Ethics Committee are volunteer members. patient are primary. In rare cases where patient suffering is especially resistant to other forms of Address correspondence to: Timothy W. Kirk, PhD, De- partment of History and Philosophy, CUNYdYork treatment, one of the therapies available to pal- College, 94-20 Guy R Brewer Blvd., Jamaica, NY liative care teams is palliative sedation. 11451, USA. E-mail: [email protected] Palliative sedation is the lowering of patient Accepted for publication: January 4, 2010. consciousness using medications for the Ó 2010 U.S. Cancer Pain Relief Committee 0885-3924/$esee front matter Published by Elsevier Inc. All rights reserved. doi:10.1016/j.jpainsymman.2010.01.009 Vol. 39 No. 5 May 2010 NHPCO Position Statement on the Use of Palliative Sedation 915 express purpose of limiting patient awareness the patient to rest comfortably but to of suffering that is intractable and intolerable. be aroused. For the limited number of imminently dying pa- tients who have pain and suffering that is (a) 3. Interdisciplinary Evaluation unresponsive to other palliative interventions Palliative sedation is a medical treatment. As less suppressive of consciousness and (b) intol- such, there must be a physician with exper- erable to the patient, NHPCO believes that tise in palliative care leading the interven- palliative sedation is an important option to tion. Suffering at the end of life, however, be considered by health care providers, pa- is a phenomenon that may respond best to tients, and families. As this practice continues the efforts of a highly skilled interdisciplin- to be addressed in the professional and lay lit- ary team. As such, NHPCO recommends eratures, discussion of palliative sedation is of- the practice of convening an interdisciplin- ten framed in ethical terms. The following ary conference specifically about the use of statement and commentary seek to clarify the palliative sedation for each patient with position of NHPCO on the use of palliative se- whom it is being considered. Such confer- dation for patients at the end of life, recom- ences should include practitioners from mend questions and issues to be addressed in many disciplines who can speak to the mo- each case for which palliative sedation is being dalities available in their disciplines and dis- considered, and assist health care organiza- cussthedegreetowhichtheyhavebeen tions in the development of policies for the tried and exhausted. Expertise is required use of palliative sedation. This statement ad- in pharmacology, management of pain dresses the use of palliative sedation only for and other symptoms, interventions targeted patients who are terminally ill and whose death at the aspects of suffering that are psycho- is imminent. logical, interpersonal, spiritual, and other domains as relevant to each individual pa- tient. In all cases, care must be patient- Position Statement and family-centered. 1. Availability 4. Education Palliative sedation is an important tool In addition to expertise in palliative care, among the spectrum of therapies avail- those involved in palliative sedation must able in hospice and palliative care. For have training and competence in this par- the small number of imminently dying ticular intervention. As with all health care patients whose suffering is intolerable providers, those involved in the process of and refractory, NHPCO supports making providing palliative sedation should be en- the option of palliative sedation, deliv- gaged in ongoing education. This educa- ered by highly trained health care profes- tion should address symptom assessment sionals, available to patients. and management as well as the ethical considerations related to use of palliative 2. Proportionality sedation. Education must also address family-centered care. The goal of palliative sedation is to pro- vide relief from symptoms that are oth- 5. Concerning Existential Suffering erwise intolerable and intractable. Since the goal is symptom relief (and Increasing discussion in the hospice and not unconsciousness per se), sedation palliative care literature about the use of should be titrated to the minimum level palliative sedation for existential suffer- of consciousness reduction necessary to ing reflects the recognition that suffering render symptoms tolerable. For some can occur in all aspects of the per- patients, this may be total unconscious- sondeven when physical symptoms are ness. For most, however, it will be less well controlled. As with any other type than total unconsciousness, allowing of suffering, NHPCO believes that 916 Kirk and Mahon Vol. 39 No. 5 May 2010 hospice and palliative care professionals of ethical issues related to its use, and pro- have an ethical obligation to respond to cesses that can be implemented to address existential suffering using the knowl- those issues will be discussed. edge, tools, and expertise of the interdis- ciplinary team. Whether palliative Definitions sedation should be a part of that re- Euthanasia refers to ‘‘the administration of sponse is an important, growing, and un- a lethal agent by another person to a patient resolved question. Having carefully for the purpose of relieving the patient’s intol- reviewed the data and arguments for erable and incurable suffering.’’3 (p. 2229) That and against using palliative sedation for is, euthanasia is intentionally ending the life of existential suffering, the Ethics Commit- another person, usually with the goal of allevi- tee is unable to reach agreement on a rec- ating or avoiding suffering. ommendation regarding this practice. Existential suffering is suffering that arises NHPCO strongly urges providers to care- from a loss or interruption of meaning, pur- fully consider this question and supports pose, or hope in life.4,5 Importantly, there is further ethical discussion. NHPCO also no widely agreed on definition of existential encourages research within and across suffering. In the palliative sedation literature, disciplines to build an evidence base sup- it is often used to connote suffering that is porting multiple interventions for exis- not physical in etiology. In this document, tential suffering. the term is used to refer to suffering arising from a sense of meaninglessness, hopelessness, 6. Relationship to Euthanasia and Assisted fear, and regret in patients who knowingly ap- Suicide proach the end of life. Family-centered care is care that treats the Properly administered, palliative seda- patient and the patient’s intimates as recipi- tion of patients who are imminently dy- ents of care. It is based on the notion that suf- ing is not the proximate cause of fering and dying are phenomena that find patient death, nor is death a means to meaning in, and are experienced by, patients achieve symptom relief in palliative seda- and the powerful web of relationships in which tion. As such, palliative sedation is cate- they are situated. Palliative care is family- gorically distinct from euthanasia and centered insofar as it acknowledges that, fre- assisted suicide. quently, a patient’s suffering and death cannot be sufficiently palliated by treating the patient
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