(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 patients 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 patient. 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 provide 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 interdisciplinary 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 Commentary in isolation from her or his circle of e Knowledge about symptom management intimates.6 8 has burgeoned over recent decades. Most Imminent death. Although pervasive in the symptoms can be managed with an excellent hospice and palliative care literature, ‘‘immi- knowledge of physiology, pharmacology, and nence’’ of death is rarely defined. Consistent complementary therapies. NHPCO recom- with the few articles in the literature that de- mends that patients with complex care needs fine imminence,9 this document uses the receive care from palliative care experts in con- term to mean a prognosis of death within 14 junction with care provided by their primary days. This definition is compatible with the care providers and other specialists as needed. commonly used terminology of death within This might require consultation of experts out- ‘‘days to weeks.’’ side of the hospice team. However, expert con- Intolerable suffering is suffering that pa- sultation is always recommended when tients perceive to be unbearable; only the pa- considering interventions or evaluating symp- tient can identify when suffering has become toms with which a hospice team has little expe- intolerable. It is the responsibility of the rience.2 In this commentary, definitions of health care team to use reliable and valid as- terms pertinent to the use of palliative seda- sessment measures to determine the level of tion in the palliative care of imminently dying suffering that the patient is likely to be e patients are offered. In addition, indications experiencing.10 12 When patients are unable for the use of palliative sedation, an overview to communicate, these assessments should be Vol. 39 No. 5 May 2010 NHPCO Position Statement on the Use of Palliative Sedation 917

evaluated with families to consider whether, are no other methods that will be effective based on the known values and wishes of the within the allowed time frame and the possibil- patient, suffering has reached a level that the ity of complications and degree of invasion are patient would declare intolerable were the pa- tolerable for the patient.’’13 (p. 720) (See also ‘‘In- tient able to communicate.13 tractable suffering’’.) Intractable suffering is suffering that has not Respite sedation is a term used by some as adequately responded to all trialed interven- interchangeable with palliative sedation. Pro- tions and for which additional interventions cedurally, however, respite sedation is adminis- are either unavailable or impractical (e.g., tered differently than palliative sedation. the patient is expected to die before an inter- Respite sedation is induced for a predeter- vention could become effective). (See also mined period of time to give the patient re- ‘‘Refractory suffering’’.) spite from intractable refractory suffering. At Palliative sedation (also called palliative the end of that period of time, sedation is re- sedation therapy) is the controlled administra- duced to allow the patient to awaken and as- tion of sedative medications to reduce patient sess whether the symptom burden has lifted, consciousness to the minimum extent neces- and determine if sedation is still required to ef- sary to render intolerable and refractory suffer- fectively address suffering. ing tolerable.14,15 Suffering signifies the broad range of ways Physician-assisted suicide (also called assis- in which patients can experience threats to ted suicide) is ‘‘when a physician facilitates their ‘‘personhood.’’18,19 Although often a patient’s death by providing the necessary caused bydor experienced simultaneously means and/or information to enable the pa- withdphysical pain, suffering can be the result tient to perform the life-ending act (e.g., the of injuries to many aspects of the self, includ- physician provides sleeping pills and informa- ing, but not limited to, the physical, psychoso- tion about the lethal dose, while aware that cial, spiritual, temporal, and existential realms. the patient may commit suicide).’’3 (p. 2229) Terminally ill is used in the hospice and pal- In cases of assisted suicide, medications are liative care community to refer to a life expec- self-administered by the patient, thereby distin- tancy of six months or less. guishing it from euthanasia. Terminal sedation is an older term for palli- Proportionality. The principle of proportion- ative sedation. Its use has fallen out of favor be- ality is used to argue that the benefits of any cause of the way in which the word ‘‘terminal’’ intervention should outweigh the burdens of was misinterpreted to imply that the sedation that intervention. In particular, proportionality itself caused or hastened death. requires that interventions with any risk of harm should be administered only to the degree Indications and Recommended Processes necessary to confer the desired amount of ther- Indications for palliative sedation most com- apeutic benefit. Proportionality guides the monly include pain, dyspnea, delirium, and rest- dose-response relationship in the prescription lessness that have been refractory to treatment of medication; patients need enough medica- anddeclaredbythepatientdor the patient’s tion to achieve the desired effect but not so surrogatedto have risen to the level of intolerable e much that significant adverse side effects will suffering.14,20 24 There are reliable and valid tools result. In palliative sedation, proportionality is to assess, and algorithms to manage, most symp- used to argue that any level of sedation in excess toms in imminently dying patients. It is the re- of that required to render suffering tolerable as sponsibility of those clinicians considering the defined by the patient cannot be justified.16 use of palliative sedation to integrate appropriate Refractory suffering is suffering that ‘‘cannot tools into the care of patients with these symptoms be adequately controlled despite aggressive ef- before the use of palliative sedation. ‘‘Existential forts to identify tolerable therapy that does not suffering,’’ addressed below, is also offered by compromise consciousness.’’17 (p. 31) This could some as an appropriate indication for palliative be because the suffering has been insufficiently sedation. responsive to interventions less suppressive of Although it is beyond the purview of this or- consciousness or because ‘‘on the basis of the ganization to make pharmacologic recommen- patient’s wishes and physical conditions, there dations, NHPCO recognizes that experts in 918 Kirk and Mahon Vol. 39 No. 5 May 2010

anesthesiology and in pain medicine have or families are considering continuing enteral made specific recommendations. NHPCO administration, the balance of benefits and also recognizes that many of the medications burdens should be thoroughly reviewed. An used in palliative sedation can create their ethically relevant consideration is whether own burden and, if administered incorrectly, the administration of fluids will relieve or exac- can even cause death.21 As such, judicious erbate symptoms.28 Although provision of use should be guided by an evidence-based fluids has been shown to alleviate some symp- clinical protocol and ongoing monitoring by toms in some patients, fluid overload causes clinicians who are experienced with these its own set of symptoms. Authors of a Cochrane medications and palliative sedation. Consider- review concluded, ‘‘There are insufficient ations of effectiveness and safety ‘‘to prevent good quality studies to make any recommenda- the mislabeling of palliative sedation as ‘eutha- tion for practice with regard to the use of med- nasia by proxy’’’ are essential.25 (p. e2) ically assisted hydration in palliative care patients.’’29 Of note, these recommendations Continuation of Concurrent Life-Sustaining were made about the general use of ANH Therapies and did not apply specifically to patients un- Implementation of palliative sedation can- dergoing palliative sedation. not be done without simultaneous consideration of other therapies being received by, or Proximity to Death available to, the patient. In this document, pal- There is debate in the literature concerning liative sedation is being considered for the pa- the relevance of a patient’s proximity to death tient whose death is imminent (defined as as a prerequisite for palliative sedation. An in- expected in less than two weeks). NHPCO rec- formal review of institutional protocols by ommends that all patients receiving palliative NHPCO Ethics Committee members reveals sedation have a do-not-resuscitate/do-not- that many policies require that patients be im- attempt-resuscitation order in effect.26,27 minently dyingdthat is, within ‘‘hours to days’’ For patients undergoing sedation whose of deathdbefore palliative sedation is consid- death is imminent, it should be extremely ered. Authors of one published review note rare for therapies such as dialysis, chemother- that proximity to death is sometimes central apy, or transfusions to be continued once pal- to defining the intervention itself: ‘‘Palliative liative sedation has been initiated. sedation is the intentional lowering of con- Medications that are likely to contribute to on- sciousness of a patient in the last phase of his going patient comfort should be continued or her life.’’24 (p. 667) Some use the phrase ‘‘ac- (see also ‘‘Proximity to Death’’ below). tively dying’’ to demarcate the time when palliative sedation is appropriate. This term is used Concerning Artificial Nutrition and in widely different ways to encompass time pe- Hydration riods from minutes to months, although more Patients being lightly sedated may be able to commonly ‘‘actively dying’’ refers to a time of eat or drink as desired. Patient-controlled in- hours to days. Others argue that proximity to take of food and fluids is unlikely, however, death is not as significant as the intensity of with moderate to deep sedation. Consider- a patient’s symptom distress.30,31 ation of whether to begin or continue artificial NHPCO argues that, as physicians are often nutrition and hydration (ANH) should be dis- inaccurate in their prognostication,32,33 identi- cussed with the patient and family before be- fying an appropriate time frame for the use of ginning palliative sedation. Any decision palliative sedation may lead to suboptimal use about ANH should be made separately from of palliative sedation. Indeed, although some a decision about palliative sedation.14,20 Pa- may argue that proximity to death is an impor- tients undergoing palliative sedation may or tant consideration, NHPCO believes that such may not have already in place some means of consideration is always secondary to the pri- vascular access for the administration of medi- mary goal of all hospice and palliative care: cation. Thus, the question of burden of access safe and effective palliation of symptom dis- for parenteral administration of nutrition or tress in accordance with clinical indications hydration should be considered. If patients and the goals of the patient. Therefore, there Vol. 39 No. 5 May 2010 NHPCO Position Statement on the Use of Palliative Sedation 919

may be some situations in which patient suffer- practice recommendations for palliative seda- ing is so severe and refractory to other inter- tion are rapidly evolving. This education ventions that proximity to death becomes far should address symptom assessment and man- less important than the relief of suffering agement, review evidence-based protocols for itself. inducing sedation, and discuss the ethical con- However, if sedation is continuous, pre- siderations of the process and the procedure cludes oral intake, and artificial nutrition and of palliative sedation. Education must also ad- hydration are not going to be administered, dress family-centered care. it is possible that dehydration could become NHPCO recommends that, beyond techni- a contributing cause of death for patients cal competence, health care professionals with a life expectancy of greater than two working in hospice and palliative care settings weeks. In such cases, another set of ethical understand the potential for misunderstand- and philosophical questions is raised. It is for ing and the highly charged emotions that this reason that NHPCO limits the scope of can accompany the practice of palliative seda- this position statement to patients whose death tion. Providers on the interdisciplinary team is imminent. must be familiar with the wide array of modal- ities available to address patient suffering and Level of Sedation be able to help patients, families, and team The administration of sedation should be members ensure that less invasive options guided by the level of consciousness reduction have been exhausted before initiating pallia- required to sufficiently relieve symptoms. Se- tive sedation. Education of team members dation exists on a spectrum. Palliative sedation must include opportunities to address staff is undertaken with the goal of alleviation of concerns about palliative sedationdespecially symptom burden. For most patients, this oc- by explaining the important distinctions be- curs when patients are sleepy but rousable. tween palliative sedation, assisted suicide, and For others, symptom relief does not occur un- euthanasiadbefore clinicians are asked to pro- til the patient is deeply sedated (unrousable; vide this therapy. unconscious). NHPCO recommends that seda- Caring for imminently dying patients who tion be carefully controlled and titrated pro- are suffering intensely can exert a significant portionately, such that the extent of sedation emotional toll on families and even the most is the minimum required to render symptom experienced clinicians. In particular, such suf- distress tolerable to the patient. Verkerk fering can create an environment in which et al.24 (p. 667) emphasize the need for propor- the risk for countertransference and feelings tionality, proper indications, and adequacy ‘‘so of caregiver helplessness is especially high. that a peaceful and acceptable situation is cre- Careful attention must be paid to acknowledg- ated.’’ As with most medical therapies, a ‘‘one ing and addressing these phenomena so that size fits all’’ approach is inadequate. A 2005 decisions regarding sedation can be made on study indicated that palliative sedation was the basis of the patient’s suffering and wishes inadequate in providing symptom relief in and not the countertransference or feelings 17% of patients.34 Davis35 recommends use of helplessness of family members or clini- of a sedation scale to ensure that, when pallia- cians. NHPCO recommends that training re- tive sedation is used, sedation is adequate to lated to palliative sedation includes content achieve symptom relief. on identifying and managing family and clinician emotions related to intense suffering. Education and Clinician Support In addition to expertise in palliative care, Palliative Sedation Distinguished from those involved in the consideration and imple- Euthanasia and Physician-Assisted Suicide mentation of palliative sedation must have ad- Although palliative sedation, euthanasia, and ditional and specific competence in providing physician-assisted suicide ostensibly share the palliative sedation. All those potentially partici- goal of alleviating patient suffering, they are pating in the assessment for and/or provision clinically and ethically distinct. Optimal utiliza- of palliative sedation should be involved in on- tion of palliative sedation requires an accurate going education, as the evidence base and understanding of these differences. For 920 Kirk and Mahon Vol. 39 No. 5 May 2010

patients who are imminently dying, palliative se- euthanasia or assisted suicide is illegal dation is ethically distinct from euthanasia and risks significant negative consequences physician-assisted suicide in at least three ways: for all involved. Such consequences are ethically relevant. 1. Effect Reluctance to use palliative sedation often Properly administered palliative sedation exists because of a belief that it hastens death. does not involve the ‘‘administration of Optimally done in imminently dying patients, a lethal agent’’ and does not cause however, palliative sedation does not hasten death.22,36 death.14,20 Rietjens et al.22 found no difference in the survival times between patients who 2. Instrument of Relief were sedated and those who were not. As evi- denced by their studies of opioids and seda- Although the goals of palliative sedation, tives at the end of life, Sykes and Thorns23 euthanasia, and physician-assisted suicide concluded that appropriate knowledge and may be similardthe relief (or preven- skill allows the administration of appropriate tion) of intractable sufferingdthe instru- doses of medication to manage symptoms with- ment through which those goals are out hastening death. Similar findings were re- pursued in palliative sedation is categori- ported by Kohara et al.38 cally distinct from those used in euthanasia or physician-assisted suicide. In Frequency of Use palliative sedation, relief of suffering is 25 Palliative sedation should be used rarely. sought via the minimum level of con- Prevalence of the use of palliative sedation in sciousness reduction required to de- terminally ill patients has been reported be- crease awareness of distress to a level 14,20,22,23 tween 1% and 52%. NHPCO supports tolerable as defined by the patient. In eu- the use of palliative sedation only in cases where thanasia and physician-assisted suicide, alternative interventions have been exhausted relief (or prevention) of suffering is or are otherwise inadvisable (e.g., when the pa- sought via the death of the patient. In tient is expected to die before an alternative in- palliative sedation, death is not used as tervention is expected to become effective). As a means to achieve symptom relief. such, NHPCO regards the upper end of this Rather, death occurs at some point after range as problematic. Although the prevalence the relief of suffering is achieved. of palliative sedation will appropriately vary in correlation with the complexity of illness and se- 3. Legality verity of suffering in the patient population of In the United States, euthanasia is not le- each care service, a high percentage of patients gal. As this statement goes to press, receiving palliative sedation should be cause for physician-assisted suicide is currently a le- concern. Such a phenomenon could be an indi- gal option for patients in Oregon, Wash- cator that the full spectrum of interdisciplinary ington, and Montana (under review). interventions for suffering is not being effec- Palliative sedation is legal and is an appro- tively explored and trialed. priate clinical option throughout the United States. Indeed, the U.S. Supreme Palliative Sedation and Existential Suffering Court has acknowledged palliative seda- NHPCO acknowledges deep disagreement tion as a safe, legal, and reasonable alter- among highly skilled and ethically informed native to assisted suicide.37 Palliative palliative care specialists regarding the appro- sedation does not ask patients, family priateness of palliative sedation in imminently members, or health care providers to vio- dying patients whose intolerable refractory suf- late the law. Although an intervention’s le- fering is primarily nonphysical in origin. Diffi- gal status and ethical status are not culties in discussing interventions for necessarily equivalent, asking health care existential suffering are compounded by the providers as a part of good practice to vio- lack of a clear, widely used definition of ‘‘exis- late the law in jurisdictions where tential suffering’’ itself. Such suffering also Vol. 39 No. 5 May 2010 NHPCO Position Statement on the Use of Palliative Sedation 921

poses the following particular challenges re- suffering. The dynamic nature of existential lated to palliative sedation. suffering suggests that trials of respite sedation, rather than continuous sedation, may 1. Existential suffering may occur much ear- be an appropriate place to begin if a decision lier in the disease trajectory (i.e., before to proceed with sedation is reached.28 In these death is imminent) than other kinds of cases, in addition to a medically led interdisci- suffering. As such, if patients with a life plinary team with clinical expertise in palliative expectancy exceeding two weeks require care, and an individual review of each case, sedation which precludes oral intake NHPCO recommends consulting mental and refuse ANH, many experts believe health and spiritual care experts with experi- that such sedation can become a contrib- ence in the realm of existential suffering. uting cause of death.

2. The availability of, and evidence support- ing, interventions of any kinddmedical Case Review and Utilization Review or otherwisedfor existential suffering in Given the importance of monitoring fre- imminently dying patients is extremely quency noted above, NHPCO recommends limited and uneven. As such, palliative regular review of the utilization of palliative se- care specialists who argue that psychoso- dation. Most institutions have a mechanism for cial interventions are more appropriate regular review of policies and specific prac- for such suffering than palliative sedation tices. This often occurs under a continuous are unable to identify or recommend spe- quality improvement model. We recommend cific concrete interventions that are formalization of the process of review. Care or- widely available and based on evidence ganizations should determine an appropriate of demonstrated effectiveness. schedule of review (i.e., quarterly, semiannu- ally, and annually) based on 1) frequency of 3. Unlike intractable and refractory suffering utilization, 2) varying level of acuity/complex- which is primarily physical and usually pro- ity in the patient population, and 3) level of ceeds on a trajectory of increasing inten- team experience with severe symptom manage- sity, existential suffering can be highly ment and palliative sedation. Review should dynamic, following no predictable pattern examine each case and explore trends in: of severity. Therefore, suffering that is in- 1. indications/symptoms for which pallia- tractable and refractory today may be far tive sedation was offered; less so tomorrow or the next day. 2. therapies (medication, doses, and other NHPCO believes that the primary ethical treatments) that had been trialed to duty of hospice and palliative care profes- manage symptoms before sedation; sionals is to acknowledge, address, and (when 3. the patient’s and family’s understanding possible) relieve the suffering of terminally ill of the goals of the therapy, and the na- patients in a manner that is consistent with ture of the informed consent discussion the norms and values of patients, families, with the patient and family; and health care professionals. The lack of 4. decisions regarding the continuation of a widely accepted definition of ‘‘existential suf- other life-sustaining interventions, in- fering,’’ combined with the difficulties articu- cluding nutrition and hydration; lated in points 1 to 3 above, has resulted in 5. the titration of sedation, including the NHPCO Ethics Committee being unable depth of sedation required for symp- to reach consensus on a recommendation re- tom relief and how this was mea- garding the use of palliative sedation for suffer- sured, and ing that is primarily nonphysical in origin. The the process by which symptom dis- organization urges great caution and multiple tress was evaluated during titration; careful discussions among interdisciplinary team members, families, and patients when 6. ways in which the family was supported considering the use of sedation for such during and after sedation; 922 Kirk and Mahon Vol. 39 No. 5 May 2010

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