A Guide for the End of Life A Review of Behoref. Hayamim/In the Winter of Life: A Values-Based Jewish Guide for Decision Making at the End of Life. edited by David Teutsch and Waxman (Reconstructionist Rabbinical College Center for Jewish Ethics, 2002)

BY NATAN FENNER

he Center for Jewish Ethics reminiscent of Reform responsa or at the RRC has produced a Conservative interpretations/conclu- useful, thoughtful, accessible sions of halakha; however, the book is andT topical guide for decision-making much more a guide and conversation- at the end of life. It provides concep- starter than a compendium of defini- tual frameworks, reasoning and guid- tive pronouncements and formulae. ance for making Jewishly informed, ethical decisions around end-of-life is- Values-Based Decision Making sues. The point of departure is a medi- cally up-to-date, academically grounded The opening chapter, “Jewish Val- and liberal Jewish perspective. ues and Decision Making,” by David Behoref. Hayamim contains a series Teutsch, provides an orientation to and of chapters drawing on each author’s an explanation of values-based deci- experience in the fields of medicine, sion-making, and of the key Jewish medical ethics, congregational and values and terms that inform much of Reconstructionist movement leader- the discussion of end-of-life care in the ship, chaplaincy and Jewish healing. succeeding chapters. One finds a clear The chapters address decisions and resonance with the Reconstructionist concerns commonly faced in end-of- approach to communal decision mak- life care, including: advance directives, ing in Teutsch's summary of the pro- life support and resuscitation, informa- cess of values-based decision making: tion-sharing and communication be- determine facts, alternative actions and tween patient and caregivers, pain man- their outcomes, and relevant beliefs and agement, bedside advice for those of- values; examine relevant scientific and fering emotional and spiritual support, social-scientific approaches to under- assisted suicide and Jewish burial and standing these; consider the historical mourning practices. Some authors and contemporary context, including reach conclusions or make arguments the history and rationales of Jewish

Rabbi Natan Fenner serves at the Bay Area Jewish Healing Center in San Fran- cisco, and on the board of the National Association of Jewish Chaplains.

76 • Spring 2005 The Reconstructionist practice; look for norms that might for individuals who are or should be exclude some actions; weigh the rel- considering or drawing up or revisit- evant attitudes, beliefs, and values; for- ing their own advance directive, a cat- mulate decision alternatives; seek con- egory that arguably includes anyone sensus . . . ; [and] make the decision over forty. Pages 22 to24 include a con- (5-6). cise explanation of the content, ap- Among the Jewish values and con- proaches, common complications and cepts identified in this chapter as rel- strategies of advance directives. The evant to the end-of-life conversation: chapter also brings a helpful discussion pikuah. nefesh (saving a life); eyt lamut of some of the inducements and im- (there is a time to die—accepting pediments — both from common ex- death’s inevitability); kevod habriyot perience and from those particular to (human dignity); b’tselem elohim (each the Jewish milieu — to completing ad- human being’s infinite worth derived vance directives. from being created in the image of In “End-of-Life Technologies,” Kav- God); and rahmanut. (compassion/ esh explains some of the medical pro- mercy). It also addresses terms more cedures most commonly addressed in specific to and commonly used in Jew- advanced directives relating to life-sup- ish bioethics discourse on end-of-life port, together with rationales for us- issues: terefa (a person certain not to ing or declining them. Particular atten- recover from a terminal illness) and tion is given to cardio-pulmonary re- goses (in talmudic literature, one whose suscitation (CPR), ventilators (artificial medical condition has so irreversibly respirators) and feeding tubes. deteriorated as to be expected to sur- In addition to outlining a medical vive no more than three days). This perspective on these technologies, Kav- introduction addresses both lay and esh makes frequent reference to professional readers, laying out a halakhic and ethical sources (mostly method for study and a foundation for from Conservative and Orthodox lit- a Jewish moral perspective on the ques- erature — the one citation of a Reform tions raised by the other authors. responsum in Behoref. Hayamim occurs in a footnote to Chapter 9), and to gen- Advice for Caregivers erally held Jewish values.

“Taking Control of Difficult Deci- Feeding Tubes sions,” by William Kavesh, contains information and advice about advance The section on the “effectiveness of directives that are helpful, particularly feeding tubes” is more accurately a de- for individuals who are or may be des- piction not of their utility and condi- ignated as caregivers, proxies, surrogate tions for likely success, but rather of decision-makers or as having healthcare their ineffectivess and risks, and ration- power of attorney. In fact, this chapter ales for forgoing them. For readers not provides useful questions and direction current with the medical literature and

The Reconstructionist Spring 2005 • 77 “best practices,” it reads like a critical The dying person and his or her famil- re-examination or reframing of an over- ial and professional caregivers have dif- used technology. In Kavesh’s view, tube ferent roles, obligations and challenges feeding shifts from a medical interven- in this regard. Wolpe cites a number of tion that is widely used and seen as an midrashic sources containing vignettes aid to life to an “impediment to the on healing in the context of peer and departure of the soul from the body.” caregiving relationships. (59-60) This chapter includes a sensitively Without including a rationale for written section on appropriate roles for when in a patient’s life this reclassifica- caregivers in helping someone in their tion of tube feeding becomes appro- meaning-making efforts as they con- priate, the logic behind this view could front illness or death. As many profes- be seen by some as unduly biased or sional caregivers who work with people overly broad in its application. The in hospice or with terminal illness know, chapter could benefit from Kavesh’s healing is possible — and the hope for perspective on why or when, and for healing can be a powerful motivator — what kinds of underlying conditions, even in the last days and hours of life. a feeding tube — still commonly of- Wolpe enumerates some areas where fered or prescribed by physicians in dying persons and those supporting many settings — might be an appro- them might seek healing (refuat ha- priate treatment option. This perspec- nefesh v’refuat haguf), including study, tive would lend the reader a greater prayer and communal and familial sense of balance or context for discern- ritual. ing how to respond, or what questions Among his more takhlis (practical) to ask or consider, when making such suggestions, Wolpe highlights the im- a decision. On the side of refuat ha- portance of having or arranging com- nefesh (healing of the spirit), Kavesh panionship and emotional support notes that it can be very reassuring for when “bad news” (i.e., a grave or po- family members to try feeding their tentially shocking diagnosis) is to be loved one orally after the removal of a delivered to someone, particularly if the feeding tube (61). physician or other bearer of such news is not prepared or in a position to re- The Role of Relationships main with the receiver of the news and offer that support. Wolpe also explains “Forming New Relationships,” by that in the often chaotic and emotion- Paul Root Wolpe, examines the role ally stressful setting of such conversa- and impact of relationships in refuat tions, designating a member of the per- hanefesh. The quality and intensity of sonal or professional care team to our primary familial, communal and record or remember important infor- professional caregiving relationships mation can be invaluable, as details are may significantly distress us, comfort easily forgotten, conflated or recalled us or otherwise shape our experience. out of context or out of proportion.

78 • Spring 2005 The Reconstructionist Acknowledging that some families others, only when the patient is not able prefer to keep significant medical (or to convey his/her wishes directly. In- ancillary) information hidden from a cluded in this section is a helpful clarifi- loved one whom they feel to be in a cation of the distinction between and ap- precarious condition, Wolpe advocates propriate places for substitute judgment for truth-telling as a general rule. In a and best-interest decision making. discussion that is essentially directed to Much of the discussion in this and physicians and family members of the other chapters focuses on the domain affected person,Wolpe notes the ten- within which terminally ill or dying sion placed on the entire caregiving persons are no longer able to make or system when it is asked to maintain a consent to medical decisions on their conspiracy of silence or outright decep- behalf. Wolpe notes some of the com- tion. In his view, truth-telling may in fact mon ways that families run into con- support greater trust and hope (read also: flicts over end-of-life treatment and care healing) on the part of the patient. decisions. Sometimes these conflicts are inescapable, but Wolpe gives suggestions Surrogate Decision-Makers that may lend helpful perspective in some and Pastoral Support cases, both to smooth the decision-mak- ing process and to support shelom bayit, In the chapter “Families and Treat- peace in the family. ment Decisions,” Wolpe articulates Wolpe notes that “rabbis well- some of the challenges and stresses of trained in hospital chaplaincy may be caregiving and caregiver decision-mak- better able to serve the role of inter- ing, including an all-too-common lack preter of complex medical ideas, but of clear guidance and support for those any rabbi can also serve in a pastoral engaged in this sacred and potentially role. . . . How the health-care team all-consuming endeavor. Wolpe delin- deals with the rabbi’s role may depend eates the roles that several of the pri- on the physician’s religion . . . as well mary constituents (family/loved ones, as the type of hospital or facility” (74). physician, rabbi) can play in support In fact, professional chaplains, of good decision making about end- whose ranks include many rabbis and of-life care. It bears emphasizing (more cantors, have special training not only than was done throughout the book) to serve in an interpretive role among that when her/his decision-making ca- patient, family members and the pacity is acknowledged, the patient’s health-care team, but also in helping voice is, in the normative medical and people address other issues that may legal view, the first and last to deter- impinge significantly on both decision mine preferences and treatment choices making and spiritual care/well-being, from among the given options. A sur- i.e. suffering, theological questions and rogate decision-maker takes over, and religious and cultural perspectives on a different level of responsibility de- illness and death. Professional chaplains volves upon the family or significant often enjoy a degree of standing and

The Reconstructionist Spring 2005 • 79 collegial rapport within a health-care prolongs the dying process… [or] institution that allows them to support causes or prolongs pain may be rejected or advocate effectively for religious, val- or discontinued; there are situations in ues-based decisions. Hence, when a which acceptance of death is in the best hospital or other facility has a profes- interest of the individual; . . . pain must sional chaplain on staff or available be treated as aggressively as necessary” through a community chaplain pro- (88). gram, that individual should be con- The scenarios articulating and hon- sidered as a potential resource to the oring the pain experienced by care-giv- dying person and the caregivers, which ers, and acknowledging the impact of may or, as is often the case, may not intense or sustained pain and suffering include a congregational rabbi. on decision making, may make for helpful, affirming reading for individu- Coping with Suffering als in that position. Given the room for decision-mak- Issues of pain and suffering, their ing autonomy and permissiveness personal and theological impact, and granted in this and other chapters of modes of coping and decision making Behoref. Hayamim, Segal also includes related to these issues are addressed in an important caveat that each indi- the chapter “Pain and Suffering” by vidual experiences pain, and may find Sheila Segal. This chapter includes an- comfort, in unique ways. Therefore, we ecdotes that lay out in concrete terms must always hearken and be sensitive different modes of companionship, not only to the broader field of options bikur holim. (visiting the sick), gemilut and to our own stance with regard to hasadim. (acts of kindness), and prayer end-of-life care, but to the particular on behalf of the person facing termi- per-son before us, with his/her incli- nal illness or imminent death, with the nations and experience, in his/her par- particular focus on addressing, reliev- ticular condition and moment. ing or forbearing physical and emo- tional pain. Spiritual Accompaniment Noting the blurred boundary in con- temporary experience between the tra- “End-of-Life Care,” by Myriam ditional categories or stages of goses and Klotz, concentrates on the opportuni- terefa, Segal considers a “person to be ties and demands inherent in spiritu- at the ‘end of life’ if he or she is suffer- ally accompanying the dying person. ing from a disease or condition for This chapter provides guidance for the which there is no cure and no reason- simple yet sometimes quite challeng- able hope of improvement” (87). Segal ing act of being with someone who is then delineates, for the person at the dying. Encouraging approaches to end of life who is also in pain, ethical prayer and to shared silence are offered guidelines surrounding the “duty to in support of meaningful and spiritu- relieve pain:” “any intervention that ally. supportive visits. Klotz also pro-

80 • Spring 2005 The Reconstructionist vides a succinct guide for conducting offer to pray on their behalf, or the a personalized healing service, which knowledge that they are remembered can be a resource for the professional during moments of communal prayer, officiant or for those inclined to con- such as a congregational mi shebeirakh vene such a service without the guid- prayer for healing, may be comforting. ance of a clergy member. The ill or dying person need not be The intended audience for this chap- present to derive a sense of spiritual ter seems to be professional caregivers support from others’ attentions; and a (medical or spiritual) with interest— community or a group of caregivers but perhaps without extensive train- may also find strength and comfort in ing—in what Klotz refers to as hitlavut linking together in this way. Further- ruhanit/spiritual accompaniment, or in more, the team-like bonds of connec- working with patients who are not so tion and support that are established versed in prayer or in articulating their or deepened among friends, family and own spiritual needs. a caring community may come to serve In describing some of the profound as an important, affirming bridge when personal, spiritual and relational that same group of people is mourn- transformations that can take place when ing together after the death. someone is dying, Klotz notes that care- Klotz also mentions the Vidui/death- givers can encourage healing and spiri- bed confessional prayer and who might tual development during this process. recite it as the end of life draws near While honoring the transformative po- [118]. For those who are encouraged tential of being present for and with to make use of this prayer or explore someone at the end of life, there is per- this liturgy further (there are a num- haps an unintended sense not only of ber of versions revolving around the opportunity, but also of expectation or central themes Klotz outlined), texts of responsibility for fostering some kind of and explanations for the prayer can be healing or growth that the caregiving found in various rabbi’s manuals, and reader might assume. Such a sense of re- in some daily prayerbooks (including sponsibility would for many seem unduly various Orthodox versions and the Re- heavy and — given that not all deaths form movement’s Gates of the House); appear graceful — unreasonable. and online in English (translation by Amy Eilberg at www.myjewishlearning. Healing Rituals com/lifecycle/Death/Dying/Text_ of_Viddui) and in Hebrew (a scanned Klotz’s presentation of healing ser- version can be found at www.ira vices or healing rituals pictures the kaufman.com/atneed/), among other identified recipient at the center of a sites. The Web site of the National Cen- circle of caring. For some people near- ter for Jewish Healing (www.ncjh.org) ing the end of their lives who may not is another source for readings, study have the interest or energy to partici- texts and prayers for those facing grave pate in this kind of choreography, the illness and death.

The Reconstructionist Spring 2005 • 81 Hospice Care Acceptable Actions at the End Of Life “A Time to Die: Reflections on Care for the Dying” by Amy Eilberg de- Wolpe’s chapter on “Ending Life” scribes what hospice is, and how a hos- explores the issues of hastening death, pice approach is consonant with both including suicide and assisted suicide, Jewish tradition and a holistic world and the nuances of active and passive view. The chapter enumerates com- euthanasia — which are among the monly expressed needs of dying people, more wrenching questions that are in- including the need to feel heard and to creasingly confronting ethicists and lay grieve. Eilberg advocates for a recogni- people alike when considering the con- tion of the preciousness of our finite dition and the desires of people suffer- lives informed by a clear awareness of ing with debilitating, terminal illness our mortality, the cultivation of which and intractable pain. can have profound and positive effects Wolpe refers to talmudic passages on our consciousness. describing the deaths of Rabbi Yehuda This chapter includes material that HaNasi and Rabbi Hanina ben Tera- would be helpful both to lay people and dion, and commentaries on the suicide health-care professionals who have of King Saul. In Wolpe’s understand- mixed feelings about hospice or who ing, these passages show not encour- labor under the conception that hos- agement but certainly some latitude for pice, with its inherent acknowledge- understanding and acceptance — ment of and concession to death’s in- bediavad/after the fact — of actions evitability, goes against values that hastened death in circumstances holds dear. Eilberg addresses directly that were dire, torturous to the point Jewish concerns about and perceived where there was a risk of desecration obstacles to hospice care. She balances of the Divine, and offering no possi- a historical orientation for “life at all bility of physical recovery or escape. cost” and “death as enemy” with an Regardless of the path chosen by indi- equally grounded Jewish concern for viduals confronting such dire and in- choosing treatment that addresses the tractable suffering when death is al- ill person’s most important concerns, ready imminent, Wolpe argues that and offers the greatest hope for reliev- “decisions made within the spirit of ing one’s most deeply felt pain and human caring and Jewish ethics that fears. Eilberg highlights the traditional have the medical and spiritual welfare Jewish teachings around the meaning of the dying patient firmly as the top of refuah sheleymah (complete healing priority are all touched ultimately by of body and spirit), death as a part of the presence of God” (147). life, eyt lamut (there is [a time to be born and] a time to die), and death as Goses or Terefa? a motivator for focusing our efforts for good while we are alive.1 Wolpe notes that “the model of goses

82 • Spring 2005 The Reconstructionist suggests that we can remove impedi- Reconstructionist Guide. It provides sen- ments (including, in the view of the sitive and comprehensive guidance for majority of scholars quoted in this vol- undertaking the decisions and the ume, respirators and feeding tubes that mitzvot associated with avelut/mourn- keep the goses from dying naturally), ing, k’vod hamet/honoring the deceased but not actively cause the death of an- and nihum. avelim/comforting mourn- other” (139). He then notes that “some ers. scholars suggest that modern dying fits This chapter is a thoughtful, useful, more into the category of the terefa, one liberal Jewish substitute for, or comple- who is clearly and severely terminally ment to, such classic, encyclopedic and ill” (and is expected to die within a more (Conservative/Orthodox) legally year)(139). framed works as Rabbi Maurice Lamm’s While both considerations empha- The Jewish Way in Death and Mourning size the “underlying intention . . . to and Rabbi Alfred J. Kolatch’s The Jew- maintain the dignity of the dying, and ish Mourner’s Book of Why. Among the not to unduly hasten their deaths” topics addressed are a Reconstructionist (139), the ramifications of this change approach (using a historically in- in classification are significant, as formed, humanistic/naturalistic lens) Wolpe deduces in the latter case the to questions about life after death. It is permissability not only of removing life well suited for lay readers (mourners, supports but also of administering pain individuals or communities preparing medications even in a way that may or wishing to offer comfort and sup- shorten life. port) seeking step-by-step guidance This section would have benefited and explanation regarding the impor- from greater detail and more reference tant elements and arrangements for to sources in the ethical literature that funerals, shiva and related topics. It spell out the criteria for determining may also serve as a resource of helpful when to use the terefa framework rather perspectives for clergy working with than that of the goses; the logical steps liberal Jews and addressing questions that proceed from the terefa designa- that arise in the contemporary context, tion; and the import Wolpe derives such as non-Jews mourning for Jews from the statement that “one who kills and vice-versa. the terefa is exempt from (earthly) pun- The chapter also provides practical ishment” (139). guidance and thoughtful suggestions from a Reconstructionist perspective Mourning Practices regarding infant death, the confluence of shiva and Jewish holidays, increas- “Death and Mourning” by Richard ingly common liberal practices and Hirsh appears, with only minor chang- concerns around cremation, and the es, as it was published previously by the recitation of Kaddish by other than Reconstructionist Rabbinical Associa- first-degree mourners or in the absence tion as The Journey of Mourning: A of a minyan.2

The Reconstructionist Spring 2005 • 83 A Need to Speak rabbah, brikh hu) that are part of the recitation. In the section addressing the com- forting of mourners during the first Traditional and Progressive year following their loss, the point is Perspectives made that “widows and widowers of- ten report that…they experienced the One element I found lacking in the loss of friendship with couples who book was guidance for liberal Jews who may not have known how to adjust” are caring and making decisions for (170). Indeed, in my experience work- loved ones who are more traditionally ing with bereaved individuals and with or halakhically observant. As a chap- grief support groups, many mourners lain who encounters a wide range of express a need to speak occasionally or Jewish practice and knowledge, I feel repeatedly of their loved ones or of their that this helpful collection would have feelings in the months after their loss, been strengthened by the inclusion of as part of their healing process. While advice or additional bibliographic re- counseling can be helpful, particularly, sources for this constituency. as Hirsh notes, when there is a long- Behoref. Hayamim is a very readable, term lack of adjustment to the loss, useful, and current volume that pro- friends or relations with the patience vides good resource material for a realm to do so should indicate their interest, of decision making and care that is in- willingness and availability to listen. creasingly common and increasingly I had a minor quibble with the state- important in many of our lives. The ment that Reconstructionist Judaism book contains helpful anecdotes, a fa- “no longer affirm[s] many of the tradi- miliar Reconstructionist lens and cita- tional ideas about life beyond death” tions for many of the rabbinic sources (172). While I agree that the movement that inform discussions of Jewish end- does not endorse many of these views, of-life-care ethics, without trying to I am among many Reconstructionist arrive at or present a particular halakhic rabbis who, in practice, frequently ex- stance for its liberal readers. The chap- plore, work with and at least indirectly ters would make excellent stand-alone affirm individual mourners’ sometimes study texts in adult or continuing pro- traditional, other-worldly, and even fessional education settings, as well as admittedly irrational views about life for individuals or families wanting to after death.3 clarify their values or formulate advance To Hirsh’s advocacy for the traditional directives in a Jewishly informed way. practice of having only mourners (rather The book is recommended reading for than the entire congregation) recite congregational clergy, and other lay and Kaddish Yetom (the Mourner’s Kaddish) professional caregivers who seek a lib- (175), I would add that communal sup- eral Jewish perspective on end-of-life port is expressed, in part, through the issues. collective responses (amen, yehei sh’mei

84 • Spring 2005 The Reconstructionist 1. Another polemic addressing Jewish con- comfort you along with all the mourners cerns about “giving up” and shifting into a of Zion and Jerusalem,” while many have palliative mode is found in the concise understood this phrase as embodying mes- volume by Rabbi Daniel S. Brenner, et al., sianic hopes, as Hirsh notes (160), another Embracing Life and Facing Death: A Jewish widely recognized meaning given to these Guide to Palliative Care (CLAL, 2002). words has to do with the recognition and This guide also outlines some of the pri- comfort of being part of and somehow con- mary tasks — as understood by longtime nected to a larger community of mourn- proponents of the hospice movement and ers across the continents and the genera- Jewish spiritual care providers—associated tions. with, for example, responding to a diag- 3. Hirsh does note that irrespective of what nosis, formulating advance directives and a movement’s ideology or theology may an ethical will, living with illness, address- suggest, “individual Jews will choose what ing suffering, seeking forgiveness and mak- they believe about life beyond death — ing peace in one's relationships and recit- regardless of their denominational affilia- ing the vidui/deathbed prayer. tion. In such a highly personal area of spiri- 2. Regarding the customary graveside reci- tual conviction, that is entirely appropri- tation, HaMakom yinahem. /“May God ate” (160).

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