Safe Passage: A Global Spiritual Sourcebook for Care at the End of Life
Reviewed by Dale Goldsmith, Religion/Academic Dean, Retired
Until modern times, dying and death had been an immediate reality to everyone. Then – this is the short version – medicine came up with ways to postpone dying and distance us from death; and we made a point to shut it out of our thinking. Our institutions served as bulwarks for just that purpose. Spoiler alert: death and dying are slowly making a comeback – at least in terms of attention being paid by two of the institutions that had lost focus: medicine and religion.
Safe Passage is a brief compendium of ways in which modern medicine and major religions attempt to co-navigate the personal voyages of the dying and their caregivers. “Safe passage” is the metaphor for an environment that would facilitate a “good death.” Safe Passage offers an historical overview of the growth (and challenges to growth) of the hugely important breakout of palliative care from the procrustean grip of modern medicine and the idea that cure of the body is the primary purpose of medicine. This breakout can be dated from 1967 when Dame Cicely Saunders established the first hospice, St, Christopher’s, in a London hospital. She was motivated by her Christian faith and guided by a comprehensive diagnosis of “total pain” that included everything human that could be threatened by a terminal ailment. Thus the new, cumbersome, but more adequate biopsychosocial-spiritual model of care that distinguishes a hospice or palliative approach and is characterized by symptom control, attention to death-related nonclinical issues, and delivered by an interdisciplinary team to both patient and family.
The first section of this book describes the birth and growth of palliative care and the various mechanisms of delivery in seven areas of the world: the U.S., Africa, Europe, India, Latin America, Middle East/North Africa, and Asia-Pacific. Successes are found everywhere, from the 1982 passage of the Medicare Hospice Benefit and 5,300 hospice programs systematically operational in the U.S. today to Sri Lanka where there is one physician trained in palliative care and the country “is at the point of a major development” (53). Details are provided to warrant the conclusion that “35 countries in the world [have] hospice/palliative care services [that] are achieving a measure of integration with mainstream providers and gaining wider policy recognition” (61). At the same time, the authors remind us that “for most of the world’s population [of whom 58 million die annually] … palliative care is not available” (95). Even in the U.S., where 45 percent of all deaths in 2012 occurred in hospices, those stays were of short duration. This points to several of the challenges slowing wider acceptance of a hospice/palliative care model: a limited number of medical professionals with appropriate training; a lack of a sufficiently educated public; and (in other cultures) anxiety about using or shortages of opiates to control pain.
The second (largest) part of Safe Passage focuses on five clinical end-of-life examples: sudden death; cancer; Alzheimer’s; AIDS; heart disease. A representative of each of 13 religious perspectives offers a response to each case. (Those spiritual traditions include Buddhist, Confucian, Christian, Hindu, indigenous, Jewish, Muslim, Sikh, and Unitarian Universalist.) Respondents agree that a “safe passage” with dignity and care at the end of life is the right of each person. But in each case study, there are the occasional differences that challenge the reader to reassess or expand his own perspective.
Case 1: Sudden death of an only child. Six-year-old Huang-Fu is struck by a car. Though his internal organs are unharmed, doctors declare him brain dead. He is maintained on a ventilator pending the parents’ decision: harvest and donate the organs? While all respondents agree that (Western) medical evaluations are trustworthy, some disagreements on when life ends emerge: when the heart stops (per the Buddhist), when breathing stops (per the indigenous Marshall Islander); or when you are really sure the person is dead, so the Sikh recommendation is to leave Huang-Fu on life support for up to a month!
Case 2: Cancer. Eman, a 35-year-old Muslim obstetrician presents with inflammatory breast cancer. After two rounds of chemo, there is no medical hope for her recovery. The ethical questions relate to her autonomy as she insists (against a diagnosis that she understands all too well) on continuing treatment in her desperation to persist as mother to her children. Though Eman knew her terminal diagnosis, she did not accept dying. The Hindu counsel would be for the terminal patient to let go of her attachment to this world – its pain and pleasures – and accept death. But the Jewish rabbi illustrates the importance and effectiveness of hearing the patient’s existential concern in his anecdote of another dying woman who accepted her coming death in the face of denial by all of her caregivers. She put her question: “Rabbi, when you die, what do you do with your shoes?” His response – “Give them to the poor” – unlocked access to the life of that woman – a door that remained shut to the death-deniers. (We note the appropriateness of different answers to similar questions: in Case #5, instead of sharing Luz’s left-behind clothing with the needy, the appropriate response was for the family to wash them in the river, then burn them up!) The most positive suggestion for Eman came from the Jewish rabbi and the Universalist Unitarian: leave an “ethical will” (in writing or recorded, sound or video) that included “one’s memories, values, blessings, life lessons, hopes, and dreams” for those left behind.
Case 3: Alzheimer’s. Martha, “the first Ph.D. her adoring parents had ever known” (175) is now widowed, retired as a highly regarded chemistry professor, mother of three children, and at 82 a victim of Alzheimer’s. She has progressed to the point where she is unaware of herself, life-threatened by uncoordinated swallowing, and hospitalized with pneumonia. Eleanor, the only child who lives in the U.S., is at her bedside, but as a busy lawyer and a single parent of two teenagers, is stressed emotionally, physically and financially.
The critical questions raised include (a) Eleanor’s to the medical staff: “Can you give her something to make her slip away?” (177); (b) quality of life; and (c) advance directives. Euthanasia is universally rejected; the Marshall Islanders are eager to host the dying person in their homes with the hope of providing “quality” to the ebbing life; but they reject advance directives as tantamount to signing a death certificate.
Case 4: AIDS. Mosupi was born to a mother with AIDS and was diagnosed with HIV at eight. Although on antiretroviral medication, he had neither an education nor a job. Staying appropriately medicated was logistically difficult and he finally went off of the drugs. He finally made the long trip to a clinic where weakening, he waited; and waited. He was finally placed on a stretcher in the clinic hallway. Finally noticing that he had died (!), a nurse got a doctor to declare him dead and went to inform the family members who had brought him. The handling of Mosupi’s dying is the focus: the lack of dignity and privacy, the harsh breaking of the news to the family, little chance to care for the body, lack of support for the survivors, in short a “care plan” that was atrocious – no plan, no care. We are surprised to read that the Catholic advocated condoms in the battle against AIDS/HIV and that in the Sikh community, fellow Sikhs pay all the death-connected expenses; they are repaid if the bereaved family can afford it.
Case 5: Heart disease. Luz, beloved wife of Gustavo and mother of eight, developed symptoms of high blood pressure. In her commitment to the family – including keeping her husband’s auto repair shop clean! – she grew lax in self-monitoring and medicating, was hospitalized, and soon died of congestive heart failure. A month later Gustavo took to his bed, depressed. The main issues raised were the family’s failure to see health care as a group responsibility and a parallel failure to plan for the future social and economic life of the family.
Writing this book was a major achievement. Having forty-four medical, ethical, and religious experts writing the same text, and generally agreeing, was a triumph. It is a book that impacts personally. I felt pressed to ponder my own culture’s ritual responses to death after learning of the astonishing variety (and length) of care (not simply grieving) provided the bereaved. I felt more committed to remembering that “pro-life” is not just a value that evaporates at the delivery of a live child but is a commitment that includes health care, political justice, education, and employment issues up to, through, and continuing past death. I was struck by our lack of enthusiasm for making the astonishing achievements of medicine available to a whole world that we treat more enthusiastically as cheap labor, cash customers, and (potential) political allies than as neighbors and fellow humans. And I felt embarrassed by our (specifically Christian) failure to articulate a positive theology of dying that could transform our witness to the world in constructive ways.
But Safe Passage leaves questions pending; for example: Is the “position” of each spiritual tradition represented accurately and fully in each of the five case studies? Surely there are more nuanced responses to be encountered from other speakers of the same faith tradition. And there is no mention of several “religions” that might have provided quite different perspectives: the popular practices in China and Russia (and nations in its orbit) which would constitute about one-fourth of the world’s population; Eastern Orthodoxy; Native American spirituality; the “None’s” whose numbers are becoming significant in U.S. surveys of religious affiliation.
However, what a wonderful start for a discussion that would take palliative care beyond political borders in holistically compassionate terms. I believe that this book can be useful to those of us with a vocation to educate. It has been said that our teaching is to be offered in the shadow of dying, in the shadow of the Cross. Safe Passage pictures a few of the beachheads where the dying and their caregivers experience those critical moments of preparing to die, dying, and trying to live after a death. The forces of medicine, of culture, of the collateral damage inflicted on the dying by the political, social, educational, and economic institutions of their particular places are all hinted at clearly enough in this volume to make it a valuable resource both in its treasure of hard data and in its power to move the reader existentially.
I would use it to keep students – the invincibles – aware of the fact of death. The two student deaths that occurred during my tenure were “bad deaths,” poorly handled by communities unaccustomed to “real-world” death because we had followed the recommendation voiced by Carlin Romano (Chronicle of Higher Education ): “The wise men and women of academe are right to offer death no welcome.” Safe Passages shows us that medicine has moved on, from save-the-body-at-all-costs to palliative and even hospice care, where that often-idealized “whole person” can be treated even in her fully spiritual reality. Safe Passage not only informs us about dying better, it also challenges us to think about it, talk about it, and begin to act so that each of us might finally be enabled to book our own “safe passage.”