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Abstract
Spirituality refers to the search for meaning and understanding of life, with reference to nonphysical values or powers. The growing recognition of spirituality and its effects on medical outcomes leads to ethical questions including (A) proper assessment of and response to spirituality in medical situations, (B) what to do when someone’s spirituality contradicts standard biomedical judgment, and (C) the underlying assumptions of bioethics as typically presented in the West. These are questions of: how far assessing (or ignoring) patients’ spirituality would be ethical, how far accepting (or overriding) patients’ spiritually grounded decisions would be ethical, and whether the presuppositions of modern Western bioethics ultimately conflict with the presuppositions of spirituality.
Introduction
Spirituality is a term used to cover both formal religion and personal values and beliefs about the relation of consciousness to invisible dimensions “that impart vitality and meaning to life’s events” (Maugans 1996). Disaster, disease, and death challenge our sense of justice and reason; personal crises, such as divorce, unemployment, incapacitation, dying, or bereavement, lead people to ask “why me?” “how can I make sense of this?” “what is life/the universe trying to teach me?” and “what happens hereafter?” Scholars often distinguish existential elements (wonder, awe, intuited harmony, inspiration or ecstasy, commitment to a search for truth) and transcendent elements (karma and rebirth, judgment and afterlife, connection with a higher power) within spirituality. Concern with spirituality builds on Allport’s (1964) classical distinctions between extrinsic and intrinsic religion, observing that while some churchgoers apparently lack spiritual concerns, even agnostics with no religious affiliation may live by strong beliefs and commitments.
Spirituality has important implications for bioethical issues concerning war, capital punishment, and the environment, but this entry focuses on medical and psychological bioethics. Formal religions take positions on bioethical issues ranging from abortion and euthanasia to circumcision and blood transfusion. The present entry focuses on bioethical issues arising outside of formal religious belief systems but within the broader search for human meaning and interconnection known as spirituality. Concerns with spirituality raise bioethical issues on three levels, viz., (A) assessment, (B) biomedical judgment, and (C) challenging of bioethical assumptions.
History And Background
As personal worldviews have supplanted the role of community faith in secularizing societies, the term “spirituality” has largely replaced the term “religious.” In the 1970s, American public opinion polls exposed significant declines in the numbers of people willing to call themselves “religious,” despite an unmistakable upswing in “New Spirituality” and “New Age” movements.
When public opinion polls asked respondents about “spiritual” (rather than religious) interests or belief in “invisible spiritual forces” (rather than God), overwhelming affirmative responses yielded results far more congruent with the sensed tenor of the times. In the 1980s, the United Nations World Health Organization began to use the term spirituality along with religion in its discussions of health and quality of life, and by the 1990s, the WHO considered the term spirituality as an important dimension of health. While communist delegates urged adding the proviso “in some countries” or broadening spirituality to include “attitudes and philosophies,” subsequent discussions have centered more on how to put such concerns into practice.
Outside of Western medicine, care for sufferers’ spiritual needs typically has preceded and predominated over physiological care; in recent decades, even Western hospices and hospitals increasingly recognize the spiritual needs of patients and bereaved. Merely pharmaceutical response to the symptoms of an illness, injury, or bereavement, without addressing their underlying meanings, is like bombing cities in response to suicidal terrorists; ignoring the fundamental causes of disharmony, it exacerbates malaise and alienation rather than attaining long-term solutions.
Responding to patients’ spiritual needs can also improve medical care, by referring patients to chaplains or counselors, using spiritual support resources in the community, incorporating therapeutic touch and “healing” music or aromas, and teaching meditation or relaxation for chronic pain or insomnia. Although debates continue about the validity of therapeutic touch, healing prayer, and meditation, these spiritual responses to medical issues have become objects of formal research rather than of peremptory dismissal, and often complement medical procedures. Yet the areas of spirituality most subject to bioethical discussion are not the utility of prayer and meditation but how patient spirituality should be assessed and valued, especially when it influences medical decision-making.
Assessment
Reasons For Assessment
Hospital ethics conferences use criteria like best interests, benefits/burdens, performance, QALYs, and DALYs to ground medical decisions, but for many patients and families, the more central questions concern the meaning of suffering: whether they can find redemption, forgiveness, or higher purpose amid tragedy. These are questions of spirituality. Scholarly studies suggest that subjects’ spirituality not only reduces suicides and unethical behaviors but also contributes to psychological well-being and physical health, including recuperation from disability, illness, and loss (Pargament 2011; Koenig 2009).
Feeling a sense of purpose in rehabilitation or of meaning in cancer treatment can significantly improve patients’ compliance and speed their recovery. Conversely, belief that suffering is good or karmically deserved can impede healthy outcomes. If doctors have an ethical duty to diagnose the causes and factors affecting their patients’ health, are they similarly obligated to assess their patients’ psycho-spiritual concerns that affect health outcomes and to become competent to do so?
Doctors often prescribe futile medicines and procedures for disabling or terminal illness, more for the sake of raising patients’ and families’ hopes than for their demonstrable cost-effectiveness. If it were known that patients and families would feel greater hope through ritual, meditation, music, prayer, sacred narratives, or inspirational readings, is it ethical to withhold those forms of spiritual care, when their side effects were less harmful than a predictably futile round of chemotherapy? The uncertainties inherent in such diagnoses and prognoses should not ethically change the patients’ set of choices.
History Of Assessment
Some doctors still think that tools for psychospiritual assessment lack the level of precision required in medicine or that diagnostic data is too weak. If the issue were the precision of medical prediction, doctors themselves would face an unbearable burden of proof. If the issue is the accuracy not of prediction but of diagnosis, a wide range of spiritual diagnostic assessment tools are demonstrably useful in treating patients.
As early as 1982, Paloutzian and Ellison’s SWBS (Spiritual Well-Being Scale) (Paloutzian and Park 2013) assessed religious well-being relating to God (e.g., “God loves me and cares about me”) and existential well-being relating to purpose in life (e.g., “life is full of conflict and unhappiness”). The SWBS has since been criticized for being too monotheistic and for failing to distinguish variations among people with high spirituality. Moberg (2001) advanced the SWBS to a 94-item questionnaire, but this proved too tedious for clinical settings.
By the late 1990s, physicians like Maugans advocated taking spiritual histories of their patients (1996); Harvard University (Puchalski 2006), and the University of Hull’s Centre for Spirituality Studies (McSherry and Ross 2010) validated reliable protocols for doing so. In the 2000s, the FACIT organization developed the Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being (FACIT-Sp 2014) that measures sense of meaning and the role of faith in illness, with items like “I have trouble feeling peace of mind” and “my illness has strengthened my faith or spiritual beliefs” (http://www.facit.org/FACITOrg/Questionnaires).
Of the dozens of spiritual assessment tools now circulated and taught, the FACIT-Sp and SWBS have become most widely used. The American Association of Medical Colleges (AAMC) has developed medical school objectives (MSO) related to spirituality and culture. So the issue has evolved from how spirituality can be measured to whether it should be measured proactively.
Ethical Issues In Assessment
Can physicians and hospitals better respect and support their patients’ beliefs by ignoring them or by proactively probing them? Are they ethically required not only to respect but also to support their patients’ spirituality? Doctors maintain they are not ethically bound to pray for nor discuss karma with their patients – but are they ethically required to seek someone who will do so, if this would substantially affect their patients’ outcome? If patients ask for spiritual support, can doctors ethically deny it? Can doctors ethically prohibit praying or chanting in hospital wards? What should be done when the values of medical counseling seem to obscure or conflict with the patients’ spirituality?
Medicine tries to treat the physical aspects of pain, disease, and suffering while ignoring their important spiritual aspects. Many doctors feel ethically obliged to require and disclose the results of diagnostic tests even to patients who desire neither testing nor information. If spirituality is a major factor in health, are doctors ethically obliged to require spirituality tests, even to patients who do not desire such tests or information? (If doctors feel unprepared or uncomfortable discussing spirituality, this is a reason not to avoid such testing but to improve doctors’ preparedness.)
Religious hospitals that refuse to provide abortions should seem ethically required to inform patients of the effects of not aborting and their choices of other hospitals that will provide abortions. Then should materialist hospitals that refuse to provide spiritual assessment or counseling be ethically required to inform patients of the effects of ignoring spiritual assessment and their choices of other hospitals that will provide spiritual assessment or counseling?
Responses to these questions about ethical requirement of spiritual assessment range from “always” to “never.” To reduce the risk of intrusion and offense in directly asking all patients about their beliefs and commitments, many practitioners now suggest prescreening before spiritual assessment. In other words, before asking a patient specifically about beliefs or faith community, a prior question should be asked, “are spiritual or religious issues important to you?” or “are there any spiritual concerns you would like to have someone help you address?”
The preponderance favors assessment (often deferred to chaplains or psychologists) only when patients proactively express desire for spiritual support or counseling (McSherry and Ross 2010). Yet this may overlook many patients who harbor the same spiritual needs but hesitate to voice them in medical settings, not to mention the possibility that medical professionals themselves might benefit from spiritual care. If further evidence shows that patients and bereaved families receiving spiritual care are less devastated by grief and less likely to sue, economic reasons alone may promote the assessment and treatment of spiritual crises.
The question of universal spiritual assessment is somewhat analogous to that of universal cholesterol assessment and prescription of statins. Just as there is no precise cholesterol count indicative of statin treatment nor precise way of predicting the statins’ side effects, there is no precise level of anxiety indicative of spiritual counseling nor precise way of predicting the side effects of the counseling. In the case of cholesterol and statins, however, the debate has focused largely on the economics of screening versus the benefits of medication. In the case of spiritual pain, the focus extends to the rights and worldviews of the patients themselves – a more quintessentially ethical area.
Further spiritual dilemmas remain. Are physicians obliged to treat patients whose worldviews utterly contradict their own – like suicide attempters or terrorists who promise to repeat their attempts if their present physicians restore them? Physicians already attempt to dissuade patients from delusions about prognoses, on the grounds of their superior medical knowledge. Then should physicians also attempt to dissuade patients from what the physicians think are delusions about God’s will or the futility of life – and on what grounds?
Ethical issues can arise when doctors or patients blur medical and spiritual roles which society wants separated. The ethics of universal spiritual assessment focus on benefiting and not harming the patient, as medicine is increasingly “patient centered.” Yet the very notion of “patientcentered” medicine itself raises a second level of ethical questions.
Biomedical Judgment: Ethics Of Decision-Making
When physicians are faced with decisions about the desirability of CPR or aggressive life support, they rely on their beliefs about the meaning and value of human life or their understanding of their commitments as physicians. These are spiritual beliefs. Lacking medical knowledge, patients rely even more heavily on their beliefs about the meaning and value of human life or their understanding of their commitments to family or to God. So personal spirituality may have important implications for stances on bioethical issues. Even nonreligious physicians should not underestimate the effects of their patients’ belief systems. Yet the absence of formal denominational labels raises problems, not only in assessment but also in response to patients whose worldviews differ.
Spiritual commitments can underlie such statements as:
I want to bear my babies at home.
I will not pollute my body with inorganic chemicals or animal products.
I do not want to give my beating heart or liver to someone else.
If I can no longer eat nor communicate, I do not want my body prolonged.
My suffering here and now will burn off my previous bad karma.
I must spend my last moments lying on the ground (or floor), not in a bed.
I want to be frozen until medicine can revive me and cure this disease.
I want no one to try to revive me, lest my soul be torn between two realms.
I want everything possible done for me because the universe will save me with a miracle.
Obviously, such positions may be more or less rational, more or less negotiable. They may be based on traditionally sectarian viewpoints or on personal spirituality. To measure their depth and strength requires not only standard spiritual assessment tools but a close understanding of the patients’ lifestyle hitherto.
Whether a belief is spiritual or not, if it is almost certainly mistaken (such as “the universe will save me with a miracle” or “unfreeze and revive me after my disease becomes curable”), then physicians have the difficult task of helping people overcome such delusions while respecting them as persons (cf. Cochrane 2007). Conversely, when a patient will endure suffering or resist organ donation for spiritual reasons, it may help medical practitioners to understand the spiritual source of that resistance. In some cases, a sympathetic understanding may open the door for a deeper dialogue about what the patient thinks God or the universe wants and ultimately to a reframing or reinterpretation that allows other treatments without requiring a conversion of worldviews. The desires of Hindu patients to die on the floor, or of Tibetans not to be touched for some time after breathing stops, initially challenge hospital procedures, but cultural sensitivity can accommodate such practices if the medical system is adequately forewarned of the patient’s spiritual desires.
Thornier ethical questions concern how to deal with spirituality that conflicts with medical judgment. When a Jain or Quaker claims that their religion requires conscientious objection to military conscription, when a Jehovah’s Witness or Christian Scientist rejects blood transfusions, when a Catholic or Muslim refuses to abort a deformed fetus, their religious affiliation is prima facie evidence of their commitment. Their faith community may legally and socially support their violation of the majority ethical opinion, even calling into question the ethicality of transfusion or abortion itself.
However, when someone with no religious affiliation claims that her spiritual worldview requires physician-assisted suicide, the grounds for this claim are more difficult to demonstrate. How can a physician know that a patient really understands her situation and is deciding not from ignorance and fear but from spiritual commitment? Many would suggest that it is not a physician’s job to distinguish fear from spiritual commitment, much less to attempt to influence his patients’ spiritual commitment. But when a spiritual belief system is cited as a reason for choosing or rejecting courses of treatment in ways the physician thinks suboptimal if not dangerous, then is the physician obliged to follow the patient’s wishes or to introduce someone who will? Some countries (like America) tend to prioritize the personal rights of the patient over that of the trained medical worldview; others prioritize trained medical opinion over that of the layperson (as in Britain’s Bolam v Friern 1957).
Choice of life-prolonging treatment (among many other ethical choices like those above) is not like a choice of cream or sugar in tea or coffee; it involves our very understanding of life and the world. Since spirituality is a commitment to a particular personal understanding of life, patients’ spirituality may have important implications for their personal stances on bioethical issues. How far must law or society ethically respect the spiritual positions of others, when those positions affect life, death, or the use of common medical resources? Neither courts nor bioethicists have reached clear conclusions on such issues, but as modern people move away from organized religions toward increasingly personal spiritual belief systems, both courts and bioethicists will be increasingly forced to address these questions, particularly in situations where patients’ preferences disagree with their doctors’. Conversely, whereas hospital entrance forms could traditionally ask patients’ religious affiliation, future understanding of patients’ spiritual beliefs will require ethically sensitive measures to identify the reasons behind patients’ treatment decisions – and perhaps to provide counselors or chaplains who can discuss those decisions on spiritual as well as medical grounds.
Challenging Bioethical Assumptions
If spirituality were reducible to existential angst, then physicians might be allowed ethically to override the ignorant fears of their patients. On the other hand, if spirituality highlights cross-cultural relativity and transcendent values, then it ultimately challenges the assumptions, not merely of medicine but even of bioethics as it has evolved in the West. Western bioethics typically accepts the principles of autonomy, beneficence, and justice as self-evident. Many more spiritual perspectives challenge the cultural and economic biases underlying the proselytization and use of these very “principles.”
Autonomy
The “principle” of “autonomy” is as recent as it is biased. The notion arose from the eighteenth-century white property-owning male enlightenment thinkers who analogized the universe to a clock and life to deducing mathematical theories from principles. They never imagined rights of women, servants, children, or other races, much less of societies or animals.
Many spiritually minded cultures find the notion of autonomy incomprehensible. The very word autonomy is untranslatable and therefore unthinkable in many cultures and languages, so to impose it on them is little less than bioethical imperialism. In other societies that have learned to translate the term “autonomy,” it exemplifies unethical rather than ethical thinking. Traditional societies from China and Japan to Polynesia and sub-Saharan Africa hold that humanhood is quintessentially relational and inextricably social. For many educated Asians and Africans, an ethical decision is one that considers all the impacts and desires of all the people and groups that might have preferences about it. Someone who decides for themselves, about themselves, and by themselves is at best lacking in social maturity and consideration and at worst criminally self-centered. In such cultures, intuitive understandings of rightness based on human interactions and concern for future generations are felt to be far more ethical than principled calculations or signatures on incomprehensible consent forms.
Beneficence
The bioethical “principle” of “beneficence” tends to prioritize short-term benefit, based on limited knowledge about long-term side effects and societal and environmental impacts. Thus, statins may provide a short-term fix for high cholesterol, but in the long run, their side effects may override their benefits, where changes of patient diet and lifestyle would prove far preferable for the patient. Steroids or antibiotics that seem beneficial in the short run may in the long run create allergies or antibiotic-resistant pathogens that threaten society. Transplanting a resected liver into a waiting recipient may benefit the recipient in the short run but may risk reducing the quantity or quality of life of the donor in the long run – and possibly lead to social commodification of human body parts. To provide such drugs or organs in ways that may threaten the physical health or ethical thinking of society in the future is unthinkably unethical from some spiritual perspectives.
Many spiritual worldviews maintain that long-term sustainability is ethically preferable to quick fixes. Many traditional cultures consider ethical effects of actions on many generations of descendants, on society, and on environments centuries hence. Their spirituality would resist using recently discovered chemicals in human foods and medications before their safety and side effects had been proven on generations of unwitting human guinea pigs. It would reject meat eating for its deleterious impacts both on environment and on human health, not to mention on the sentient animals which are butchered. Traditional spirituality would be extremely cautious about genetic engineering with the potential to disrupt many delicate balances in nature, even under the guise of “beneficence.”
Justice
The bioethical “principle” of “justice” or “fairness” tends to prioritize supposed equality of choice over equality of outcome and material quantity over psycho-spiritual quality. Modern capitalists tend to equate well-being with economic prosperity, if not reducing happiness to material wealth or longevity. Similarly, medical notions of fairness all too often look at dollars spent or length of patient survival, without considering the psycho-spiritual quality of the life of the bedridden or even unconscious patient. Many spiritual perspectives would laud the patient who wishes a shorter conscious ambulatory life over a longer unconscious bedridden one. Yet bioethical notions of fairness all too often refer implicitly to economics – the money and resources to be spent on a given patient – rather than on trying to enable patients to reach sense of meaning and peace within their situations or greater satisfaction in their deaths.
Fox and Swazey (2008) have cogently critiqued the hegemonic thrust and cultural myopia of American bioethics and its failure to address issues of international injustices and inequities in health care – partly marginalized by bioethicists’ unanalyzed tendencies to consider them as economic rather than ethical problems. For example, under the rubric of “justice” or “fairness,” Western bioethicists glibly debate the ethics of providing costly life-extending liver transplantation to a minuscule minority of wealthy Westerners while ignoring millions of children suffering organ damage and physical handicaps as a result of malnutrition. Recent debates over the desirability of costly genetic enhancement of embryos beyond any natural norm take place against an unseen background of countless babies born with crippling genetic defects that will never be addressed by their societies’ medical resources. Bioethicists debate the use of embryonic stem cells to enable infertile or homosexual couples to replicate themselves, while tens of thousands of orphans in need of good homes cry out for adoption. A more spiritual view looks not only at fairness for individuals but at fairness for a larger and longer humankind. It suggests that, while not all unfairness can be addressed, as long as a vast portion of the world lacks elementary medical care and hygiene, debates on the ethics of costly advanced medical techniques are cruel and inconsiderate at best and at worst make a travesty of any pretense to “fairness” or “justice.”
Ethics, Not Calculus
Finally, the presupposition that ethics should be deduced from culture-blind or culture transcendent principles directly violates spiritual insights that ethics arise from human emotional interactions within concrete cultural situations. Since spirituality is not a single position or denomination, it cannot be said that all spiritualities oppose such principlism. But spirituality implies a plea to consider less what scalpels or chemicals may do to patients’ cells and more what interactions or power relations may do to people’s souls. Biomedical decisions should not be made from the falsifiable fiction of a just and rational world operating according to Cartesian principles; they must address social, cultural, and long-term implications of treating people as bodies or intelligent objects, rather than as hearts, souls, and subjects in search of meaning in this life and perhaps the next. From this perspective, spiritual crises challenge not only particular medical assessments and procedures but indeed the very presuppositions underlying the unconsciously hegemonic movement of Anglo-European bioethics into traditional Asian and African worldviews.
Conclusion
Times of crisis require insights into their existential implications. Incurable cancer and dementia sufferers – and their caregivers or bereaved families – demand more than X-rays and drugs; they want to understand not only the causes but also the potential meanings of their tragedies. Spirituality implies prioritizing people’s feelings, beliefs, and meanings over material measurements of cells, organs, or life expectancies. Taking spirituality seriously requires not only listening to patients but also treating their worldviews with respect. Many ethical issues linger concerning the ways and extents of respecting spirituality. Ultimately, concerns with overarching meaning and transcendence may challenge not only specific medical procedures and prejudices but the very grounds and scope of twentieth-century Western biomedical ethics itself.
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