- Email: [email protected]
Spirituality and the care of people with life-threatening illnesses
Techniques in Regional Anesthesia and Pain Management (2005) 9, 109-113
Spirituality and the care of people with life-threatening illnesses Myles N. Sheehan, SJ, MD From the Department of Medicine, Loyola University Chicago, Stritch School of Medicine, Maywood, Illinois. KEYWORDS: Spirituality; Palliative care; Pain management; End of life
Pain management requires attention to a variety of issues that can influence a person’s perception and experience. For individuals facing a life-limiting illness, spirituality may be a major element in the way these people experience their illness. Spirituality may be expressed in a variety of ways, but it represents a basic human experience where individuals seek understanding, meaning, and strength. A serious illness always carries with it profound questions of meaning. Spiritual experience can be a way to find peace or it can be painful, confusing, and difficult. Physicians who treat pain should be aware of spirituality as part of their assessment of people who seek their care, especially those who have a life-threatening illness. This does not require the development of a new skill set for physicians but an extension of basic history and listening skills. What may be most challenging for doctors is not the spiritual experience of those for whom they care, but recognizing their own spiritual journey both as individuals and as professionals who care for those facing death. © 2005 Elsevier Inc. All rights reserved.
Personal spirituality is an important part of the lives of many people. In facing a life-threatening illness, spiritual experience can be a source of strength and courage as well as unease and distress. Expert care of those who are seriously ill requires careful attention to physical and psychological pain. Spiritual pain also needs attention. Especially for physicians whose focus is on pain management, some knowledge of the spiritual experience of patients is critical. The purpose of this article is to provide for physicians and other health care providers, especially those who work in pain management, a basis for understanding spirituality in the context of a life-threatening illness. The focus is on defining and contextualizing spiritual issues at the end of life within the doctor–patient relationship. This discussion includes considerations of appropriate and potentially inappropriate uses of spirituality in the doctor–patient relationship and some suggestions about methods to facilitate communication. There will be a brief reflection on the spiritual experience of physicians in accompanying patients who are facing the end of life.
Address reprint requests and correspondence: Myles N. Sheehan, SJ, MD, Loyola University Medical Center, Building 120 —Medical School, Room 310, 2160 S. First Avenue, Maywood, IL 60153. E-mail address: [email protected]. 1084-208X/$ -see front matter © 2005 Elsevier Inc. All rights reserved. doi:10.1053/j.trap.2005.06.002
The meaning of spirituality in health care To the question, “What do you think about spirituality in health care?” a very appropriate response is “It depends.” Much of the current discussion on spirituality in health care is undifferentiated. Some individuals are talking about miracle cures. Stories in the media might focus on combining a program of prayer and meditation with some other treatment. Other reports can look at individual spiritual practices of people facing illness. John Shea lists at least five different meanings of spirituality in health care.1 The focus may be on the spirituality of the person who is the patient. A second meaning of spirituality in health care could consider the spirituality of the caregiver. A third sense of spirituality in health care, and one that gets a lot of media attention, is spirituality as a mode of healing. Sometimes stories combine these second and third meanings by looking at the results of doctors who pray with patients. A fourth way to think about spirituality in health care is to refer to the spiritual services offered by a program or institution. Fifth, spirituality and health care may be looking to the tradition of an institution and address how the spirituality of a religiously affiliated hospital might affect care. For the purposes of this article, the discussion of spirituality refers to the spiritual experience of people who are sick and the people who care for them.
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Defining spirituality Aside from the potential different meanings of spirituality in health care, spirituality can have a number of personal interpretations. People may speak of meaning, transcendence, and personhood. Spirituality can overlap with religious belief but is not equivalent. Many people express a conviction that they are spiritual but not religious, presumably meaning that they have a sense of meaning and the transcendent that is not grounded in a formal set of beliefs or religious practices. There are, however, many individuals who are both spiritual and religious and who discover meaning, strength, and support in particular symbols, beliefs, forms of worship, and ritual that they share with their religious community: “The events of a person’s life shape a person’s spirituality. Thus, individuals express their spirituality not only in the context of differing faiths and religious practices, but also related to gender, culture, and ethnicity. Spirituality also changes during the course of the person’s life. Questions of meaning and causality are different for a healthy young man or woman who is physically strong when compared with a person who is older and beginning to experience decline. The issues are not only related to vigor and health but also the accumulated experience of the years. But no matter what a person’s previous experience or age, the question “Why me?” often comes as a person’s spiritual journey encounters a serious illness that threatens the future, changes relationships, causes physical discomfort, and limits independence.”
Spirituality and the care of patients: disease versus illness What do meaning, transcendence, and spirituality have to do with being a physician and taking care of patients? It depends on how one views caring for patients: is it a doctor’s job to treat or cure a disease or to look more broadly at a patient’s illness?2 With the disease model, practitioners take a person’s symptoms, signs, laboratory tests, and other data and use them as a guide for diagnosis and treatment. The disease model allows a caregiver to isolate a variety of facts and come up with a treatment plan. It does not consider the lived experience of the person who is sick. The illness model looks to the experience of the person with the disease and recognizes that the best care needs to consider not only the clinical facts and findings, but also the life of the person who is sick. A disease that is life-threatening, like a metastatic malignancy, can be precisely characterized in its pathobiology, pathophysiology, staging, and prognosis. But understanding the illness of the person who has that malignancy means recognizing the changed relationships, diminished ability to work, concerns about spouse and children, questions of self-image and attractiveness, the tedious tasks of negotiating doctor visits, hospitalizations, treatments, and the anxiety about the tremendous financial pressures caused by the inability to work. A doctor who confines his or her attention only to the facts of disease may not be able to assist a patient who has to deal with all the details of the
changed landscape of illness created when disease distorts a life. Knowing the molecular details of a particular malignancy is an extraordinary thing. But it may not be enough for a physician who is trying to care for a patient who is sick and tired of dealing with the phlebotomist at the laboratory who is brusque and inept at drawing blood, aggravated from the tension and annoyance of waiting for a call back from the doctor or the nurse when there is a fever or some other worrisome symptom, haunted from the nightly tossing and turning wondering about what will happen to his kids, and demoralized by the agonizing task of figuring out how to get through another day when there is no work to fill the time. The journey through illness is one where many find themselves questioning the meaning of life, the nature and existence of God or some other higher power, and find themselves struggling to reframe their lives when so much of what was earlier taken for granted has changed. Does this have anything to do with being a doctor and caring for people who are facing these illnesses? If one views medicine as only a technical process that is not concerned with people, then all this talk about spirituality and journeys and meaning is, to be blunt, a pile of hooey. But if one views medicine as a way to care for people with a recognition that each person is more than a particular diagnosis, then spirituality can be an important part of the way in which caregivers face the suffering of their patients: “There are no transcendent pharmaceutical agents. But there are always transcendent questions—about meaning, value, and relationship. Spirituality in practice begins when the physician becomes aware that these questions arise in and through illness and injury, and that they can be addressed in and through the practice of medicine.”3 Taking care of a person who is facing death inevitably involves transcendent questions. It is not that every blood draw or every encounter is fraught with questions about meaning and relationships, but these questions are present in the relationship between the patient and the physician. They may arise in the context of frank discussions about prognosis or they may be in the background of treating pain, other physical symptoms, or manifestations of anxiety, depression, and discouragement. A person who feels lost, abandoned by God, and unable to find meaning may, not surprisingly, be having difficulties with pain and symptom control. A depression may be made more painful by doubt about one’s path in life and rumination over a decision or action in the past that has been deeply regretted. Recognizing that medicine has a spiritual component and that the goal of medicine is to limit suffering, then the care of people with life-threatening illness may involve engaging a person’s spirituality as a way to address problems or difficulties. Personal spirituality can be a source of strength and integration as a person faces death or tries to deal with the multiple difficulties and challenges a serious illness entails. It can also be a source of suffering as people find that their personal journey has been so altered by illness that previous landmarks make no sense and their future is deeply uncertain. Inquiry by physicians and other caregivers about the spiritual experience of patients provides not only an opportunity for greater understanding of the experience of those for whom they care but also the potential for relieving
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spiritual distress, either by simple discussion, or, as appropriate, referral to others with the training and expertise to discuss and explore some of the issues. There is often reluctance on the part of caregivers to consider spiritual issues or discuss them with patients. Caregivers are strapped for time, they are uncertain how to ask questions or how to respond to what patients tell them about their spiritual experience, or they fear that there is something inappropriate about discussing issues like spirituality in a clinical context. Issues of time are real for physicians. Arguably, however, time may well be wasted and treatments misdirected in avoiding the topic of spirituality. Asking a few questions about a person’s spiritual experience does not mean running an in-depth counseling session. Just as an internist may ask a few questions about chest pain and recognize a need for a cardiology consultation, so an anesthesiologist in a pain clinic may realize that part of the pain his or her patient is experiencing is spiritual and want to have resources available for referral to help that patient.
Asking patients about spiritual experience, requests for prayer, and referral How might one ask a patient with a life-threatening illness about his or her spiritual experience? A lot depends on the context of the clinical encounter. An emergency room visit will be very different than a short admission for chemotherapy, which, in turn will be different than an ongoing primary care relationship. A pain specialist who is evaluating a person with a life-threatening illness obviously has a focus on the origin of the pain, the anatomic basis of the discomfort, and possible clinical approaches. The usual careful questioning and directed examination done in this setting provides opening for some approaches to a person’s spiritual experience. After taking a pain history, the physician might ask: “How are you doing with dealing with your illness?” An open-ended question like this allows the patient to respond in a variety of ways that can reveal a lot about the psychological and spiritual experience of the illness. A follow-up question could be: “Do you have a spiritual practice or belief that is important to you in this illness?” There is no perfect question and every question can raise hypothetical objections. The lesson for the physician is to learn how to ask a few questions that give a broad opportunity for the patient to respond, to not impose one’s belief system, and get a sense of the role that spiritual issues may be playing in the patient’s symptoms and potentially contributing either to well-being or spiritual suffering.4 Physicians may avoid questions about a patient’s spiritual experience because they are afraid of how the patient will respond. What do you do with a person who begins to speak exuberantly about faith or, conversely, another who describes with tears feelings of being abandoned by God? In the first case, the physician should respond in ways similar to a patient who goes on at length and with enthusiasm about any subject: “I can see how important this is to you.” In the second case, the physician should respond empathically as he or should would
111 to any description of painful symptoms: “I can tell this is very hard for you.” After a suitable pause and further listening, the follow-up questions for spiritual pain are the same as for any other symptom: “How long have you felt this way?” “What makes you feel better?” “What makes you feel worse?” After pursuing questions like these and listening carefully to the patient’s answers, the physician may wish to explore questions related to depression and then options for treatment, further discussion, or consultation and referral. There are potential problems in discussions about spirituality between patients and physicians. Physicians should not impose their own religious beliefs on patients. Likewise, they should not force a skeptical, agnostic, or atheistic personal perspective on a patient. Some physicians worry about the implications of spiritual discussions with patients out of a concern that there is something inappropriate about talking about issues of meaning, transcendence, faith, personal religious, and/or spiritual practice of patients. Refusing to talk about such things, either by avoiding the issue or not responding to patient cues, however, can be deeply offensive to patients and give them the message that the physician is afraid or disapproving of the topic. Prayer with patients is a concern of many physicians. A blanket prohibition, or permission, to pray with patients is not realistic. Prayer would most appropriately come in the context of a request by a patient. Doctors who want to pray and who are comfortable with prayer need to be thoughtful and discerning in their response and treat the request with the same care they would any type of personal request from a patient. Thinking about requests for prayer as a bit like gifts from patients allows physicians to realize that these requests may, just like gifts, be sincere expressions of personal feeling or they may come laden with hidden agendas. Sometimes a request for prayer is not about praying but is more about staking a claim on a relationship with a doctor that may not advance the therapeutic relationship. There are other times when a request for prayer from a patient may be very appropriate. Again, physicians should listen to the patient carefully. Asking the patient to lead the prayer, rather than the doctor leading prayer, shows respect and allows the physician to gain some insight into what it is the patient is praying for, and, thus, what the patient is hoping will happen. It also lessens the chance that the physician will impose personal beliefs not held by the patient. A physician who does not believe in prayer, does not know how to pray, or feels trapped in praying in a way that is offensive to his or her own religious beliefs should politely refuse. The response could be as simple as “I appreciate your request but I want to care for you in the ways I know best as a physician.” Or, for a physician of another faith, “I am deeply honored by your request but my tradition is different than yours and I will pray for you in my own way.” Physicians, however, should realize that extended spiritual conversations or attempts to ease the spiritual distress of a patient may well be beyond their expertise. For those who routinely care for patients who face life-threatening illness, it is essential that the physician have sources for referral. In hospital settings, chaplains may be available
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who have undergone training in clinical pastoral education and are skilled resources capable of working with people in spiritual distress who may have a specific religious tradition or none at all. Simply referring patients with spiritual distress to clergy can be unwise for at least two reasons. First, not all-spiritual distress is religious and it may not be best addressed by a religious figure like a priest, minister, rabbi, or imam. Second, being ordained in a religious tradition does not mean that the individual will necessarily have any expertise in dealing with people who are facing life-threatening illness. Just as training in medical school and residency often does not adequately train physicians in palliative care or facing end-of-life issues, seminary training is also often inadequate. It does not mean, however, that one might not have excellent, skilled, and compassionate resources among local clergy.
Spirituality and the experience of physicians Behind all the attempts to define spirituality, consider what is appropriate and inappropriate in patient care, address the concerns of physicians about spirituality, there is a hidden issue: what is it like for physicians to care for people who face life-threatening illness and what does it mean for their spiritual journey? Realizing that issues of meaning, transcendence, and relationship can come up for a physician when she or he is confronted by the illness and death of patients suggests that spiritual questions may be present for the doctors that are not addressed. Are some of the fears about spirituality in medicine attempts by physicians to repress issues of meaning, loss, and personal mortality in facing the death and dying of patients? There are legitimate concerns about spirituality and inappropriate religious influences in the doctor–patient relationship. But the extent of the concern overlooks the reality that many people who are dying may appreciate it if the doctor asks about their spirit as well as about their body and mind. Physicians by their scientific training and stressful work experiences may be both ignorant and uniquely challenged by issues of spirituality, meaning, and transcendence. Many physicians have been highly educated in the sciences but not had much education in faith or reflected about their own spirituality. Physicians, with training that is remarkably rich in science and rigorous in its exploration of pathophysiology, may well lack the background or skills to even begin to explore their own personal journey. Their training has exposed them to extraordinary stress and frequently brought them into contact with many tragedies of illness and death. The inevitable issues about personal mortality and the questions about causality and meaning that are raised by these experiences are largely unexplored. Having not been exposed to religion or thought much about spiritual issues since childhood experiences, there can be a clash between rigid and childish concepts of faith, religion, and spirituality and a highly sophisticated approach to scientific questions. The result may be spiritual immaturity in otherwise mature clinicians. The consequence can be a scorn or avoidance of anything that smacks of the spiritual or religious in the lives of patients. It may also lead to a failure to attend to personal
experience. That means patients can suffer because a doctor does not notice or ignores what is going on with the patient. It may mean that the doctor is suffering as well. Cardinal Joseph Bernardin, the Archbishop of Chicago who wrote and shared movingly about his dying process from pancreatic cancer, spoke to physicians about their responsibility to pay attention to their own spiritual needs, and recognize the consequences of ignoring that responsibility: “We can only give from what we have. We must take care to nurture our own personal moral center. This is the sustenance of caring.”5
A caveat on physicians and the use of spirituality Although the theme of this article has been on recognizing a role for a recognition of spiritual issues in the care by physicians of people with a life-threatening illness, as well as some suggestions about practical concerns that may arise, it is important that physicians remain attentive to physical pain, other symptoms, and signs of depression. It is not appropriate for physicians to focus on spiritual issues in a patient without attending to a careful medical history, thorough physical examination, and precise review of medications and previous treatments. It might be that pain, dyspnea, and depression all have spiritual meanings for a patient. But it may well be that a person’s spiritual distress will clear substantially when a skilled physician treats the problems with therapeutic knowledge, technical excellence, and a compassionate manner. In other words, attention to spirituality is part of what a skilled physician brings to the care of a patient. It is not an excuse for the incompetent to avoid the need for knowledge and expertise.
Summary So what is a busy specialist in pain medicine to do when considering the issue of spirituality in caring for patients who are facing life-threatening illness? The purpose of this article has been to provide four major points. First, doctors need to be expert in assessment and treatment. That means attending with all their skill to a variety of issues. Spirituality is one of these issues. Second, for all the talk about spirituality in medicine, it can be treated as a basic human experience that may or may not involve religious belief but does recognize that serious illness carries with it questions of meaning that can be a source of pain as well as patterns of finding meaning that can be a source of strength and comfort. In other words, physicians should not worry that thinking and talking about spirituality is something weird, bizarre, or quackish. It might be if the doctor is weird, bizarre, or a quack! But so might be the use of opioids if the doctor is problematic. Third, addressing issues of spirituality does not mean developing a new expertise. It does mean thinking about some reasonable starter questions, listening to the answers
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carefully, and considering the need for further discussion as well as sources for referral. Fourth, in thinking about the spiritual issues of patients, doctors might want to think about the issues that affect them in their roles as physicians in continually caring for people in pain, many who are facing death in the near future. If the doctor feels that there are no issues and that he or she is unaffected by the patients under his/her care, then it may well be that there is an urgent need for the doctor to seek some personal help, since likely a lot of patients are not being treated well.
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References 1. Shea J: Spirituality and Health Care. Chicago, IL, Park Ridge Center, 2000 2. Kleinman A: The Illness Narratives. New York, NY, Basic Books, 1988 3. Sulmasy DP: Is medicine a spiritual practice? Acad Med 74:10021005, 1999 4. Lo B, Quill T, Tulsky J: Discussing palliative care with patients. Ann Intern Med 130:744-749, 1999 5. Bernardin J: Renewing the covenant with patients and society. Address to the American Medical Association House of Delegates. Chicago, IL, 1995
Spirituality and the care of people with life-threatening illnesses Myles N. Sheehan, SJ, MD From the Department of Medicine, Loyola University Chicago, Stritch School of Medicine, Maywood, Illinois. KEYWORDS: Spirituality; Palliative care; Pain management; End of life
Pain management requires attention to a variety of issues that can influence a person’s perception and experience. For individuals facing a life-limiting illness, spirituality may be a major element in the way these people experience their illness. Spirituality may be expressed in a variety of ways, but it represents a basic human experience where individuals seek understanding, meaning, and strength. A serious illness always carries with it profound questions of meaning. Spiritual experience can be a way to find peace or it can be painful, confusing, and difficult. Physicians who treat pain should be aware of spirituality as part of their assessment of people who seek their care, especially those who have a life-threatening illness. This does not require the development of a new skill set for physicians but an extension of basic history and listening skills. What may be most challenging for doctors is not the spiritual experience of those for whom they care, but recognizing their own spiritual journey both as individuals and as professionals who care for those facing death. © 2005 Elsevier Inc. All rights reserved.
Personal spirituality is an important part of the lives of many people. In facing a life-threatening illness, spiritual experience can be a source of strength and courage as well as unease and distress. Expert care of those who are seriously ill requires careful attention to physical and psychological pain. Spiritual pain also needs attention. Especially for physicians whose focus is on pain management, some knowledge of the spiritual experience of patients is critical. The purpose of this article is to provide for physicians and other health care providers, especially those who work in pain management, a basis for understanding spirituality in the context of a life-threatening illness. The focus is on defining and contextualizing spiritual issues at the end of life within the doctor–patient relationship. This discussion includes considerations of appropriate and potentially inappropriate uses of spirituality in the doctor–patient relationship and some suggestions about methods to facilitate communication. There will be a brief reflection on the spiritual experience of physicians in accompanying patients who are facing the end of life.
Address reprint requests and correspondence: Myles N. Sheehan, SJ, MD, Loyola University Medical Center, Building 120 —Medical School, Room 310, 2160 S. First Avenue, Maywood, IL 60153. E-mail address: [email protected]. 1084-208X/$ -see front matter © 2005 Elsevier Inc. All rights reserved. doi:10.1053/j.trap.2005.06.002
The meaning of spirituality in health care To the question, “What do you think about spirituality in health care?” a very appropriate response is “It depends.” Much of the current discussion on spirituality in health care is undifferentiated. Some individuals are talking about miracle cures. Stories in the media might focus on combining a program of prayer and meditation with some other treatment. Other reports can look at individual spiritual practices of people facing illness. John Shea lists at least five different meanings of spirituality in health care.1 The focus may be on the spirituality of the person who is the patient. A second meaning of spirituality in health care could consider the spirituality of the caregiver. A third sense of spirituality in health care, and one that gets a lot of media attention, is spirituality as a mode of healing. Sometimes stories combine these second and third meanings by looking at the results of doctors who pray with patients. A fourth way to think about spirituality in health care is to refer to the spiritual services offered by a program or institution. Fifth, spirituality and health care may be looking to the tradition of an institution and address how the spirituality of a religiously affiliated hospital might affect care. For the purposes of this article, the discussion of spirituality refers to the spiritual experience of people who are sick and the people who care for them.
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Techniques in Regional Anesthesia and Pain Management, Vol 9, No 3, July 2005
Defining spirituality Aside from the potential different meanings of spirituality in health care, spirituality can have a number of personal interpretations. People may speak of meaning, transcendence, and personhood. Spirituality can overlap with religious belief but is not equivalent. Many people express a conviction that they are spiritual but not religious, presumably meaning that they have a sense of meaning and the transcendent that is not grounded in a formal set of beliefs or religious practices. There are, however, many individuals who are both spiritual and religious and who discover meaning, strength, and support in particular symbols, beliefs, forms of worship, and ritual that they share with their religious community: “The events of a person’s life shape a person’s spirituality. Thus, individuals express their spirituality not only in the context of differing faiths and religious practices, but also related to gender, culture, and ethnicity. Spirituality also changes during the course of the person’s life. Questions of meaning and causality are different for a healthy young man or woman who is physically strong when compared with a person who is older and beginning to experience decline. The issues are not only related to vigor and health but also the accumulated experience of the years. But no matter what a person’s previous experience or age, the question “Why me?” often comes as a person’s spiritual journey encounters a serious illness that threatens the future, changes relationships, causes physical discomfort, and limits independence.”
Spirituality and the care of patients: disease versus illness What do meaning, transcendence, and spirituality have to do with being a physician and taking care of patients? It depends on how one views caring for patients: is it a doctor’s job to treat or cure a disease or to look more broadly at a patient’s illness?2 With the disease model, practitioners take a person’s symptoms, signs, laboratory tests, and other data and use them as a guide for diagnosis and treatment. The disease model allows a caregiver to isolate a variety of facts and come up with a treatment plan. It does not consider the lived experience of the person who is sick. The illness model looks to the experience of the person with the disease and recognizes that the best care needs to consider not only the clinical facts and findings, but also the life of the person who is sick. A disease that is life-threatening, like a metastatic malignancy, can be precisely characterized in its pathobiology, pathophysiology, staging, and prognosis. But understanding the illness of the person who has that malignancy means recognizing the changed relationships, diminished ability to work, concerns about spouse and children, questions of self-image and attractiveness, the tedious tasks of negotiating doctor visits, hospitalizations, treatments, and the anxiety about the tremendous financial pressures caused by the inability to work. A doctor who confines his or her attention only to the facts of disease may not be able to assist a patient who has to deal with all the details of the
changed landscape of illness created when disease distorts a life. Knowing the molecular details of a particular malignancy is an extraordinary thing. But it may not be enough for a physician who is trying to care for a patient who is sick and tired of dealing with the phlebotomist at the laboratory who is brusque and inept at drawing blood, aggravated from the tension and annoyance of waiting for a call back from the doctor or the nurse when there is a fever or some other worrisome symptom, haunted from the nightly tossing and turning wondering about what will happen to his kids, and demoralized by the agonizing task of figuring out how to get through another day when there is no work to fill the time. The journey through illness is one where many find themselves questioning the meaning of life, the nature and existence of God or some other higher power, and find themselves struggling to reframe their lives when so much of what was earlier taken for granted has changed. Does this have anything to do with being a doctor and caring for people who are facing these illnesses? If one views medicine as only a technical process that is not concerned with people, then all this talk about spirituality and journeys and meaning is, to be blunt, a pile of hooey. But if one views medicine as a way to care for people with a recognition that each person is more than a particular diagnosis, then spirituality can be an important part of the way in which caregivers face the suffering of their patients: “There are no transcendent pharmaceutical agents. But there are always transcendent questions—about meaning, value, and relationship. Spirituality in practice begins when the physician becomes aware that these questions arise in and through illness and injury, and that they can be addressed in and through the practice of medicine.”3 Taking care of a person who is facing death inevitably involves transcendent questions. It is not that every blood draw or every encounter is fraught with questions about meaning and relationships, but these questions are present in the relationship between the patient and the physician. They may arise in the context of frank discussions about prognosis or they may be in the background of treating pain, other physical symptoms, or manifestations of anxiety, depression, and discouragement. A person who feels lost, abandoned by God, and unable to find meaning may, not surprisingly, be having difficulties with pain and symptom control. A depression may be made more painful by doubt about one’s path in life and rumination over a decision or action in the past that has been deeply regretted. Recognizing that medicine has a spiritual component and that the goal of medicine is to limit suffering, then the care of people with life-threatening illness may involve engaging a person’s spirituality as a way to address problems or difficulties. Personal spirituality can be a source of strength and integration as a person faces death or tries to deal with the multiple difficulties and challenges a serious illness entails. It can also be a source of suffering as people find that their personal journey has been so altered by illness that previous landmarks make no sense and their future is deeply uncertain. Inquiry by physicians and other caregivers about the spiritual experience of patients provides not only an opportunity for greater understanding of the experience of those for whom they care but also the potential for relieving
Sheehan
Spirituality and Life-Threatening Illnesses
spiritual distress, either by simple discussion, or, as appropriate, referral to others with the training and expertise to discuss and explore some of the issues. There is often reluctance on the part of caregivers to consider spiritual issues or discuss them with patients. Caregivers are strapped for time, they are uncertain how to ask questions or how to respond to what patients tell them about their spiritual experience, or they fear that there is something inappropriate about discussing issues like spirituality in a clinical context. Issues of time are real for physicians. Arguably, however, time may well be wasted and treatments misdirected in avoiding the topic of spirituality. Asking a few questions about a person’s spiritual experience does not mean running an in-depth counseling session. Just as an internist may ask a few questions about chest pain and recognize a need for a cardiology consultation, so an anesthesiologist in a pain clinic may realize that part of the pain his or her patient is experiencing is spiritual and want to have resources available for referral to help that patient.
Asking patients about spiritual experience, requests for prayer, and referral How might one ask a patient with a life-threatening illness about his or her spiritual experience? A lot depends on the context of the clinical encounter. An emergency room visit will be very different than a short admission for chemotherapy, which, in turn will be different than an ongoing primary care relationship. A pain specialist who is evaluating a person with a life-threatening illness obviously has a focus on the origin of the pain, the anatomic basis of the discomfort, and possible clinical approaches. The usual careful questioning and directed examination done in this setting provides opening for some approaches to a person’s spiritual experience. After taking a pain history, the physician might ask: “How are you doing with dealing with your illness?” An open-ended question like this allows the patient to respond in a variety of ways that can reveal a lot about the psychological and spiritual experience of the illness. A follow-up question could be: “Do you have a spiritual practice or belief that is important to you in this illness?” There is no perfect question and every question can raise hypothetical objections. The lesson for the physician is to learn how to ask a few questions that give a broad opportunity for the patient to respond, to not impose one’s belief system, and get a sense of the role that spiritual issues may be playing in the patient’s symptoms and potentially contributing either to well-being or spiritual suffering.4 Physicians may avoid questions about a patient’s spiritual experience because they are afraid of how the patient will respond. What do you do with a person who begins to speak exuberantly about faith or, conversely, another who describes with tears feelings of being abandoned by God? In the first case, the physician should respond in ways similar to a patient who goes on at length and with enthusiasm about any subject: “I can see how important this is to you.” In the second case, the physician should respond empathically as he or should would
111 to any description of painful symptoms: “I can tell this is very hard for you.” After a suitable pause and further listening, the follow-up questions for spiritual pain are the same as for any other symptom: “How long have you felt this way?” “What makes you feel better?” “What makes you feel worse?” After pursuing questions like these and listening carefully to the patient’s answers, the physician may wish to explore questions related to depression and then options for treatment, further discussion, or consultation and referral. There are potential problems in discussions about spirituality between patients and physicians. Physicians should not impose their own religious beliefs on patients. Likewise, they should not force a skeptical, agnostic, or atheistic personal perspective on a patient. Some physicians worry about the implications of spiritual discussions with patients out of a concern that there is something inappropriate about talking about issues of meaning, transcendence, faith, personal religious, and/or spiritual practice of patients. Refusing to talk about such things, either by avoiding the issue or not responding to patient cues, however, can be deeply offensive to patients and give them the message that the physician is afraid or disapproving of the topic. Prayer with patients is a concern of many physicians. A blanket prohibition, or permission, to pray with patients is not realistic. Prayer would most appropriately come in the context of a request by a patient. Doctors who want to pray and who are comfortable with prayer need to be thoughtful and discerning in their response and treat the request with the same care they would any type of personal request from a patient. Thinking about requests for prayer as a bit like gifts from patients allows physicians to realize that these requests may, just like gifts, be sincere expressions of personal feeling or they may come laden with hidden agendas. Sometimes a request for prayer is not about praying but is more about staking a claim on a relationship with a doctor that may not advance the therapeutic relationship. There are other times when a request for prayer from a patient may be very appropriate. Again, physicians should listen to the patient carefully. Asking the patient to lead the prayer, rather than the doctor leading prayer, shows respect and allows the physician to gain some insight into what it is the patient is praying for, and, thus, what the patient is hoping will happen. It also lessens the chance that the physician will impose personal beliefs not held by the patient. A physician who does not believe in prayer, does not know how to pray, or feels trapped in praying in a way that is offensive to his or her own religious beliefs should politely refuse. The response could be as simple as “I appreciate your request but I want to care for you in the ways I know best as a physician.” Or, for a physician of another faith, “I am deeply honored by your request but my tradition is different than yours and I will pray for you in my own way.” Physicians, however, should realize that extended spiritual conversations or attempts to ease the spiritual distress of a patient may well be beyond their expertise. For those who routinely care for patients who face life-threatening illness, it is essential that the physician have sources for referral. In hospital settings, chaplains may be available
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who have undergone training in clinical pastoral education and are skilled resources capable of working with people in spiritual distress who may have a specific religious tradition or none at all. Simply referring patients with spiritual distress to clergy can be unwise for at least two reasons. First, not all-spiritual distress is religious and it may not be best addressed by a religious figure like a priest, minister, rabbi, or imam. Second, being ordained in a religious tradition does not mean that the individual will necessarily have any expertise in dealing with people who are facing life-threatening illness. Just as training in medical school and residency often does not adequately train physicians in palliative care or facing end-of-life issues, seminary training is also often inadequate. It does not mean, however, that one might not have excellent, skilled, and compassionate resources among local clergy.
Spirituality and the experience of physicians Behind all the attempts to define spirituality, consider what is appropriate and inappropriate in patient care, address the concerns of physicians about spirituality, there is a hidden issue: what is it like for physicians to care for people who face life-threatening illness and what does it mean for their spiritual journey? Realizing that issues of meaning, transcendence, and relationship can come up for a physician when she or he is confronted by the illness and death of patients suggests that spiritual questions may be present for the doctors that are not addressed. Are some of the fears about spirituality in medicine attempts by physicians to repress issues of meaning, loss, and personal mortality in facing the death and dying of patients? There are legitimate concerns about spirituality and inappropriate religious influences in the doctor–patient relationship. But the extent of the concern overlooks the reality that many people who are dying may appreciate it if the doctor asks about their spirit as well as about their body and mind. Physicians by their scientific training and stressful work experiences may be both ignorant and uniquely challenged by issues of spirituality, meaning, and transcendence. Many physicians have been highly educated in the sciences but not had much education in faith or reflected about their own spirituality. Physicians, with training that is remarkably rich in science and rigorous in its exploration of pathophysiology, may well lack the background or skills to even begin to explore their own personal journey. Their training has exposed them to extraordinary stress and frequently brought them into contact with many tragedies of illness and death. The inevitable issues about personal mortality and the questions about causality and meaning that are raised by these experiences are largely unexplored. Having not been exposed to religion or thought much about spiritual issues since childhood experiences, there can be a clash between rigid and childish concepts of faith, religion, and spirituality and a highly sophisticated approach to scientific questions. The result may be spiritual immaturity in otherwise mature clinicians. The consequence can be a scorn or avoidance of anything that smacks of the spiritual or religious in the lives of patients. It may also lead to a failure to attend to personal
experience. That means patients can suffer because a doctor does not notice or ignores what is going on with the patient. It may mean that the doctor is suffering as well. Cardinal Joseph Bernardin, the Archbishop of Chicago who wrote and shared movingly about his dying process from pancreatic cancer, spoke to physicians about their responsibility to pay attention to their own spiritual needs, and recognize the consequences of ignoring that responsibility: “We can only give from what we have. We must take care to nurture our own personal moral center. This is the sustenance of caring.”5
A caveat on physicians and the use of spirituality Although the theme of this article has been on recognizing a role for a recognition of spiritual issues in the care by physicians of people with a life-threatening illness, as well as some suggestions about practical concerns that may arise, it is important that physicians remain attentive to physical pain, other symptoms, and signs of depression. It is not appropriate for physicians to focus on spiritual issues in a patient without attending to a careful medical history, thorough physical examination, and precise review of medications and previous treatments. It might be that pain, dyspnea, and depression all have spiritual meanings for a patient. But it may well be that a person’s spiritual distress will clear substantially when a skilled physician treats the problems with therapeutic knowledge, technical excellence, and a compassionate manner. In other words, attention to spirituality is part of what a skilled physician brings to the care of a patient. It is not an excuse for the incompetent to avoid the need for knowledge and expertise.
Summary So what is a busy specialist in pain medicine to do when considering the issue of spirituality in caring for patients who are facing life-threatening illness? The purpose of this article has been to provide four major points. First, doctors need to be expert in assessment and treatment. That means attending with all their skill to a variety of issues. Spirituality is one of these issues. Second, for all the talk about spirituality in medicine, it can be treated as a basic human experience that may or may not involve religious belief but does recognize that serious illness carries with it questions of meaning that can be a source of pain as well as patterns of finding meaning that can be a source of strength and comfort. In other words, physicians should not worry that thinking and talking about spirituality is something weird, bizarre, or quackish. It might be if the doctor is weird, bizarre, or a quack! But so might be the use of opioids if the doctor is problematic. Third, addressing issues of spirituality does not mean developing a new expertise. It does mean thinking about some reasonable starter questions, listening to the answers
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carefully, and considering the need for further discussion as well as sources for referral. Fourth, in thinking about the spiritual issues of patients, doctors might want to think about the issues that affect them in their roles as physicians in continually caring for people in pain, many who are facing death in the near future. If the doctor feels that there are no issues and that he or she is unaffected by the patients under his/her care, then it may well be that there is an urgent need for the doctor to seek some personal help, since likely a lot of patients are not being treated well.
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References 1. Shea J: Spirituality and Health Care. Chicago, IL, Park Ridge Center, 2000 2. Kleinman A: The Illness Narratives. New York, NY, Basic Books, 1988 3. Sulmasy DP: Is medicine a spiritual practice? Acad Med 74:10021005, 1999 4. Lo B, Quill T, Tulsky J: Discussing palliative care with patients. Ann Intern Med 130:744-749, 1999 5. Bernardin J: Renewing the covenant with patients and society. Address to the American Medical Association House of Delegates. Chicago, IL, 1995