A Clinical Guide to Supportive and Palliative Care for HIV/AIDS
Chapter 13. Spiritual Care
Illness is a major life event that can cause people to question themselves, their purpose, and their meaning in life. It disrupts their careers, their family life, and their ability to enjoy themselves; three aspects of life that Freud said were essential to a healthy mind. Illness can cause people to suffer deeply. Victor Frankl noted when writing about concentration camp victims that survival itself might depend on seeking and finding meaning:
Man is not destroyed by suffering; he is destroyed by suffering without meaning.1
Palliative care has long recognized that, in addition to physical and psychological symptoms, patients with advanced illness will suffer existential distress as well. Existential distress is probably the least understood source of suffering in patients with advanced disease, for it deals with questions regarding the meaning of life, the fear of death, and the realization that they will be separated from their loved ones.2 These issues take on greater importance in HIV/AIDS because of the stigma and judgment that still accompany people living with this disease.
In our own clinical experience, we have found that people cope with their suffering by finding meaning in it. Spirituality plays a critical role, because the relationship with a transcendent being or concept can give meaning and purpose to people's lives, to their joys and to their sufferings.
A number of surveys and studies demonstrate the importance of considering spirituality in the health care of patients and document the relationship between patients' religious and spiritual lives and their experiences of illness and disease.3, 4 These findings are particularly relevant in the delivery of palliative care.5, 6 From the very early years of the modern hospice movement, spiritual aspects of health, illness, and suffering have been emphasized as core aspects of care. Several studies support the relevance of spirituality in the care of seriously ill patients.
A 1997 Gallup survey showed that people overwhelmingly want their spiritual needs addressed when they are close to death. In its preface, George H. Gallup, Jr., wrote, "The overarching message that emerges from this study is that the American people want to reclaim and reassert the spiritual dimensions in dying."7 Other studies have found spirituality to be an important factor in coping with pain, in dying, and in bereavement.8, 9 Patients with advanced cancer who found comfort from their spiritual beliefs were, for example, more satisfied with their lives, were happier, and had diminished pain compared with those without spiritual beliefs.10 An American Pain Society survey found that prayer was the second most common method of pain management after oral pain medications, and the most common non-drug method of pain management.11
Quality of life instruments used in end of life care measures often include an existential domain which measures purpose, meaning in life, and capacity for self-transcendence. Three items were found to correlate with good quality of life for patients with advanced disease:
If the patient's personal existence is meaningful
If the patient finds fulfillment in achieving life goals
If life to this point has been meaningful12
In HIV, patients struggle with existential crises as do other patients with chronic illness. However, the social stigma of the illness may affect how patients view their illness, particularly for those patients who are religious. In a study of patients with HIV, those who were spiritually active had less fear of death and less guilt about their illness. Fear of death was more likely among the 26% of religious patients in this study who felt their illness was a punishment from God. Fear of death diminished among patients who had regular spiritual practices or who stated that God was central to their lives.13
What Is Spirituality?
In a study of spirituality among the terminally ill, Reed asserted, "Spirituality is defined in terms of personal views and behaviors that express a sense of relatedness to a transcendent dimension or to something greater than self."14 Another, more clinical, definition is:
Spirituality is recognized as a factor that contributes to health in many persons. The concept of spirituality is found in all cultures and societies. It is expressed in an individual's search for ultimate meaning through participation in religion and/or belief in God, family, naturalism, rationalism, humanism, and the arts. All of these factors can influence how patients and health care professionals perceive health and illness and how they interact with one another!15
How people find meaning and purpose in life and in the midst of suffering varies. Whatever form spirituality takes, its active practice can help patients cope with the uncertainty of their illness, instill hope, bring comfort and support from others, and bring resolution to existential concerns, particularly the fear of death. It is important that the palliative care team accepts and honors all approaches to existential concerns. This requires open-mindedness, cultural sensitivity, and a willingness to learn from the life experiences of others.
For many, these existential questions are mainly expressed in a formal religion by belief in a deity, the theology of the religion, the concept of an afterlife, and the rituals and practices of the religion used to express those beliefs. Many religions have a rich tradition and experience in giving meaning to the cause of suffering and in restructuring suffering into a positive experience. Addressing the role of religion in medicine in the first decade of the last century, William Osler wrote:
Nothing in life is more wonderful than faith, the one great moving force which we can neither weigh in the balance nor test in the crucible. Intangible as the ether, ineluctable as gravitation, the radium of the moral and mental spheres, mysterious, indefinable, known only by its effects, faith pours out an unfailing stream of energy while abating nor jot nor tittle of its potency.16
Osler concluded that not only did faith have important effects on health outcomes but that practitioners should seek to encourage and incorporate faith as part of clinical care.
By definition, palliative care focuses on aspects of treatment that are not intended to achieve cure. Much of medical training has to do with finding a cure or fixing a problem. In chronic illness and end-of-life care, this may no longer be possible. The oft-quoted phrase "there is nothing more I can do for you" comes out of that medical "fixer" model. In fact, there is a lot we can do for our patients, and it is also our obligation as physicians "to continue to care for patients even when disease-specific therapy is no longer available or desired."17 This is where spiritual care becomes so critical. It allows us to care for our patients even when cure is not possible.
The basis, then, of spiritual care is compassion -- being present to our patients in the midst of their suffering. By being present and caring for our patients, we connect to them as individuals. That interconnectedness at the level of our humanity helps to provide hope and comfort to our patients. By discussing issues of suffering, spiritual values, and conflict with our patients, we provide them the opportunity to find a sense of resolution and perhaps peacefulness; we help them heal. At its core, palliative care recognizes that healing can occur even when cure or recovery is impossible. Although illness may disrupt a person's life, it can also offer a person the opportunity to see life in a different way. Many people with serious and terminal illness talk of seeing a richness and fullness in life that they had never seen before. Some people find new priorities in their life and new appreciation for aspects of their life that they never noticed before.
In dying, for example, healing or restoration of wholeness may be manifested by a transcendent set of meaningful experiences while very ill and a peaceful death. In chronic illness, healing may be experienced as the acceptance of limitations.18 A person may look to medical care to alleviate his or her suffering, and, when the medical system fails to do so, begin to look toward spirituality for meaning, purpose, and understanding. It is the combination of both good clinical-technical care and good spiritual care that can provide the best chance for healing at any stage of illness.
It is important to include a spiritual assessment or history as part of the overall clinical assessment of a patient. Doing so enables the provider to assess spiritual needs and resources, mobilize appropriate spiritual care, and enhance overall caregiving. Spiritual assessment has been included in coursework on spirituality and medicine19 and is performed by many practicing clinicians in the U.S.
The acronym FICA -- for faith and belief, importance, community, and address in care -- can be helpful for structuring an interview regarding a patient's spiritual views. Table 13-1 (PDF) presents a format providers can use for a FICA interview.
Providers can obtain more information about spiritual assessment and FICA from the George Washington Institute for Spirituality and Health (GWish), 2300 K Street NW, Suite #303, Washington, D.C. 20037, (202) 994-0971; www.gwish.org.
A compassionate spiritual assessment helps to integrate spiritual concerns into therapeutic plans. Clinicians should strive to discuss these concerns in a respectful manner and as directed by the patient. Providers should always respect patients' privacy regarding matters of spirituality and religion and must be vigilant to avoid imposing their own beliefs. Providers can encourage religious and spiritual practices with their patients if these practices are already part of the patient's belief system. However, a nonreligious patient should not be told to engage in worship any more than a highly religious patient should be criticized for frequent church attendance.20, 21
Patients may ask health care providers to pray with them. It is appropriate to allow a moment of silence or a prayer. Not respecting such a request may leave the patient with a sense of abandonment. If the provider feels conflicted about praying with patients, he or she need only stand by quietly as the patient prays in his or her own tradition.
Once a spiritual assessment has been made, then the appropriate spiritual intervention should be offered. While spiritual and religious interventions can be provided by any clinician, integrating a pastoral care provider in the health care team will ensure that the team becomes familiar with religious and spiritual issues and that patient's spiritual needs are met. Some examples of spiritual practices are meditation, guided imagery, art, journaling, spiritual direction, pastoral counseling, yoga, religious ritual and prayer.
Appropriate referrals to chaplains and other pastoral care providers are as important to good healthcare practice as are referrals to other specialists. It has been argued that discussions with patients about spiritual matters should be initiated solely by chaplains.21 Others recognize that healthcare providers can use spiritual histories as a screening tool to understand the role that a patient's beliefs play in his or her health and illness. Some patients may have complicated ethical and spiritual issues. Providers need not feel that they must solve these dilemmas; most physicians are not trained to deal with complex spiritual crises and conflicts. Chaplains and other spiritual caregivers are, and often work with physicians in the care of patients.
It is important that healthcare providers be aware of their own values, beliefs, and attitudes, particularly toward their own mortality. A spiritual perspective on care recognizes that the clinician-patient relationship is ultimately a relationship between two human beings. Confronting personal mortality enables a provider to better understand and empathize with what the patient is facing, to better handle the stress of working with seriously ill and dying people, and to form deeper and more meaningful connections with the patient.
The Role of the Chaplain
In recent years the chaplain has become an increasingly important member of the healthcare team. Traditionally, the role of the chaplain has been to administer to the patient certain prayers and rites particular to the patient's religion. Today the role of a chaplain is often much broader. The chaplain can act as an extension of the patient's personal and community support system, as well as be a source of spiritual support for the patient. When the chaplain has a regular presence in a healthcare setting, the opportunity exists to provide support to the staff as well. William Hulme, a Christian minister and author, defines pastoral care as the following:
Pastoral care is a supportive ministry to people and those close to them who are experiencing the familiar trials that characterize the world, such as illness, surgery, incapacitation, death and bereavement.22
It is the spiritual aspect of human nature that raises questions about ultimate meaning and purpose, questions for which medicine and science have no answers. These issues require a unique language in which symbolism, story, and ritual are often involved. Chaplains have expertise in this form of communication and are often best able to answer such questions.
Some of these questions and concerns might be stated in the language of faith or religion. Here the patient might invoke God, and in this instance statements of faith would be used to deal with the questions. At other times, questions dealing with the purpose of one's life might be more appropriately answered in existential terms. The chaplain can deal with these issues in terms of how the world works, spirituality, and what we consider the essence or meaning of life.23
The main goal of a chaplain is to support the patient and to be present for him or her emotionally. This is what is called a ministry of presence, which is centered on a caring acceptance, a nonjudgmental stance, and physical and emotional availability. It is important that the chaplain give the patient complete autonomy in the relationship. To this end, the health care provider should be familiar with the capabilities, attitudes, and philosophy of a chaplain or spiritual practitioner before making a referral -- not all religious practitioners are capable of allowing autonomy and respecting divergent points of view. A chaplain certified in clinical pastoral education (CPE) is a good referral. CPE-certified chaplains have been trained to address the spiritual issues presented in a clinical setting. Chaplains are not necessarily clergy, although they can be, but all CPE-certified chaplains know how to work with patients with different religious or spiritual beliefs. These chaplains can also work with atheists and agnostics.
More information about chaplains can be obtained from the following organizations:
National Association of Catholic Chaplains, 3501 South Lake Drive, PO Box 07473, Milwaukee, WI 53235-0900, www.nacc.org
Association of Professional Chaplains, 1701 E. Woodfield Road, Suite 311, Schaumburg, IL 60173, www.professionalchaplains.org
Dying patients have no control in the progress of their illness, and enabling them to have control in the relationship is especially important.23
Pastoral Care Models
Health practitioners working in hospitals and other institutions should be familiar with models of pastoral care. There are basically two approaches: denominational and one for all. In the denominational model, the chaplain of a specific religious denomination or faith serves all the patients of his or her faith or denomination. Though this is the more prevalent and traditional model, a disadvantage is that it is logistically difficult for the chaplain to be integrated into the treatment team. In the one-for-all model, a chaplain is designated to one or more specific units in the clinical setting, becoming part of the treatment team and providing pastoral care for all patients and staff on the assigned unit. The disadvantage of the one-for-all model is that the chaplain may not be able to meet the specific needs of all denominations or faiths. Many institutions provide a mixture of these two systems as a way of offering a continual integrated presence and meeting specific denominational needs.23
For patients who are not religious, there are many nontraditional forms of spiritual expression that the pastoral care provider can offer or that the patient may already practice. These will help the patient have a sense of meaning and connectedness with the surrounding world and include the practice of meditation or guided imagery, journaling and the reading and writing of poetry, and other creative arts such as music and gardening.
For religious patients, one of the services that chaplains can provide is religious counseling. This is defined as the explicit interaction between the chaplain and the faith system of the patient and family members. It consists of four main tasks: assessment, emotional faith support, intellectual faith support, and interpretation.23
Assessment is necessary to learn about a patient's beliefs. If the patient is religious, it is helpful to ascertain if the individual believes in God or a higher power and to gain their unique perspectives. Some people primarily see God as a doer, a God of action who creates, destroys, heals, inflicts, etc. Other people see God as a supporter, one who although capable of doing things, is primarily involved in making sure we get by. The patient's perception of his or her disease, suffering, and death can be significantly influenced by these beliefs.
If the patient is not religious, it is important to find out about other spiritual beliefs and practices. In either case, religious or spiritual, what may ultimately give a patient a sense of meaning and purpose may be within the context of the particular identified beliefs or outside of that context. Patients may talk of career, relationships, pets, or other aspects of their lives. Connections to a community, religious or otherwise, may be important to patients. The assessment should, therefore, enable the chaplain to ascertain the parts of the patient's belief system that are supportive, as well as those that may hinder the patient's coping ability.23 In a hospital or hospice setting, there are CPE-certified chaplains who know how to facilitate the ongoing connection with patients' religious communities.
Emotional Faith Support
The chaplain's role also includes supporting the patient's faith system as it is, helping to strengthen it, and helping the patient deal with the emotions related to issues of faith. Here the chaplain tries to reinforce the positive aspects of the faith system by accepting and affirming them but also by clarifying them. A patient who is having doubts in his or her faith as a result of the crisis he or she is in needs to be reassured that these doubts are normal and not to be feared. Patients need to feel that there is hope, if not for physical healing, then certainly to know that they will not be abandoned, will be able to bear their sufferings, and will always be cared for and loved by their caregivers and the community.
In summary, emotional faith support is not intended to change the patient's faith system but to help the patient maximize the support it provides.24
Intellectual Faith Support
Intellectual faith support involves changing the patient's faith system or refocusing on its positive aspects rather than simply supporting it. This is a cognitive process in which both the patient and the chaplain work together to change parts of the patient's faith system that both agree are not helpful.
The final part of the religious counseling is the interpretive function of the chaplain. This involves representing the faith issues and systems of patients to the staff, so that better communication can be achieved and proper medical care can be administered, while at the same time respecting the traditions and beliefs of the patients. The medical staff may also want information on certain religious beliefs and customs that are foreign to them, such as the beliefs of Jehovah's Witnesses about receiving blood, or the beliefs of Santería, an increasingly prevalent religion in Southeast Florida. The chaplain can also become a mediator between patients and staff when misunderstandings concerning faith questions occur. It is important that the chaplain have some knowledge of psychology, so that his interpretive function can be spoken in both the language of religion and the language of psychology. The chaplain will then become the liaison between the arena of faith and the arena of science.23
Religious and Cultural Rituals
Every faith or cultural tradition is rich with practices and rituals that are of great support to the believer, particularly in moments of crisis. The most common religious ritual is prayer. Many patients have set times in the day when they pray and are helped by having this practice included in their care plans so that the ritual is facilitated.
It is entirely appropriate (and should be encouraged) to invite caregivers who would like to pray with their patients to do so, if the patients agree to it. Prayers need not be formal. They can be a single thought or a wish that the patient and caregiver have been talking about. It may be a simple blessing or simply the silent presence of the caregiver while the patient articulates the prayer.
Along with prayer, the reading of texts sacred of the patient's spiritual tradition can be of great support. This too should be included in the care plans so that the patient has time set aside for this reading. When a patient is too infirm to read texts on his or her own, a caregiver can offer to read to the patient from the selected texts.
Both prayer and reading serve as effective methods of relaxation. There are also many rituals that patients may find comfort in from their own cultures, and some families and patients have rituals they have created themselves.
Other rituals can be provided either by the chaplain or by the patient's spiritual or cultural leader. It is important that there be good communication between chaplaincy services and the patient's community in order to help the patient remain connected with his or her community.25
Religious and cultural beliefs may impact practical decisions as well. For example, diet may be an important aspect of a patient's religious observances. Many hospitals make provisions to meet these special dietary needs as long as the patient's health is not compromised. Some religions recommend that articles of clothing be worn in the hospital or offer ways to prepare the bodies of the deceased once death occurs. Chaplains are good resources to find out this information, as is a resource booklet prepared by The University of Virginia Health Sciences Center.26
Whatever form it takes, the active practice of spirituality can bring resolution to existential concerns, particularly the fear of death.
Spirituality can be an important dimension of a person's life, particularly when he or she is dealing with chronic illness and suffering. Spirituality is that aspect of all human beings that seeks to find meaning in life and, hence, it is a way that people heal.
All care providers (doctors, nurses, chaplains, social workers, therapists, family, faith communities) can participate in the spiritual dimension of a patient's life. Each professional is trained to deal with spiritual issues in a different way. The interdisciplinary model of palliative care that includes spiritual support is intended to ensure that patients receive the best care and opportunity for healing possible in a compassionate, caring health care system.
Puchalski CM. Spirituality and end of life care. In Berger AM, Portenoy RK, Weissman DE, eds. Principles and Practice of Palliative Care and Supportive Oncology, 2nd ed. Philadelphia: Lippincott Williams & Wilkins, 2002.
The George H. Gallup International Institute. Spiritual beliefs and the dying process: a report on a national survey. Conducted for the Nathan Cummings Foundation and the Fetzer Institute, 1997. Available at www.ncf.org/reports/rpt_fetzer_/content/art34084.html. Accessed 20 Dec 1996.
Cohen SR, Mount BM, Strobel MG, Bui F. The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med 9:207-19, 1995.
Association of American Medical Colleges. Report III, Contemporary issues in medicine: communication in medicine. Medical School Objectives Project (MSOP). Washington, DC: Association of American Medical Colleges, 1999, pp. 25-26. Available at www.aamc.org/meded/msop/msop3.pdf.
Association of American Medical Colleges. Report I, Learning objectives for medical student education: guidelines for medical schools. Medical School Objectives Project (MSOP). Washington, DC: American Association of Medical Colleges, 1998. Available at www.aamc.org/meded/msop/msop1.pdf.
Handzo, G. Psychological stress on clergy. In: Jimmie C. Holland and Julia H. Rowland, eds. Handbook of Psychooncology: Psychological Care of the Patient with Cancer. New York: Oxford University Press, 1990.