“We must realize that dying is a spiritual process with medical implications, not a medical process with spiritual implications.”
— Gwendolyn London, DMin, former Director, D.C. Partnership to Improve End-of-Life Care
In its Clinical Guidelines for Quality Palliative Care, the National Consensus project lists the addressing of spiritual/religious/existential concerns as one of eight essential domains.
Iowa City Hospice recognizes the importance of the spiritual journey at the end of life and offers resources to assist the faith leaders in our community. The Emotional-Spiritual section of our website, for instance, is written to help lay people consider questions concerning spirituality and hope. Those struggling with sadness before a death can gain insight and solace from our article about grief, as can family members afterward during the period of mourning. We have an article that helps individuals preparing an advance directive to look at their own existential beliefs and identify their own definition of quality of life.
In addition, for your professional development, the list below includes links to resources on other websites that you may find helpful. By all means, if you would like to learn more about end-of-life issues, give us a call at 1-800-897-3052, toll-free. Our goal is to be your partner in care so together we can help the citizens of our community gain the strength and insight they need for this critical life passage.
Spirituality at life's end
“Illness is both soul-shaking and soul-evoking for the patient and for all others for whom the patient matters. We lose an innocence, we know vulnerability, we are no longer who we were before this event, and we will never be the same.” – Dr. Jean Shinoda Bolen, author Close to the Bone: Life-Threatening Illness and the Search for Meaning
Spiritual pain and spiritual healing are both the threat and the opportunity presented by serious illness. Patients and their families are faced with a loss of hope, a loss of identity, and a loss of independence. They often ask “Why me?!?” and become angry at God. Coping with physical pain and discomfort can bring up feelings of failure, guilt, depression, and anxiety. There are, obviously, no easy answers to the existential questions that arise.
But although a physical cure may not be possible, spiritual healing is an option for everyone. As providers of care, we can help patients and families find meaning in the present situation, to identify purpose. Dr. Ira Byock, for instance, offers a model concerning landmarks and growth opportunities at the end of life.
Sometimes we are called on to help patients and families reframe hope for a cure and a long bright future into hope for a good day, hope to see a grandchild born, or hope for a peaceful death. Resolving old conflicts, reconciling with the past, or addressing unfinished business with friends and family are also powerfully healing processes at the end of life.
Healing may begin as a venting of strong emotions and evolve into exploration of inner, untapped strengths and resources. It is not uncommon for the dying, and their caregivers, to open to a larger, more transcendent meaning of life beyond individual ego and achievement. Ultimately, spiritual healing may occur when the body and spirit are no longer struggling as the conflict is released with the patient’s death.
There are many things that can be done to assist with spiritual healing. Listening with an open and caring heart is fundamental. Often there are no answers, only questions. But providing a presence and compassionate acknowledgment of the struggle can do wonders to alleviate any suffering.
Certainly, working to relieve physical pain will help the patient by liberating energy needed to address spiritual issues. Assist the patient and family to get active treatment so that any physical pain is fully managed. You might also help by teaching nonpharmacologic approaches to pain management such as meditation, prayer, progressive relaxation, and guided imagery.
Shifting the focus of hope is a powerful strategy in the face of terminal illness. Validate feelings of loss and disappointment that long-term goals may no longer be attainable. Then, turn attention to attainable short- and medium-term goals. Although the progress of their illness may be unpredictable, paying attention to daily victories and appreciating the little joys in life can be very effective for reestablishing a sense of hope and positive anticipation.
Spiritual healing may call for a life review. Chochinov and colleagues (2005) evaluated a Dignity Therapy program during which patients were invited to discuss aspects of their lives that mattered most and what they wanted to be remembered for. These sessions were taped and transcribed and returned to the patient for final editing. Patients were then given the document to present to family members. Postintervention measures of suffering showed significant improvement, as did self-reports of depressed mood.
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Talking about difficult topics
Even those with significant training can find it awkward to speak about sensitive subjects such as death and dying. Emotions are raw, and when there are no answers-or no easy answers-we professionals often feel lacking in our ability to respond.
Fortunately, there are resources available to help us learn how to graciously discuss difficult topics.
ADEC offers an annual conference that gives up to 12 CEUs as approved by the Association of Social Work Boards. Check with your state board to determine if these credit can be applied for your license renewal.
Developed by the Institute for Healthcare Communication, this is a VHS video tape or slide-supported inservice kit to develop skills for discussing difficult topics such as advance care planning, shifting the focus of treatment to palliative care, death notification and grief, managing anger and mistrust, and resolving conflicts arising from cultural differences. The kit can be purchased in full, or the workbook can be purchased separately.
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These 4-week online classes are offered through Mount Ida College specifically for busy professionals.
Supporting families at the end of life
A full 83% of Americans wish to die at home. These were the findings of a nationwide survey of 400 demographically representative adults that was presented to the National Hospice and Palliative Care Organization (Quality of Life Matters, 2005). Survey respondents identified dying with family members around them, dying with dignity, dying pain free, and dying with the benefit of spiritual counseling as the most important qualities of a “good death.”
Although hospice care is the gold standard for providing the instrumental, emotional, and spiritual support families need to create a good death-at home or in a facility-surprisingly few people know this. As members of the clergy, you can help your congregation to get the care that aligns with their desires, as well as receiving support from hospice, yourself, in the form of assistance with the difficult issues that arise at the end-of-life.
Many faith leaders feel that their training around death, dying and bereavement was not as comprehensive and they would have liked. Working in conjunction with the hospice team, you can learn about resources available in your community. You can also get assistance with grief counseling. Hospice typically offers support groups and has specially trained staff conversant in the needs of patients and families facing life-threatening illness.
Advance care planning, promoting family discussion of preferences concerning life support, is a good place to start. Hospice has the documents and the social workers can work with you to make this a project in your congregation. To further assist you, Project Compassion in North Carolina has developed a workbook that has been used by faith communities throughout the nation to create their own advance care planning initiatives.
Another way to help your congregation is to encourage early enrollment in hospice, a 100% free service to Medicare recipients with a life-threatening illness. Too many people wait until the last minute to engage this service-25% are enrolled in their last week of life, 10% on their last DAY (Medicare Payment Advisory Commission, 2006). They struggle unnecessarily in the last months, reaching a point of exhaustion as they cope alone with the physical and emotional strain of their loved one’s terminal condition. Hospice families frequently lament, “Why didn’t anyone tell us about hospice sooner?” Furthermore, a Yale Medical School study revealed that family caregivers with fewer days of hospice support are four times more likely to develop a major depressive disorder than those who had a longer length of service (Bradley and colleagues, 2004).
What can you do support your parishioners and promote early enrollment? Educating them about hospice is a good first start. Many people are unaware of the range of benefits. And even though hospice requires a doctor’s referral, if the patient or family brings up the subject, physicians are generally very open to prescribing this free Medicare benefit.
A group of Pennsylvania researchers (Casarett, Crowley, & Hirschman, 2004) offer insight as to how to best describe hospice. They interviewed bereaved family members and discovered that there were a number of hospice services that were highly valued but not expected by the patient or family. On the basis of these findings, the researchers recommend bringing up the following topics during discussions about advance care planning or the hospice option:
- spiritual and emotional support
- 24-hour access to telephone assistance/advice
- regular visits from a nurse
- education about their condition
- free coordination of care and case management
- pain and symptom management
- help for family caregivers
Many people, including doctors, erroneously believe that hospice is appropriate only for home care. In fact, if prescribed by a physician, hospice services can be delivered in nursing homes. According to a 2006 JAMA article (Hanson & Ersek), facilities with a hospice contract are the preferred option. Studies indicate that residents on hospice care are more likely to have their pain assessed and managed, and are less likely to have physical restraints or receive inappropriate medications (Miller and colleagues, 2002; Miller and colleagues, 2003). Furthermore, in a comparison study, families rated nursing home care with hospice participation higher than nursing home care alone (Baer & Hanson, 2000). Even your parishioners in nursing homes could benefit from hospice care, thus you might suggest they ask the doctor about a referral.
Finally, you may want to help your congregants by establishing a support team system, such as the one pioneered by Project Compassion in Chapel Hill. This award winning coalition of faith communities, public, private and academic institutions mobilized 625 volunteers to create 80 support teams. Support teams provide practical, emotional and spiritual support for families coping with life-changing illness.Working together as a team, these volunteers pool their talents, time, and creativity, to offer much more support than one volunteer can provide alone. Project Compassion sells workbooks and leads conferences to help other groups set up a support team system in their communities.
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Cultural and spiritual competence
For all peoples of the world, the end-of-life passage is imbued with deep cultural and religious significance. As practitioners, we need to be sensitive to the expectations and rituals of the people we serve. We also need to recognize that a history of racism, barriers of language, and disparities in care will color community perceptions of hospice and palliative care.
Cultural competence begins when we each become aware of our own cultural heritage and spiritual beliefs. With self-awareness, we can begin to observe and study the heritage and beliefs of others. Although generalizations can be useful, we also must recognize that individuals vary within other cultures and religions as much as they vary within our own. Cultural and spiritual competence calls us to think deeply and be astute in asking questions rather than act on assumptions. Demonstrating our sincere desire to understand the needs of each family will go a long way toward improved communication and a better matching of appropriate care and services.
Here are some online resources to help you in your own acquisition of cultural competence:
Developed by the University of Washington, these tip sheets offer insights for clinicians working with cultures other than their own. They have general healthcare tip sheets for over 10 cultures, including many Asian ethnicities as well as deaf and hard of hearing. Specific to end-of-life care, they have pages for Latino, Russian and Vietnamese cultures.
Summary of a 2004 panel of experts hosted by the Robert Wood Johnson Foundation. The focus is on end-of-life care needs of the African American community and barriers to hospice and palliative care.
Published by the National Hospice and Palliative Care Organization, this 40 page pdf file discusses the results of focus groups of African Americans talking about topics such as caregiving, advance care planning, death, dying and hospice. It also showcases model hospice and palliative care programs around the country that are addressing health care disparities and connecting through active involvement of faith communities.
Downloadable from the Health Care Chaplaincy, this 2013 handbook looks at both Eastern and Western religious traditions surrounding health care, as well as non-European cultural attitudes about topics such as terminal illness disclosure, pain, time orientation, etc.
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A transdenominational organization, My Jewish Learning seeks to use the Internet to offer education and resources to help Jews and non-Jews understand Judaism and Jewish life.
Online support for professionals in spiritual care
This is a multifaith group dedicated to the integration of spirituality and psychotherapy. Most of the participants are members of the American Association of Pastoral Counselors, meaning they have extensive training, skill and experience in both psychology and theology. Although the focus is not specifically on end-of-life care, death and dying issues are frequent topics.
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Baer, W. M., & Hanson, L. (2000). Families’ perception of the added value of hospice in the nursing home.Journal of the American Geriatric Society, 48, 879-882.
Bradley, E. H., Prigerson, H., Carlson, M. D. A., Cherlin, E., Johnson-Hurzeler, R., & Kasl, S. V. (2004).American Journal of Psychiatry, 161(12), 2257-2262.
Casarett, D. J., Crowley, R. L., & Hirschman, K. B. (2004). How should clinicians describe hospice to patients and families? Journal of the American Geriatric Society, 52(11), 1923-1928.
Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., McClement, S., & Harlos, M. (2005). Dignity therapy: A novel psychotherapeutic intervention for patients near the end of life. Journal of Clinical Oncology, 23(24), 5520-5525.
Hanson, L., & Ersek, M. (2006). Meeting palliative care needs in post-acute care settings: To help them live until they die. JAMA, 295(6), 681-686.
Medicare Payment Advisory Commission. (2004). Report to Congress: Increasing the value of Medicare. Retrieved 2/18/07 from the Internet at http://www.medpac.gov.
Miller, S., Mor, V., & Teno, J. (2003). Hospice enrollment and pain assessment and management in nursing homes. Journal of Pain and Symptom Management, 26, 791-799.
Miller, S., Mor, V., Wu, N., Gozalo, P., & Lapane, K., (2002). Does receipt of hospice care in nursing homes improve the management of pain at the end of life? Journal of the American Geriatric Society, 50, 507-515.
Quality of Life Matters (2005). 83% of Americans want to die at home. Quality of Life Matters, 6(4). Naples, FL: Quality of Life Publishing Company.
Rickerson, E., Harold, J., Kapo, J., Caroll, J. T., & Casarett, D. (2005) Timing of hospice referral and families’ perceptions of services: Are earlier hospice referrals better? Journal of the American Geriatrics Society, 53(5), 819-923.
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