Long-time readers of GriefPerspectives have come to expect that I frequently address issues of spirituality in this forum. Not only have I found spiritual issues to be paramount for many bereaved people (including those who profess no religious preference), but as readers know, I was trained and have practiced most of my career as a clinical pastoral counselor specializing in bereavement and end-of-life care. Over the last few years, I have increasingly thought about the intersection of spirituality and loss primarily through the lens of eight “touchstones.†I believe this model is a helpful way to make sure we “cover the bases†in assessing for spiritual issues that may be either supportive or complicating in the dying and/or bereavement experience.
Evaluating personal beliefs about God. While the World War II adage that there are “no atheists in foxholes†might be an oversimplification, many people become interested in spiritual matters as death approaches. Hadaway and Marler (2005) demonstrate that 70% of North Americans do not attend worship weekly, but concede that does not prove they are not believers in God. One minister colleague refers to the many “twofers†in his congregation—people who can be counted on to attend worship on Christmas and Easter!
Large throngs are unaffiliated with any religious group and yet profess a belief in God. If those beliefs center on a God that stands ready to do one’s bidding much like a magic genie, the crisis created by trauma, serious illness or bereavement can be overwhelming. This spiritual crisis will likely need more support than typical spiritual platitudes of “God doesn’t give you more than you can bear†and “Where God closes a door, He opens a window.â€
Participating in spiritual practices. Clinical and lay caregivers must always be aware that significant spiritual practices might be compromised for those who are dying. Communion, congregational worship, choral singing, baptism, corporate prayer and anointing are practices in which it can become difficult or impossible for dying people to participate. While chaplains and congregational clergy can lead many of these practices in individual ministry to the patient, bringing small groups of people to the dying or finding alternative, meaningful spiritual practices can be a great gift to those unable to assemble with their own religious community. Participating in communion, for example, with one’s own Bible study group can be far more meaningful to some than simply sharing the bread and wine alone with a minister. Moreover, group participation in these practices can ameliorate the sense of isolation often experienced by the dying while providing a practical way for apprehensive friends to be involved in the often-scary work of interacting with dying people.
Resolving fears and anxiety. The dying process can be characterized by various fears. In summarizing the bereavement literature, Gardner & Kramer (2009-2010) suggest that dying people want freedom from pain, dignity, respect, autonomy and honest information about their prognosis. Perhaps their greatest anxiety is that their care would become burdensome to family members. Fear increases as the dying and their caregivers sense these preferences might not be honored.
I have found it interesting that relatively few dying people express fears about the afterlife. I began routinely asking hospice patients, “So of all the things that really scare you now, what do you suppose are the things that frighten you the most?†and found patients and families honestly reported their issues of concern. Once labeled, the power of these fears often diminishes. Even when the fears remain, labeling them helps the healthcare team to understand the patient’s priorities and to intervene appropriately, such as with aggressive pain control.
Completing unfinished tasks. In the 2008 Morgan Freeman and Jack Nicholson film,
The Bucket List, two terminally-ill men embark on an around-the-world trip to complete their unfinished dreams before “kicking the bucket.†Both entertaining and thoughtful, the film epitomizes one important spiritual component of dying: finishing incomplete tasks.
Most people have some items on their
“bucket list†and thoughtful caregivers can frequently help the dying to get some of those completed. Perhaps the bucket list includes tape recording a life story or reconciling with a family member. It might include simple tasks such as updating the will, enjoying a favorite food or purchasing an important gift. One hospice chaplain told me in the months after the movie’s release, he began asking patients, “So what’s on your ‘bucket list?’†to the smiles of all and the thoughtful response of many.
Connecting to the faith community/heritage. Many people have a lively connection to a religious community but a larger number have a heritage with a particular faith group even though they have not been connected in many years. Some people will want professional caregivers to act as an interpreter to their own clergy or faith community. Some will want to reconnect with the community of their youth. Still others will talk openly about their beliefs and why they do or do not embrace the beliefs of the community in which they grew up. In any case, learning about the connection to the faith community or the faith heritage can be an important starting point in spiritual conversations with the dying and their families.
Establishing life legacy. One vital spiritual task in the dying process is coming to terms with the impact one has had (or hopes he/she has had) on the world they leave behind. Over the years, I have begun asking the dying patient, “Who would you say are the people in your life who have had the most impact on who you have become?†After some dialogue about those individuals, as a follow-up question I like to ask, “And to whom do you suppose you have passed along that legacy?†The ensuing conversation has helped dying patients establish in their own hearts and minds
“my life has mattered.†I have also found it beneficial to coach family members and friends to speak or write to the dying person, listing a specific character quality with a story of a time the quality was clearly seen. Generosity, faithfulness, integrity, patience, industry and perseverance are qualities to make up a good starting list to provide to family members as possibilities.
Finding meaning in illness, suffering and pain. Perhaps the most difficult spiritual task in dying is to find meaning in the experiences of illness, suffering and pain. Inevitably, some people look at the experience asking, “Why am I experiencing this?†or “How could a ‘good God’ cause this level of suffering?†Helping patients and family members talk about what I call “life’s great expectations†is a starting point for this conversation.
Many North Americans, for example, seem to believe 1) virtually all disease and injury is curable, 2) pain is optional, and 3) suffering is punishment for past deeds because good people shouldn’t suffer. For me, I don’t feel saddest that people hold these beliefs; I feel saddest at realizing people experience the shattering of these assumptions and face this suffering silently and usually alienated from the resources that could best help them make sense.
Some of the meaning made by the dying and their families will have clear religious teaching embedded in them, and I have found the patient’s own clergy can be an important team member to help sort out those beliefs. In other cases, the patient or family member’s own belief system transcends religious teaching. What has amazed me is the openness of patients and family members to talk about their assumptions about how “life is supposed to work.â€
A caregiver seeking to be spiritually supportive might say something like,
“There are so many tough questions you are facing right now about the meaning of all this and I wish I had a magic wand to make it all better. What do you suppose are the greatest expectations you had for this part of life that are now being shattered?â€
Rekindling hope. Frequently, family members suggest that they want to hold back the truth of a terminal diagnosis because they don’t want the patient to “lose hope.†Helping the dying maintain hope is an admirable goal, but it is most meaningful when the hope is anchored in the lived experience of the patient. When one is facing unremitting pain or symptoms of nausea, for example, and family members unwaveringly promise a good outcome, patients lose hope even faster; they intuitively realize that family members and even health care providers are not “leveling†with them.
Instead, seek to help family members and colleagues speak with “kind honesty,†and follow that with discussion of what the little hopes might be. Perhaps it is to watch a ball game, enjoy a particular food one more time or to view a sunset. Dying people have well-tuned lie detectors and “from a mile away†can usually spot the false hopes being held out by well-meaning family members and professional caregivers.
We simply must engage patients and their families with the issues of spirituality and their impact on the experience of dying. Of course it is personal—and so is the vast majority of what we talk about in counseling. But that does not mean that we should not address it. When we address physical, social, emotional and cognitive issues with a patient and her family but fail to acknowledge spiritual issues, we send a loud message that this perspective is unimportant or “off limits†for discussion.
What we might discover, however is that not only is spirituality a
significant issue in end-of-life and bereavement care; it might just be the
defining issue.
References:
Gardner, D.S. & Kramer, B.J. (2009-2010). End of life concerns and care preferences: Congruence among terminally-ill elders and their family caregivers.
Omega: Journal of Death & Dying, 60 (3), 273-297.
Hadaway, C. K. & Marler, P.L. (2005). How many Americans attend worship each week? An alternative approach to measurement.
Journal for the Scientific Study of Religion, 44 (3), 307-322.
Koenig, H.G. (2007).
Spirituality in patient care: Why, how, when and what. Philadelphia, PA: Templeton Foundation Press.
Author:
William G. (Bill) Hoy is an educator, counselor and author who has specialized in end-of-life and bereavement care for nearly 30 years. Dr. Hoy’s passion is equipping the next generation of physicians and other healthcare professionals through his research, writing and teaching responsibilities on the clinical faculty in Medical Humanities at Baylor University. His newest book is
Do Funerals Matter? The Purposes and Practices of Death Rituals in Global Perspective (Routledge, 2013).
