“All the work at St. Christopher’s should stem from respect for the patient and very close attention to his distress. It means really looking at him, learning what this kind of pain is like, what these symptoms are like, and from this knowledge finding out how best to relieve them. We have to learn what it feels like to be so ill, to be leaving life and its activity, to know that your faculties are failing, that you are parting from loves and responsibilities. We have to learn how to feel “with” patients without feeling “like” them if we are to give the kind of listening and steady support that they need to find their own way through.” — Dame Cicely Saunders, “Watch with me,” Nursing Times, 1965
By Colby Phillips, Joan O’Gorman and Bronwyn Becker
When Dame Cicely Saunders, an English nurse, physician and medical researcher, established the first modern hospice house in London, she made room in her model for just such questions. These questions, for many, open onto the realm of spirituality, broadly conceived as the need for connectedness, belonging, meaning, and purpose — the realm, in the words of theologian Paul Tillich, of “matters of ultimate concern.” Tending to these concerns, alongside physical, social and psychological pain, was for Saunders necessary to fulfill the mission of discovering and alleviating the root causes of suffering and promoting a vision of care for the whole person that is at the heart of the hospice philosophy.
Caring for the Whole Person
The hospice movement was brought to the United States in 1969 by Florence Wald, dean of the Yale School of Nursing, and proliferated during the 1970s through grassroots and volunteer-based organizations. Since 1982, when Congress enacted the Medicare hospice benefit, our organization has proudly provided hospice services to Chittenden and Grand Isle’s terminally ill patients and their families.
To support the client-centered and whole-person model, professional hospice organizations are built around interdisciplinary teams of registered nurses, licensed nursing assistants (LNAs,) physicians, medical social workers, chaplains, bereavement counselors and volunteers. These team members each offer their own particular skill sets, then collaborate closely to ensure optimal care. Because clients may reside in different settings, including assisted-living facilities, homes for the terminally ill (such as the McClure Miller Respite House) or in their own homes, hospice caregivers go wherever clients call home.
Caring for the Spirit
“Spirituality is that aspect of ourselves that seeks and expresses meaning and purpose. It is the way we experience our connectedness to the moment, to self, to others, to nature and to the sacred.” — Christina M. Puchalski, M.D., Betty Ferrell, Ph.D., Rose Virani, RNC, et al., “Improving the quality of spiritual care as a dimension of palliative care: Consensus conference report,” Journal of Palliative Medicine, 2009
Within the hospice interdisciplinary team, it is primarily the role of the spiritual caregiver (also called chaplain) to provide support for those who want to explore the spiritual nature of their lives at their end. These explorations may take clients into such “ultimate matters” as connectedness, meaning and purpose; they may help strengthen their relationships to nature and the cosmos, to sacredness and ritual, to the wellsprings of creativity, empathy and resilience, and to their deepest longings, hopes and imaginings. They may address with loving kindness the human need to be seen and acknowledged, to have some sense of control over one’s destiny and to feel validated and understood in the profound experience of living with serious illness. They may acknowledge and help facilitate the need to be reconnected to anchors of stability; to receive comfort, consolation and reassurance; or to sift through the complexities of experience and discover the nuggets worth saving — moments of joy, triumph, release, transcendence, gratitude, wonder — knowing that these treasures may then become the basis of new narratives: resilience, survival, integrity, renewal.
When invited, spiritual caregivers also tend to people in spiritual distress. Clients sometimes come to hospice exhausted after long periods of treatment or disoriented after a sudden terminal diagnosis. They may come experiencing loss of meaning or faith, alienation or despair, anger or hopelessness, grief or fear. In these spaces, spiritual caregivers rarely have solutions or answers, yet they can often offer helpful questions:
- What (or who) do you have faith in now?
- What guides and supports you in your life?
- What really matters to you?
- What brings you joy?
Skilled in relational engagement and such healing arts as deep listening, empathy, non-judgment, meaning-making and unconditional positive regard, spiritual caregivers offer the ability to just be present, even in the face of a strong need to fix or solve, that for many people can paradoxically open up a space in which spiritual gifts — peace, healing, simplicity, recognition, forgiveness — may appear and bear fruit.
Spiritual support is non-sectarian and non-proselytizing, guided by each client’s or family member’s particular truths, faiths and beliefs. Spiritual caregivers seek to communicate to clients and families that they are beloved, safe and deserving of life’s bounty of riches, possessing inherent dignity and self-worth; they help normalize difficult and complex emotions, rendering them less terrifying and strange; and establish connections to larger traditions and universal patterns that can help those in need bear even the most daunting of life’s challenges.
Colby Phillips, Joan O’Gorman and Bronwyn Becker are members of the Spiritual Care team at UVM Health Network Home Health & Hospice. They may be reached at 802-658-1900. Read part 2 of this series here.