Is there Hope in Hospice Care?
By Gary Votour, MHCA.
What is hope? Hope is desire accompanied by an expectation of or belief in fulfillment. One can use the word as a verb (I hope for something) or a noun (I have hope I will find something). Does the move from recovering from an illness in a hospital to anticipating the end of life as a hospice patient entail giving up hope?
Hospice care in this country is a relatively new branch of medicine and health care. As it continues to evolve, new dimensions to its core function are being addressed by the medical community. One of the areas of recent research is the ways in which a hospice care provider can provide spiritual support to patients who are approaching the end of their lives.
Traditionally, Western medicine has adopted a view of detachment from the religious or spiritual explanations of illness and cures. Biomedical approaches focus primarily on the physical body and its diseases and illnesses and adopt a scientific view of both. At the same time, most acute care providers have chaplains who strive to bring spiritual comfort and hope to patients in times of illness. This creates a tension between traditionally trained care providers who have been taught to disregard the spiritual needs of their patients in favor of a clinical view and those who have adopted a profession of providing spiritual hope to those same patients. (O’Connell, 2001)
Hope is an important aspect of spirituality. The hope for a cure or a rapid recovery is its most common manifestation in acute care settings. In hospice, that hope often becomes a hope for an afterlife as death approaches. Hope belongs in the intersection of clinical and existential concerns… and as a patient moves from one to another, a sense of hope is often what binds one to the other.
Figure 1. Domain of overlapping clinical and existential concerns.
(Josephson and Peteet, 2004)
Hope and Hospice Care
Patients who are facing death draw hope from a number of sources, most importantly from their own individual spiritual view of the world. By developing a better understanding of the worldview of a hospice patient, care providers can better provide the spiritual support a patient needs to maintain hope. Hope may be as simply as wanting a pain free end to a life cut short by illness or accident. Hope may be as simple as wanting time to bring your mortal affairs to an end. Hope may be as simple as needing time to reflect and prepare oneself to meet their creator or move into a new life in different world. (Moll, 2010)
A spiritual worldview that includes hope helps bring a patient closure to mortal affairs and an acceptance of death in anticipation of a spiritual afterlife. For each patient, hope is different. The job of the care provider is not to decide what a patient should hope for based upon their own beliefs or perceptions, but to discover what the patient believes and provide support for that belief.
As a patient moves into hospice care, a shift from a world of authority to one of autonomy occurs. In an acute care setting, authority is given to the doctors and other care providers to act on one’s behalf. This authority is reinforced by a world of white coats and clinical settings. The decision to accept one’s death goes against that world, and doctors in particular often feel they have failed a patient if they choose to pursue hospice care and forego treatment for a fatal illness. The guilt that feeling of failure creates often leads a doctor to make a patient feel as if they have somehow failed the doctor if they choose hospice… but it is the patient’s choice to regain autonomy, and it is their right to do so when and how they choose. For many patients, hospice brings a period of peace and a release from pain before they die. That time is worthy of hope. (Moll, 2010)
Hospice is a philosophy of care where the emphasis is on the quality of life, not about prolonging its length. Those that provide hospice care are touched by death over and over, and often they begin to lose hope themselves. They disconnect, become clinical and forget that part of their job is to help their patient hold on to hope. For them I offer the following quote by Rob Moll, author of The Art of Dying.
“As anyone who has observed a good death can attest, it is in many ways a life changing event for those who watching. While tremendously sad and even horrible, a good death can be beautiful and deeply moving. … There is less mystery as we see how the physical body ceases to function. There is less fear as we see caregivers assist the dying in their last moments. There is more hope as we watch, even for a moment, the veil lifted and a dying person drawn into eternity. When we’ve seen a friend or loved one die, it’s easier to learn to die.”
Is there hope in hospice care?
Of course there is.
It’s at the very core of it.
It is even in the word itself.
One simply has to look for it
to find it there.
Josephson, A and Peteet, J. (2004) Handbook of Spirituality and Worldview Clinical Practice. Arlington, VA. American Psychiatric Publishing, Inc.
Moli, R. (2010). The Art of Dying. Downers Grove, IL. InterVarsity Press, Inc.
O’Connell, L. (2001). Integrating spirituality into health care near the end of life. Innovations in End-of-Life Care. USA. Education Development Center, Inc.