Spiritual Pain in Advanced Cancer: Symptom for Hospice Chaplains to Address

Quality of Life Can Improve

A vast majority of advanced cancer patients receiving palliative care consider themselves spiritual and religious.  But spiritual pain is still common and is linked to lower quality of life.  This is another place in which the holistic hospice approach to mind and body may improve life’s final stage.

A study done by the Division of Geriatrics and Palliative Medicine, The University of Texas Medical School at Houston, Texas, examined the frequency and intensity of spirituality, religiosity, and spiritual pain, and how spiritual pain was associated with symptom expression, coping, and spiritual quality of life.

Researchers interviewed 100 patients with advanced cancer and had them complete questionnaires assessing their symptoms and ability to cope. 

Spiritual pain was reported in 44%, and was associated with lower spiritual quality of life. Patients with spiritual pain reported that it contributed adversely to their physical/emotional symptoms. There was a trend toward increased depression, anxiety, anorexia, and drowsiness among patients with spiritual pain, although this may not have been significant after corrections.

Every Pathways Hospice patient can have visits from extremely well qualified spiritual care counselors to give unbiased spiritual or religious support to patient or family members, to identify and resolve spiritual concerns, to explore the meaning of life, to administer sacraments, or to be a warm listening presence when needed.

This study can be found at J Pain Symptom Manage.  2011; 41(6):986-94 (ISSN: 1873-6513).

When It Comes to Hospice, What's In It for Families?

We Know What Patients Get

The multiple advantages of hospice for the family are often lost in our natural concern for the patient.  We know the patient gets to stay at home with expert pain and symptom control as well as spiritual and emotional support.  We know they have volunteers for companionship and the safety and energy conservation provided when a home health aide assists with personal care.  And of course, there are the extras like massage with aromatherapy and music therapy.

“Unit of Care”

But how does the family benefit?  In the very unusual insurance benefit that is hospice, Medicare defines the “unit of care” as the patient and family—and family is loosely defined to include close personal friends and significant others.

Relief from Caregiving

One of the pluses caregivers love most is relief from being the caregiver.  It may be a couple of hours at the bank and beauty shop while a volunteer sits with the patient; it may be a 5-day paid respite stay in a skilled nursing while the caregiver recharges her metaphorical batteries; it may be a home health aide to do the physical care of bathing, dressing, shaving and linen changes several times a week; or it could even be a volunteer to grocery shop, run errands or walk the dog.

Emotional and Spiritual Support

A family at odds about healthcare goals may have a conference facilitated by a hospice social worker.  There is some financial relief as hospice assumes the cost of medications, equipment and supplies related to the terminal illness—even over-the-counter products and disposable briefs.  Then there is the assistance with funeral plans or insurance issues from skilled medical social workers—and sometimes a spiritual care counselor to preside over a memorial service or to pray with family members.

Easing the “Burden”

Those approaching the end of life often express regret over their perception of being a burden.  It is a relief to them to find out that family members can call hospice 24 hours a day to talk to a nurse or arrange a visit if needed, and that their families can have the same spiritual and emotional support that they get.  Patients are also comforted to know their family will have 13 months of support in their bereavement.

Time

And perhaps most important of all, because people who opt for hospice often live longer, patients and families have a few more cherished days or weeks to share this precious finale to life.

And Benefits for the Physician?

• Physicians get fewer calls at night and on weekends
• They have extra eyes and ears in the home. 
• Doctors get to be the heroes by giving patients and families better quality, and often quantity, of life.
• Physicians have hospice medical directors with whom they can consult on complicated symptoms.  

Spiritual Support in Hospice

Meaning of Life

When a patient may be facing the end of life, spiritual issues often begin to surface—people begin to ponder the meaning of their lives. Hospice is intended to care for not only the physical wellbeing of the patient, but the emotional and spiritual aspects as well. Toward that holistic end, Medicare mandates that hospices provide spiritual support (as they do in the military, another place where death is a possibility).

Spirituality is about those aspects of life that are not material; it is about relationships and finding meaning. Each of us has a spiritual side; some express it through religion, some in other ways.

But when faced with life-threatening illness, many experience feelings of fear, powerlessness, helplessness and despair, which are often expressions of spiritual distress.  Hospice spiritual care counselors are knowledgeable about a wide range of religious and spiritual traditions. They may be a presence in the home, or they may be the connection to the patient’s own faith tradition.
 
A Pathways Hospice Spiritual Care Story

Years ago, Pathways had a Vietnamese patient who had emigrated after the Viet Name war, in which he was an army colonel. His cancer pain was never seemed completely managed, despite multiple approaches.

One day he mentioned he wished he had not stopped practicing his Buddhism and wanted to pray with priest, however he was too weak to leave home. A hospice spiritual care counselor began networking until he found a Vietnamese Buddhist nun who came to pray with the patient.

Interestingly, not only did the patient’s anxiety decrease dramatically, but his pain was gone after these visits.

How Spiritual Support Can Help

Some of the many ways that hospice spiritual care counselors can help as requested by the patient or family are by:

• Giving unbiased spiritual or religious support for patients or family members
• Helping to identify and resolve spiritual concerns affecting the patient or family
• Exploring the “meaning of life” questions
• Administering sacraments
• Caring listening
• Contacting clergy or a spiritual leader of a specific faith community for the patient
• Exploring ways to prepare for “letting go” of this life in preparation for another
• Being another caring presence in times of need or distress

For more information about Pathways Hospice Services, please visit our website at www.pathwayshealth.org or email: info@pathwayshealth.org.