The Message of Illness from the Patient’s Perspective

I read a sign that went something like this: “Remember, dealing with death is an everyday thing for us, but for our patients it is their first time.” Do we know what the patient has been through? What is a ‘day-in-the-life-of’ our patient? What have been this patient’s experiences in the healthcare system? What do we really know about this patient? How do the previous questions inform your chaplaincy? I ask because in too many conversations with chaplains I get a queasy feeling that a one size fits all approach to spiritual is being used. That simply won’t cut if for excellence in spiritual care. Please listen carefully to the results of a compelling study conducted by Julia Overturf Johnson, BSN, MA, Daniel P. Sulmasy, OFM, MD, PhD, and Marie T. Nolan, PhD, RN titled, “Patients’ Experiences of Being a Burden on Family in Terminal Illness”, found in The Journal of Hospice and Palliative Nursing. September 2007; 9(5): 264–269. “An under-recognized aspect of care burden at the end of life is how dying persons experience and manage the fear of being a burden on their families. This burden can have emotional, physical, social, and financial aspects. Patients with terminal illnesses face grief and fear not only for their own future but also for their families’ future. These concerns over how their illness will affect their loved ones may influence how they seek care, what decisions they make about their care, and even how they experience dying. The purpose of this study was to further explore the concept of fear of being a burden on family from the perspective of the person in the terminal stage of illness.” My experiences as a field Chaplain attest to the validity of this finding. I recall a nursing home patient with a short while to live shared with me that she would be glad when her life ended so that she would no longer be a burden to her daughter. We explored those feelings a bit. My sense was her statement was not couched in terms of self-pity or depressed mood, but out of a sense of reality. Her daughter’s life was negatively impacted by her illness and the sooner her life could end the better. She was ready to die she said. In another case, the emotions of a husband erupted when he learned that his wife could no longer care for him at home and the option his wife had was to place him in a facility. His worst fears were realized. He was so great a burden that he was “put away.” How do these two episodes in real life inform a Chaplain’s spiritual caregiving? To the patient? To the caregiver? Herein lies another attribute that sets the hospice chaplaincy apart. The hospice chaplain develops a trusting relationship with the patient and family so these fears can find a place in conversation. And, in finding that place they are not diminished, marginalized, or ignored (perhaps a better word would be ‘missed’) by the attentively listening Chaplain. The Chaplain hears the pain, the wounded-ness, the grief the patient is expressing and applies soothing spiritual counsel to the wound. It takes skilled listening, mature understanding, and wise words to assist these persons through their journey of feeling like a burden.