Written by Janet M. White
June - July 2008
'Hospice is about living, not dying'
Frequently, as a hospice chaplain, I am asked, "Why not a different ministry? Why that one?"
It is a complicated question with a simple answer. My soul is passionate about hospice. It is a privilege to partner with patients and families during this tender time of sacred discovery.
As an interfaith hospice chaplain, I have the opportunity to work with the full breadth of our world's religions: Buddhism, Christianity, Confucianism, Hinduism, Islam, Judaism and Taoism, including many major and subtle variations. I also work with agnostic people and atheists (who are spiritual in their own right, since they have invested extraordinary thought into "not being religious.") When people make the hospice decision, and qualify for it, they are choosing to live out the rest of their lives with dignity. People are freed from enduring further medical procedures that are not arresting the disease. Medical intervention for symptom management takes the front seat. The renewed focus is on acceptance, care, comfort, dignity and a sense of peacefulness that stems from the very core of their being - their soul.
I often tell patients that our body is the "apartment" for our soul. Although our physical body is failing, our soul may thrive. The language of our soul is meaning. We may re-discover our soul when a poor medical prognosis awakens a need for deeper meaning in us. Spirituality, or life meaning-making, becomes front and center at perhaps a deeper level than before.
In hospice, the patient is back in charge with the support of loved ones and the hospice interdisciplinary team: physicians, RNs, home health aids, social workers and chaplains. Team members travel to the patients' homes, wherever "home" may be: private residence, assisted living, skilled nursing facility or hospital.
Hospice is about living, not dying. We focus on the distinction between curing and healing. While curing eliminates disease, healing focuses on wholeness and peacefulness as we journey toward the end of life. Curative measures may see death as failure. Healing includes death as one of the sacred, natural outcomes of life.
We connect with our vulnerability when we identify our needs for wholeness. Our journey may include releasing old hurts through forgiveness of ourselves and others. We recognize that forgiveness is a gift to ourselves. It does not suggest that we are compromising our dignity or our sense of right or wrong. Rather, we are claiming peacefulness for ourselves - setting our soul free from spiritual unrest.
Re-claiming wellness includes embracing freedom from our devastating medical diagnoses. We own our terminal diagnosis, while at the same time, we claim healing as we work toward our sense of peacefulness. In this process we may begin to deepen and transform our understanding of hope.
Hospice engages hope. It does not let go of hope. I believe God is our infinite, self-renewing source of hope. Our hope may transform as our healing deepens. Our hope may be to have time alone with each of our loved ones. It may be to reconcile a relationship that fell off the track somewhere along the way in our lives. We may have come to realize that it is a relationship we hope to rekindle as part of healing.
Our journey toward peacefulness may involve anger along the way. But is it really anger. It certainly sounds like anger! It may be anger. Anger is easier for us to access than our sadness. It may be profound sadness.
I often sit with patients or family members in silence. I think of it as "relational silence" because there is an awful lot going on. It isn't being articulated, but it is voiced through sacred silence. "Be still and know that I am God!" (Psalm 46: 10a).
When we release our loved one to go, it is an expression of wellness or healing. As a loved one, we face anticipatory grief during this time. It is profoundly sad to be left behind. Perhaps the deepest expression of love is to give our loved one "permission" to go when she or he is ready.
Life is forever altered when a loved one passes on. We learn to carry our grief as part of who we are. We cherish the beautiful gifts that our departed loved ones have given us - gifts of who they were and how they loved us. As people who have been left behind, we own those beloved, intangible gifts forever. In recognition of this trying time, hospice follows patients, families and loved ones for 13 months following death. Support groups may be available indefinitely.
I understand hospice as a gift we give ourselves once medical treatment modalities are no longer helpful. A peaceful passing with the hospice patient is a drawing in and eventual surrender to God. It is natural. It is sacred. What a deep privilege it is to serve in this resilient ministry of life.
The Rev. Janet M. White, affiliated clergy with Trinitarian Congregational UCC in Concord, Mass., is a staff hospice chaplain for All Care Hospice, a subsidiary of Health Management Services, Inc., in Lynn, Mass.
What is hospice?
Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to meet a patient's needs and wishes.
Hospice focuses on caring, not curing. In most cases, care is provided in the patient's home.
What services are typically offered?
• An interdisciplinary care team works in concert to:
• Manage the patient's pain and symptoms;
• Assist the patient with the emotional and psychosocial and spiritual aspects of dying;
• Provide needed drugs, medical supplies, and equipment;
• Coach the family on how to care for the patient;
• Deliver special services like speech and physical therapy when needed.
• Make short-term inpatient care available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time.
• Provides bereavement care and counseling to surviving family and friends.
Source: National Hospice and Palliative Care Organization