Spiritual Pain at the End of Life

Spiritual Pain at the End of Life
Presented by Mary Ballantyne, RN, CNPN
From Providence Hospice

October 21, 2007

Hospice patients teach us about life, about priorities. Usually family relationships are high on the list.

Medications can break the cycle of physical pain, but have no effect on the terminal illness of the soul. Yet spiritual and physical illness are almost always interrelated.

Physical pain is only one dimension of pain that a patient reports. Spiritual and Emotinal pain is very important to assess and manage at end of life, because it effects the “total” person. People die today the way they have always died, with fears, struggles, and reluctance to leave their loved ones behind, which increases their desire to cling to life and revisit their past. Spiritual pain exacerbates physical pain and can lead to the terminal illness of the soul—hopelessness. Our response to pain is highly subjective.

Spirituality vs. Religion: Spirituality is a connection of the inner self with others and the transcendental being (divine) accompanied by their interactions, and therefore is Whatever gives meaning in life. Religion is a system of organized beliefs and worship which the person practices. There is a need for meaning at the end of life. Religion may offer spiritual resources such as confession, forgiveness, meditation, holy texts, rituals. There is a need to be loved, and to love. Helping others die peacefully entails compassion, living today, and inevitably feeling helpless. (The Stations of the Cross rehearse the stages of dying.)

Spiritual Pain
1. A loss of Identity. Who am I? I cannot do what I used to do, too sick or too disabled.
2. Loss of Relationships: Whom do I support and who supports me? Where are those I took care of? Did I fail them?
3. Lost of Physical self: What am I? I have more to do, for family, friends, volunteer work, yet can’t care for my own needs, often without strength to dress, bathe, etc., including embarrassment.

Identifiers of Spiritual Pain
1. Uncontrolled physical symptoms
2. Loss of hope and meaning
3. Loss of roles in the lives of others, feeling abandoned
4. Unresolved issues, unanswered questions
5. Anger, fear, dread
6. Isolation/Secrets
7. Pattern of dysfunctional coping
No single person can meet all the needs of the dying person. We want to “fix it”, often keeping busy to avoid facing the reality and being helpless. We must give that up.

Can Spiritual Suffering be a Choice: Yes
1. Some may feel the need to suffer and refuse pain medication as this will help them earn their right to eternal paradise.
2. Some may willingly suffer for the sake of others (parents, soldiers)
3. The unique capacity to choose suffering is the true meaning of compassion. We may choose to give though it subtracts something from ourself.
Are we required to choose to suffer?

Keywords that may signal Spiritual Pain: Validate these feelings. “You did the best you could when you were there, with what you had/knew at the time.”
1. Loneliness
2. Separateness
3. Abandonment
4. Despair
5. Fear
6. Guilt
7. Punishment
8. Resentment
9. Blame: Did God choose me for this? Or did I choose it?

Carl Jung: “To cherish such secrets is a spiritual misdemeanor for which nature will visit us with sickness.” Secrets are unresolved situations kept “private”. Forgiveness of self, of others, of God, and acceptance of forgiveness is the only way out. When they cannot be “fixed”, we can only witness the intention.

Difficult Questions
1. Why is God punishing me?
2. What was the meaning of my life?
3. Did I do the things I was meant to do?
4. How will my family manage without me?
5. Will I be remembered?
Putting the questions back to the dying person can be a useful strategy, an opening for conversation/listening session. Let that person lead the way. Maintain an atmosphere conducive to sharing. Show interest and sympathy without editing or judging. Emphasize uplifting points. Some patients connect with others they know who have already passed. They feel “guided”, companioned.

How Hospice Intercedes: follows a holistic model, assessing spiritual pain
1. Exhibit interest and empathy
2. Encourage life review
3. Explore issues of guilt, blame, remorse, and forgiveness
4. Foster hope


5. Listening rather than fixing
6. Involve other disciplines
7. Be emotionally and spiritually present

Volunteers have the ability and opportunity to hear patients’ stories through “Life review”. They are more than a friendly visitor. They enhance the patients’ quality of life.

Intervention for Non-Responsive Patients: Those patients who cannot speak or communicate often DO hear.
1. Give gentle and reassuring touch
2. Observe responses before proceeding with any activity, say what you will be doing
3. Be present, try for eye contact
4. Music
5. Address the patient as though responsive.
6. Keep the door ajar and some light on.

Barriers and Challenges to Effective Interventions:
1. lack of privacy (hospital or home routines that disrupt or disturb)
2. Lack of trust (unknown persons cannot build rapport)
3. Physical pain (intrudes, keep the goal of management)
4. Patient’s belief differ from clinician
5. Clinicain may have person biases

Chaplains See the Spiritual Needs at End of Life as:
1. Meaning and purpose, a reason to continue
2. Forgiveness, finishing business
3. Hope/Creativity, still contributing, leaving a legacy or memorial, a need to go beyond the material and talk out their fears
4. Relatedness/sense of belonging
5. Need to talk it out, revisit grief, disease, etc. (with others not personally involved in that life as relatives and friends are)

Spiritual Growth at the End of Life, and Beyond
1. Increased time for reflection
2. Finding strength in their experiences
3. Family will often seek healing and reconciliation
4. Facing death evokes spiritual questions
5. They are then an example of courage and faith to others
6. They learn to live in the moment, now.

CLOSURE: Dr. Ira Byock offers five things that are needed for closure:
1. Forgive me
2. I forgive you
3. Thank you
4. I love you
5. Good-bye






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