Caring for the Human Spirit in the Hospice Setting
When it comes to the care of the terminally ill, there can be any number of spiritual needs. When those needs are not met, a dying person and family can suffer. When those needs are met, there can be a relative sense of well-being and joy in celebrating the patient and family’s hope and significance. Often, the most pressing needs have to do with fear, hope and the need for love.
Nicole* was dominated by fear of dying on a family member’s birthday or major holiday. She didn’t want to ruin that day for her loved-ones.
Hantz dreaded the process of dying. He had seen others endure lengthy declines and was well aware of the distress that he was already starting to experience in the final stage of his cancer. Hantz and I chuckled at comedian Woody Allen’s observation that he didn’t mind the thought of dying. Allen did not, however, want to be there when it happened.
Irene asked with a weak, trembling voice, “How do I know what happens after I die?” She was fretful about what came next for her soul.
Frank, because of the shame of a guilty conscience, was tormented by the thought of giving account to a God he perceived as angry.
Brett was distressed by the fear of dying alone.
Anne had a desperate feeling that her life on earth didn’t matter.
Howard fought death until his final breath because his love for Maxine, his wife of sixty years, drove him to stay alive to care for her. Howard worried that Maxine would not be cared for in her later years.
All these folks had life dominating fear in their final days. The fear caused an internal distress that manifested in an anxious countenance and other emotional, mental and physical symptoms.
Spiritual care at Wings of Hope Hospice involves the nurture of a person at the deepest intrapersonal level. In this article, I go back and forth between using the personal pronoun “I” and the plural pronoun “we” because I realize all of us on the caregiving team can touch someone at a deep level. Whether the caregiver is a family member, friend, pastor, chaplain, nurse, bereavement counselor, social worker, doctor, bath aid or volunteer, spiritual care often addresses the deepest fears and sometimes therefore, the deepest suffering of an individual.
When caregivers perceive that a patient or loved-one is anxious, we can ask, “Is there anything particularly upsetting or frightening to you right now?” Our care is then demonstrated by listening and empathizing: “Can you tell me more about what you are experiencing?” Often, when a frightened person is able to express the fear, that which was kept in shadows is brought to the light. The threat seems less ominous. Truly, a burden shared is often half as heavy.
The caregiver can address fears in other practical and helpful ways. Nicole could be helped to understand that, while there would be some association of sadness, her dying on a loved-one’s birthday would not significantly alter the course of her loved-one’s life. Hantz could be educated about the support and comfort he would receive during the dying process in the Wings of Hope Hospice program. A spiritual caregiver could be found to address Irene’s questions about God and the hereafter. Frank could find relief from his shame and guilt under the gentle guidance of a spiritual care counselor.
Hospice caregivers and family members could be scheduled in such a way to relieve Brett’s fear of dying alone. Howard, a deeply religious man, could see his anxiety minimized by being reminded that the same God who had been faithful to him would remain faithful to his wife Maxine after he was gone. The hospice team has become skillful in recognizing and minimizing the spiritual suffering of the dying as they progress through their final days. In fact, all fears can be reduced, in large measure, through the exercise of hope.
Spirituality has to do with what gives us hope. Patients and families can sometimes lose sight of their source of hope as they grapple with change, symptoms of the patient’s illness, and the pain of impending separation of intimate relationships.
There is, however, satisfaction in journeying with a person who readjusts her or his focus in anticipation of a desirable future. This expectation is not just an optimistic attitude, although an optimistic attitude often results from the anticipation of a desired outcome. When that expectation moves from a faint wish or a dream to a sure confidence of good in the future, the patient and loved-ones can progress through their final days together in relative peace. The end of life can actually be one of the most meaningful and gratifying segments of life.
When a patient/family is experiencing loss, I will sometimes ask, “So what has been your source of strength in previous challenges over the years?” With a little work, people can usually come to an awareness of where their hope has come from during other difficulties and transitions in life.
Sometimes, people need to readjust their focus from their past. Their troubled history has unfortunately left them in despair. Some may need to focus on relatively simple goals that can be realistically attained: A death with reduced pain and increased companionship; a trip to a favorite place in nature; or a reunion with an estranged family member. When I asked one patient about his end-of-life goals, he replied that he hoped to keep his sense of humor. (He did, by the way).
Others hope to have the significance of their lives affirmed. While every person has an innate value, most of us want to know we made a difference during our lifetime; that our life on earth mattered. Anne, (mentioned earlier), was essentially saying, “Help affirm the significance and worth of my life.” We retrieved some photo albums from her dusty shelves. By verbally and emotionally processing her memories with an active listener, she was able to see her value as a good mother and grandmother.
For some, the confident expectation of a good future includes a deeper relationship with God and life in a far better place than one experiences now. Some want to be led in an understanding of how to have a relationship with God and eternal life. Some simply want to have their faith affirmed.
In hospice spiritual care, the veil between this life and the life beyond often becomes very thin. Sometimes, folks see loved-ones who have passed through that veil. Sometimes the dying have visions of a heavenly place. Families commonly perceive special indications of divine love in the appearance of a particular kind of bird or some other sign that reaffirms their belief that God knows and cares. We can be in the moment with patients and families when they experience special reassurances. By reaffirming their faith, we can be a part of bringing hope and courage that replaces fear.
But there is a third need:
A woman cordially came to me after a graveside service recently and said, “I think every person deserves to be treated pleasantly and lovingly in their final days.” She said this, by the way, as she was telling me she wanted to volunteer at our Wings Home, a four-bed residence in Allegan, Michigan, which serves people at the end of life.
She understood spiritual care’s underlying premise that people have the need and right to be met with respect and tenderness as they face the meaning of their life and death. Although there is a time to address theological issues in spiritual care, the capacity to care for the human spirit involves touching one another at a level that is deeper than ideological or doctrinal differences.
Love is communicated in different ways through various hospice disciplines. Patients experience love through the medical care that minimizes pain, the personal care for bodily needs, the resources that social workers bring, the comfort that bereavement counselors provide and the various ways that volunteers serve. One of the most powerful experiences of love that a patient and family have at the end of life is to be confident that they are heard and understood. Caregivers can serve them by helping to validate what they are sensing, even if only by our active listening.
Our warm and humble presence invites people to open up and share what they consider the significance of their existence and their source of hope. In loving the human spirit in hospice, attention is on the one being cared for. The caregiver’s perspective is usually not as important as the patient’s or family member’s perspective. That I understand what the patient or loved-one is communicating is my primary concern. I must sincerely care about what is important to them. When I, as a spiritual caregiver, communicate respect, commitment, and care for an individual in a way that lets them know they are loved, they can be reassured they can safely share the deeper matters of their heart.
When the time is right in helping people address their own needs, we can ask, “What do you think your most significant achievements have been?” “Of what are you most proud?” “Who are those who are particularly meaningful to you, either presently living or already passed away?” “What are some of your favorite activities in the outdoors?” “Would you like to tell me about your faith?”
Caring for the human spirit helps people realize they are loved. Their fear is reduced and their hope is increased.
Many are the times our team has observed our work resulting in a patient’s and family’s distress being replaced by a peaceful demeanor. Psychotropic and pain medications can be reduced, patients can be more alert, and meaningful conversation can take place.
When fears are addressed, hope realized and love felt, the period before death can be an opportunity for the dying and their families to experience the blessings of achievement, contentment, wholeness and even joy like they may never have before. As one dying friend said to me, “I have never been more alive spiritually than I am right now.”
*All names in this blog are pseudonyms.
Author: Greg Carlson, Spiritual Care Coordinator