By Sally Hill Jones, PhD, LCSW
Cindy, an experienced hospice professional, approached me one Monday morning, saying, “I think I’m losing it. Just the thought of seeing my patients today is too much.” She then described taking repeated showers but feeling that she still had the “smell of death” on her afterward. There had been an unusual number of deaths during her weekend on call, and as she named her patients, she began to cry. We devised a plan to begin her emotional processing that included taking the day off, journaling, talking to others she trusts, and saying good-bye to her patients.
Service to individuals at the end of life and their families is an experience rich with meaning. Some important tasks can be accomplished only at life’s end, providing the opportunity for life review, healing, and coming to terms with one’s legacy. It is a time of potentially profound emotions and spiritual connections, letting go of the physical self and embracing the intangible inheritance left behind.
To be involved professionally at this crucial time is deeply rewarding and yet demanding. Hospice staff regularly experience a wide range of powerful emotions, the mystical space between the physical and spiritual worlds, and the reality of loss and death. End-of-life experiences range from inspiring, graceful processes to difficult, complex situations with layers of long-standing problems, few resources, and the potential for abuse or suicide. Given the scope and intensity of hospice work, thoughtful, intentional focus on self-care is necessary for hospice professionals to remain effective.
Maturing and Maintaining Motivation
Many feel called to hospice work because of their personal experiences with the end of life. Some want to give the valuable care that hospice provided for family members, friends, or clients and patients in facilities where they worked. My 80-year-old father existed in a persistent vegetative state for a year before my family realized we had options that would allow him to die naturally. I wanted to give people the knowledge I didn’t receive. Most professionals enter hospice work envisioning the ideal death, which often includes the healing of relationships, resolution of regrets, peaceful and pain-free death for clients, and manageable grief for families. When reality falls short of the ideal and goals are unattainable or different from those of clients, what happens to motivation?
Early in my hospice career, I assisted Ms. Stevens, a 76-year-old woman who had moved in with her daughter, son-in-law, and four grandchildren upon learning that she had terminal cancer. Although the mother-daughter relationship had been difficult with long periods of estrangement, the daughter wanted to do right by her mother at this crucial time.
Ms. Stevens’ demanding and emotionally harsh behavior proved to be a challenge, and it gradually became clear that she had a long-standing untreated mental illness. After the daughter threatened to end the relationship, the family expressed strong resentment about the intrusion in their lives, and Ms. Stevens was psychiatrically hospitalized, my initial goal shifted to a more realistic one of helping this family get through the ordeal with as little damage as possible.
Ms. Stevens died fairly peacefully, and her daughter began the important process of grieving what her mother could not give her. After the funeral service, I observed Ms. Stevens’ 5-year-old grandson standing by the open casket, peering at his grandmother’s body. Ms. Stevens was fond of this grandson and treated him well, unlike other family members. So I knelt by the boy and tenderly said, “Are you going to miss her?” He turned to me in amazement and said, “Oh, no, I’m glad she’s gone. She was mean.” I realized I had a lot to learn about the countless ways people experience death.
Discovering Hospice Realities
After a few such experiences, professionals are stretched to revise ideals and broaden definitions of what it means to help the terminally ill. Working within the broad spectrum of end-of-life experiences, hospice staff may, for example, come to revel in the tender care a husband gives his wife of 60 years. They may discover a unique insight into the pride of the woman who chooses to live in substandard housing conditions or endure rather than medicate her cancer pain. Or they may even be called to take action to protect an 82-year-old man from his abusive grandson.
Rigidly holding on to original ideals engenders frustration, self-doubt, and burnout, while giving up on professionals who experience such reactions leaves them disoriented, discouraged, and possibly destined to leave hospice work. Alternatively, a balance exists between remaining open to opportunities to enable aspects of the “good death” while also respecting and even valuing the many pathways people find through death. This means encountering hospice clients with open and curious minds, developing skills to delve into reasons underlying their choices, revising goals, valuing small successes, and becoming experts at tapping into what sustains them.
Hospice professionals must also develop ways to maintain motivation in the face of obstacles to the good death, such as inadequate resources, ageism, patients referred too late for needed services, long-standing complicated situations, and being the objects of displaced anger and guilt. Resilience develops by persisting, advocating, and finding hidden strengths and successes in your clients and in yourself. Vital supervisor and peer support counter tendencies to feel inadequate. Additionally, being fully present with patients offers a powerful ability to cultivate well-being. Hospice professionals can provide valuable healing or peace to clients by being keenly attuned and present in brief interventions or even nonverbal connections. Furthermore, they need to advocate for clients with other professionals and family members around self-determination and competency issues, especially when clients choose not to complete do not resuscitate orders or advance directives. Training and role plays assist hospice professionals to deal effectively with these issues.
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