Hospice can be a tremendously comforting and transforming presence in a terminally ill person’s life — and in the lives of those who accompany them on the journey. But sometimes misperceptions about the “H” word — its role and purpose — may delay, or even prevent, a person and their loved ones from experiencing its many benefits.
The positive news: health care providers can play an important role in educating patients and families about hospice. Dispelling myths is key. “Unfortunately, some people believe accepting hospice means giving up,” says Greg Volpitto, Chaplain Crossroads Hospice, St. Louis. “The truth is, the focus of hospice is helping an individual live — and to live well.” Others may fear a loss of control and worry their individual care choices no longer matter. Some people believe hospice is only appropriate when death is imminent or hospice care hastens death. These are a few areas where a guided, compassionate conversation can help a patient make an informed hospice choice. Such an exchange is an important stepping-off point for a patient to experience the uplifting feelings of hope, which is the core focus of hospice.
Hospice Equals Choices, Hope
The beauty of hospice is that it delivers choice and encouragement to patients and loved ones. “Hope is at the heart of it all,” affirms Sarah Haupt, Emotional Support Team Leader in Oklahoma City. “The fear of death is the most universally recognized fear. Hospice offers the assurance that people don’t need to go through this journey alone. They don’t have to suffer. They needn’t be in pain,” she says. Pain control is important and hospice delivers on this basic need. “When pain is controlled, patients are better able to handle the emotional tasks that accompany the end-of-life transition, such as saying goodbyes, repairing relationships, and finding acceptance and peace. In these things lies hope.”
Volpitto agrees. “Hospice means people — both patient and loved ones — will be supported and cared for…wishes will be communicated, validated, and met…there will be positive experiences, emotional expression, resolutions, and reconciliation where needed. Hope is a perspective, and hospice supports and delivers upon this empowering attitude,” he says.
Empowering patients to have choices is also an important part of hospice. “When patients are asked about their goals for living out the rest of their lives, this tends to elevate their state of hopefulness,” says Haupt.
Positive experiences are made manifest through hospice in many ways. As an example, one independent woman who was no longer able to do things for herself and others had succumbed to a sense of hopelessness. She felt angry towards God and her disease. Through her hospice experience, however, these feelings of anger, fear, and loss of hope were validated. She was encouraged to freely express them in the hospice setting.
Further, participation in the Gift of a Day program — a helicopter ride which the woman shared with her brother — enabled the two to begin to repair their fractured, tension-filled relationship. The siblings experienced restoration and healing and both became filled with a sense of acceptance. Through hospice, the pair moved from expecting discouragement, tension, and frustration to experiencing happiness, peace, and meaningful moments together. This is the type of hopeful realization the hospice journey can bring to patients and families.
Bringing Hope to the Hospice Conversation
Serving in the role of patient advocate, health care providers are essential to opening the door to the hospice conversation, and delivering that all-important message of hope. When approached with compassionate care, the “H-word” conversation can, in fact, be productive and reassuring, helping to replace myths with the powerful benefits of the life-affirming hospice experience.
“Pulling up a chair, looking a patient in the eyes, and asking the person what they want to have happen in their remaining days — these are extremely empowering acts,” explains Haupt. She and Volpitto agree in advising health care providers to approach the topic by asking, listening, and validating the person — and their loved ones — in their emotional struggles. The focus is on establishing trust using compassion and ultimately on the patient’s individual goals. “Let the person take the lead and he or she will tell you what they want, what they value. What they say will more-than-likely lead to hospice as the right choice,” explains Volpitto.
Hospice offers the possibility of living well during the final season of life. When the possibility of hope is embraced, the experiences can be extremely rewarding for all involved — patient, family, hospice staff, and health care provider.
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