Personal Experience Brought Home the Need for Hospice to Professional Hospice Administrator

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Hospice was created to provide holistic approach at end of life meeting the physical, emotional and spiritual needs of both the patient and family. Multi-disciplinary teams of physicians, nurses, social workers, chaplains, music therapists, massage therapists, bereavement counselors, and volunteers offer compassionate care for people facing end of life. Hospice involves a team approach to medical care, pain management, and emotional and spiritual support personally tailored to a patient's needs. Support is provided to the patient's loved ones as well.

Developed through a partnership between Augustana Care and Mount Olivet Careview Home, Grace Hospice recognizes every person deserves to live out his or her life with respect and dignity, free of pain and in an environment which promotes quality of life. Grace Hospice also works to bring hospice care back to its roots, which include a focus on exceptional volunteers.

In 2014, Grace Hospice Executive Director Sarah Van Winkle was faced with a dilemma she had anticipated, but not expected: her father was dying. Although she’d been in the hospice profession many years and thought she would be prepared, she was not. Sarah shares her personal experience with hospice as well as what she learned:

My experience taught me something I had long suspected but never confirmed: the realization that making decisions about medical care during a crisis is one of the most stressful things any of us can endure.

After a few months passed, I began thinking about what I wish I had done differently. One step I wish I had taken was to talk with siblings about end of life care earlier (as opposed to the last few days of life).

In fact, the final days of life are often far too chaotic and stressful to allow time for reflection. Yet, decisions over the kind of care one receives are best discussed when people have time to process them. Shouldn’t we be giving people more control over their decisions, rather than less?

Families who begin using hospice several months before the end of life tell me it has provided much-needed relief for everyone involved. Hospice can give people the time and space they need to enjoy quality time with family members, instead of last-minute encounters in emergency rooms or hospitals. In addition, hospice can offer relief from financial stress toward the end of life, as it is a benefit of Medicare. 

When I ask colleagues about the benefits of starting hospice earlier, many say when they have time to get to know someone, it’s much easier to find out his or her preferences. That can allow nurses and caregivers to personalize care more effectively. For example, a colleague recently told me about a patient who said he was a singer and enjoyed the times she sang to him. “I would never have known that if I’d met him just a day or two before he died,” she pointed out.

Asking someone about what they want specifically when facing the end of life also allows caregivers to advocate for their needs. Some people may wish to have their entire family present during their last days, while others prefer only one person to be in the room with them. A caregiver can explain these preferences to relatives or friends beforehand, so misunderstandings are avoided later. I believe this is important because I know how difficult it is for most people to verbalize their wishes near the end.

In addition, a longer period of hospice allows more time for spiritual care, whatever that might be. It could include prayers or simply being a caring, listening presence for someone—which can provide a world of difference for both families and individuals.

Another important aspect of hospice is connected to the dedicated volunteers who make sure there is always someone there for those facing the end of life. As the director of a non-profit hospice, I work to bring this service back to its roots, which are rich in volunteers. They are often perceived as friends or peers, which can make them easier to talk to than family members—and that’s important if we want people to be comfortable and have choices. Beginning hospice earlier allows time for a relationship with a volunteer to blossom.

My experience with my father brought home the many reasons why I work in the hospice field. I am honored to be part of the journeys of those facing the end of life—and to work with staff members who see their work as a calling. My years working in hospice not only informed the journey I was able to take with my father; it made me wish more people would consider beginning hospice six months (or more) before death. There is so much that hospice can give us—including the gift of time to those who need it most.

Sarah Van Winkle has over 25 years experience as a registered nurse in public health and community-based programs and extensive experience in hospice/palliative care. She is now the executive director of hospice and palliative care at Grace Hospice, which was developed through a partnership between Augustana Care and Mount Olivet Careview Home. Learn more at www.GraceCaring.org.