Even here in Dane County, where some of the world's best medical and hospice resources are located, huge disparities in end-of-life care exist between different segments of our population. Too many of our community's most vulnerable citizens are forced to suffer unnecessarily as they die. Often overlooked and unacknowledged, they include those who are experiencing homelessness or housing insecurity, extreme poverty, mental/emotional health issues, substance abuse disorders, and/or social isolation.
Solace Friends, Inc. (Solace) is a newly formed 501C3 non-profit organization working to bridge the existing gap in services by creating a community supported Social Model Hospice Home, where underserved individuals can receive housing and personal attention that nurtures physical comfort, emotional and spiritual wholeness, and individual dignity as they die. Support will be provided by a network of paid staff and volunteer surrogate family caregivers who work collaboratively with clinical professionals from local hospice organizations and other healthcare and social service agencies.
We believe that all people should have access to safe and comfortable environs and to tender, expert caregiving as they are dying. We hope you do too—and your involvement is not only welcome, but very much needed. For more information about how you can help, please click here.
Surprisingly, there is no official process in place that collects data on the numbers, causes, locations, of deaths of homeless individuals in Dane County. As a result, it is impossible to know exactly how many of our residents die without suitable shelter or caregiver support each year. However, responses from informal surveys we’ve sent out to the nearly 60 member agencies of the Homeless Services Consortium of Dane County indicate the number is significant and climbing. Those we interviewed in both surveys expressed concern that end-of-life care services readily available to the majority of our citizens are not always accessible to, or appropriate for, the people we want to help. Besides those who die out on the streets, countless more die in places that are ill-equipped to address the unique end-of-life care needs of our most vulnerable and disenfranchised members of our community. In the most recent survey, half of those responding said that end-of-life care for our target population is inadequate.
Additional Research (links below) done by John Song, MD, MPH, MAT, provides important insight into what people experiencing homelessness face at the end of life.
Solace's planning committee members also held candid conversations about end-of-life care issues with people experiencing homelessness in the Madison area who were grappling with serious chronic or terminal illnesses. Some expected to live only a few more months. When asked how they would manage as they neared death, here is how a few of them responded:
One man with a history of throat cancer had opted out of further testing to determine if his cancer had spread, admitting that he wouldn't know how to cope with bad news. He hoped to move to Oregon to seek a legal physician-assisted death there.
One man with a history of throat cancer had opted out of further testing to determine if his cancer had spread, admitting that he wouldn't know how to cope with bad news. He hoped to move to Oregon to seek a legal physicianassisted death there.
A middle-aged man who had learned there was no further treatment for his blood cancer said, "I have no place to live. I have no people. I'm going to take care of it myself when it starts getting bad" (i.e. suggesting he would end his own life by suicide).
A middle-aged man who had learned there was no further treatment for his blood cancer said, "I have no place to live. I have no people. I'm going to take care of it myself when it starts getting bad" (i.e. suggesting he would end his own life by suicide).
A third man refused to believe that there could be any help for him as he neared death, citing prior negative experiences with the health care system. He expected to die alone in the same spot where he was interviewed, on the sidewalk within view of the state capitol.
A third man refused to believe that there could be any help for him as he neared death, citing prior negative experiences with the health care system. He expected to die alone in the same spot where he was interviewed, on the sidewalk within view of the state capitol.
Solace's goal is to create and maintain a community supported home for end-of-life care. Our model is based on a concept supported by The Omega Home Network, a national membership organization that promotes the development and expansion of community homes for dying people. Social model hospice homes are:
It should be noted that Solace is not, and will not in itself, be licensed as a hospice provider. Solace staff and volunteers supplement, but do not replace, clinical care (e.g. symptom management, medications, equipment) which will be provided by area hospice organizations.
This concept is relatively new, and speaks to the need for non-medicalized, family-like care for those who are dying. Approximately 42 community supported social model hospice homes are currently in operation in the United States, with at least 19 more in development. Of these, only a few focus on those experiencing homelessness. Solace Home would be the first of its kind in Wisconsin.
