The "social model" hospice home, an uncommon prototype for hospice care, may have great promise for resolving some future end-of-life issues in the U.S. The number of social model hospices in this country is currently small but growing at a steady pace as communities grapple with the question of how best to provide care for their dying members.
However, the social model hospice home is not a new idea at all: The first social hospices were created during the AIDS epidemic in the 1980s to house AIDS patients as they were nearing the end-of-life and in desperate need of terminal care. Many of these homes were literally private residences with multiple bedrooms where a small number of patients could be cared for and comforted through the dying process.
According to Dr. Mitcheal Metzner, the founder and CEO of Gabriel's House at Anam Cara, these residential hospice homes were largely replaced over time by the current model of mobile hospice agencies that provide medically-focused care in patients' own homes. But Dr. Metzner sees a growing need for community-based social model end-of-life care homes and is opening Gabriel's House in Topanga Canyon to meet that need for Southern California.
Dr. Metzner's social hospice will provide a "home-away-from-home" for patients who cannot or do not wish to die in their own homes. Patient care will be provided by a combination of family members, volunteers and paid caregivers in partnership with medical hospice service providers. Gabriel's House will be able to accommodate six patients in a home-like environment with a variety of holistic services and activities available to both patients and their families.
In reviewing the current and future issues surrounding end-of-life care in the U.S. it appears that this model of community-based social care homes may offer solutions for some of the problems that lie ahead. Let's take a closer look at these issues and how this model might be helpful:
1. Shortage of family caregivers.
According to a study reported by AARP Public Policy Institute there will be a severe shortage of family caregivers as the Baby Boom generation ages and faces the end-of-life. While there are currently seven potential family caregivers for every patient, this ratio is expected to drop to 3:1 by 2050.
Gabriel's House at Anam Cara is already helping with this issue by recruiting and training volunteers who can give relief to family caregivers as part of the care team. In this way the entire community can serve as a source of potential caregivers for future patients and decrease the need for family members to take on the entire burden of care.
2. Shortage of paid caregivers.
In addition, a study published in the Health Affairs journal in June indicates that "at least 2.5 million more long-term care workers will be needed to look after older Americans by 2030."
Along with other social model hospice homes, Gabriel's House is also offering certified training with continuing education credits for professional caregivers for the terminally ill. These training programs will increase the number of workers available to meet the long-term care needs of our society.
3. Need for family respite.
The Institute of Medicine's 2014 report Dying in America points to a current need for respite and support for family caregivers to help avoid burnout and resulting emergency hospitalizations. Social model hospice homes can provide respite care as well as terminal care, allowing for much-needed rest for exhausted caregivers.
4. Need for home renovation for safety and mobility.
The IOM report "Dying in America" also cites a lack of publicly-funded programs for retro-fitting homes for safety features and wheelchair accessibility. Social model hospice homes are already designed to meet safety and mobility standards and can eliminate the need for expensive renovations to family homes.
5. Cultural barriers to hospice care.
In an interview for End-of-Life University, Dr. Donald Schumacher, the President and CEO of the National Hospice and Palliative Care Organization, stated that cultural barriers to hospice care must be addressed in the future. Some of these barriers include a lack of cultural diversity in hospice staffs, mistrust of the healthcare system, and worry about insurance coverage and cost of care.
The community-based social model hospice home has the potential to overcome some of these barriers by utilizing volunteers and caregivers from the patient's own cultural group and neighborhood, by functioning largely outside the health care system, and by eliminating financial concerns through unique funding streams (see #6).
6. Reduction in Medicare payments for hospice and home care.
The IOM report mentioned above indicates that hospice payments from Medicare will be reduced by 11.8 percent over the next decade, which will likely create financial stress for smaller hospices and lead to decreased access to care.
Under the social model of care for the dying there is no federal or state funding because these homes do not function as medical facilities. In many states they are licensed under the Department of Social Services rather than the Department of Health. Social model hospice homes rely on foundations and grants, community fundraising, and contributions from individual donors for funding. They tend to be cost-effective organizations that provide care for free or at low-cost and on a sliding scale.
While there are no perfect solutions to the issues facing end-of-life care in the U.S., the community-based social model seems to offer an important and viable addition to the current system of hospice care. This model encourages communities to take responsibility for the needs of their own citizens and provides an opportunity for creative involvement in end-of-life care for everyone.
In addition, existing houses can be utilized for the social model care homes, eliminating construction costs for new facilities and reducing the barriers to starting such a project. The flexibility of this model and the lack of Medicare regulation allows for adaptation to the unique requirements of each community.
There is hope that the model will be adopted in many towns and cities across the country, as stated by Dr. Metzner:
"Our desire is to create a sustainable social model template that can be replicated and adapted to meet the emotional and spiritual needs of different socio-economic populations in various geographic areas. This would give us the future options of consulting for other organizations, franchising our model, and expanding into other communities."
Dr. Karen Wyatt is a hospice and family physician and the author of the award-winning book "What Really Matters: 7 Lessons for Living from the Stories of the Dying." She is a frequent keynote speaker and radio show guest whose profound teachings have helped many find their way through the difficult times of life. Learn more about her work at www.karenwyattmd.com.