Residential End of Life Services

INTRODUCTION

Despite the fact that most people would prefer to receive their end of life care in their own homes, not everyone has the support system or resources to facilitate this desire. Improving the quality of end of life care entails addressing care wherever a person resides. The Commission has targeted two settings, assisted living and skilled nursing facilities, for recommendations because they are both part of the state’s current infrastructure that service a significant number of people.

In addition, the Commission recognizes the added value to the community of the five licensed hospice residential facilities located in the state. Residential hospice programs are community-based facilities that provide hospice care in a home-like setting of up to twelve beds. Residential hospice care offers symptom management, comprehensive family support, spiritual care, bereavement follow-up, and volunteer services.

Charges for residential hospice services range from about $200 to $300 per day. Costs to the facility are typically even higher, which means the difference must be covered by fundraising. Medicare, Medicaid, and most private insurers in Minnesota will not cover this cost. Residential hospice programs are currently available only to a relatively small number of Minnesotans, and the number of beds available is limited by the number of people who can afford this care.

Medicare and Medicaid funds for residential care at the end of life may only be spent in certified nursing facilities. Public funds to support housing for the elderly and disabled is also available through Federal and local subsidized housing programs. Residential care to those who are near the end of life is provided (both subsidized and at market rate) in apartment buildings and other congregate housing for seniors, also known as assisted living.

The Commission seeks to improve residential care at the end of life for all Minnesotans, including those who cannot afford residential hospice. As described above, the alternative settings are assisted living programs and skilled nursing facilities.

In Minnesota, "assisted living" or "housing with services" is more of a service concept than an actual place. "Housing with services" encompasses a variety of senior residential settings that offer certain types of supportive services or health-related services for a fee (SAIL Project, 1999). More and more of our aging population are looking at assisted living as an alternative to nursing home residence. The demand and use of assisted living services has increased dramatically in the past five years. In 1997 Minnesota had 13,000 units. In 1999 the number had grown to 27,000. Those who work within assisted living recognize it as a rapidly-growing and evolving housing and service industry.

Minnesota has 621 registered "housing with services" facilities. Generally, residents live in their own apartments but have services such as meals, homemaking, laundry, and personal assistance available to them. Services and cost vary from facility to facility.

Room and board costs for assisted living are generally paid privately by the resident (just as rent, mortgage and food would be paid privately for people living in their own homes). Residents with limited funds can qualify for some public financial assistance under the elderly waiver or alternative care grant.

Commission discussions as well as interviews with hospice providers, assisted living care providers, and consumers reveal the need to integrate end of life care within this rapidly-growing and evolving industry. As a nurse who works in an assisted living facility stated: "We are seeing frailer residents with more and more complex needs."

Residents in assisted living facilities are often there because of a combination of declining health and the absence of an informal caregiver. The desire to honor residents’ wishes to stay in their apartments and the increasing complexity of care can be problematic. Barriers to good care include late identification of patients who could benefit from hospice services, confusion over payment for care when hospice is involved, and fragmented communication between hospice and assisted living health care providers.

Over 38% of those who die in Minnesota die in a skilled nursing facility. In 1999, 45% of discharges from skilled nursing facilities were due to death (www.health.state.mn.us, 2000). While many people who are admitted die, recovery and restoration are the focuses in skilled nursing facilities.

Skilled nursing facility costs are paid either by Medicare, Medicaid or the individual. owever, Medicare coverage is limited. (For more information on the qualifying conditions for Medicare coverage of skilled nursing facility care see the Medicare web site at http://www.medicare.gov or call (800) M-E-D-I-C-A-R-E. In Minnesota, call (800) 333-2433 to speak to a local health insurance counselor.)

Skilled nursing facilities often do not have adequate funding to provide comprehensive end of life care. These facilities will often work with hospice programs to enhance end of life care for their patients. Recent research has shown that patients receiving hospice services within a skilled nursing facility receive better pain management than those receiving standard care. (Zerzan, Stearns, & Hanson, 2000).

In addition, workforce issues result in barriers to excellent end of life care. Because many skilled nursing facilities have large staff turnover, they are unable to maintain a workforce that is educated and skilled in caring for those who are dying.

Rural areas face particularly challenging issues in terms of residential end of life care. A combination of a limited skilled workforce, a dwindling number of informal caregivers, and a limited number of assisted living and skilled nursing facilities magnify the problem.

RECOMMENDATIONS AND STRATEGIESPublic and private policy makers will promote and implement improvements in the area of residential end of life services:

• Pursue funding from new or reallocated resources to study removal of reimbursement and other barriers to hospice and end of life services within assisted living and skilled nursing facilities. Funding studies would:

  • Address interdisciplinary care needs of patients and residents

  • Address staff education needs regarding the Five Guiding Principles including advance care planning, pain and symptom management and grief

• Promote hospice and long-term care partnerships to explore alternative and innovative residential programs for end of life care. This might include:

  • Partnerships to create hospice beds in skilled nursing facilities

  • Partnerships with hospice and the community to provide volunteers for patients and residents

  • Partnerships to provide training in skills needed to implement the Five Guiding Principles

High quality end of life services should be available to all Minnesotans no matter where they reside. The Commission’s recommendations support exploring creative ways to ensure this type of care within our existing system.