Annals of Long Term Care

Palliative care, as defined by the World Health Organization, is “an approach to care that improves the quality of life of patients and their families facing the problems associated with life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment of pain and other problems, physical, psychosocial and spiritual.” Nursing homes (NHs) are the site of death for 40% of Americans, and many NH residents have life-threatening illnesses associated with physical, psychosocial, and spiritual pain. Clearly, palliative care can play an important role in the prevention and relief of suffering among these residents.

The Program
The Making Advance Planning a Priority (MAPP) Care Program was designed to assist NH staff clarify resident care goals and identify NH residents who may benefit from palliative and/or hospice care. This program consists of: (1) establishing the palliative care goals of the facility; (2) articulating the care goals of residents; (3) understanding the goals of the clinicians; (4) collaborating with palliative care and hospice programs; and (5) empowering staff to provide palliative care.¹

Establishing Palliative Care Goals of the Facility
Facility goals can be based on an assessment of the current advance care planning and palliative care practices in the facility. A facility needs assessment can be accomplished by interviews with staff members who provide end-of-life care to residents, performing chart reviews for residents who have died, and conducting ongoing case studies to review deaths as they occur in the facility.

A needs assessment must include the observations of those at the bedside. Individual interviews or focus groups can be used with an aim of discovering how the staff perceives end-of-life care practices in the facility. Interview questions may include:

• Will you tell me about your experiences with caring for residents as they begin to decline?

• Do you remember the last resident that died on your floor?

• Did you know he/she was dying?

• Do you think the resident knew he/she was dying?

• Can you describe your role in caring for residents who are declining or actively dying?

• How would you orient a new staff member to the situation of a declining resident? What would you tell that individual who has never cared for a dying person before?

• What is the most important thing you do for residents as they experience distressing symptoms or are actively dying?

• Are there things you wish you knew how to do better or had more time to do for residents who are experiencing distressing symptoms or actively dying?

Chart review for residents who have recently died can also be used to discover the most salient needs of the facility with regard to palliative care. The domains to examine in the chart review may include:

• Preparation − Was the death anticipated?
• Advance Care Planning − Did the resident have an advance directive in place? Did the directive(s) guide the approach to care at the end of this resident’s life? Did the patient die following hospitalization?
• Pain and symptom management − Were pain and other distressing symptoms relieved in a timely manner?
• Spirituality – Was a spiritual assessment performed? Did the resident receive requested spiritual support?
• Bereavement – Did family members receive counseling regarding the availability of bereavement support? Were staff members offered bereavement support?
• Psychosocial – Did the patient die with family, friends, volunteers, and/or staff at the bedside?
• Family Satisfaction – Was a post-death family interview performed?²

From this needs assessment, the facility can prioritize goals and select objective outcome measures. Importantly, the facility should select conservative goals and easily assessed outcome measures.