Supportive Voice Vol. 11 No. 2 Summer 2006
by Melinda Lee, MD
Dr. Lee is medical director, Providence ElderPlace, Portland, OR. She can be reached at melinda.lee@providence.org
The Program of All-Inclusive Care for the Elderly (PACE) is a unique model of care delivery for frail elders who would otherwise require nursing home placement. PACE is recognized as a model of excellent geriatric care for our most vulnerable older citizens. A less wellknown fact is that PACE is also a unique model for providing end-of-lifecare. This article will describe the supportive care model and outcomes of care from one PACE program, Providence ElderPlace in Portland, Oregon. The PACE model is one of the options available to Catholic health systems seeking to improve care for people in the final stages of their lives.
PACE grew out of a visionary experiment at On Lok in San Francisco in 1971. There are currently 32 programs across the United States. PACE integrates care delivery, and financing to enhance quality of life, autonomy, dignity, and respect for frail elders and to enable them to live in the community as long as medically and socially feasible. Participants must be eligible for Medicare (over 65 or disabled) and Medicaid, meet Medicaid criteria for nursing home placement, and be deemed safe to remain in a community- based setting (not a nursing home) with the support of PACE. Once a participant chooses to enroll, the PACE program receives monthly capitated payments from Medicare and Medicaid, and provides comprehensive, interdisciplinary care across the health care continuum. This includes medical, nursing, rehabilitation, and nutrition services, medications, medical equipment and transportation, day center visits, activities, and personal care. The PACE team provides care to enrolled participants in PACE centers (combined adult day centers and clinics), in the participants’ homes, in hospitals, and in nursing homes.
The Providence Health System founded ElderPlace in 1991 with support from the Robert Wood Johnson Foundation as one of 12 “replication” sites based on the On Lok experience. ElderPlace currently serves 700 participants and operates 5 health and social centers in Portland. Our interdisciplinary teams include physicians, nurse practitioners, clinic and home care nurses, social workers, physical and occupational therapists, recreation therapists, chaplains, clinical pharmacists, drivers, certified nursing assistants, and home care aides.
ElderPlace participants range in age from 55-100, with a mean age of 80 years. Seventy-five percent are women, 16% are married, and 89% are white. African-Americans comprise 8% of the participants, mirroring the demographic profile of the Portland community. Most participants (48%) live in residential care or assisted living facilities. Another 41% of participants live in adult foster homes, and 9% live in their own homes either alone or with others. Nursing home stays are usually short-term for PACE participants, but some may eventually require placement in an intermediate care facility. Currently 1% of ElderPlace participants reside in nursing homes.
Our average ElderPlace participant has 14 diagnoses (including geriatric syndromes such as falls, incontinence, impaired hearing/vision, and constipation) and takes 13 medications, including both prescriptions and over-the-counter products. Most participants need assistance with one or more activities of daily living, such as bathing (85%), dressing (67%), grooming (63%), toileting (85%) and feeding (39%).
ElderPlace continues to provide comprehensive health services and personal care for all participants until they die or disenroll (<1%). On average, ElderPlace cares for participants for 2.9 years, providing a seamless transition to end-of-life care for approximately 125 participants per year. In 1997, ElderPlace began to monitor advance care planning as a quality indicator. Within the first quarter of enrollment, we make it a priority to help those participants who are capable of appointing a Durable Power of Attorney for Health Care (DPAHC) to complete the forms. Currently 88% of ElderPlace participants who are capable have appointed a health care proxy.
Over a decade ago, Oregon pioneered the Physician’s Orders for Life-Sustaining Treatment (POLST), a portable doctor’s order sheet on bright pink card stock that specifies the appropriate emergency response regarding decisions about CPR, endotracheal intubation, hospital transport, IV fluid, feeding tube, or antibiotics.1 A valid POLST form signed by a doctor is honoredby emergency medical personnel
throughout Oregon, ensuring that a person’s wishes regarding treatment can be carried out in an emergency, even if the attending physician or health care proxy cannot be reached. ElderPlace has
made it a priority to discuss preferences addressed by the POLST with participants and families and to have a physiciansign the completed form within the first quarter of enrollment. The rate of completed POLST forms in ElderPlace has remained at 98% for several years. The original POLST form is kept with the participant and moved from place to place with him or her. A copy is kept in the electronic medical record and is accessible at all times to guide decisions by the participant’s physician or the
physician on call.
A large majority of ElderPlace participants (85%) prefer that the POLST state “do not resuscitate (DNR).” In terms of level of medical intervention, 15% of our participants prefer comfort care and do not want to be transported to the hospital, 68% would want limited hospital interventions to reverse an acute illness, and 17% would want full hospital interventions, including ICU, if appropriate. Although 55% of participants
would want at least a trial period of tube feeding, if indicated, 45% prefer no feeding tube. POLST wishes in ElderPlace vary by age (in general, older participants prefer less aggressive interventions) and by ethnicity. Compared to all ElderPlace participants, fewer African-Americans prefer DNR status (59%), and more prefer full hospital interventions (44%). However, the desire for aggressive interventions also declines with age among African American participants, although differences persist even in the oldest age groups.
In 1997, ElderPlace did a 3-year retrospective chart review of end-of-lifecare. One of the most interesting findings was that in over 90% of cases there was documentation indicating the care team recognized that the participant was in a state of decline or in the process of dying. Only 9% of deaths were unexpected. The implication was that if we could recognize the signs at an early enough stage, we should be able to develop a palliative care plan to meet the participant’s and family’s needs for the majority of people
we serve. Based on these findings and a review of the literature, in 2002 ElderPlace developed and implemented a care model that recognizes distinct phases of decline and emphasizes individualized
care planning with participants and their families in the final stages of their lives. We call it theSupportive Care Program.
The Supportive Care Program recognizes 3 phases of decline that precede death for most older people. Phase I is characterized by functional decline that persists despite careful evaluation and interventions aimed at reversing it. Phase II is defined an organ system failure, dementia, or failure to thrive that meet hospice guidelines for predicting that someone is in the final 6 months of life. Phase III is active dying. When an interdisciplinary team member recognizes that a participant may be appropriate for Supportive Care, the primary care provider (PCP) evaluates whether the participant meets criteria for a particular stage. If so, the primary care team meets with the participant and family to discuss the Supportive Care Program. If the participant (or surrogate) desires a palliative approach, a Supportive Care Plan is developed.
The goals of a Supportive Care Plan are to ease physical and emotional symptoms, support function and
autonomy, support spiritual needs, eliminate inappropriate medical interventions, and support family and caregivers in caring and in bereavement. Each Supportive Care Plan will vary with the participant’s preferences, cognition and function, and underlying conditions. It is routine to revisit the POLST and any advance directives when the goals shift to Supportive Care. Some participants in Phase I or II may prefer to be hospitalized when an acute illness appears reversible, while others may opt strictly for comfort care at home. The basis for the decision, the criteria, and the care plan are all documented in the electronic medical record and “Supportive Care Phase I, II, or III” is placed at the top of the medical problem list for easy reference.
The same care team-including PCP, primary nurse, community care nurse, social worker, and chaplain continue to care for the participant after the shift to Supportive Care, and the participant continues to live in her or his residential setting as long as care needs can be met there. ElderPlace has worked closely with contracted residential care and assisted living providers, as well as with adult foster caregivers, to enhance their skill and comfort in continuing to care for people through the dying process with support from ElderPlace staff. We also continue to provide training on end-of-life care to our own staff. A Supportive Care Steering committee oversees the program and is charged with initiating improvements
when needed.
ElderPlace has monitored several outcomes to evaluate whether implementing the Supportive Care Program in 2002 has improved end-of-life care for participants. One indicator, the percentage of participants who are in Supportive Care at the time of death, has increased from 59% prior to 2002
to 86% in 2005 (Figure 1). During the same period, we have seen hospital admissions and ICU admissions in the last year of life decline (Figure 2).
The percentage of participants who die at home has increased since Supportive Care was implemented and remains close to 75%. In 2005, 11% of ElderPlace participants died in the hospital and 14% died in nursing facilities. For participants in Supportive Care at the time of death, the percentage of home deaths is higher and hospital deaths is lower (Figure 3).
In 2005, ElderPlace surveyed family members to evaluate their satisfaction with the care we provided for their loved ones during the dying process. Respondents were asked to rate each item on a 5-point scale that ranged from 1= strongly disagree to 5= strongly agree. Figure 4 displays the percentage of respondents who marked 5 (strongly agree) for each of the items shown. Eighty percent strongly agreed
that the quality of care during the dying process was very good, 89% strongly agreed that ElderPlace staff
treated them with respect, and 79% strongly agreed that the participant’s goals and preferences were supported. Opportunities for improvement included keeping families informed,addressing emotional and spiritual needs, and managing pain and other symptoms.
In summary, the PACE model, as exemplified by Providence ElderPlace’s Supportive Care Program, can facilitate several desirable outcomes for participants in the final stages of their lives.There is a strong emphasis on advance care planning and use of the POLST to implement participants’ preferences. Defining criteria for Supportive Care has enabled ElderPlace teams to identify terminal decline early and develop person-centered Supportive Care Plans. Over 85% of participants who die in ElderPlace are receiving Supportive Care at the time of death. Families are very involved in the Supportive Care process and are highly satisfied with the quality of care. Hospital and ICU utilization in the final year of life have
decreased and home deaths have increased since the Supportive Care Program was implemented.
Several characteristics of the PACE model facilitate these positive outcomes. PACE provides comprehensive, coordinated care across the health care continuum by the same primary care team in all settings. Integration of financing and care delivery in PACE creates flexibility in care planning and removes obstacles to assembling all the needed services. In ElderPlace, the emphasis on advance care planning and POLST use results in care that respects participants’ preferences and reduces inappropriate hospital utilization. The PACE philosophy of prevention and early intervention is consistent with early recognition of irreversible decline. PACE care teams are sensitized to recognizing functional changes. Finally, there is high degree of family involvement in PACE.
The National Consensus Project in 2004 published Palliative Care Core Principles, which serve as benchmarks for evaluating end-of-life care. These include patient and family-centered care, timing of palliative care, comprehensiveinterdisciplinary care, attention to relief of suffering, effective communication skills, skill in caring for dying and bereaved, continuity ofcare across settings, equitable access, and quality improvement. The PACE model is well adapted to address all of these principles and to provide a seamless transition to an increasing focus on palliative care provided by the same interdisciplinary team.
Figure 1
Percentage of ElderPlace Participants Receiving Supportive Care at the Time of Death
Figure 2
Percentage of EldlerPlace participants with hospital, intensive care unit, and emergency department admissions in the last year of life.
Last Year of Life
|
1997-1999 |
2002 |
2005 |
| Hospital Admit |
52 % |
45% |
43% |
| ICU Admit |
15% |
8% |
6% |
| ED Visit |
48% |
43% |
50% |