Supportive Voice Vol. 6 No. 4 Fall 2000
by Leigh A. Burgess, BA, and Mary E. Davidson, MSN, RN
Life is unbelievably precious and highly valued in our ethics and faith systems. All too often, however, life and all its precious amenities are taken for granted: the smell of fresh-cut grass, the sound of children’s laughter, the soft touch of a loved one’s embrace, the taste of grandmother’s warm peach pie. The daily stress encountered during a hectic day at the office or on a crowded highway during the morning rush hour all too easily minimizes the significance of each moment.
Reality comes crashing down once we are told of a family member’s illness or disease. Is there a cure? What do we need to do to make her better? How long until he can go home? These are all questions that quickly leap to mind at the news of a loved one’s illness. Unfortunately, the answers are sometimes elusive. At times the answer is, "We don’t know how long she has," or "We need to run some tests and hope for the best." It is a fact that we all will die some day, but not many individuals like to think of their own demise or the death of those they love. But once you’ve held the hand of a grandmother of 15 and great-grandmother of 5 who says, "I am ready to go, just make me comfortable and stop the pain," you truly realize the value and elemental need for palliative care.
To confront life-threatening illnesses and ensure appropriate pain management more effectively, Mercy Health Partners (MHP) of Southwest Ohio, Cincinnati, has established a Palliative Care Demonstration Project to increase quality of life and decrease pain and symptom occurrence among the elderly population and improve communications among the region’s health care providers, patients, and caregivers.
Palliative care was chosen as a priority for MHP because it extends the healing ministry of Jesus and improves the health of our communities. Special emphasis is placed on people who are poor and underserved.
As one of 10 regional health systems that comprise Catholic Healthcare Partners (CHP), MHP is trying to serve the needs of its patient population, 80 percent of whom are older than age 75. MHP’s Palliative Care Demonstration Project is the first program of its kind in the tristate area encompassing Ohio, Kentucky, and Indiana. The overall project seeks to create systemic change through direct care, education, and advocacy. As an integral part of its compassionate vision, the Palliative Care Precepts developed by Last Acts helped to form the vision statement for the program.
In 1999, MHP provided $23 million in community benefit to more than one million people in the region, including the elderly, poor, and underserved. The foundation on which MHP is built offers services that reflect the core values of compassion, excellence, human dignity, justice, sacredness of life, and service. As the parent organization for MHP, CHP has consistently committed to the vision of improved care of the dying as an outreach of their health care mission.
Demonstrating the Need
The Palliative Care Demonstration Project is designed to enhance MHP’s efforts to provide comfort and assistance to a changing population. Current regional estimates show that, during 2000, 13.4 percent of individuals living in Ohio (one state we serve) are older than age 65, with an increasing percentage of terminally ill patients living alone or with an elderly spouse (who has his/her own health problems). Heart disease and cancer have been identified as the leading causes of death in the region’s elderly population–a target audience served by the project.
Yet, despite these growing numbers, hospice and palliative care have not been fully utilized in the region. Patients and family members are often not ready to accept hospice; clinicians are frequently reticent about making a referral in the mistaken belief that to do so would rob the patient and family of any hope. These are just two factors that have influenced pain management and end-of-life issues in the region. To address these factors, MHP approaches the issue of mortality from an oblique angle, meeting patient and family where they are "at" in their lives, facilitating their abilities to make informed decisions, and advocating for them in an increasingly complex health care system.
The first step in the development of the Palliative Care Demonstration Project was a Rapid Design Quality Improvement Effort in August 1999. This process entailed condensing one year’s worth of quality improvement efforts into three days. As part of this initiative, more than 90 interdisciplinary clinicians from CHP’s 10 regions committed to sharing resources and professional insights in working together to develop templates that were used by all as a means of improving current efforts.
A $25,000 grant through CHP has funded the initial efforts of education and information needed to bring a team of interdisciplinary providers together and allow them to focus their skills toward healing at the end of life. Although each team member (physicians, nurses, social workers, physical therapists, chaplains, and nutritionists) had already incorporated end-of-life issues in their respective specialties, there was a significant lack of coordination and communication among them as a group. In addition, there was a general lack of support for the clinicians as they independently tried to provide care but were not sure who else could be used to support and reinforce their efforts. As a result, the focus of the goals commonly and institutionally were derived from care paths or dictated by system convenience (time of food tray delivery, timing of medications), rather than reflecting the needs of patients and family members.
The Palliative Care Demonstration Project
The purpose of the MHP Palliative Care Demonstration Project is to establish a best practice for implementing a model of providing excellent end-of-life care within an acute care setting that focuses on relief of suffering and improvement of quality of life. This purpose will be demonstrated through outcomes that indicate improved clinical, financial, and functional parameters for the patient and family, community, and institution.
In April 2000, the initial phase of the Palliative Care Demonstration Project was begun with the goals of enhancing quality of life, promoting comfort, increasing referrals to hospice, and increasing hospice length of stay.
The first of three phases of the project includes dedicating four acute care beds for palliative care at two sites: Mercy Franciscan Western Hills and Mercy Anderson. Establishing specially designated rooms that accommodate the family or loved ones encourages a focus on the importance of relationships at this time of life and encourages their active and important participation in the relief of symptoms rather than aggressive, futile intervention. The project differs from a hospital-based hospice unit because the patients have not been given the diagnosis of six months or less to live, and our services are not reimbursed.
Each patient is served by a palliative care team, consisting of 10 to 15 individuals from a variety of health care backgrounds (a nurse coordinator, a physician, a spiritual care chaplain, a physical therapist, a dietitian, an occupational therapist, a home care nurse, a hospice nurse, a holistic therapist, a psychotherapist, a case manager, and a pharmacist). (See figure below.) This team works closely together to help guide care and facilitate communication.
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Interdisciplinary Team
The patient and family are aligned in the center, showing that their needs are directing the focus of the interdisciplinary team. Community groups, too, support the circle of care and are shown correctly positioned in their supporting role around the patient/client/resident and family. The interdisciplinary health care team completes the wheel, lending expertise and support to the patient/client/resident, the family, and the community that will care for them at discharge.
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Referrals for palliative care services can come from any location or provider within each facility. Any health care provider, including nurses, can initiate a referral to the nurse coordinator, who discusses the case with the attending physician and performs a palliative care assessment. After seeing the patient, the nurse coordinator collaborates with a specially trained interdisciplinary health care team to identify which services can be most beneficial to the patient and family members. The team may decide that, although one service may be beneficial, another service may not be needed. Under the guidance of a nurse coordinator, implementation of a palliative care team has allowed team members to come together at least once a week to discuss and plan care that is patient- and family-focused. This radical shift in how care is delivered has been the most prominent and appreciated feature of the team. Physicians report that they can better understand the needs of their patients through the opportunity of having specialized clinicians honing in on specific target issues, such as completing advanced directives.
One of the more innovative components of the Palliative Care Demonstration Project has been the use of holistic therapists as a modality of service provision. By focusing on the human being as a physical, social, and spiritual entity, patients and family members are better equipped to address all aspects of chronic or terminal illness. Massage therapy, healing touch, music therapy, and reiki have all found a welcome home in the moderation or alleviation of symptoms such as breathlessness, anxiety, restlessness, pain, and edema. Currently, the system has funding to provide 10 hours per week of holistic services to patients.
This concept of aligning patients’ needs with appropriate services is not new. This approach borrows heavily on the excellent work that is being done by hospice. But what is new is the setting. Acute health care institutions are not known for their ability to collaborate and coordinate services for the dying. The Palliative Care Demonstration Project brings this element to the forefront by focusing on the goals of the patient and family as paramount to the treatment plan.
Evaluation and Outcomes
Although MHP is not reimbursed for its palliative care service, significant cost savings are anticipated by alleviating futile therapies and tests. Equally important, it is hoped that patients will be admitted to hospice care earlier. Because it is not designed as a revenue-generating cost center, there has been little interest from other health care systems in southwest Ohio for allocating resources to develop palliative care. However, MHP hopes that future outcomes will show that a hospital-based acute palliative care program can be cost effective.
As part of its evaluative component, the project will monitor its impact on health care outcomes as well as evaluating our referral to hospice and hospice length of stay. This will be accomplished through a comprehensive holistic therapies and health care outcomes measurement tool.
Health Care Outcomes
- Enhance quality of life, including a measure of spirituality
Tool: Missoula-Vitas Quality of Life Instrument
- Decrease pain and symptoms
Tool: pain scales and chart review
- Increase hospice length of stay
Tool: patient record analysis
- Decrease percentage of patients who spent more than 10 days in the intensive care unit before dying
Tool: patient record analysis
- Increase health care providers’ knowledge base
Tool: pre/post modified City of Hope questionnaire
- Decrease length of hospital stay, increase hospice length of stay
Tool: patient record analysis
- Increase patient/family satisfaction with care
Tool: satisfaction survey sent to patients/family
- Increase health care provider satisfaction with palliative care team
Tool: questionnaire sent to providers at the end of the project
Holistic Therapies Health Care Outcomes
- Increase symptom improvement
Tool: Patient referral form
- Increase patient satisfaction
Tool: satisfaction survey sent to patients/family
- Decrease pain
Tool: pain scales and chart review
The success of the project can be concretely measured by the increasing interest of health care providers regionwide. "We initially anticipated a response rate of 40 referrals in the first nine months," says Davidson. "We have been surprised by a total of 55 referrals in the first three months." Current estimates show that the project could serve almost 2,000 referrals by the year 2003.
The initial phase for the project will end in December 2000. Phase 2 will include a rollout of the project to all six acute care sites in our region. Phase 3 will include a rollout to long-term care facilities, the integration of volunteers, and the provision of a specialized community education element.
The MHP Palliative Care Demonstration Project has been selected as a evaluation site for The Robert Wood Johnson Center to Advance Palliative Care. Future outcomes of the evaluation include inclusion in that organization’s How to Create a Hospital-Based Palliative Care Program manual and the establishment of a "trinity of palliative care services," which will support the Palliative Care Demonstration Project. (See figure below.) This component builds on relationships with other local health care systems, hospices, and medical schools to establishing community bridges that will allow for effective and efficient community collaboration to provide care within the most appropriate settings. The benefit of future collaborations will lead to an enhanced quality of life for patients and family members and will enable MHP to create integrated, holistic health services that are recognized for value, satisfaction, and safe quality care.
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Trinity of Palliative Care Services
The trinity of services that will support the Palliative Care Demonstration Project are shown. Establishing community bridges will allow for effective and efficient community collaboration to provide care within the most appropriate setting possible. Because these processes have not been set up, significant education and preparation will be required. The role of volunteers will be explored and facilitated. Where prudent, links and resources already established to meet care-giving needs will be identified and used, supporting a partnership in health care provision.
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Leigh A. Burgess, BA, is project manager, and Mary E. Davidson, MSN, RN, is coordinator, Regional Palliative Care Program, Cincinnati.