Palliative Care Models for Chronic Disease Management

Palliative care is a type of specialized care that eases the symptoms and stress of managing disease and focuses on improving quality of life. It can be implemented for many types of chronic diseases, including chronic obstructive pulmonary disease (COPD), kidney diseases, Alzheimer's, different types of cancer, and heart failure. Palliative care differs from hospice care which is end-of-life care that focuses on making people comfortable when they have less than six months to live. Palliative care may include hospice care, but a terminal diagnosis is not necessary for receiving palliative care services.

In rural areas, palliative care can be community-based, hospital-based, or delivered through home health services. Palliative care teams use a holistic approach, focusing on patients' needs and goals to lessen the impact of disease symptoms. They can also help connect patients to other resources to improve quality of life. Care teams may help patients to:

Reduce pain
Lessen nausea and address eating concerns
Address breathing concerns and shortness of breath
Help with sleep disruptions
Assist with other activities of daily living

There is evidence that access to palliative care can improve how patients manage illness, how they make decisions about their care, and may even save money and reduce hospitalizations.

Stratis Health developed the Rural Community-based Palliative Care Resource Center to support rural communities in developing and implementing best practices in palliative care for people with chronic diseases. This Center has worked with more than 40 rural communities throughout the U.S. to improve outcomes and chronic disease care.

Examples of Rural Programs Using Palliative Care to Manage Chronic Disease

The Washington Rural Palliative Care Initiative (WRPCI) began in 2016 through the Washington State Office of Rural Health. It is a partnership of many organizations working to embed palliative care for people with serious illnesses into different hospital and outpatient care settings, including emergency departments, home health, skilled nursing facilities, primary care, and hospice. There are 19 different rural communities involved in this initiative. For example, Columbia County Health System in Dayton, Washington offers palliative care services to patients through WRPCI. The program links patients with a palliative care team for help with supportive care, spiritual care, advance care planning, and symptom management. The teams work to improve symptoms and quality of life for people living with cancer, congestive heart failure, chronic obstructive pulmonary disease, kidney disease, Alzheimer's, and many other chronic conditions.
Project ENABLE (Educate, Nurture, Advise, Before Life Ends) is an evidence-based rural program that improves access to palliative care for patients living with advanced forms of cancer, COPD, and heart failure and their caregivers. The program offers a care consultation with a palliative care provider and weekly coaching sessions with a nurse. During these sessions, nurses provide information to help patients manage symptoms and make decisions about their health. The program has been shown to improve quality of life and decrease depression for participants and their caregivers.
MaineHealth Care at Home offers palliative care services for people with serious injuries or chronic conditions living in rural areas of Knox County and Waldo County, Maine to help them manage symptoms and improve their overall well-being. The program focuses on managing care for people living with chronic obstructive pulmonary disease (COPD). Palliative care nurses and home health nurses work with physicians to ensure patients and families have the supports and services needed to manage their conditions at home.
HopeWest is a hospice and palliative care organization delivering services for people living with cancer, COPD, heart failure, kidney failure, Alzheimer's, and other serious conditions in rural Colorado. HopeWest works with physicians, nursing homes, and home-based providers to help people manage their chronic conditions in different settings. The program relies on thousands of volunteers who provide grief support and other unique activities and opportunities to participants. Read more about HopeWest in Rural Health Models and Innovations.

Implementation Considerations

Access to palliative care staff and services continues to be a challenge in rural areas. With chronic disease rates expected to increase in many rural areas with an aging population, there is a growing need for palliative care training for providers. To increase the coverage of palliative care services, the National Hospice and Palliative Care Organization has been named a Project ECHO SuperHub. They provide training, outreach, and guidance on palliative care and hospice techniques using videoconference technology.

In rural areas, smaller health centers, clinics, and hospitals may have limited funds to support palliative care services and staffing due to limited reimbursement opportunities. Some rural palliative care programs have been successful securing alternative funding from sources such as foundations.

Some rural communities have found that palliative care services may be underutilized. Often, patients and families do not have a clear understanding of the utility of palliative care for managing a chronic disease. For example, patients may not understand that palliative care is not the same as end-of-life hospice care and that it can be useful for many chronic conditions. Rural providers should consider making referrals for patients who are managing diseases and could benefit from palliative care services.

As with all healthcare and support services, organizations and providers offering palliative care should ensure that practices align with the cultural needs and concerns of the community. For example, programs may choose to address spiritual and social topics related to managing diseases, depending on the needs and preferences of the community.

Resources to Learn More

Clinical Practice Guidelines for Quality Palliative Care, 4^th edition
Document
Offers clinical practice guidelines for implementing quality palliative care. Outlines the process of palliative care, physical and psychological aspects of care, social and cultural considerations, and ethical and legal implications.
Organization(s): National Coalition for Hospice and Palliative Care, National Consensus Project for Quality Palliative Care
Date: 2018

Palliative Care for Rural Growth and Wellbeing: Identifying Perceived Barriers and Facilitators in Access to Palliative Care in Rural Indiana, USA
Document
Reports on a community-based participatory study of 15 palliative care clinicians and educators practicing in rural areas of Indiana to identify the barriers and facilitators regarding access to palliative care within their communities.
Author(s): Lalani, N., & Cai, Y.
Citation: BMC Palliative Care, 21(25)
Date: 2/2022

Sustainability Strategies for Community-Based Palliative Care: A Blueprint for Supporting Rural Palliative Care Services
Document
An overview of strategies and resources for addressing reimbursement, finance challenges, and continued sustainability to support and deliver palliative care services in rural communities. Discusses emerging opportunities to implement and sustain palliative care services.
Organization(s): Stratis Health
Date: 3/2021