## Breadcrumb - [Home](/) - [Resources & Support](/resources-support) - [For Professionals](/resources-support/professionals) - [Our Care Strategy](/resources-support/professionals/our-care-strategy) ## Breadcrumb - [Home](/) - [Resources & Support](/resources-support) - [For Professionals](/resources-support/professionals) - [Our Care Strategy](/resources-support/professionals/our-care-strategy) # Palliative Care Initiative ![Nurse holding the hands of his patient](/sites/default/files/styles/no_sizing/public/images/Quality-Care-Initiatives.jpg?itok=A3iDDQOr) Our initiative, [Implementing Team-based Outpatient Palliative Care in Parkinson’s Foundation Centers of Excellence](https://www.pcori.org/research-results/2020/implementing-team-based-outpatient-palliative-care-parkinson-foundation-centers-excellence), provides personalized training to Parkinson’s disease (PD) specialists and teams in the art of palliative care. ### The Problem Treatments and medications prescribed for people with Parkinson’s primarily address [movement symptoms](https://www.parkinson.org/understanding-parkinsons/symptoms/movement-symptoms/rigidity). In Parkinson’s, [non-movement symptoms](https://www.parkinson.org/understanding-parkinsons/non-movement-symptoms) — such as [depression](https://www.parkinson.org/understanding-parkinsons/symptoms/non-movement-symptoms/depression), [anxiety](https://www.parkinson.org/understanding-parkinsons/symptoms/non-movement-symptoms/anxiety) and [fatigue](https://www.parkinson.org/understanding-parkinsons/symptoms/non-movement-symptoms/fatigue) — go underreported and undertreated. People with Parkinson’s often find these symptoms to be more debilitating than movement symptoms, according to our prior clinical study, the [Parkinson’s Outcomes Project](https://www.parkinson.org/advancing-research/our-research/parkinsons-outcomes-project). > “Palliative care is about professionals of all disciplines really being active listeners and listening to the agenda of a patient and family who's sitting in front of you, not the agenda of what you think that they should need. Listen to where they are in their Parkinson's journey.” > > \- Joan Gardner, BSN Nurse ### How We Are Addressing It Palliative care, also known as supportive care, is an approach to care that focuses on treating the whole person instead of the disease. When healthcare professionals provide PD-tailored palliative care, the focus is on quality of life. Studies have shown that people who receive palliative care experience: - Less pain and other symptoms like constipation. - Improved quality of communication with doctors and family members - More emotional support. - Care that is more aligned with their wishes and meets their emotional and spiritual needs. Our goal is to make the palliative care approach widely available and accessible from the time of diagnosis, providing support for people with Parkinson’s and their family members, throughout every [stage](https://www.parkinson.org/understanding-parkinsons/what-is-parkinsons/stages) of the disease. Our initiative, [Implementing Team-based Outpatient Palliative Care in Parkinson’s Foundation Centers of Excellence](https://www.pcori.org/research-results/2020/implementing-team-based-outpatient-palliative-care-parkinson-foundation), provides personalized training to PD specialists and teams in the art of palliative care. Parkinson’s Foundation designated centers receive individualized training and implementation plans that best meet the needs and resources of their center. Working in collaboration with the University of Rochester Medical Center, the program was launched based on a Patient-Centered Outcomes Research Institute (PCORI)[ funded study](https://www.pcori.org/research-results/2015/does-palliative-care-improve-quality-life-people-parkinsons-disease-and-reduce). Through this initiative, the Foundation has trained more than 800 health care professional team members across [Centers of Excellence](https://www.parkinson.org/living-with-parkinsons/finding-care/global-care-network#Centers), which provide care for more than 70,000 people with PD. ### A Parkinson’s Palliative Care Model ![The 5 Pillars of Palliative Care & Parkinson's](/sites/default/files/styles/no_sizing/public/images/PalliativeCare-5Pillars.png?itok=PYApswze) - ### 1. Assess and manage non-movement symptoms - Systematically assess non-movement symptoms, at least annually. - Use a scale, template, or checklist. - Comprehensive screening for non-movement symptoms should specifically include pain, constipation, appetite and weight loss, in addition to other commonly assessed symptoms. - ### 2. Support emotional and spiritual needs Clinicians are encouraged to use a standardized scale or brief screening questions for systematic screening that goes beyond the psychiatric disorders of anxiety and depression to address normal but difficult emotions and spiritual challenges (such as feeling hopeless, grief, anger, frustration). For identified emotional and spiritual needs, chaplains can help address issues that are screened, but they are not the only way. Psychologists, counselors and social workers can also address emotional and spiritual needs. - ### 3. Support care partners The primary goal is to systematically screen care partners and to establish processes to handle positive screens. Teams can complete systematic assessment using a scale, template or checklist to screen for care partner distress. Providers or other team members can provide the screening. The team’s goal should be to assess the majority of care partners. - ### 4. Advance care planning The goal is for healthcare teams to be systematic in screening for advance care planning and having these conversations in order to complete advance care planning documents. **Advance care planning documents** should include healthcare proxy and [state-specific forms](https://polst.org/programs-in-your-state/). They should be visible and in the correct location in the Electronic Medical Record. If completed outside the medical setting, these documents should be reviewed by medical professionals to ensure they make medical sense and align with patient/family values. Practitioners — a neurologist, dedicated Advanced Practice Providers and/or social worker — should discuss advanced care planning with patients and families in office. Alternatively, they can refer the patient and family to a group clinic, other hospital settings (such as a geriatric clinic) or another resource that can help them complete these documents. - ### 5. Refer to palliative care specialist and hospice, when ready - For specialist palliative care, be systematic in screening and have a process to address positive screens. Screening can include the use of a tool such as the [Brief Needs Assessment Tool](https://acrobat.adobe.com/link/review?uri=urn:aaid:scds:US:454653cd-b8b9-4817-a1d3-ebf55c556897). - Addressing needs could include having integrated neuropalliative care within the center or department, or referring to a palliative clinic in the institution or community. - Hospice should be considered for patients who are in an advanced state. Teams should be comfortable discussing hospice and have a process for referring to hospice that includes staying involved in the care of patient, at least as a consultant. **[VIEW PALLIATIVE AND SUPPORTIVE CARE RESOURCES](/palliative-supportive-care-resources "Palliative & Supportive Care Resources")** **[LEARN MORE ABOUT PALLIATIVE CARE](/palliative-supportive-care-resources "Palliative & Supportive Care Resources")** **[ENROLL IN OUR PALLIATIVE CARE COURSE](https://education.parkinson.org/professional-education/content/team-based-palliative-care-essentials-parkinson%E2%80%99s-disease-0)** ## Explore All Our Care Programs ### Hospital Care Initiative This initiative aims to eliminate preventable harm and promote higher reliability in care for people with Parkinson’s in the hospital. [LEARN MORE](/resources-support/professionals/our-care-strategy/hospital-care-initiative) ### Rehabilitation Medicine From physical, occupational and speech therapy, this initiative aims to raise awareness of the importance of rehabilitation care in Parkinson’s. [LEARN MORE](/resources-support/professionals/our-care-strategy/rehabilitation-initiative) ### Our Care Strategy Find out how we are working to ensure every person with Parkinson’s receives the highest quality care possible, regardless of setting. [LEARN MORE](/resources-support/professionals/our-care-strategy) ### Find Local Support Find your nearest Parkinson's Foundation chapter for local events, support groups, care facilities and more. 10 Miles 25 Miles 50 Miles 100 Miles 250 Miles - Share on Facebook - Share on X - Share on LinkedIn