Implementing into Primary Care A Toolkit for Providers & the Palliative Care Community

Lauren Greco, Project Manager Table of Contents

• Introduction • What is Palliative Care? • The Palliative Care Continuum • Palliative Care Services • The Benefits of Palliative Care • Getting Started • Pre-Implementation • Organizational Readiness • Implementation • Palliative Care Training • Palliative Care Tools • The Palliative Care Workflow • Sustainability • Information for & Caregivers • Additional Resources

2 Introduction Definition – Services - Benefits

3 What is Palliative Care?

The World Organization defines Palliative Care as an approach that improves the quality of life for patients and their families who are facing the problems associated with life- threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. http://www.who.int/cancer/palliative/definition/en/

The Center to Advance Palliative Care (CAPC) defines palliative care as a specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.

4 What is Palliative Care?

• Provides relief from pain and other distressing symptoms • Integrates the psychological and spiritual aspects of patient care • Will enhance quality of life, and may also positively impact the course of the illness • Is applicable in the early course of illness, in conjunction with other that are intended to prolong life, such as chemotherapy or radiation , and includes those investigations needed to better understand and mange distressing clinical complications • Offers a support system to help patients live as actively as possible • Offers a support system to help the family cope during the patients illness as well as in bereavement (if/as applicable) • Affirms life and regards dying as a normal process • Intends neither to hasten or postpone death

5 The Palliative Care Continuum

Disease directed therapy

Palliative Care Bereavement

Disease Trajectory and Terminal Prognosis

Diagnosis Death

Source: Caprio, T. (Oct. 3, 2018). Community Palliative Care: Identifying Patients with Complex Needs. Presented at The Primary Care Clinician’s Role in Palliative Workshop, Nichols, NY

6 The Palliative Care Continuum

Source: Caprio, T. (Oct. 3, 2018). Community Palliative Care: Identifying Patients with Complex Needs. Presented at The Primary Care Clinician’s Role in Palliative Medicine Workshop, Nichols, NY

7 Palliative Care Services

Include curative or non-curative services focused on disease management, and the reduction of disease burden and adverse symptoms.

These services may include, but are not limited to: • Interventions and referrals to relieve and/or reduce symptoms and distress • Education to better understand disease and diagnosis • Clarification of treatment goals and options • Supportive services to ensure understanding of the illness, and th