As a patient advocate, I have volunteered with the National Patient Advocate Foundation (NPAF) for a number of years. NPAF’s mission is to bring patient voices to health system delivery reform by promoting equitable access to affordable, quality healthcare through advocacy action and public and private partnerships. It was through this organization that I gained insight to Palliative Care and what it could mean for patients and caregivers.
The data I’m sharing is from a presentation given by NPAF to its volunteers along with information I was privileged to gain while serving on The Tennessee Palliative Care Task Force.
What is Palliative Care?
• Team-based medical care focused on quality of life for the patient and family that provides relief from the pain, symptoms, and stresses of serious illness
• Appropriate at any age and disease stage
• Provided along with curative treatment as an added layer of support
It is unfortunate (but not uncommon) that many don’t know the difference between palliative care and hospice. Palliative Care can start at initial diagnosis. Palliative care continues curative care, whereas in hospice care, a patient foregoes curative care/treatment. Palliative Care equals better quality care, thus the focus is equally on “what’s the matter with the patient” along with “what matters to the patient . Palliative Care also focuses on what matters to the family and caregiver.
As a patient advocate, I focus on the patient, then the family/caregiver with prayers for all involved, especially the medical care providers. As an advocate my questions are designed to connect the doctor’s information to the patient in a way the patient assuredly understands what is taking place with their care. Our questions also help the doctors understand where the patient is confused or unclear about the information provided.
This exchange of information eliminates the standard “do you understand?” from the physician and the falsely obligatory “yes” from a patient who has no idea what the physician spoke about. The exchange also creates a path for conversation about palliative care.
Palliative Care is a comprehensive approach to treating serious illness that focuses on the physical, psychological and spiritual needs of the patient. Its goals is to achieve the best quality of life available to the patient by relieving suffering and controlling pain and symptoms. Palliative Care provides that strength when the patient is knowledgeable that the treatment is not just about the disease but the total person.
Proudly, Tennessee is one of several states where the governor has signed a bill into law establishing palliative care.
Brown Buddies Patient Advocacy, Founder
National Patient Advocate Foundation, Volunteer
Patient Advocate Foundation, Volunteer