PCforMe: Preparing Patients for Palliative Care

Topic: Education

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There are many misconceptions held by patients with chronic or life-limiting disease regarding the role of palliative care as a part of their treatment plan.  For example, many patients equate palliative care to hospice or end-of-life care.  Due to this misconception, there is a high cancellation rate of new palliative care consults.  To provide patients and caregivers better information regarding palliative care and how it differs than hospice or end-of-life care, better tools are needed for patients and caregivers.  

To date, current interventions for patients to learn about palliative care are limited and unreliable.  Typically, to learn how palliative care can be implemented into a treatment regimen, a patient must 1) speak directly to his/her doctor which many patients are hesitant to do, 2) discuss with friends or family who have experienced palliative care in the past, or 3) search for information on the internet which can often be misleading or unreliable.   

To address this issue, we have created PCForMe, a web-based interactive tool that helps educate and prepare patients for their initial palliative care consult.  PCforMe empowers patients to become more engaged in making decisions regarding their care.  Utilizing a mobile technology platform, PCforMe allows palliative care patients to learn about palliative care at their own pace.  Using videos and interactive gaming concepts, PCforMe helps prepare palliative care patients for their initial consult with a palliative care clinician.  Throughout PCforMe, patients will be prompted to submit information about what is most important to them, what they need help with, their hopes and worries about the future, and what they need to prepare for their palliative care journey.  Once patients complete their PCforMe experience, the application automatically compiles all responses into a document called the Palliative Care Passport.  The Palliative Care Passport is a printable document that allows patients to share their responses with their caregivers, loved ones, or clinical team.

We will continue to make iterations of the content and capabilities of PCforMe as we test it with patients, caregivers, doctors, and other stakeholder groups.  First, we will develop usability and feasibility protocols to test PCforMe in a clinical setting at the Duke Cancer Institute.  Revisions of this website will occur based on the feedback of this testing.

Author

  • Jonathan Nicolla, MBA
  • Clinical Trials Coordinator, Duke University
  • Global Palliative Care Quality Alliance
  • 2424 Erwin Road
  • Durham, NC 27705
  • (919) 668-4907

Co-authors

  • Arif Kamal, MD, MBA, MHS
  • Debra Davis
  • Fred Friedman, BA
  • Jonathan Nicolla, MBA
  • Laura Roe
  • Tisha Broyles

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