Advance Care Planning in Primary Care: A Patient Toolkit

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Josie Xu is a medical student who has been working with Dr. Doug Kavanagh to create a patient education and information documentation tool on Ocean for Advance Care Planning. The tool is comprised of four patient questionnaires that are designed to help educate patients on Advance Care Planning, point them to helpful resources, encourage discussion with family members, and ultimately document care preferences in the patient record in the EMR for future reference.

CMA-8083As a medical student from Queen’s University, I had the unfortunate responsibility of talking to patients and their families about code status in the Emergency Department – usually after or during a major adverse health event, and often in the middle of the night. Being admitted to the hospital is already stressful enough, and asking patients and/or their families to make decisions that could dictate life or death at that moment is simply overwhelming. The situation is made even worse when the patient is medically incapable of making decisions and has never formally discussed their wishes with their substitute decision maker.

Over the last year, the CMA and OMA have emphasized the need for improved end-of-life care services; I’ve always wondered what role primary care physicians could play in starting the conversation with their patients. It seemed to me that patients might simply need a trusted voice to guide them towards existing resources to help start the conversation in their own homes.

After doing some preliminary research, it was clear that there were many excellent resources available such as “Speak Up!“. The missing link was finding a way to simply and clearly share those resources and help support the patient to work through the process, without demanding too much on the part of the physician. CognisantMD’s Ocean platform seemed like a perfect tool to enable the self-interviewing and education I envisioned, so I connected with Dr. Kavanagh to explore the idea further.

Using Ocean, I saw the opportunity to introduce the issue of Advance Care Planning through online questionnaires in steps so that:

  1. Patients could go at their own pace and take time to reflect and speak with loved ones at each step and;
  2. A majority of the conversation/education could be done outside of physician office appointments.

After just a few days working in the CognisantMD office, the Advance Care Planning Tool (Part 1) was ready to go. This first survey introduces basic concepts in Advance Care Planning, documents whether they currently have advanced directives, and directs them to additional legal documents and Speak Up! workbooks that they can fill in.

The second survey, designed to be sent a few weeks after the first survey, educates the patient on different levels of intervention (e.g. symptom management vs. diagnostic tests vs. life-sustaining treatments) and documents any care preferences they are comfortable in sharing with their family physician. All the pertinent information about Substitute Decision Maker contact information, legal document location, and goals of care can be automatically documented in the EMR in a clear, direct manner for future reference without any intervention on the part of the family physician.

We’ve already started introducing the tool to patients using OceanWave Online’s email-based survey invitations. I’m very optimistic that this tool will be effective in stimulating conversation amongst families, as having family members aware of your wishes is arguably the most important part of the process.

The feedback we have gotten so far has been overwhelmingly positive, with one patient saying that this survey gave her “permission to talk about it with her family physician”, whereas she previously had never thought to bring it up. Despite any preconceived biases against seniors and technology use, the elderly patients in our pilot project have remarked that the user interface was clear and easy to use.

The Advance Care Planning tool is openly available in the Ocean Library; I welcome feedback on the tool and hope to see it rolled out more broadly over the coming months. I hope that the online, learn-at-your-own-pace format allows much of the education to happen outside of the office, with physicians as available, approachable resources for additional questions.

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