Patients with serious illnesses receive unwanted care at the end of life, one of the largest drivers of spend in our healthcare system. One response to this problem is advance care planning. Comprehensive advance care planning (CACP), a more detailed and involved form of advance care planning, empowers patients to reflect upon their goals, values and beliefs. Patients and families then make decisions about the future medical treatments that align with those goals, values and beliefs. CACP is multifaceted in that it addresses the patient’s legal rights, and identifies the patient's preferences for medical interventions, as well as substitute decision maker(s).
Most patients with serious life-limiting illnesses are treated and cared for over a long period of time by a primary care physician (PCP), who can play an important role in helping patients and their families in CACP conversations. PCPs are well placed to encourage CACP conversations due to the long-term relationship and trust they have built with their patients. However, recent Medicare data shows that only 2.8% of patients actually have a care planning conversation with their physician.
What factors contribute to this gap? And how can we close it?
Barriers to Having Advance Care Planning Conversations
A recurring barrier to these conversations is “role clarity,” or a lack of shared understanding by care providers and patients about who should initiate CACP discussions and when. Recent studies report conflicting views between a patient and their doctor about whose role it was to initiate the CACP discussion. Physicians often have concerns about initiating the CACP discussion, wanting to avoid being a source of anxiety or loss of hope, while patients expect their doctors to be the ones to initiate the conversation.
Time is also a barrier that plays a large factor. The relentless pressure to keep up with busy consultation schedules can limit physicians’ ability to initiate time consuming CACP discussions during consultations. Creating a state-sanctioned Advance Directive is time-intensive and requires attention to legal and compliance issues that most clinics don’t have the staff or hours to support.
Another barrier is information. Physicians who didn’t initiate CACP discussions most frequently cited a lack of knowledge, skills and confidence in relation to CACP, with the most common knowledge gaps relating to patient competence, legal considerations, documentation and processes.
These conversations can be filled with stress, uncertainty and even conflict. And a complicated mix of role confusion, time constraints, and knowledge gaps keep many physicians from feeling they can offer this service to their patients.
Bridging the CACP Gap
There are promising signs to bridge this gap. Patients are eager to have these conversations. Studies show that patients were willing to discuss CACP when it was brought up, especially when the physician initiated the discussion. Patients and families have expressed the desire for earlier and more in-depth discussion of CACP, additional services and support, and improved communication with their PCPs. Additionally, family members of patients who have undergone CACP discussions often report decreased stress, anxiety and depression during the bereavement period. Moreover, CACP has been associated with increased documentation of patients’ end-of-life wishes, and improved quality of care and patient/family satisfaction.
How do we overcome these barriers and develop solutions to facilitate CACP for more seriously ill patients? One recent study identified four characteristics underpinning successful CACP programs:
- the involvement of a trained or experienced facilitator
- a selection process to identify patients eligible for CACP
- structured and patient-centered CACP discussions
- the opportunity to complete CACP documents
Using an external CACP partner, whose sole focus is on helping patients complete CACP, is critical in a patient’s care journey. It can make all the difference in a patient’s end-of-life or chronic care experience. Given the sensitive nature of the topic, CACP should be facilitated with care, compassion and experience.
Trusting Iris with Your Patients
Iris, powered by Aledade, helps fill the CACP gap so physicians can focus on taking the best care of their patients. Iris takes ownership of the entire process and champions the benefits of CACP to the patient, their loved ones and practice staff. Iris removes the barriers to having these discussions and takes the burden off of clinicians. Iris manages the entire CACP process including patient outreach, expert-led CACP facilitation and discussions, documentation completion and the distribution of directives to care teams to ensure goal concordant care.
Our team of trained healthcare experts work with patients and their families to deeply explore care goals on an ongoing basis. We document these care goals in full compliance with state and federal regulations, leveraging our proprietary documentation throughout the process to ensure each patient’s unique care goals are described in full. We then distribute the completed documents to the points of use, ensuring clinicians and family members are empowered with the information they need to carry out the patient’s wishes.
Many patients and family members are challenged to define the kind of care we would want at the end of life. It requires lots of reflection - on what is important to us, what our goals are, what we value, what we believe. Iris’ goal is to make it as easy as possible to get the conversation started.