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How to engage patients in advanced directives


PCPs are the front lines of the culture change about discussing advance directives, end-of-life care and death.

advance directive, patient engagement, living will, end-of-life care, death

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Physicians and other medical professionals know the importance of advance directives, both in terms of patient empowerment and professional liability. But engaging patients in healthy discussions about their wishes for (or the refusal of) future medical care is often fraught with obstacles - and it’s not just because people don’t like to talk about death.

Many patients don’t realize they have choices in how they are treated in life-sustaining situations, so engaging patients in learning about the impacts of prognoses and treatments can go a long way in empowering them to make informed choices when the end of life is on the horizon.

However, the best time for discussing advance directives is long before a life-threatening illness occurs. Primary care physicians (PCPs) can help patients make sure their wishes are met by making the advance directive a regular topic of discussion or, at the very least, at the annual exam.

The 2018 Conversation Project National Survey reveals a serious disconnect between what patients view as important and what actions they actually take:

  • 92 percent of Americans say it’s important to discuss end-of-life wishes, yet only 32 percent have actually had such a conversation with their doctors.

  • 95 percent say they’d be willing to discuss the topic if asked.

  • While many surveyed patients say they believe talking about end-of-life care would create anxiety in themselves or loved ones, they also say not discussing it actually increases their anxiety.

One of the biggest hurdles for patients is the language used in the advance directive forms, which often assumes a very high level of medical understanding, especially when it comes to complex life-sustaining equipment, says Kelly McCutcheon Adams, LICSW, Senior Director at the Institute for Healthcare Improvement (IHI), the Boston not-for-profit that birthed The Conversation Project and other initiatives on the documentation of healthcare wishes.

“For example, a person’s willingness to be on a ventilator isn’t necessarily a yes/no question,” she explains. “There’s a huge difference between being on a ventilator for six or eight weeks for recovery and being on a ventilator for the rest of your life. Patients need to understand that they can express wishes about the degrees of treatment instead of answering as a yes/no question.”

The National Institute on Aging has published a portal that demystifies the medical language commonly found on advance directive forms, including explaining what being on a ventilator entails and what palliative care encompasses. Sharing this resource with patients a week or so before an annual exam visit can help prepare patients to participate in a meaningful discussion about advance care directives, providing information and clarification of terms that can make the visit more efficient for physicians and more informative for patients.

The Conversation Project originally began in 2010 as a patient-based educational endeavor, but it has grown far beyond that. Getting PCPs involved on the front lines is the only way to achieve true culture change, McCutcheon Adams notes.

In 2012, the institute joined with 10 health systems to launch the Conversation Ready initiative to educate physicians on how to engage patients in healthy conversation about their wishes concerning serious illness and end-of-life care. A large part of the initiative is about helping practitioners to normalize the conversation.

“Like many important issues in healthcare targeted for improvement, end-of-life care has often suffered from good intentions without enough good systems in place to change behaviors, attitudes and practices,” noted Maureen Bisognano, then-President and CEO of IHI, in the 2012 announcement of the launch. “When families and loved ones have discussed their wishes and preferences ahead of time, they can engage with the medical community differently. Doctors and nurses, in turn, have the opportunity to act in a supportive fashion, using their clinical knowledge to help patients experience a ‘good death’ as opposed to a ‘hard death’ that so many people fear and have witnessed.”


The PCP’s growing role

For healthy patients who tend to see a physician fewer than three times a year, the PCP could be the only point of contact on the conversation about advance directives. That means the burden for explaining the medical terminology in the state-approved form will often fall to the PCP office, a role that should be embraced - not shirked - McCutcheon Adams says.

Unfortunately, misconceptions about advance directives run rampant among patients, forcing PCPs to serve as myth-busters and educators. For example, McCutcheon Adams notes, patients commonly believe one or more of the following:

  • The “emergency contact” on your office form is the same thing as a healthcare proxy or durable Power of Attorney (POA).

  • An advance directive is the same as a healthcare POA and/or a “Do Not Resuscitate” order.

  • There’s no need for an advance directive until there’s a diagnosis of a serious medical condition.

  • Advance directives are mainly for older people or those who need long-term care.

  • A hospital form they signed prior to a surgery is all they need, even if it was 10 years ago.

  • The PCP office already has all necessary documentation in some magical place, such as the cloud.

One of IHI’s key missions is to pry the topic of advance directives out of its secretive societal hole and into the open where information can be documented and updated regularly. Achieving that means diminishing the awkwardness and fear patients feel when talking about their own death or debilitating illness.

McCutcheon Adams says the topic of advance directives doesn’t need to be broached at every patient encounter but at the very least should be discussed at the annual exam. “We’re so proactive about talking about things like weight, allergies, alcohol intake and smoking. We’ve normalized those topics. Now we need PCPs to talk about advanced directives the same way.”

PCPs also need to stop thinking about advance directives as initiatives for older patients and embrace the discussion as something for every patient. A 2018 state survey conducted by the Massachusetts Coalition for Serious Illness showed that even among surveyed patients who had a diagnosis of a serious health condition, including cancer, only 27 percent had engaged in a conversation with their PCPs about end-of-life care wishes.

The result, McCutcheon Adams muses, is that “too many patients leave the advance directive discussion until the point of crisis, when they’re often working with (referral) providers who don’t know them.”

How PCPs can improve the conversation

Physicians can help patients feel more comfortable with the topic of advance directives by employing these strategies, advocates say:

  • Reach out before the annual visit. PCPs will see better results if patients are given educational information about advance directives before they arrive at the office.

  • Show the value. Present the topic of creating an advance directive as an important way to record patients’ personal views, while never giving patients the impression that creating one is required.

  • Make the conversation a continuum. Advance directives are meant to be an ongoing and changeable set of wishes, not a series of yes/no questions meant to last forever. Explain to patients that wishes should be revisited and updated on a regular basis. Your EHR may provide features for advance directives to be captured electronically. If not, capture them on paper and make sure patients retain a copy.

  • Above all, skip the medical jargon, McCutcheon Adams notes. How PCPs speak with patients is absolutely crucial. Instead of asking, “Would you want to be kept alive using a ventilator?” Try asking, “What really matters most to you about your health and abilities?”


What still needs to change

The biggest obstacle to the success of advance directives is capturing the information and making it available when and where it is needed. Advance directive forms, while well-intentioned, are often trapped in siloes where emergency personnel and hospitalists cannot access them. The longstanding mentality of keeping the forms in a safe location often thwarts access by the very emergency personnel who need the information most, McCutcheon Adams says.

“We still have this idea that these forms should be stored like diamonds in a safe deposit box. But the truth is, they only have use if they're accessible."

Read more: 7 strategies to get patients talking about end-of-life care

Online resources for your practice:

https://theconversationproject.org/resources/healthcare - This site contains how-to links for professionals on healthy language to use when communicating with patients, considerations for communicating with ethnic and LGBTQ populations, healthcare proxy forms and training/workshops based on end-of-life care.

www.caringinfo.org - This site provides links to advanced directive forms by state.

The Conversation Starter Kit This free downloadable kit, designed by the Institute for Healthcare Improvement for physicians and patients, is available in 14 languages and has been downloaded in more than 160 countries. The organization also offers a Conversation Starter Kit for people with Alzheimer’s disease or other cognitive illnesses.

Advance Care Planning: Healthcare Directives – This National Institute on Aging site provides helpful, patient-geared definitions of common medical terms, including CPR, ventilators, artificial nutrition or hydration and palliative care.

Pamela Tabar, CADDCT, CDP, is a healthcare writer based in Medina, Ohio.

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