By Christopher Cheney
End-of-life conversations need to be a routine part of care for adults, a hospice expert says.
Advance care planning and documentation provides guidance about end-of-life decisions. Advance care planning helps to make sure that a patient’s wishes on issues such a resuscitation are known by care teams and families before an end-of-life situation.
A new survey polled Americans about crucial advance care planning topics. The survey, which was commissioned by hospice provider VITAS Healthcare, polled 1,000 Americans in March 2022. The polling sample reflects the U.S. population based on gender, age, race and ethnicity, region, and education.
The survey generated several key findings:
- Most (71.4%) survey respondents reported that healthcare professionals never had brought up end-of-life planning and a majority (54.9%) reported that no one had brought it up.
- More people reported that they have documented their wishes this year (35.4% in 2022 versus 32% in the 2021 VITAS Healthcare survey). However, that is far less than those who say it’s important or very important (68%) and those who have discussed their wishes (55.5%).
- The top three reasons for not conducting advance care planning were not being sick or dying (34.7%), it is depressing to face (26.3%), and feeling not old enough to face these topics (21.9%).
- The top four reasons for conducting advance care planning were desire to not burden family members with making decisions (56.4%), it was done for financial or estate planning (47.5%), experience of having a loved one who died with their wishes documented (23.1%), and experience of having a loved one who died without their wishes documented (19.4%).
- Asian and Hispanic survey respondents were more likely to credit conducting advance care planning to clinicians raising the topic: Asian (24.2%), Hispanic (24.0%), White (11.8%), and Black (7.6%).
- Most survey respondents said they were comfortable having end-of-life planning with family members: partner or spouse (52.6%), children (32.4%), primary care physician (27.1%).
- Most survey respondents were comfortable having end-of-life planning discussions at home: home (60.1%); legal, financial, or other formal non-medical setting (26.0%), primary care clinic (24.6%).
Encouraging patients to conduct advance care planning
“Patients are ready for these conversations,” says Joseph Shega, MD, executive vice president and chief medical officer of VITAS Healthcare.
For clinicians, holding end-of-life discussions is a long-term effort, he says. “I encourage healthcare professionals to initiate advance care planning conversations by simply bringing it up with their patients. It’s important to note, however, that advance care planning is not a one-time task—it should be treated as an ongoing conversation that a patient has with their physician, family and loved ones. As healthcare professionals, it’s our responsibility to help encourage these conversations by normalizing them and making the conversations a routine part of care.”
Physicians have an important role to play and need to get more involved, Shega says. “Americans reported they would be comfortable having these conversations with their doctor—and many times are looking for their doctor to raise the issue. But many times, these conversations are not happening. In fact, 71% of respondents said that a physician has never broached the subject of advance care planning with them. That tells us there is a gap.”
VITAS Healthcare recommends that physicians keep the SPIKES method in mind when having advance care planning conversations with patients, he says:
- Setting: Choose a private setting where you can sit face-to-face with the patient and a family member or confidant. If the patient does not speak English, rely on a professional interpreter rather than a family member.
- Perception: Ask the patient how much they know, perceive, or suspect before you begin the conversation.
- Invitation: Subtly invite the patient to provide clues about willingness to receive more information. Ask whether they would like to talk about issues such as test outcomes and treatments. If the patient does not respond favorably, suggest that you talk again later that day or the next. Then follow through.
- Knowledge: Share information directly and simply. After you have opened the conversation, stop talking. Listen to the patient’s responses and take note of their emotions.
- Empathy: Identify with the patient’s emotional reaction in a kind way that suggests you understand and appreciate their response and are concerned about their future.
- Summation: Summarize the conversation and recommend hospice care.
“No matter what, every end-of-life conversation must be rooted in respect, compassion, and empathy. Healthcare professionals must take the time to understand the whole patient and consider how their age, race, ethnicity, religion, and relationships shape their views and values,” Shega says.
Why advance care planning matters
Advance care planning benefits patients, he says. “By knowing a patient’s wishes and values, healthcare professionals and families can ensure that the kind of care that person receives at end of life aligns with their goals, preferences, and spiritual beliefs.”
The absence of end-of-life planning is problematic for patients and their care teams, Shega says. “One of the most difficult situations is when the families we serve don’t know their loved one’s wishes or values. The VITAS survey found that almost a quarter of people (24.3%) had either a loved one who was seriously ill or one who had passed away without knowing their wishes or values for end-of-life care. VITAS believes it is vitally important that patients make their wishes known so that they can be honored, while also relieving the burden of decision-making on loved ones.”
Christopher Cheney is the senior clinical care editor at HealthLeaders.