New Tools to Manage End-of-Life Decisions

By Karen Appold

Physicians need to cultivate skills in conducting discussions on end-of-life care with patients, their families, and caregivers.

Many physicians take care of patients who are close to death. However, most have had little or no training on how to have a conversation about end-of-life care with a patient, his or her family, or caregivers.

Jennifer Rhodes-Kropf, MD, of Beth Israel Deaconess Medical Center (BIDMC) and Hebrew Senior Life and a faculty member at Harvard Medical School, is working to change that. She is providing tools to clinicians that detail how to address dreaded questions surrounding end-of-life decisions with patients and/or families of patients with dementia.

“How do you discuss goals of care with family members of patients with dementia who cannot communicate?” asks Rhodes-Kropf, who has developed a protocol as demonstrated in a teaching module with a video. “Family members who are confronted with the need to make a series of complicated and often overwhelming decisions can find the process incredibly stressful.”

The program is supported by a grant from the Picker Institute/Gold Foundation Graduate Medical Education Challenge Grant Program, which funds the research and development of innovative projects designed to integrate successful patient-centered care and best practices initiatives into the education of future practicing physicians.

Asking Tough Questions
According to Rhodes-Kropf, the prevalence of dementia is increasing because people are living longer as a result of medical advancements for other chronic illnesses. “Unfortunately, trainees and practitioners who care for older adults aren’t always encouraged to have end-of-life discussions nor are they taught how to carry them out. But these are conversations that should always occur in the case of advanced dementia, and our goal is to make sure they happen before a crisis.”

Rhodes-Kropf uses her video How Do You Have the Conversation? as a training tool in teaching sessions at BIDMC and four other Harvard-affiliated teaching programs. Clinician educators nationwide are now downloading Rhodes-Kropf’s video and teaching materials via a link on YouTube as well as via a link on the Picker Institute’s website.

In the six-minute video, Rhodes-Kropf speaks with the daughter of a woman with advanced dementia. They discuss different issues that are important for improving her mother’s quality of life and comfort, such as the following:

• Should her mother continue to go to the hospital for care or remain at the nursing home when she has an acute illness?
• Can any measures be taken to improve intake when her mother is eating and drinking less?

• Why are a feeding tube and resuscitation not recommended?

• Should her mother be given antibiotics for infections?

During training sessions, physicians view the video and discuss the research data that support a palliative care approach for this terminal illness. Then attendees are paired up to role-play as a physician and a patient caregiver. Next, trainees become familiar with an instrument that scores trainees on how well they have communicated with the caregiver during the role-play. A debriefing with the whole group of trainees follows the session.

Meeting With Family Members
Just as a physician learns the steps of any procedure, such as taking a blood pressure or performing a lumbar puncture, there are certain skill sets a physician should have to conduct a family meeting. Rhodes-Kropf maintains that when having an end-of-life conversation, it’s important to ensure a proper environment to avoid interruptions. There should be a structure in place to ensure that the meeting is held in a compassionate, informed, and professional way.

When a meeting begins, the physician should first introduce everyone in the room. Then the physician should note what will be covered in the meeting. He or she should also ask caregivers what they would like to cover and what their understanding of the illness is. Oftentimes, they are on a different page. “While this probably sounds like basic and common sense, it’s easy to forget the order of things which will make for a better conversation,” Rhodes-Kropf says. Physicians should present research data to support their recommendations.

Hospitalized patients are often cared for by medical professionals other than their primary care physicians. Unfortunately, under these conditions, if a conversation on goals of care did not occur in the outpatient setting, then family members must have these stressful conversations with a physician whom they are meeting for the first time. 

During this moment of crisis, Rhodes-Kropf encourages trainees to ask caregivers what the patient was like when he or she was younger and in good health. What were his or her values? Did he or she ever have a conversation about specific wishes at the end of life? Often such a conversation has not taken place. But perhaps earlier in life the patient knew someone who was sick and dying; what was his or her opinion of that patient’s end-of-life care?

Applying Lessons Learned
Tia Kostas, MD, GRECC, a fellow of the VA Boston Healthcare System and an associate physician at Brigham and Women’s Hospital in Boston, feels more empowered to have end-of-life conversations with patients and their families after attending Rhodes-Kropf’s teaching session on How Do You Have the Conversation?

“I learned how to relay information in lay terms and how to discuss sensitive subjects in an educated way with patients and their families,” Kostas says. “I became familiar with questions that might be asked during an end-of-life conversation. It is indeed an important discussion to have that requires setting an appropriate time and place.”

She found the role-playing exercise was beneficial as well. “Practicing the conversation with others was a good way to solidify the information we heard and made conversations easier to have with my patients or families,” Kostas continues.

In particular, Kostas found the discussion about tube-feeding data and why tube feeding is not beneficial for end-stage dementia patients to be quite useful. This has helped her to better communicate and respond to family members’ questions regarding this topic.

Conversing Before a Crisis Occurs
Rhodes-Kropf encourages patients and family members to have end-of-life conversations upstream of crises. If the physician has had a conversation with a patient while he or she was minimally cognitively impaired, what did he or she relay as far as the quality of life that to him or her is worth living? By not having this conversation prior to advanced dementia, family members can experience extreme anxiety and stress as they are burdened with having to guess what a loved one would prefer for end-of-life care.

Kostas says the lecture indeed made her realize that having an end-of-life conversation prior to a patient’s final days should be a priority. “If we feel more comfortable providing information, it will help us to initiate the conversation earlier,” she concludes.

This teaching initiative, How Do You Have the Conversation? is part of “The Conversation Project,” a national campaign geared to the general public that promotes having end-of-life conversations upstream of crises. Rhodes-Kropf is one of the founding members of the project, which has support from the Institute for Healthcare Improvement.

— Karen Appold is a freelance medical writer in Royersford, Pa.