End-of-life discussions with patients and families can be difficult. It is the elephant in the room that physicians, case managers, and other healthcare professionals hesitate to discuss, says Antonia Ferrer, MPA, BSN, assistant director, Supportive Care Program at NYU Langone Health System in New York City.
In New York state, these discussions have become mandatory. New York’s Palliative Care Information Act of 2011 requires that every physician or nurse practitioner discuss palliative care and end-of-life options with every patient with terminal illness. (For more information on the law, visit: https://on.ny.gov/1rXS15e.)
As part of that process, every physician must indicate whether the patient’s death might come within six months. If the answer is “yes,” that prognosis must be shared with patient and family, and offer palliative care services.
“The law ensures that physicians are being honest with their patients,” explains Christine Wilkins, PhD, LCSW, who leads the Advance Care Planning Program at NYU Langone Health. “In the past, doctors didn’t routinely tell patients; they weren’t up-front. It’s never easy, but this legislation obliges providers to have these important conversations.”
“The worst thing is to hear a patient say they would have done things differently if they knew they had such a short time to live. Instead, they can decide what they truly want to do,” she adds.
Physicians and nurses receive little or no training in delivering the “bad news,” so the discussions can be difficult for all involved. Things can get complicated quickly: A patient might not want his or her spouse to know.
Ferrer’s team has developed a program to teach palliative and hospice care to case managers and social workers and to assist them in handling these situations. Their program gives team members a chance to practice these difficult interactions via role-playing.
Ferrer and colleagues have produced two videos to illustrate best practices for healthcare staff in facilitating these discussions. These videos are shown in a workshop for nurses and social workers.
In the videos, physicians (actors) are shown asking patients (also actors) the tough questions to learn their patients’ personal values, end-of-life preferences, goals of care, and more.
Then, the participants take turns role-playing as clinician and patient. “It’s an opportunity for staff to practice using these skills so they feel more confident in these situations,” says Ferrer.
Each participant receives a communication guide with specific language tips that will help. Simple statements like “Tell me more,” for example, can yield a “richer conversation,” Ferrer says. “These conversations aren’t easy; they take time, and you can’t do them in one or two meetings. You gather information over time.”
Case managers and clinicians must learn about cultural views that should be respected and provide clarification about the diagnosis, expectations, and hopes and goals.
“It’s important to ask questions like ‘What did you understand from what I just told you?’” says Ferrer. “We need to make sure they know exactly what’s going on so they can make informed decisions.”
Wilkins recommends that hospitals build out their electronic medical records systems to include note types that focus on advance care planning.
The hospital’s system features a “very robust” Advance Care Planning Navigator for documenting and retrieving advance care planning information, Wilkins says. This helps promote person-centered and coordinated care
For all their programs, the Langone team draws from an internationally recognized, evidence-based program that promotes person-centered, shared decision-making. “This program helps guide patients toward examining their own goals, beliefs, and values,” says Wilkins.
Asking questions like, “What is a really good day like?” helps a patient recognize what matters most to them, she says. “That helps them make these serious decisions.”
Talking to patients about their care and their options leads to improved quality of care — and quality of life, says Ferrer. Clinicians are better equipped to assess a patient’s care goals and develop a plan that honors those goals.
“This process gives patients a voice and a sense of control over what happens next,” she adds. “Often, this leads to more conservative, less costly treatment choices. We’ve found it reduces overall costs in end-of-life care.”