By Jeanie Davis
Patients with serious and life-threatening illnesses are faced with choices on the treatments they receive or elect not to receive. The treatment for a patient with advanced cancer is different than the treatment for a patient with advanced heart failure or chronic obstructive lung disease, says Mary Beth Billie, DNP, RN-BC, CCM, regional executive director of population health at Loyola University Health System. She speaks from family and professional experience.
However, the essence of a serious illness conversation is the same: What are the patient’s goals, values, and preferences? How do those inform their plan of care?
Ideally, these decisions are reached after engaging in a serious illness conversation with clinicians, Billie says. Many clinicians, including case managers, find these conversations difficult, as do patients and families.
“I’ve been a nurse for many years, and have always felt very strongly that we often miss the patient and family’s voice in their care,” she explains. “The true definition of patient-centered care is providing care in accordance with the patient’s goals, values, and preferences.”
As medical technology has prolonged life, clinicians often focus on what they can do, rather than asking the patient what he or she wants to do. “It’s very, very important to have that voice,” Billie adds.
In recent years, she has lost a sister to ovarian cancer, and a close family member to heart failure and kidney disease. She also completed her doctorate in nursing practice, creating a Capstone project on serious illness conversations.
What Patients Want
A report by the National Academy of Medicine (NAM), formerly the Institute of Medicine, about death and dying in America identified significant opportunities for improved communication with patients and families about their preferences for end-of-life care, says Billie. The reports suggested that clinician education and training did not provide them with the knowledge, skills, and attitudes to address the physical and emotional needs and concerns that dying patients and their families frequently experience, she explains. (View the report at: https://bit.ly/36nsbiK.)
When these conversations do not take place, the end-of-life experience often defaults to more care. Often, this is not what the patient and family would have preferred, Billie says. Most importantly, research shows that when these conversations take place earlier, it can decrease patient anxiety, improve their quality of life, reduce suffering, and result in better coping, higher patient satisfaction, and less nonbeneficial care and costs.
“Nurses and social workers can play a critical role in initiating these conversations to help patients identify their values and preferences for medical care, and prepare patients for further conversations with their physicians,” says Billie.
This applies to patients with serious illness with an expected life expectancy of 12-24 months, as with Billie’s own sister, who was treated for ovarian cancer for six years.
“In her last two years, as her condition continued to deteriorate, the conversation shifted to what were her goals of care, was she willing to undergo more chemotherapy for more time, and what was the tradeoff in terms of quality of life,” says Billie. Typically, this is not a single conversation; decisions evolve over time through thoughtful discussions.
That is a classic example of helping a patient understand their options, Billie explains. “Often, the patients don’t understand that they have options, including saying ‘I don’t want to be in the hospital anymore or continue aggressive treatment.’ For patients who select these choices, care coordinators and physicians can align the treatment plan to support their decisions. But without a serious illness conversation, the default is frequently more care. Patients should have a voice in making these decisions. They should know all their options, especially if they choose to end treatment.”
The NAM report shows that the vast majority of patients want to die at home, but often end up dying in a hospital or spending time in an ICU in the last months of their lives, Billie says. “Clearly, there’s a disconnect here. We often don’t start the discussion until the patient is quite far along that path.”
For example, Billie’s father completed a Physician Orders for Life-Sustaining Treatment (POLST) form stating he did not want artificial nutrition and other measures. When he was in the dying process, her brother was concerned that lack of feeding and fluids was hastening his death.
“Because we had this in writing, it was comforting to my brother,” says Billie. “This can become a very emotional experience. But by having that conversation, and putting those wishes in writing, it documents the patient’s wishes. This helps all family members get on the same page.”
This same document should be in the patient’s chart, she adds. “The document will guide the family and physician with the healthcare choices a patient wants in the last months and days of life.”
A Loyola Case Study
Billie created a program for her nurse and social worker staff to learn how to initiate serious illness conversations. The educational program was based on programs developed by the Veterans Administration and Ariadne Labs Serious Illness Care Program, and included a structured communications guide developed specifically for nurses and social workers. Care coordinator nurses and social workers first underwent a baseline education session, and received communications training. Weekly practice sessions with social workers helped nurses hone their skills and increase their confidence in initiating serious illness conversations.
“Key components of a serious illness conversation include eliciting what the patient understands about their condition, what are their worries if their health were to worsen, what trade-off they are willing to make for more time, and how much does their family and doctor know about their goals and preferences,” Billie explains.
Once these questions are answered, patients are in a better position to make informed decisions about how much aggressive treatment they are willing to undergo, and how and where they want to spend the last months of their lives, she says.
Billie offers these tips for initiating serious illness conversations:
• Engage the patient in these important questions: What do they understand about their health condition? What do they expect for the future related to their health condition? What would be important to them if they were to become sicker? What are they willing to go through for the possibility of getting more time? As you think about the future with your health, what are you most worried about? How much does your physician and family know about your wishes?
• Use reflective listening. “This is what I hear you saying. Am I understanding you correctly? Tell me more about what you mean by that,” Billie explains.
• Show empathy. Give the patient time to engage in the conversation. These are difficult and often emotional conversations.
“Nurses must learn to set their own beliefs aside,” she adds. “We must facilitate these conversations so we can understand the patient’s own belief system. It may not be aligned with our own beliefs, but that’s not our call.”
Over the 12-week program, the nurses’ knowledge and confidence increased significantly, Billie reports. Many patients opted for palliative care, and completed POLST forms documenting their wishes regarding life-sustaining care.
She views this as “a very positive experience,” says Billie. “These conversations are not necessarily comfortable, so it takes practice. The communication guide provides structure to help staff as they gain more confidence having these conversations.”
Nurses and social workers are perfectly poised to start these discussions, she adds. “The prognosis clearly falls in role of physician, but we’re helping the patient understand about their health condition. We’re helping them consider what’s important to them in quality of life.”
With a close family relative, she wishes that conversation would have taken place earlier. But as in many families, death was a taboo topic, seen as giving up. “My relative had very advanced heart disease and kidney disease, and he clearly didn’t want to go back and forth to the hospital,” Billie says. “He would do anything to stay at home. But that conversation never happened. In his last three months, he was either in the hospital or in a nursing home, and that’s where he died.”
There are ways to work with patients to improve that experience, she adds. Medicare continues to evaluate programs that can change that experience and support patients in achieving their goals of care. "It is essential because otherwise the default in the U.S. is hospital care, which often is not aligned with patients wishes, and very expensive,” she says.