Hospital-based clinicians see factors related to patients and family members as the most important barriers to end-of-life discussions, according to a recent study. To facilitate these conversations, institutions can:
• Provide communication training.
• Improve patient and family preparedness to participate in these conversations.
• Provide patients and family members with decision aids.
Hospital-based clinicians see factors related to patients and family members as more important barriers to end-of-life discussions than clinician and system factors, according to the DECIDE study.1
“Essentially, these important conversations are often being neglected. There are a number of factors responsible for this,” says study author James Downar, MD, CM, MHSc, FRCPC. Downar is an assistant professor in the Divisions of Critical Care and Palliative Care at the University of Toronto in Ontario, Canada.
Researchers asked 1,246 clinicians (512 nurses, 484 residents, and 260 staff physicians) to rate the importance of 21 barriers to goals-of-care discussions with seriously ill hospitalized patients and their families. Clinicians reported that the major patient- and family-related factors that hinder end-of-life discussions are difficulty accepting a poor prognosis; difficulty understanding the limitations and complications of life-sustaining treatment; disagreement among family members about goals of care; and a patient’s incapacity to make decisions.
“To say that something is patient- and family-related is not to say that it is their fault,” says Downar. The participants’ suggestions for addressing these issues — communication training and decision aids — suggest they were concerned about system factors. “The reason that patients and family members have difficulty accepting a poor prognosis or the limitations of treatment is because the system does not meet their needs,” says Downar. “The findings of the DECIDE study are consistent with previous work in this area.”
The 2014 ACCEPT study looked at patient and family member perceptions of advance care planning discussions.2 Researchers asked 233 older adult patients and 205 family members at nine Canadian hospitals about elements of goals-of-care discussions. Both groups identified these elements as being the most important to address: Preferences for care in the event of life-threatening illness, values, prognosis, fears or concerns, and questions about goals of care.
“It showed that physicians, nurses, patients, and family members were all focused on the same issues — goals, values, and prognosis — when talking about advance care planning,” says Downar.
Implications for ethics consults
The 2015 study was primarily focused on typical conversations about goals of care, rather than situations of conflict that require a third party to become involved. “We were partially looking at reasons why communication does not take place, whereas ethicists are typically consulted to help in cases where communication has taken place but has broken down,” Downar explains.
However, the lessons from this study could be applied to the normal practice of ethicists when the communication breakdown is related to these same factors. “Ethicists will typically probe for differences in understanding between clinicians, patients, and family members,” Downar says. Factual misunderstandings can be easily addressed, whereas disagreements about values and goals may be more challenging to resolve. Downar says the following resources are needed to facilitate goals-of-care discussions:
• Communication training.
“This is going to be a vital part of the solution,” says Downar. “The authors are working on training to improve rapport-building, empathic listening, and explanations of prognosis.”
• Interventions that improve patient and family preparedness to participate in these conversations.
“The current model of advance care planning focuses on decisional readiness — the clear communication of values in the context of hypothetical, but realistic, situations,” says Downar. The SpeakUp campaign in Canada is an example of such an initiative. (For more information, go to www.advancecareplanning.ca.)
• Decision aids, such as educational videos or booklets, customized for the particular situation of the patient or family member.
“These support patients and family members tasked with making difficult decisions at the end of life,” says Downar.
The study shows that healthcare providers feel that the largest barrier to end-of-life conversations has to do with patient and family discomfort around end of life, says Kate M. Lally, MD, director of palliative care at the 275-bed, CNE-owned Kent Hospital in Warwick, RI. “Patients and families often struggle with understanding a poor prognosis or understanding the limits of CPR,” she says.
Communication within a family is often a barrier. “When patients cannot speak for themselves, families are often stressed. Difficult interpersonal dynamics come out,” says Lally. It is important to know who speaks for the patient, and to know that the patient has discussed their end-of-life wishes with that person, she says.
“Families may divide into factions, with differing opinions about what a patient would have wanted,” says Lally. Doctors often try and provide some hope in giving a poor prognosis by admitting they can never be 100% sure of an outcome.
“Patients will sometimes hold on to that sliver of hope, and opt for painful treatments that may not benefit them and may harm them in an attempt to prolong their lives,” says Lally.
Lack of skill is factor
Clinicians perceived their own skills and system factors as less important barriers to end-of-life discussions, according to the study.1 “While difficulty accepting a poor prognosis and difficulty understanding the limits of life-sustaining treatments are clearly barriers to having these conversations, I also suspect that lack of skill on the providers’ part plays a bigger role than the clinicians acknowledge,” says Lally.
If patients and families were asked to identify barriers to end-of-life conversations, they might respond that providers are the ones uncomfortable with such discussions, and that providers never asked them their preferences, she says.
“Doctors think that patients are the problem. I suspect if you ask patients, they will think that doctors are the problem,” says Lally. “I think the real problem is a failure of communication between the doctors and patients.”
Often, conflicts over life-sustaining treatments arise because of a breakdown in communication between patients, families, and providers. “The main role of ethicists could be to help rebuild the bridges of communication,” suggests Lally.
Lally attends many family meetings to discuss treatment options about patients with a poor prognosis. “I find that if the meeting starts with the doctor having a prolonged monologue about the patient’s prognosis and treatment options, then the meeting will not go well,” she says.
During a recent meeting about a patient with advanced dementia, the intensive care unit doctor spent about 20 minutes discussing all of the patient’s medical issues. “When the doctor talked about how the patient wasn’t eating, the family asked about a feeding tube. When he told them the kidneys were failing, they asked about dialysis,” says Lally.
After the physician finished talking, Lally asked the family how they felt; they reported feeling overwhelmed by the information, which was difficult to hear. “I then asked how they felt the patient has been doing over the last six months at home,” she says. The family noted significant weight loss, and loss of the ability to speak and walk independently.
“They acknowledged he wasn’t doing well,” says Lally. “We then talked about the dying process with dementia, and how the decline they had been noticing was their father approaching the end of his life.” The discussion then turned to the patient’s kidney failure and inability to eat. “I helped them to see that these problems were markers of the same disease that had been affecting their father for many years, and that we were now at a point that he was dying,” says Lally. After the family realized this, they were able to shift their focus to comfort, and no longer requested interventions that were very unlikely to help him.
Lally usually starts family meetings by asking the family how they feel the patient is doing and what they understand about what is going on. “By listening to the family and understanding their frustrations, I am often able to better guide the meeting,” she says. “The best thing ethicists can do is to encourage our medical teams to listen more and talk less in family meetings.”
- You JJ, Downar J, Fowler RA, et al. Barriers to goals of care discussions with seriously ill hospitalized patients and their families: a multicenter survey of clinicians. JAMA Intern Med 2015; 175(4):549-556.
- You JJ, Dodek P, Lamontagne F, et al. What really matters in end-of-life discussions? Perspectives of patients in hospital with serious illness and their families. CMAJ 2014; 186(18):E679-E687.
- James Downar, MD, CM, MHSc, FRCPC, Assistant Professor, Divisions of Critical Care and Palliative Care, University of Toronto, Ontario, Canada. Email: email@example.com.
- Kate Lally, MD, FACP, Director of Palliative Care, Care New England/Medical Director, VNA of Care New England Hospice, Warwick, RI. Phone: (401) 737-7000 ext. 31590. Fax: (401) 736-1963. Email: KMlally@CareNE.org