Do Patients and Family Stall End-of Life-Care Talks?

Action Points

  • Hospital-based clinicians in Canada cite patients and family members as the greatest barriers to goals of care and end-of-life decision making in seriously ill patients.
  • Hospital-based clinicians rate their own communication skills and system factors as relatively less significant barriers to goals of care and end-of-life decision making.

Patients and their family members were cited as the biggest barriers to end-of-life decision making, according to a survey of hospital-based physicians and nurses.

Staff at 13 teaching hospitals in Canada rated 21 barriers to goals of care discussions on a 7-point scale (7=extremely important). They named family member and patient reluctance to accept a poor prognosis as major barriers (mean scores of 5.8 and 5.6, respectively), as well as family member and patient difficulty understanding the limitations and complications of treatments (mean score of 5.8 for both), reported John You, MD, of McMaster University, Ontario, and colleagues.

However, the surveyed clinicians rated their own communication skills and system factors as far less significant obstacles to facilitating end-of-life discussions, the authors wrote in JAMA Internal Medicine.

Other leading barriers cited by the doctors and nurses were family member disagreements about the goals of care and patient difficulty understanding the limitations and complications of life-sustaining therapies.

“Desire to maintain hope” and “Desire to avoid being sued” were rated as the least important obstacles to end-of-life discussions and decisions.

In an accompanying editorial, cardiologist and ethics consultant James N. Kirkpatrick, MD, of the University of Pennsylvania Perelman School of Medicine in Philadelphia, said that the survey results might be interpreted by some as clinicians blaming the patient.

But he pointed out that “despite barriers, the authors found that clinicians were willing to engage in goals of care communication and decision making … Importantly, both nurses and physicians indicated that all types of healthcare professionals, not just physicians, have legitimate roles to play in goals of care discussions.”

In an interview with MedPage Today, Kirkpatrick said medical professionals who routinely treat critically ill patients would benefit from goal of care discussion training, but many are not getting it.

“We tend to get frustrated when we think that family members and patients don’t understand the prognosis or that they can’t come to grips with it,” Kirkpatrick said. “But we also often don’t understand or appreciate how difficult it is to do this.”

Kirkpatrick noted that end-of-life discussions have become more important as high-tech interventions that prolong life have proliferated in hospitals.

In a 2013 survey of hospitalized, critically ill, elderly patients and their family members, the Canadian Researchers at the End of Life Network (CARENET) reported that patients and family members often expressed preferences for limiting end-of-life medical treatments, but physicians’ orders for life-sustaining treatments such as cardiopulmonary resuscitation were frequently inconsistent with these wishes.

The researchers concluded that communication with healthcare professionals and documentation of these preferences remains inadequate.

In the current study, You’s group surveyed 525 nurses, 484 resident physicians, and 260 staff physicians. Questionnaires were completed from September 2012 to March of 2013. The overall response rate was 77.7%.

All three groups cited family member-related and patient-related factors as the most important barriers to goals of care discussions.

On the 7-point scale, disagreement among family members about goals of care and patient incapacity to make goal of care decisions received mean scores of 5.8 and 5.6, respectively.

Language barriers, cultural differences, lack of substitute decision maker, and uncertainty about who the substitute decision maker would be all scored around 5.

Lack of time, disagreement among the health team about goals of care, lack of a written advance directive, and lack of training in end-of-life discussions all had mean scores between 4 and 5.

‘Desire to avoid being sued’ was considered the least important barrier (mean score of 3.5).

When asked to rate their own willingness to engage in discussions and decision making on end-of-life care, staff physicians and residents were more willing than nurses and more willing than residents, the authors reported. Nurses said they felt neither supported nor unsupported in their work environment to engage in communication and decision making about goals of care.

“Our findings underscore and support recent calls for more and better training for all clinicians in having end-of-life discussions,” the researchers wrote. “Communication skills training and tools that enhance clinicians’ ability to build rapport, listen with empathy, and discuss prognosis — along with its inherent uncertainty — could help clinicians to better support patients and families through decisions about goals of care.”

Kirkpatrick noted that this training may be particularly useful for nurses who often have the most contact with patients and family members.

Just 9.6% of nurses in the study reported having formal training in goals of care discussions compared with 35% of resident physicians and 28.5% of staff physicians.

The researchers concluded that in addition to better training, promising interventions include conversation guides for end-of-life discussions, decision aids to support advance care planning, and greater involvement of the healthcare team.

“Given the diversity of barriers to goals of care discussions, any single intervention is unlikely to succeed on its own,” You and colleagues wrote. “Multifaceted interventions directed at patients and their families, clinicians, and the healthcare system will likely be necessary to achieve this important goal.”

The study had some limitations. The findings may not apply to institutions outside of Canada, to nonteaching hospitals, or to outpatient settings. Also, the authors asked respondents to rate the importance of barriers on the basis of their recall of past experience.

“It is possible that participants were disproportionately influenced by infrequent but memorable interactions with patients and families when rating the importance of barriers,” they explained.

This study was funded by the Canadian Institutes for Health Research, Hamilton Health Sciences, and the Heart and Stroke Foundation, Ontario, Canada.

You and co-authors disclosed no relevant relationships with industry.

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