Surrogates’ experiences of engaging in POLST discussions for persons with advanced dementia

A study published by Hyejin Kim, PhD, RN, Christine Bradway, PhD, RN, Susan E. Hickman, PhD, and Mary Ersek, PhD, RN, in the Journal of the American Association of Nurse Practitioners examined, as its title suggests, “Surrogates’ experiences of engaging in POLST discussions for persons with advanced dementia,” an area in which little is known. More specifically, the study’s goal was to describe surrogates’ experiences related to communication with health care professionals (physicians or nurse practitioners in this study) during POLST discussions for individuals with advanced dementia.

Two important components of communication in the conceptual model that guided this study are information processing and relationship building between the health care professional and surrogate. Both information processing and relationship building in this model influence the quality of health care decisions and therefore patient outcomes, and were the focus of this study. The study took place in Pennsylvania, in which ten surrogates for advanced dementia patients agreed to participate, which meant completing a demographic questionnaire, having a face-to-face discussion about POLST with a physician or nurse practitioner, and being interviewed immediately after the POLST discussion. The interview was semi-structured, asking surrogates what they remembered about the conversation and what they found most helpful, “especially in terms of their understanding and to share anything that confused, concerned, or surprised them.” The surrogates were also asked to discuss “if they felt that the provider was sensitive to their needs during the meeting and to explain the basis for their response, and whether or not surrogates believed that providers understood what was important to them and their family member with dementia.”

Results. Nine of the ten surrogates described features of the providers’ communication that contributed to feeling respected and understood, providing one or more examples of how providers were sensitive, listened, and understood their needs. One surrogate reported feeling uncomfortable throughout the POLST conversation, not viewing the provider as sensitive to her needs or what was important to the patient (her mother), perceiving the provider and overwhelmed and distracted, and feeling that she, herself, was being pressured to agree to the do not resuscitate option. None of the surrogates found that the information the provider shared was confusing or surprising, and instead commented that the explanations were clear. In addition, several surrogates reported that they were not surprised by anything that was said during the POLST discussion because they had already thought about and discussed EOL care with providers, staff, and other family members.

Discussion and Implications. Although the study is limited because of the small, homogeneous sample size, it has important clinical implications. Health care professionals must consider carefully what clinical information is necessary and useful for surrogates to know and how to present this information. The processing of reviewing the POLST form is useful to health care professionals for providing structured discussion with the surrogate, and is also helpful for surrogates in processing the information discussed. Giving surrogates the opportunity to ask questions and explain their understanding of treatment options in their own words can reinforce surrogates’ understanding and feelings of being respected and understood.

Conclusions. Most surrogates had a positive experience in discussing POLST, which is a useful tool for both providers and surrogates in end-of-life conversations. Effective communication can result in surrogates feeling emotionally supported during the communication and decision-making process, and health care professionals are encouraged to “focus on developing expert communication skills for end-of-life care discussions.”

View article online (limited access).

Related: View webinar by Ken Brummel-Smith, MD, on our webinars page, or view in YouTube.