Patient Autonomy and Wishes for Emergency Treatment at End-of-Life: End-of-Life Conversations and Advance Care Planning

Background
The interest in talking with patients nearing end-of-life and defining their wishes for treatment and care at end-of-life (EOL) through advance care planning is increasing, and several advance care planning (ACP) tools have been developed. However, implementing and conducting conversations about EOL and advance care planning is still challenging and to date, the benefits have not been clearly defined or established.

Aim
The overall aim of this PhD project was to:

•investigate the challenges, benefits or disadvantages of ACP and conversations about wishes for treatment in emergency situations for patients nearing EOL, their relatives and healthcare professionals. 

Each sub-study having an aim that contributed to the overall aim.

Methods
This thesis was based on four sub-studies focusing on different aspects regarding EOL and advance care planning. Different approaches were used in the four sub-studies.

Sub-study 1: Retrospective medical record review. The review included all participants from the Danish POLST study, who had filled out a Danish POLST form two years prior during a conversation about treatment at EOL with a physician and, if possible, a relative. 

Sub-study 2: Interviews. Semi-structured interviews with 29 relatives, who 2 years prior had participated in the conversation about treatment at EOL with their loved one (the patient).

Sub-study 3: Retrospective hospital records review. The review included all patients who were refused or admitted to intensive care therapy after being assessed by an intensivist at Kolding Hospital over a one-year period.

Sub-study 4: Questionnaire survey. A questionnaire regarding what facilitates and what hinders physicians conducting the conversation about wishes treatment at EOL with patients nearing EOL. The questionnaire was send to physicians from both hospitals and general practitioner clinics in the Region of Southern Denmark.

Results
Sub-study 1: All in all 119 medical journals were reviewed. A total of 2,148 contacts with the healthcare system were registered during the period from completing the POLST document to the two-year follow-up. Of these contacts, 31 were assessed as ‘relevant’ (an episode in which they were not capable of expressing their wishes regarding treatment and care). In most cases (88%), the treatment received was in accordance with the patient’s wishes documented in the POLST form and medical records.

Sub-study 2: The interviews revealed two themes: ‘gives peace of mind’ and ‘enables more openness and common understanding of EOL’. Relatives found that conversations about EOL could help ensure that patients were heard and enhance their autonomy. These conversations relieved the relatives of responsibility by clarifying or confirming the patients’ wishes, and they also made the relatives reflect on their own wishes for EOL. Moreover, they helped patients and relatives address other issues regarding EOL and made wishes more visible across settings.

Sub-study 3: In the study period, 571 patients were admitted to the intensive care unit, and 106 were refused admission. Refused patients had a statistically significantly higher median age as well as a higher (worse) Clinical Frailty Scale score.

Sub-study 4: Of the 783 (25%) physicians who responded to the survey, 617 worked at a hospital department and 120 were from general practice clinics. The results showed that senior physicians, GPs and physicians working in a medical department feel best equipped to conduct the conversation. Moreover, senior physicians pointed to their experience as physicians as being of great importance to conduct the conversation, whereas junior physicians found training in conducting the conversation to be an important factor.

Conclusions
Initiating and conducting conversations about wishes for treatment at EOL and planning treatment and care through ACP can potentially have great benefits for patients, relatives and healthcare professionals.
Having a conversation with a physician, and if possible a relative, about EOL and having these wishes documented in an ACP form based on the patient’s values and preferences enhances patients’ autonomy, helps avoid unwanted treatment, relieves relatives from feeling responsible for making decisions on behalf of their loved ones and helps guide healthcare professionals when deciding on treatment and care for patients who are not capable of expressing their own wishes.
However, discussing and planning future treatment and care at EOL is a difficult task and is not performed systematically in the Danish healthcare system. Several challenges in initiating and conducting conversations about EOL were also highlighted by the results of the four sub-studies.