Exploring what matters at end of life, resuscitation preferences, and the stability of those among older acute patients

BackgroundThe world’s population is ever changing. Challenges that come with an aging population could be related to multiple chronic diseases, frailty, and decline in cognitive function. However, common traits of the present aging population have been described as acceptance, adaptability, and resilience. Patient centered treatment and care that recognizes patient treatment preferences and delivers end of life care as preferred should be prioritized, regardless of age, comorbidities, frailty, or individual traits. Knowing what matters to each patient will be essential for clinicians to build a common platform from which pros and cons of treatment can be discussed. By this, the individual’s treatment preferences can be put in relation to their values.
In Denmark, older acutely admitted patients have an increased risk of dying within the following year, which supports the need for addressing end of life preferences such as resuscitation preferences. An acute hospitalization has been identified as a teachable moment, but barriers are present concerning the organizational setting, timing of conversations, and competences of healthcare professionals in discussing resuscitation preferences. Moreover, despite patients wanting to be a part of the resuscitation decision making, they are seldom involved. What matters to older people at end of life and in relation to resuscitation decision making is sparsely investigated in Denmark. Also, whether older patients’ resuscitation preferences made in the ED changes with time remains unexplored.


Aim
The overall aim of this thesis was to explore what matters at end of life and to investigate resuscitation preferences among older people and acutely admitted older patients.
 
Methods
In a first study, we used qualitative focus groups and in-depth interviews to explore what matters at end of life along with what may influence resuscitation preferences among older community-dwelling people, nursing home residents, and ED patients. We developed a questionnaire on what matters and may influence on older individuals’ resuscitation preferences. In a second study, we tested the questionnaire in pilot- and field-tests among older community-dwelling people and patients in the ED setting. In a third study in three EDs in Southern Denmark, we included older mentally competent ED patients to obtain their resuscitation preferences. We measured quality of life and functional level in the ED. Patients were followed up at one and six months after ED admission by telephone interview and mailed questionnaires to examine the stability and the patient’s ability to recall of their previously stated resuscitation preferences.
Results
A total of 31 older participants were interviewed in five focus groups and nine in-depth interviews. Three major themes emerged from the analysis; 1) Being independent is crucial for the future, 2) Handling and talking about the end of life, and 3) Conditions in everyday life that is significant (Paper 1). The validated questionnaire included items concerned physical function, coping, self-control in life, optimism, overall mood, quality of life, and social participation in life. Independence may help to explain what matters in relation to older ED patients’ resuscitation preferences (Paper 2).
In the third study, most patients stated an uncertain preferences for resuscitation of either “I think I want”, “I do not think I want”, or “I am not sure”. One in two older ED patients had “certain” preferences either definitely for or against resuscitation in their current state of health. Patients tended to change their preferences with time, especially when they did not have an initial certain preference for or against resuscitation. An interesting finding was that the majority of patients did not remember their resuscitation preferences at one and six months follow-up. However, patients who did not want to be resuscitated were more likely to remember their stated preferences (Paper 3).
 
Conclusion
In the qualitative study we found that older participants were willing to discuss end of life and that they welcomed a clinicians to initiate resuscitation discussions. We explored what mattered at end of life and what may influence older people’s resuscitation preferences, which were found to be individual. From the old’s perspectives, being independent was crucial for maintaining dignity and quality of life.
The qualitative findings of different levels of independence and physical functioning could influence resuscitation preferences differently, enhanced the understanding of the results from the questionnaire, where a substantial group of patients who did not report any limitations or problems in the questionnaire but still had a preference against resuscitation.
In the ED, the majority had uncertain preferences, but one in four had a certain preference of either definitely for or definitely against resuscitation. However, one in three of these “certain” patients changed and generally they could not remember their resuscitation preferences at follow-up. Interestingly, patients who did not wish to be resuscitated were more likely to remember their stated preferences. These findings underline the importance of continuous reevaluation of preferences over time, to secure that the documented preferences are aligned with the current patient preferences.