The role of specialized outpatient palliative care in emergency advance directives: fewer hospitalizations, greater alignment with patient wishes | Scandinavian Journal of Trauma, Resuscitation and Emergency Medicine

In this retrospective longitudinal study, 359 patients who were cared for by the SOPC team at the University Hospital Düsseldorf from July 1, 2022 to June 30, 2023 were analyzed regarding the establishment of advance directives and their impact on the adherence to patients’ wishes concerning hospitalizations.

The previously described dominant condition in SOPC is cancer, while the most common non-oncological conditions are heart failure, followed by chronic obstructive pulmonary disease (COPD), renal failure, and dementia. Similarly, in this cohort, cancer accounted for 78.0% of cases. The average age of 73.6 (SD 13.4) years is consistent with other cohorts, where the average age is typically over 70 years, making our cohort comparable to others [14].

In this cohort, 46.8% of patients had a living will, and 74.9% had a lasting power of attorney. During the study period, only 32.6% (n = 117) of all patients had a medical emergency ID card with only 5.8% (n = 21) having it completed before the initiation of SOPC. This aspect prompted a revision of standard operating procedures within the observed SOPC team: Medical emergency ID cards are now systematically discussed with newly admitted patients, likely resulting in a higher prevalence of completed Emergency ID cards in the future.

Barriers to the completion of advance directives by patients have already been investigated in scientific studies. Some of these have been explored by Breen et al. [15] as part of their prospective observational study on the presence of living wills and powers of attorney, which included focus group interviews with physicians and nurses from a palliative care service. The study identified a general lack of awareness regarding the benefits of advance directives. In addition, there was misunderstanding about the fact that an advance directive is valid even without notarization. Another barrier was the fear that treatment could be unnecessarily limited. Patients also expressed concern about the potential for disempowerment despite retaining decision-making capacity, and for decisions to be made against their wishes [15]. Further research is needed to explore the reasons for this. However, our data suggest that SOPC teams might be helpful in breaking down these barriers as they facilitate the completion of advance directives, in our cohort primarily medical emergency ID cards.

Advance care planning focuses on goal-concordant care at the end of life for patients. It is a process, meaning that patients have several talks with trained professionals in order to understand and share one’s values and preferences. Making medical decisions and setting up advance directives should be discussed thoroughly and the process should be well-documented [16, 17].

Emergency physicians seem to see benefits in medical emergency cards, and when surveyed supported a wider introduction [18]. Unfortunately, to date their use is only established in a handful of German regions [19], and while similar emergency advance directives have been implemented elsewhere in Germany, scientific studies on the topic remain scarce [18]. In another survey of 383 emergency physicians, only 16.2% answered hat standardized emergency advance directives are available in the catchment area of their emergency department [20]. In the future, efforts should be made to connect patients and their care-takers as well as health-care providers to develop a universally established and accepted medical emergency ID. Additionally, public health campaigns should raise awareness about the availability of such emergency cards among the general public and actively encourage their utilization.

International studies have shown that SOPC helps reduce unnecessary hospital admissions and treatments [21, 22]. Due to a lower rate of utilization of inpatient healthcare services, the integration of SOPC services leads to a more cost-efficient attribution of resources [23]. However, German studies on the cost-effectiveness of SOPC compared to inpatient care are not yet available. Nonetheless, our study demonstrates a low hospitalization rate and adherence to patients’ wishes, as documented in medical emergency ID cards. This confirms the patient- and needs-oriented care provided by SOPC.

In the general population, hospitals represent the most common place of death, accounting for over 50% of cases, while the home setting is the second most common at only 21.7% [24]. In contrast, patients in SOPC are significantly more likely to die at home [7, 12]. Depending on how the home setting is defined across studies, this is achieved in approximately two-thirds of cases [12, 25, 26], and in a large analysis of 14,460 patients from 14 SOPC teams, 85.9% died at home and onl 7.7% of patients died in the hospital [12]. This is consistent with our data, as only 16.7% of the patients in our cohort died in a hospital.

Limitations

This study is based on a retrospective design, and therefore, the primary and secondary endpoints were adapted to available data. Due to partially insufficient documentation, not all data for the medical emergency ID cards or place of death could be collected retrospectively. It was not possible to further investigate why some patients did not create a medical emergency ID card or why patients who excluded hospital admission in their medical emergency ID card were hospitalized after all. Future research should include qualitative data to gain a nuanced understanding of barriers to the creation of advance care directives, especially medical emergency ID cards. Furthermore, the analysis is based on data from a single center, so the results provide only a trend for Germany, and future studies should involve a broader data set.