Enhancing Palliative Care in Primary Healthcare for Patients with Cancer: Integrating Advance Care Planning to Support Home-Based Care at the End-of-Life

Abstract

According to the World Health Organization (WHO), cancer is a significant global health issue and one of the leading causes of death worldwide. An increasing number of cancer patients, live longer with modern oncology treatment, supported by palliative care (PC) to improve the quality of life (QoL) of patients and their families. Advance care planning (ACP) involves planning for future healthcare and communicating the person’s preferences. Robust evidence supports the benefits of ACP within person-centred end of life (EoL) care but it is still under-utilised in clinical practice. Responsibility for the ACP process should be shared between primary and specialist healthcare. To decide when, where, and how to initiate the ACP process at individual patient level and how to conduct it, is challenging. The impact on favoured outcomes that are in line with patients preferences is dependent on both, implementation on system level and execution at individual patient level. Enhancing our understanding of patients’ preferences and their experiences with ACP, coupled with insights into the impact of ACP, can cultivate greater empathy for individuals nearing EoL. Additionally, this knowledge can empower policy makers to more effectively allocate healthcare resources to meet the PC needs of patients, family caregivers, and healthcare providers. In this thesis, comprising three papers (I-III), a comprehensive investigation of advanced cancer patients was conducted using both qualitative and quantitative research methods. The research explored the home as the place of care before death and the place of death itself. Specifically, it delved into the experiences of patients at home and evaluated the effects of implementing and conducting ACP conversations and documenting conclusions within patients’ PC plans. Paper I retrospectively investigated the impact of ACP conversations in primary healthcare on both the number of days spent at home at EoL and the frequency of home deaths for 250 palliative cancer patients who died in the Romsdal region between September 2018 and August 2020. Cancer patients who had undergone an ACP conversation in primary healthcare (n=125) were likely to spend around 10 more days at home (DAH) during the last 90 days of life and they had a four times greater probability of dying at home; while 50% of patients with advanced cancer had ACP conversations in primary healthcare, 66% of these had the ACP conversation together with their general practitioner (GP). Paper II analysed prospectively the home as the place of care before death and the location of death for 128 advanced cancer patients, based on whether they had ACP conversations with a summarising PC plan in a primary healthcare setting (n=67). Additionally, the study assessed the preferred and actual place of death. In contrast to the results in Paper I, patients who had ACP conversations and a PC plan in primary healthcare did not spend more time at home at EoL. The number of home deaths was similar in the ACP and control groups. However, the overall number of home deaths was high (30%) for both groups, contrasting with the national average among cancer patients in Norway, which was around 16% in 2021. Patients with ACP conversations and PC plans less often died in hospital. Among patients stating a preferred place of death (PPOD) during the last statement in the observation period, 62% expressed a desire to die at home. Overall, 33% of the patients died at their preferred place, 40% in the ACP group vs. 27% in the control group. In Paper III, interviews with 12 advanced cancer patients gave insights from their experiences at home while receiving palliative treatment and engaging in ACP in primary healthcare settings. Participants emphasised the importance of (1) preserving normality at home which was influenced by (1a) the challenge of deterioration and the aspects of (1b) the value and burden of family caregivers. (2) Compassionate healthcare personnel made a difference by fostering a culture of understanding participants’ preferences and concerns. (3) Preparing for the future, was considered important, especially the EoL discussions initiated by healthcare personnel (HCP). Guidance from the ACP process provided participants with a sense of certainty and control. The results of this dissertation indicate that cancer patients with ACP in primary healthcare more frequently died at home or in nursing homes. The results varied regarding the extent to which ACP was associated with time spent at home and home death, which can be explained by the differences in the patient samples and study designs between study I and study II. The success of ACP in primary healthcare largely depends on building strong relationships, especially between community cancer nurses and patients with advanced cancer. GPs play an important role in the ACP process. However, the ACP process and the formulation of a summarising PC plan are not always visible to patients. Discussing sensitive topics related to EoL preparation can be challenging for patients, family members and HCPs. Nevertheless, compassionate care and continuous communication emerge as crucial factors for both time at home and death at home. ACP conversations are associated with increased time spent at home and a greater likelihood of dying at home. A common PC plan for patients and HCPs might prevent hospital admissions in the EoL phase. A shared responsibility between primary and specialist healthcare may be a central component in planning and coordinating home-based palliative services.