Normality and compassionate care: experiences from advanced cancer patients in their last time at home.

BACKGROUND: Many cancer patients prefer to receive palliative treatment at home, as it allows them to be in a familiar and comfortable environment. Integrating Advance Care Planning (ACP) into routine practice in primary healthcare helps patients and their relatives prepare for end-of-life (EoL) care in accordance with patients' preferences. This includes the option to spend their final days at home if desired. The aim of this study was to gain insights from experiences of advanced seriously ill cancer patients at home while receiving palliative treatment and being engaged in ACP within primary healthcare settings. METHOD: This study employed a qualitative design, utilizing individual, semi-structured interviews that were analysed through reflexive thematic analysis, employing an abductive approach with a latent-level focus. The study included interviews with 12 participants with cancer who were receiving palliative care, had an estimated lifetime under 3 months, and had undergone an organized ACP approach in primary healthcare, documented with a palliative plan. RESULTS: Participants emphasized the importance of (1) Preserving normality at home, maintaining a sense of routine, comfort, and familiarity in the face of present and future challenges. The top obstacles for success identified by participants included (1a) The challenge of deterioration and the dual aspects of (1b) The value and burden of family caregivers. Cancer treatment placed a significant demand on patients due to side effects. Family caregivers played a crucial role for participants, providing support in daily life and serving as a key factor in the overall decision to which extend they are able to involve in support and care at home in the future. (2) Compassionate health care personnel (HCP) made a difference by fostering a culture of understanding participants' concerns, fears, and preferences, which was a key element that built and maintained trust for the participants. (3) Preparing for the future, especially EoL discussions initiated by healthcare personnel, was deemed important but, at times, uncomfortable for participants as it confronted them with reality. Guidance from ACP provided them with a sense of certainty and control. CONCLUSION: Preserving normality at home, along with the desire to stay at home for as long as possible, is a crucial goal for advanced cancer patients. Consistent professional communication and care in primary healthcare play a key role in building and maintaining trust, as well as fostering a sense of certainty and control for the participants.

Standardizing Integrated Oncology and Palliative Care Across Service Levels: Challenges in Demonstrating Effects in a Prospective Controlled Intervention Trial.

INTRODUCTION: Patients with cancer often want to spend their final days at home. In Norway, most patients with cancer die in institutions. We hypothesized that full integration of oncology and palliative care services would result in more time spent at home during end-of-life. METHODS: A prospective non-randomized intervention trial was conducted in two rural regions of Mid-Norway. The hospitals' oncology and palliative care outpatient clinics and surrounding communities participated. An intervention including information, education, and a standardized care pathway was developed and implemented. Adult non-curative patients with cancer were eligible. Proportion of last 90 days of life spent at home was the primary outcome. RESULTS: We included 129 patients in the intervention group (I) and 76 patients in the comparison group (C), of whom 82% of patients in I and 78% of patients in C died during follow-up. The mean proportion of last 90 days of life spent at home was 0.62 in I and 0.72 in C (p = 0.044), with 23% and 36% (p = 0.073), respectively, dying at home. A higher proportion died at home in both groups compared to pre-study level (12%). During the observation period the comparison region developed and implemented an alternative intervention to the study intervention, with the former more focused on end-of-life care. CONCLUSION: A higher proportion of patients with cancer died at home in both groups compared to pre-study level. Patients with cancer in I did not spend more time at home during end-of-life compared to those in C. The study intervention focused on the whole disease trajectory, while the alternative intervention was more directed towards end-of-life care. "Simpler" and more focused interventions on end-of-life care may be relevant for future studies on integration of palliative care into oncology. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02170168.

Palliative care is an important part of cancer care to improve patients' quality of life. To be cared for and die in the preferred place are quality markers in palliative care. Patients with cancer often want to spend their final days at home. In Norway, most patients with cancer die in institutions. We hypothesized that full integration of cancer and palliative care would result in more time spent at home during end-of-life. An intervention that included information, education, and a standardized care pathway was developed and implemented in a region of Mid-Norway (the intervention region, I). A similar region served as comparison region (C). Adult patients with cancer treated with non-curative intent were eligible. Altogether, 129 patients in I and 76 patients in C were included in the study, of whom 82% in I and 78% in C died during follow-up. The mean proportion of time spent at home last 90 days of life was 0.62 in I and 0.72 in C (p = 0.044), and 22.6% and 35.6% (p = 0.073) died at home, respectively. A higher proportion died at home in both groups compared to pre-study national levels (12%). During the study period, C developed and implemented an alternative intervention to the study intervention, with the former placing more focus on end-of-life care compared to the she study intervention that focused on the whole disease trajectory. This may explain why the intervention did not result in more time spent at home during end-of-life as compared to C. "Simpler" interventions directed towards the study's primary outcome may be relevant for future studies on integration of palliative care into oncology.

Cancer patients have a reduced likelihood of dying in hospital with advance care planning in primary health care and a summarizing palliative plan: a prospective controlled non-randomized intervention trial.

BACKGROUND: Advance care planning (ACP) allows patients to define their goals and preferences. Spending more time at home and less time in the hospital, along with avoiding death in the hospital, are often considered desirable outcomes of palliative care (PC). In 2015, 36% of cancer patients died in the hospital and 13% died at home in Norway. METHOD: From 2015 to 2022, this prospective controlled non-randomized intervention trial observed 144 cancer patients with or without an organized ACP conversation in primary health care and a summarizing palliative plan (ClinicalTrials.gov Identifier: NCT02170168, 23 June 2014). The patients were identified through contact with the local cancer outpatient clinic or hospital-based PC team. RESULTS: A total of 128 patients died during the observation period. Of these, 67 patients had an organized ACP conversation and summarizing palliative plan (intervention (I) group) and 61 had not (control (C) group). Dying in the hospital was significantly less common for patients in the I group compared to the C group (17.9% vs. 34.4%; X2 (1, n = 128) = 4.55, p = 0.033). There were no differences between the groups in terms of where they spent their time in the last 90 days of life (home, nursing home, or hospital). Most patients (62%) preferred to die at home. The observed differences between the groups regarding preferred and actual places of death did not reach statistical significance. CONCLUSION: With organized ACP conversations in primary health care and a summarizing palliative plan, cancer patients died less often in the hospital in our observational study. A structured ACP approach integrating palliative care for cancer patients into primary health care can support patients´ preferences at the end of life.