Perspectives of bereaved relatives of patients with haematological malignancies concerning preferred place of care and death: A qualitative study.

BACKGROUND: People with haematological malignancies have different end-of-life care patterns from those with other cancers and are more likely to die in hospital. Little is known about patient and relative preferences at this time and whether these are achieved. AIM: To explore the experiences and reflections of bereaved relatives of patients with leukaemia, lymphoma or myeloma, and examine (1) preferred place of care and death; (2) perceptions of factors influencing attainment of preferences; and (3) changes that could promote achievement of preferences. DESIGN: Qualitative interview study incorporating 'Framework' analysis. SETTING/PARTICIPANTS: A total of 10 in-depth interviews with bereaved relatives. RESULTS: Although most people expressed a preference for home death, not all attained this. The influencing factors include disease characteristics (potential for sudden deterioration and death), the occurrence and timing of discussions (treatment cessation, prognosis, place of care/death), family networks (willingness/ability of relatives to provide care, knowledge about services, confidence to advocate) and resource availability (clinical care, hospice beds/policies). Preferences were described as changing over time and some family members retrospectively came to consider hospital as the 'right' place for the patient to have died. Others shared strong preferences with patients for home death and acted to ensure this was achieved. No patients died in a hospice, and relatives identified barriers to death in this setting. CONCLUSION: Preferences were not always achieved due to a series of complex, interrelated factors, some amenable to change and others less so. Death in hospital may be preferred and appropriate, or considered the best option in hindsight.

Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK.

The Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team aiming to provide round-the-clock advice and care, including specialist interventions, in the home, community hospitals and care homes. Of 389 referrals in 2010/11, about 85% were for cancer, from a population of about 155 000. Using a mixed method approach, the evaluation comprised: a retrospective analysis of secondary-care use in the last year of life; financial evaluation of the MMSPCS using an Activity Based Costing approach; qualitative interviews with patients, carers, health and social care staff and MMSPCS staff and volunteers; a postal survey of General Practices; and a postal survey of bereaved caregivers using the MMSPCS. The mean cost is about 3000 GBP (3461 EUR) per patient with mean cost of interventions for cancer patients in the last year of life 1900 GBP (2192 EUR). Post-referral, overall costs to the system are similar for MMSPCS and hospice-led models; however, earlier referral avoided around 20% of total costs in the last year of life. Patients and carers reported positive experiences of support, linked to the flexible way the service worked. Seventy-one per cent of patients died at home. This model may have application elsewhere.

Preferred Place of End-of-Life Care Based on Clinical Scenario: A Cross-Sectional Study of a General Japanese Population.

In Japan, which has an aging society with many deaths, it is important that people discuss preferred place for end-of-life care in advance. This study aims to investigate whether the preferred place of end-of-life care differs by the assumed clinical scenario. This clinical scenario-based survey used data from a nationwide survey conducted in Japan in December 2017. Participants aged 20 years and older were randomly selected from the general population. The survey contained questions based on three scenarios: cancer, end-stage heart disease, and dementia. For each scenario, respondents were asked to choose the preferred place of end-of-life care among three options: home, nursing home, and medical facility. Eight hundred eighty-nine individuals participated in this study (effective response rate: 14.8%). The proportions of respondents choosing home, nursing home, and medical facility for the cancer scenario were 49.6%, 10.9%, and 39.5%, respectively; for the end-stage heart disease scenario, 30.5%, 18.9%, and 50.6%; and for the dementia scenario, 15.2%, 54.5%, and 30.3% (p < 0.0001, chi-square test). The preferred place of end-of-life care differed by the assumed clinical scenario. In clinical practice, concrete information about diseases and their status should be provided during discussions about preferred place for end-of-life care to reveal people's preferences more accurately.

Preferred place of death and end-of-life care for adult cancer patients in Iran: A cross-sectional study.

Background: More than 50,000 deaths in terms of cancer occur annually in Iranian hospitals. Determining the preferred place of end-of-life care and death for cancer patients in Iran is a quality marker for good end-of-life care and good death. The purpose of this study was to determine the preferred place of end-of-life care and death in cancer patients. Method: In 2021, the current descriptive cross-sectional investigation was carried out. Using the convenience sample approach, patients were chosen from three Tehran referral hospitals (the capital of Iran). A researcher-made questionnaire with three parts for demographic data, clinical features, and two questions on the choice of the desired location for end-of-life care and the death of cancer patients served as the data collecting instrument. Data were analyzed using SPSS software version 18. The relationship between the two variables preferred place for end-of-life care and death and other variables was investigated using chi-square, Fisher exact test, and multiple logistic regression. Result: The mean age of patients participating in the study was 50.21 ± 13.91. Three hundred ninety (69.6%) of the patients chose home, and 170 (30.4%) patients chose the hospital as the preferred place of end-of-life care. Choosing the home as a preferred place for end-of-life care had a significant relationship with type of care (OR = .613 [95% CI: 0.383-0.982], P = .042), level of education (OR = 2.61 [95% CI: 1.29-5.24], P = 0.007), type of cancer (OR = 1.70 [1.01-2.89], P = .049), and income level (Mediate: (OR: 3.27 (1.49, 7.14), P = .003) and Low: (OR: 3.38 (1.52-7.52), P = .003). Also, 415 (75.2%) patients chose home and 137 (24.8%) patients chose hospital as their preferred place of death. Choosing the home as a preferred place of death had a significant relationship with marriage (OR = 1.62 [95% CI: 1.02-2.57], P = .039) and time to diagnostic disease less than 6 months (OR = 1.62 [95% CI: 0.265-0.765], P = .002). Conclusion: The findings of the current research indicate that the majority of cancer patients selected their homes as the preferred location for end-of-life care and final disposition. Researchers advise paying more attention to patients' wishes near the end of life in light of the findings of the current study. This will be achieved by strengthening the home care system using creating appropriate infrastructure, insurance coverage, designing executive instructions, and integration of palliative care in home care services.

The importance of identifying preferred place of death.

OBJECTIVES: The majority of people would prefer to die at home and the stated intentions of both statutory and voluntary healthcare providers aim to support this. This service evaluation compared the preferred and actual place of death of patients known to a specialist community palliative care service. DESIGN: All deaths of patients (n=2176) known to the specialist palliative care service over a 5-year period were examined through service evaluation to compare the actual place of death with the preferred place of death previously identified by the patient. Triggers for admission were established when the patients did not achieve this preference. RESULTS: Between 2009 and 2013, 73% of patients who expressed a choice about their preferred place of death and 69.3% who wanted to die at home were able to achieve their preferences. During the course of their illness, 9.5% of patients changed their preference for place of death. 30% of patients either refused to discuss or no preference was elicited for place of death. CONCLUSIONS: Direct enquiry and identification of preferences for end-of-life care is associated with patients achieving their preference for place of death. Patients whose preferred place of death was unknown were more likely to be admitted to hospital for end-of-life care.

Preferred Place of Care and Death in Terminally Ill Patients with Lung and Heart Disease Compared to Cancer Patients.

OBJECTIVES: The dual aim of this study is, first, to describe preferred place of care (PPOC) and preferred place of death (PPOD) in terminally ill patients with lung and heart diseases compared with cancer patients and second, to describe differences in level of anxiety among patients with these diagnoses. BACKGROUND: Previous research on end-of-life preferences focuses on cancer patients, most of whom identify home as their PPOC and PPOD. These preferences may, however, not mirror those of patients suffering from nonmalignant fatal diseases. DESIGN: The study was designed as a cross-sectional study. SETTING: Eligible patients from the recruiting departments filled in questionnaires regarding sociodemographics, PPOC and PPOD, and level of anxiety. RESULTS: Of the 354 eligible patients, 167 patients agreed to participate in the study. Regardless of their diagnosis, most patients wished to be cared for and to die at home. Patients with cancer and heart diseases chose hospice as their second most common preference for both PPOC and PPOD, whereas patients with lung diseases chose nursing home and hospice equally frequent as their second most common preference. Regardless of their diagnosis, all patients had a higher level of anxiety than the average Danish population; patients with heart diseases had a much higher level of anxiety than patients with lung diseases and cancer. CONCLUSION: Patient preferences for PPOC and PPOD vary according to their diagnoses; tailoring palliative needs to patients' preferences is important regardless of their diagnosis.

The Bromhead Care Home Service: the impact of a service for care home residents with dementia on hospital admission and dying in preferred place of care.

People with dementia have worse outcomes associated with hospital admission, are more likely to have interventions and are less likely to be offered palliative care than people without dementia. Advance care planning for care home residents has been shown to reduce hospital admissions without increasing mortality. Studies have shown that staff confidence in managing delirium, a common reason for admission, improves with training. A service combining education for care home staff and advance care planning for care home residents with dementia was introduced to care homes in Boston, UK. There were improvements in staff confidence in recognition, prevention, management and knowledge of factors associated with delirium and dysphagia. 92% of carers rated the service >9/10. Admissions fell by 37% from baseline in the first year and 55% in the second and third years. All but one resident died in the preferred place of care.

Emergency healthcare planning within County Durham and Darlington NHS Foundation Trust: a case study of innovative practice.

The number of people in the UK living with significant, life-limiting health problems and severe disabilities is rising. As a result, robust proactive care planning and good communication of care plans across care boundaries are an increasing priority. Emergency healthcare plans are proactive care plans that are designed to communicate management plans for predictable health events and to facilitate communication and documentation of individualised treatment plans. This was evaluated within our trust through the surveying of attitudes in primary and secondary care, identifying support before implementation of emergency healthcare plans and subsequent review of outcomes. We implemented 25 plans in patients with advanced dementia, metastatic cancer, and end organ failure. All died in their preferred place of care, with most dying in the community. At 30 days after discharge, no patients had been readmitted to secondary care; at 90 days one patient had been readmitted. There seems to be substantial support for emergency healthcare plans among healthcare staff. These plans have potential to improve care for patients approaching the end of life, by supporting patients to be treated in their preferred place of care, reducing unnecessary admissions and improving communication.

Preferred place of death for patients referred to a specialist palliative care service.

OBJECTIVES: Understanding patients' preferences for place of death and supporting patients to achieve their wishes has become a priority. This study aims to: (1) examine preferences of patients referred to a specialist palliative care service; (2) determine whether preferences of those who have been admitted as hospice inpatients differ from those who have not; (3) identify reasons why preferred place of death (PPD) is sometimes not recorded; and (iv) investigate whether nominating a PPD relates to actual place of death. METHOD: PPD information was collected as part of standard care for all patients referred to a specialist palliative care service. Case notes were reviewed retrospectively for 1127 patients who died under the care of the service. RESULTS: Seventy-seven percent of the patients expressed a PPD, a further 21% of patients had documented reasons for PPD remaining unknown. Eighty percent of patients who had never been admitted to the hospice wanted to die at home. In contrast, 79% of those with at least one hospice inpatient admission wanted to die in the hospice. Patients who had an unknown PPD were three times more likely to die in hospital. CONCLUSIONS: Most patients in a specialist palliative care setting are willing to express a PPD. Preferences differ for patients who had never been admitted as hospice inpatients from those who have had at least one inpatient stay. Routine and ongoing assessment of PPD are recommended to support patients' wishes at the end of life.