Palliative care delivery in India during COVID-19 pandemic: role of faith-based hospitals - a qualitative study.

OBJECTIVES: The COVID-19 pandemic challenged palliative care (PC) services globally. We studied the ways healthcare professionals (HCPs) working in faith-based hospitals (FBHs) experienced and adapted care through the pandemic, and how this impacted patients with PC needs. METHODS: In-depth interviews were conducted with HCPs from FBHs serving rural and urban population across India. Thematic analysis was conducted. RESULTS: A total of 10 in-depth interviews were conducted during the COVID-19 pandemic, first wave (4), second wave (4) and between them (2). HCPs described fear and stigma in the community early in the pandemic. Migrant workers struggled, many local health services closed and cancer care was severely affected. Access and availability of healthcare services was better during the second wave. During both waves, FBHs provided care for non-COVID patients, earning community appreciation. For HCPs, the first wave entailed preparation and training; the second wave was frightening with scarcity of hospital beds, oxygen and many deaths. Eight of the 10 FBHs provided COVID-19 care. PC teams adapted services providing teleconsultations, triaging home visits, delivering medications, food at home, doing online teaching for adolescents, raising funds. Strengths of FBHs were dedicated teamwork, staff care, quick response and adaptations to community needs, building on established community relationship. CONCLUSION: FBHs remained open and continued providing consistent, good quality, person-centred care during the pandemic. Challenges were overcome innovatively using novel approaches, often achieving good outcomes despite limited resources. By defining and redefining quality using a PC lens, FBHs strengthened patient care services.

Deaths in critical care and hospice-prevalence, trends, influences: a national decedent cohort study.

OBJECTIVES: End-of-life and bereavement care support services differ in critical care and inpatient hospice settings. There are limited population-level data comparing deaths in these two locations. We aimed to compare the characteristics of people who die in critical care units and in hospices, identify factors associated with place of death and report 12-year trends in Scotland. METHODS: We undertook a cohort study of decedents aged ≥16 years in Scotland (2005-2017). Location of death was identified from linkage to the Scottish Intensive Care Society Audit Group database and National Records of Scotland Death Records. We developed a multinomial logistic regression model to identify factors independently associated with location of death. RESULTS: There were 710 829 deaths in Scotland, of which 36 316 (5.1%) occurred in critical care units and 42 988 (6.1%) in hospices. As a proportion of acute hospital deaths, critical care deaths increased from 8.0% to 11.2%. Approximately one in eight deaths in those aged under 40 years occurred in critical care. Factors independently associated with hospice death included living in less deprived areas, cancer as the cause of death and presence of comorbidities. In contrast, liver disease and accidents as the cause of death and absence of comorbidities were associated with death in critical care. CONCLUSIONS: Similar proportions of deaths in Scotland occur in critical care units and hospices. Given the younger age profile and unexpected nature of deaths occurring in critical care units, there is a need for a specific focus on end-of-life and bereavement support services in critical care units.

'COVID-19 and palliative medicine: faith-based hospitals in India'.

OBJECTIVES: Faith-based organisations (FBOs) in India provide health services particularly to marginalised communities. We studied their preparedness and delivery of palliative care during COVID-19 as part of a mixed-method study. We present the results of an online questionnaire. METHODS: All FBOs providing palliative care in India were invited to complete an online questionnaire. Descriptive analysis was undertaken. RESULTS: Response rate was 46/64 (72%); 44 provided palliative care; 30/44 (68%) were in rural or semiurban areas with 10-2700 beds. Fifty-two per cent (23/44) had dedicated palliative care teams and 30/44 (68%) provided it as part of general services; 17/44 (39%) provided both. 29/44 (66%) provided palliative care for cancer patients; 17/44 (34%) reported that this was more than half their workload.The pandemic led to reduced clinical work: hospital 36/44 (82%) and community 40/44 (91%); with reduction in hospital income for 41/44 (93%). 18/44 (44%) were designated government COVID-19 centres; 11/40 (32%) had admitted between 1 and 2230 COVID-19 patients.COVID-19 brought challenges: 14/44 (32%) lacked personal protective equipment; 21/44 (48%) had reduced hospital supplies and 19/44 (43%) lacked key medications including morphine. 29/44 (66%) reported reduction in palliative care work; 7/44 (16%) had stopped altogether. Twenty-three per cent (10/44) reported redeployment of palliative care teams to other work. For those providing, palliative care 32/37 (86%) was principally for non-COVID patients; 13/37 (35%) cared for COVID-19 patients. Service adaptations included: teleconsultation, triaged home visits, medication delivery at home and food supply. CONCLUSIONS: FBOs in India providing palliative care had continued to do so despite multiple challenges. Services were adapted to enable ongoing patient care. Further research is exploring the effects of COVID-19 in greater depth.

Electronic care coordination systems for people with advanced progressive illness: a mixed-methods evaluation in Scottish primary care.

BACKGROUND: Electronic care coordination systems, known as the Key Information Summary (KIS) in Scotland, enable the creation of shared electronic records available across healthcare settings. A KIS provides clinicians with essential information to guide decision making for people likely to need emergency or out-of-hours care. AIM: To estimate the proportion of people with an advanced progressive illness with a KIS by the time of death, to examine when planning information is documented, and suggest improvements for electronic care coordination systems. DESIGN AND SETTING: This was a mixed-methods study involving 18 diverse general practices in Scotland. METHOD: Retrospective review of medical records of patients who died in 2017, and semi-structured interviews with healthcare professionals were conducted. RESULTS: Data on 1304 decedents were collected. Of those with an advanced progressive illness (79%, n = 1034), 69% (n = 712) had a KIS. These were started a median of 45 weeks before death. People with cancer were most likely to have a KIS (80%, n = 288), and those with organ failure least likely (47%, n = 125). Overall, 68% (n = 482) of KIS included resuscitation status and 55% (n = 390) preferred place of care. People with a KIS were more likely to die in the community compared to those without one (61% versus 30%). Most KIS were considered useful/highly useful. Up-to-date free-text information within the KIS was valued highly. CONCLUSION: In Scotland, most people with an advanced progressive illness have an electronic care coordination record by the time of death. This is an achievement. To improve further, better informal carer information, regular updating, and a focus on generating a KIS for people with organ failure is warranted.

Making sure services deliver for people with advanced heart failure: a longitudinal qualitative study of patients, family carers, and health professionals.

The objective of this study was to evaluate the key components of services for people with advanced heart failure from multiple perspectives and recommend how care might be delivered in line with UK policies on long-term conditions, palliative and end-of-life care. Serial interviews were conducted over 2 years with patients, case-linked family carers and professionals (n =162); followed by four focus groups involving patients, carers and key professionals (n =32). There were 36 patients with advanced heart failure, 30 family carers and 62 professionals included in the study from a UK health region with various heart failure care models. Participants confirmed the value of a key health professional coordinating care, holistic assessment and regular monitoring. A lack of time and resources due to competing priorities in primary care, failure to respond to the fluctuations of a heart failure illness trajectory, concerns about the balance between direct care from specialist nurses or a more advisory role and difficulty in judging when to move towards palliative care hindered consistent access to proactive care. A heart failure care framework, with key stages and service responses, was developed. We conclude that patients with long-term conditions needing palliative care should be identified and managed using pragmatic criteria that include a proactive shift in care goals.

Living with advanced heart failure: a prospective, community based study of patients and their carers.

BACKGROUND: Services for people with heart failure are under-developed. The perspectives of patients, their informal and professional carers should inform development of service models. AIM: To describes how patients and carers view health and social care in the last year of life. METHODS: Qualitative, serial interviews at three monthly intervals with 20 patients (New York Heart Association Grade IV heart failure), their main informal carer, general practitioner and other key professionals in an urban, community setting in SE Scotland. These were tape-recorded, and analysed with the aid of the qualitative data analysis package NVivo and techniques of narrative analysis. RESULTS: 112 interviews comprised; patients (50), informal carers (27), professionals (30), bereavement interviews (5). Patients with heart failure and their carers felt unsupported by services, and had little understanding of their condition, treatment aims or prognosis. Quality of life was severely compromised by physical limitations and psychological morbidity. Psychosocial care, patient and carer education, co-ordination of care between primary and secondary sectors and with social services was generally poor. Many patients had no access to a heart failure nurse specialist. A palliative care approach was rarely apparent. CONCLUSIONS: Patients with advanced heart failure may benefit from specific models of care with strategic planning across primary and secondary care, and involvement of health and social care services and specialist palliative care providers. Models of care, which focus on quality of life, symptom control, and psychosocial support for patients and their families while continuing active treatment, should be developed.