"Small small interventions, big big roles"- a qualitative study of patient, care-giver and health-care worker experiences of a palliative care programme in Kerala, India.

BACKGROUND: Home-based palliative care is an essential resource for many communities. We conducted a qualitative study to explore perceptions of a home-based palliative care programme in Kerala, India, from the perspective of patients, their care-givers and the doctors, nurses and volunteers running the intervention. METHODS: A descriptive qualitative study was carried out. One focus group discussion (FGD) was conducted with patients (n = 8) and two with male and female volunteers (n = 12); and interviews were conducted with doctors (n = 3), nurses (n = 3) and care-givers (n = 14). FGDs and interviews were conducted in Malayalam, audio-recorded, transcribed verbatim and translated into English. Transcripts were coded and analysed using manual content analysis. RESULTS: Doctors, nurses and volunteers have interdependent roles in providing palliative care to patients, including mentorship, training, patient care and advocating for patient needs. Volunteers also considered themselves to be mediators between families and the programme. Care-givers were mainly female and were caring for relatives. They have physically demanding, psychologically stressful and socially restrictive experiences of care-giving. They felt that the programme facilitated their role as care-givers by giving them training and support. Patients with long standing illnesses felt that the programme enabled them to become more independent and self-reliant. The local community supports the programme through economic contributions and offering practical assistance to patients. CONCLUSION: The salient features of this programme include the provision of regular holistic care through a team of doctors, nurses and patients. The programme was perceived to have improved the lives of patients and their care-givers. The involvement of volunteers from the local community was perceived as a strength of the programme, whilst simultaneously being a challenge.

Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers.

BACKGROUND: The well lauded community-based palliative care programme of Kerala, India provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregivers and programme performance. This study was carried out to describe: i) the patients enrolled in the programme from 1996 to 2016 and their diagnosis, and ii) the care-giver characteristics and palliative care support from nurses and doctors in a cohort of patients registered during 2013-2015. METHODS: A descriptive study was conducted in the oldest community-based palliative clinic in Kerala. Data were collected from annual patient registers from 1996 to 2016 and patient case records during the period 2013-2015. RESULTS: While 91% of the patients registered in the clinic in 1996 had cancer, its relative proportion came down to 32% in 2016 with the inclusion of dementia-related illness (19%) cardiovascular accidents (17%) and severe mental illness (5%).Among patients registered during 2013-15, the median number of home visits from nurses and doctors in 12 months were five and one respectively. In the same cohort, twelve months' post-enrolment, 56% of patients died, 30% were in continuing in active care and 7% opted out. Those who opted out of care were likely to be aged < 60 years, received one or less visit annually from a doctor or have a serious mental illness. 96% of patients had a care-giver at home, 85% of these care-givers being female. CONCLUSIONS: The changing dynamics over a 20-year period of this palliative care programme in Kerala, India, highlights the need for similar programmes to remain flexible and adapt their services in response to a growing global burden of Non Communicable Diseases. While a high death rate is expected in this population, the high proportion of patients choosing to stay in the programme suggests that home-based care is valued within this particular group. A diverse range of clinical and psycho-social support skills are required to assist families and their caregivers when caring for a cohort such as this one.

Ethical issues in palliative care: considerations.

Discussions on ethics in palliative care often concentrate on issues like patient autonomy or euthanasia. However, the reality in the developing world begs discussion on an entirely different set of problems altogether. One should have a good death, no doubt, but one should also have an opportunity for a good life. Globalization unfortunately seems to worsen many of the burdens of the developing world, like the negative influence of the mighty pharmaceutical industry. Continuing medical education offered only by the pharmaceutical industry instills bias into the minds of most medical professionals. Prescription practices by many professionals are influenced by the industry; so much so, inexpensive drugs or formulations are abandoned in favor of expensive ones, adding to the burden of a much-suffering individual. Palliative care should have been a major force against such evils, but it seems to get more clinical and institutionalized with time, with the social issues taking a back seat. Unethical research practices and preferential treatment in drug availability are practices that continue to marginalize the less privileged. Adoption of the dominant ideology from the West in the developing world also raises problems like cultural unsuitability. Considering that the bulk of the suffering in the world is in poorer countries, these issues need to be addressed.