Secondary Home-based Palliative Care: Impact on Quality of Life of Beneficiaries

INTRODUCTION

Pain and palliative care (PPC) initiatives worldwide aim to relieve suffering and enhance the quality of life (QoL) of patients, their families and caregivers.^[1-3] This includes pain management, promoting the dignity and comfort of patients, providing psychosocial/financial/rehabilitation support for patients and caregivers and mobilising community involvement throughout the process of palliative care provision.^[4,5] Over the years, the scope of palliative care has expanded to include all life-limiting illnesses suffered by all age groups who need physical, psychosocial or spiritual support to target the QoL of patients and their families.^[6] This has led to refinement in the palliative care models from following disease-specific approaches to universalising palliative care integrated into existing health systems to make these services accessible and affordable.^[7]

These initiatives to strengthen palliative care structures came against the backdrop of countries experiencing epidemiological transition, with the increasing prevalence of non-communicable diseases (NCDs) and an ageing population. Out of the fifty-seven million people who need palliative care worldwide, 78% are from low- and middle-income countries.^[8,9] Disease burden in India follows the same trend with increasing prevalence of NCDs, coupled with a dearth of palliative services, adding to the pain and suffering of patients.^[10,11] The south Indian state of Kerala depicts a health scenario where both the prevalence of NCDs and the aged population are higher than the national average, creating a higher need for palliative care services. ‘Kerala model of palliative care,’ the cost-effective, community-led home-based palliative care, attached to government health structures, is recognised worldwide.^[12-14] Kerala has a decentralised public health system with primary, secondary and tertiary care centres attached to the respective local self-government institutions (LSGIs). Following the public health approach, PPC services were integrated into primary care centres, i.e., family health centres (FHCs) in each Grama Panchayat, to provide home care for palliative patients since 2008.^[15] PPC Policy, Government of Kerala (GoK), 2019, envisaged extending these services to the secondary care centres – the community health centres (CHCs) – and upgrading them as first referral units to provide inpatient care to patients suffering from chronic illnesses and to provide speciality care at home.^[16] Consequently, the home-based palliative unit (HBPU) attached to CHC conducts monthly visits and provides physiotherapy services and speciality nursing care at home, along with taking care of psychosocial and rehabilitation needs of patients referred from primary palliative units.

Secondary palliative units aim to enhance the QoL of patients. Many factors, including mode of service delivery, decentralisation in health governance, cultural features and the characteristics of beneficiary groups, affect the success of these interventions.^[17] This highlights the need for more micro-level studies on the impact of secondary care palliative units. Against this backdrop, an attempt is made to assess the QoL of patients registered in an HBPU attached to a secondary care facility in Kerala and to identify how far this has resulted from the intervention of the palliative unit.

MATERIALS AND METHODS

HBPU, which is attached to CHC, Vilappil, the award-winning secondary palliative care unit, has been selected for the study. Out of the ninety-three patients registered in the unit during 2022, thirty-eight were selected randomly, and quantitative data relating to sociodemographic details, disease profiles and QoL were collected. The McGill QoL Questionnaire-Expanded (MQOL-E) is used to collect data on various QoL domains. The domains include physical, psychological, social, existential, feeling of burden, physical environment, cognition and health awareness. Twenty-one items across eight domains are measured on an 11-point scale from zero to ten, where zero represents the lowest QoL and ten represents the highest QoL.^[18] The patients were also asked how far their QoL has been impacted because of the intervention of HBPU, and it was rated using a scale of one to ten, with one representing no considerable impact and ten depicting a dominant impact. Thus, patients’ perceptions are analysed quantitatively to understand the effectiveness of HBPU activities. Informed consent is obtained from all participants. Ethical approval was obtained from the university-level ethical committee on research involving human subjects. (Register Number: EC/NEW/INST/2022/2586, Project No: ULECRIHS/UOK/2023/99 dated 20 February 2023). Data were collected over 5 months, ranging from August to December 2023.

RESULTS

The secondary palliative care unit of CHC, Vilappil, became operational in 2018, and it provides advanced care and symptom management for palliative patients referred from the six FHCs under it. Following the PPC Policy guidelines, GoK, 2019, outpatient care, inpatient care and physiotherapy services are provided at the palliative unit. The activities of the palliative unit are coordinated and monitored under Arogyakeralam, National Health Mission, a centrally sponsored scheme and Block (Intermediate) Panchayat – the local self-government institution at the secondary tier. An HBPU is constituted as a part of the palliative unit to provide home care for secondary palliative patients. The home care team includes a secondary palliative nurse, a physiotherapist, an accredited social health activist (ASHA) and a ward member. The team provides advanced palliative care, physiotherapy services and psychosocial support to all patients referred from the primary care centres during home care visits.

Home care visits are led by a palliative nurse at CHC, and the team is accompanied by a palliative nurse from the respective FHC and a member from the respective Grama (Village) Panchayat. Visits are conducted 5 days a week; on average, eight patients are visited daily to ensure all registered patients are visited monthly. Palliative services include both medical care and non-medical care. Advanced nursing care, such as vitals check-ups, urinary catheterisation, benign prostatic hyperplasia care, oedema care, Ryle’s tube insertion, etc., is provided at home. In addition, HBPU organises awareness campaigns, distributes assistive devices and conducts telephonic counselling and follow-ups. Medicines are provided at home, and assistive devices are supplied according to the patient’s needs using funds from the Block Panchayat. Financial and rehabilitative support is provided for patients by collaborating with civil society organisations and schools. Furthermore, a 3-day training programme is organised yearly for home care team members to ensure quality in-home care visits.

DISCUSSION

The result reveals that patients perceive a better QoL in most domains, and HBPU significantly contributed to these dimensions, making the interventions effective.

A better QoL can be attributed to the quality of personnel in the home care team and the coordinated functioning of the HBPU in providing psychological and rehabilitative support. The home care team is multidisciplinary, consisting of doctors, palliative nurses, physiotherapists, ASHA workers, volunteers and representatives from LSGIs who can cater to each patient’s diversified needs. Physiotherapy services and medicines, including morphine, are provided by the hospital, and speciality nursing care, including colostomy care, oedema care, injection and medication for patients, are also provided at home. This medical support improved patients’ existential dimension by enabling them to cope with the pain and distress attached to the disease.

Palliative care aims to provide psychosocial support to persons. Here, the training received by the home care team is significant.^[20] Doctors and nurses have the needed training in palliative care, and this has helped in the provision of psychosocial support to patients by managing the mental trauma associated with ageing and chronic illness. The hospital’s inpatient facility and ICU bed instil hope among the patients, as they can now receive intensive care treatment near their homes without travelling to faraway hospitals. Furthermore, the waiting time to receive medical care has reduced a lot after the intervention of the HBPU team; on the one hand, speciality care is provided by the team at home itself, reducing the frequency of hospital visits, and on the other hand, the patients can now approach the outpatient for palliative patients.

Health awareness is the domain where the HBPU unit made a tremendous impact. The palliative team considers patients’ partners in the treatment plan, and there is better communication regarding disease conditions and treatment plans. This personalised care given to patients, in turn, has helped to enhance the existential dimension. Another important aspect is the support given to the caregiver. Palliative care initiatives primarily focus on improving patients’ QoL but often ignore the caregiver welfare aspects, an important factor that significantly influences the patient’s overall well-being.^[21] With awareness of palliative care, financial condition, psychological state and interpersonal relations with a patient, the caregiver greatly improves the patient’s life.^[22] The HBPU team adopts an inclusive approach to palliative care in which the caregiver is acknowledged and empowered during the process of palliative care provision. Caregivers are given training to provide basic nursing care by the team; sharing information about treatment options and providing psychological support to deal with traumas of patient, helps in reducing feeling of burden.

The underlying morale behind palliative care initiatives is ensuring palliative services to all, even if they are not aware of/able to afford them. Considering the condition of the beneficiary community, the team makes special efforts to provide additional medicines free of cost, temporary/permanent assistive devices and financial support to the patients, which considerably improves the living environment. For most of the terminally ill patients and their families, overcoming social barriers and prejudices is a major challenge. To mobilise social support and peer acceptance, the palliative policy recommends Local Self Governments to organise community-led initiatives for rehabilitation, assistance and re-employment of those experiencing hardships. On the same note, awareness programmes are to be conducted at the panchayat level. The coin box initiative, a fundraising initiative which is utilised to provide free food kits, financial assistance and other incentives for the identified beneficiaries, is an example in this regard. Similarly, training programmes are organised at the CHC or nearby schools by the HBPU team to raise social consciousness among the student fraternity and the larger community. Another notable initiative was the launch of a family get-together programme at the block level to bring the patients, their families and stakeholders together to improve the social lives of patients. All these contribute towards enhancing QoL attached to the social domain.

Improvement in patients’ QoL comes with the planned and coordinated work of the HBPU team, where the patient and caregiver are at the focal point of treatment, and services are provided, integrated into general health, coordinated with LSGIs and the community, involving trained medical and paramedical professionals. The effectiveness of secondary HBPU in ensuring the QoL is attributed to many factors such as eminence and attitude of the care team, coordination among the tiers and welfare programmes, autonomy and respect, training received and level of inclusiveness.

CONCLUSION

The intervention of HBPU has helped maintain a good QoL for palliative patients since the team provided medical and non-medical care to patients attached to the unit.

A better QoL in most of the domains reflects that the home care team catered to the needs, such as symptom management, advanced nursing care, physiotherapy services and counselling and provided financial and rehabilitative support. This was made possible by a trained multi-disciplinary team working in coordination at the secondary care facility, capable of mobilising support from both the patient’s family and the community. Health awareness and social domain are the dimensions where HBPU made the greatest impact, and this rightly depicts the need for well-planned and coordinated home-based palliative services at the secondary level. Extending this model to similar contexts can strengthen the provision of palliative care services and enhance patients’ QoL.