Home-based Palliative Services under Two Local Self-government Institutions of Kerala, India: An Assessment of Compliance with Policy and Guidelines to Local Self-government Institutions

INTRODUCTION

The Lien Foundation's commissioned studies in 2010 and 2015 rate India poorly in the quality of dying.[12] One of the reasons for this is the slow progress in palliative and end-of-life care.[3] A notable exception is the state of Kerala in Southern India characterized by high development indicators. Unfortunately, the state is witnessing high morbidity levels, a graying population, and high prevalence of chronic diseases such as hypertension, diabetes, stroke, and cancer.[456] Kerala also reports a declining revenue expenditure on health.[7] It is in this context that the palliative care (PC) policy introduced to serve the needs of the community, especially those residing in rural resource-strapped areas, needs re-examination.

MATERIALS AND METHODS

Poovar and Azhur are two rural areas provided home-based PC by the LSGIs (called Gram Panchayats) and an NGO. Initially, the areas were served only by the NGO. The Government PC service started in Azhur and Poovar in 2013 and 2010–11, respectively. At present, the NGO, as well as Poovar CHC, in collaboration with a medical officer at Government Ayurvedic Health Centre provide PC services in Poovar. At Azhur, the Regional Cancer Center, Thiruvananthapuram, also conducts home visits and provides follow-up palliative services to cancer patients undergoing treatment.

The jurisdictional areas served by the LSGIs have a population of 20,056 (Poovar) and 28,331 (Azhur) with a high concentration of scheduled castes – 2586 in Poovar and 5535 in Azhur. The residents are mainly occupied in fishing and manual labor in Poovar, and in Coir industry and other manual labor in Azhur. Around 47% of the residents in Azhur were below the poverty line. Both the regions have a large number of elderly people. Although precise estimates for Poovar are unavailable, in Azhur, there are 2008 males and 2045 females above the age of sixty.

The present study used a descriptive research design, focusing on primary level PC services offered in the above-mentioned two LSGIs. The structure, organization, and pattern of home care delivery by both the government and NGO were assessed, and data were collected from health workers (doctors, nurses, and PC nurses) from both the NGO and public sector. Two officials from the national health mission in charge of PC program were also interviewed. Next, the compliance of the LSGIs to the policy was understood by comparing the existing health delivery with the stated ideals as suggested in the policy draft and guidelines to LSGIs.

The information on the home-based PC provided by NGO was collected through direct interviews with the chief executive officer and director of the organization and field visits with their team as well.

RESULTS

There were about 139 patients in Poovar and 239 patients in Azhur taking PC services provided by government health centers. Among them, 28 patients with catheter or bedsores received palliation in Poovar and 71 in Azhur. Most of them were suffering from serious multiple morbidities including noncommunicable diseases, mobility issues, and sensory and motor impairments. There were a few participants without food and shelter.[14] Table 1 provides a comparative description of the nature and organization of PC services provided by two LSGIs and the NGO operating in Poovar and Azhur.

Table 1 Palliative care program run by three service providers: A comparative picture

It is clear from a comparison of the three service providers that the palliative program in the region does not have a uniform structure in terms of workforce deployment, training of health workers, infrastructure availability, and composition of the palliative team. It is evident from the study that government palliative teams were merely nurse-led, while the NGO operating in that region had a more professional approach in terms of the composition of the team. Perhaps the reason for the dominance of nurse-led teams in government programs is the sheer workload of the doctors and poor motivation due to the lack of extra honorarium for palliative services. This is a major drawback of the policy itself since it relied on medical officers who are already in service rather than appointing new staffs. The nodal officer from NHM also emphasized the need of a dedicated palliative physician to ensure continuity of care thereby improving program efficiency each LSGI.

The study found that a rational structure of work allocation has not been made for allied health workers, particularly for PC nurses who seemed to be overworked. It may be mentioned that initially, the policy had proposed augmenting field level and subcenter level services. Male and female Multipurpose Health Workers were expected to provide comprehensive primary health-care services at the household level through the subcenters and at the PHCs; they were to be given necessary orientation cum skill development training to play a major role along with the CBO volunteers and family members. However, in reality, the entire burden seems to have fallen on the palliative nurses who were also found to be overloaded with responsibilities for which they did not have the requisite skills, for instance, formulating budgets. Poovar and Azhur had only one palliative nurse, each.

The study showed poor frequency of home care visits in both places: 4–6 home visits in Poovar and 8–9 home visits in Azhur in a month. About 6–12 patients were visited per day according to the patients' condition. It is impossible to reach all patients at this rate in both LSGIs. For those patients who needed urgent attention, the family members “called” the PC nurse and had to bear the cost of vehicle charges (back and forth). These “informal” visits were more frequent in Poovar since the schedule of home visit was arranged according to the convenience of JHI or JPHN accompanying the team rather than the needs of the families.

Patients with urinary catheters, bedsores, or those needing special nursing care could be visited only once in a month indicating a serious care deficit. Others were visited once in 2 or 3 months according to the severity of their illnesses. One important reason could be a lack of workforce and dedicated transport for such a purpose. The revised guidelines for LSGIs mention that transport facilities for home care need to be arranged from the budget earmarked for PC. The vehicle owned by the health center could be used if available, otherwise hired for the same purpose. In Poovar, home care team was found to use the hospital vehicle during scheduled home visits; however, for unscheduled visits, the patient's family had to pay for the vehicle charge back and forth. Thus, except for the NGO, which had its own vehicle, transportation was a big problem in maintaining the quality of services. However, providing better services resulted in huge escalation of cost per home visit, as in the case of the NGO. This indicates the need for more serious cost analysis to ascertain whether home palliation in its present form, may be considered as the best model when resources are scarce.

A great strength of the program medicines dispersed at free of cost, whether run by the NGO or the government. Making essential medicines for PC available to patients covered by PC services through PC units/PHCs/other government hospitals are an important component of the policy. However, field observations show that not all patients in need get the medicines from their service providers; the logistics for disbursement also remains rather cumbersome except for the NGO. Families had to collect medicines from the facilities rather than having them delivered at home by the home care team, thus entailing extra time and effort. Availability of morphine remains problematic, except for the NGO.

The palliative home care as provided to the two rural areas lacks an adequate social welfare provision for the poor. It also lacks alternative institutional structures for those who are living and dying alone and under desperate circumstances. Emergency referrals facilities to acute centers are also absent.

PC policy envisaged LSGIs as the prime implementation authority to coordinate the services. Table 2 compares the two LSGIs in terms of their adherence to the guidelines formulated in 2013 after a review of implementation of the PC policy.

Table 2 Adherence to selected Guidelines for the Local Self-government Institutions: A comparison of two Local Self-government Institutions

Table 2 shows glaring gaps in adherence to the guidelines formulated for the LSGIs. The policy had envisaged an integrated service provision with family as the core unit of care. Although the mandatory home care project is run by both the LSGIs, the home care team does not follow the suggested composition, and it is rarely planned in the review meetings.

PC Management Committee meetings, though regular, do not enlist wide participation involving members enlisted in the guidelines. The revised guidelines for LSGIs clearly mention involvement of LSGI members, medical officers, nurses, field workers, and ASHAs from the health centers under the jurisdiction of LSGI and representatives from NGOs, volunteers from the community, representatives of Kudumbasree Community Development Societies (community-based organization), and teachers in charge of Students Police Cadet, National Service Scheme, and National Cadet Corps (schools- and college-based youth development schemes). In contravention of the suggested guidelines, the meetings did not involve wide participation. The role of LSGIs appears mainly restricted to funding – its allocation and spending, rather than actively devising an organizational and care logistics geared toward improved service quality. The budget allocation also showed great variability. The amount, meant primarily for dispensing medicines, meeting home care costs, and for providing remuneration to nurses, was reported as insufficient by PC nurses of both the LSGIs.

Another important finding from the field was that health inspectors, who had little training in higher-level management functions, often devised the annual outlays based on the report by PC nurses who were also poorly qualified. Thus, annual budget outlays were repetitive and unreflective of ground realities. Moreover, NRHM instructions on annual planning and budgeting were overlooked resulting in a weak health delivery system and poor outcomes. While both LSGIs provide some social support services but administrative delays prevent good outcomes with the result that a mere clinical approach to palliation has resulted without any rehabilitation activities. There is a little initiative to garner more funds from external sources and engage in continuing education activities and rehabilitation. Most of the educational activities are conducted by the national health mission rather than by the LSGIs.

Public-private linkages are important for sustainability of any program at community level. The study found considerable hostility among service providers. In both LSGIs, there were open conflicts between LSGI members and health workers regarding fund utilization, membership, and representation in meetings. Conflict between NGOs and government providers was very overt to a level causing open arguments. In this sense, the initial aim of the government to utilize the experience of CBOs/NGOs and actively work with them seems to have failed.

The policy envisaged a proper monitoring system in the state to facilitate quality assurance. Clear instructions were provided to LSGIs on how to monitoring the program and give suggestions for improvement. However, in practice, the meetings usually remain focused on fund expenditure rather than on quality of services. Moreover, a guideline for quality control was proposed to be set up at the state level with a monitoring/evaluating mechanism at the district level. Further, it envisaged developing a system to document and compile data on the PC-related activities and patient population at district and state level. However, field research shows serious flaws with irregular meetings and poor record of proceedings to guide action.

Central to assessment of quality of services is the question of training of health workers. LSGIs rarely engaged themselves in training. The existing home care team was also inadequately trained. The nodal officer admitted that the basic qualification of a PC nurse was insufficient to equip her with good caring skills. Health coordinators such as the JHI/JPHN were also overloaded with multiple duties in ongoing health programs. Continuing education was occasionally provided, but no volunteers were selected or trained in both LSGIs.

Contrary to the policy guidelines, family empowerment as an outcome measure for the success of palliation is also rather weak. Families clearly lacked skills in handling the bedridden and dying. Poverty and dismal home environments added to the burden of caregiving. Although the need for care became more pronounced as patients became completely bedridden and dependent, family involvement in caring was restricted, superficial, and confined to days when home visits were expected. Supportive care to families through pension/welfare inputs is also weak due to slow administrative system.

An important feature of any health delivery program is a proper supply–demand assessment of medicines and equipment within a proper logistics cycle to ensure just distribution. The study found problems in distribution and availability of morphine. In addition, the PC structure, despite its clinical focus, lacked many specialist doctors such as psychiatrists, geriatricians, and physiotherapists. There was also a lack of integration of biomedicine with indigenous healing traditions. Only one LSGI could accommodate indigenous medicine; the other two providers failed to integrate this with a dominant biomedical approach despite Ayurveda's confirmed therapeutic potential in treating bedsores, joint pains, etc.

CONCLUSIONS

Despite having made much progress, the program in two LSGIs is still short of a public health approach, and major guidelines of the palliative policy seem to have been given a miss. It also lacks the flavor of a community-owned program with a committed organizational structure, dedicated staff and delivery mechanism, seamless care through continuous monitoring, high frequency of visits, and adequate referrals. Finally, it appears too fragmented and restricted in its scope to meet the needs of the poor, the homeless, and those without caregivers unless it is located within an inclusive long-term care strategy involving a mix of health and social security measures. Evidently, this would require a huge structural reconfiguration of the delivery system – a task whose magnitude and profundity necessitate greater state responsibility and political will in including palliation within a broader social organization of care.