Integrating palliative care into primary health care: Indian perspectives

Abstract

Access to palliative care is essential in primary healthcare as most patients and families prefer end-of-life care at home. However, integrating palliative care into the community is often lacking, disrupting the continuity of care. In a low-middle-income country like India, palliative care is usually provided in tertiary and secondary hospitals. Primary palliative care is sporadically offered in some parts of India, like Kerala, through a neighbourhood network of palliative care (NNPC) programmes. The availability of trained providers, funding, and awareness, limits the capacity to provide primary palliative care. It leads to people accessing care at their end of life in acute hospitals, receiving unnecessary medical interventions, and diminishing their quality of dying. The need for developing palliative care in the community in a low-middle-income country like India is explicated here.

Keywords:

• Primary Health Care
• Palliative Care
• Perspectives
• Community Health Workers
• integration
• home based care‌

Introduction

The primary health care principles support universal health access to everyone, everywhere, with appropriate care in their place of choosing.¹ It is not limited to unidimensional disease-centred physical care but has a broader construct encompassing person-centred psychosocial and spiritual care alongside preventive and rehabilitative care.² The palliative care principles resonate with primary health care by providing active, holistic care to all individuals facing health-related suffering, focusing on enhancing the quality of life.³ The disparity in access to palliative care exists between high, low-middle, and low-income countries⁴ adequate knowledge of illness,⁵ participation in decision-making² respecting patient choices,⁶ and integration with disease management² and government health financing⁷ often facilitate palliative care access. In a primary care setting, palliative care is usually provided by general practitioners, community nurses, and social workers.⁸ They might also have access to psychologists, trained lay counsellors, pharmacists, chaplains and faith leaders, and volunteers.² Participation of the community health workers in short palliative care training programmes might enable them to recognize palliative care needs in the community.⁹ In India, Accredited Social Health Activist (ASHA) and Auxiliary Nurse Midwife (ANM) are community health worker equivalent who liaises between people at home and health care providers in a primary care centres.¹⁰ They have successfully participated in diverse health promotion and disease-prevention activities in India, improving health outcomes.² Building their capacity to recognize community palliative care needs might significantly facilitate access to palliative care.⁹

Current status of palliative care services in India

Globally, there is a growing recognition of the unmet demand for PC services. An estimated 56.8 million people worldwide, including 31.1 million individuals who are near death and 25.7 million people who are just before it, need palliative care each year.¹¹ The majority (54.2%) are non-decedents who require palliative care before their last year of life, with the majority (67.1%) being adults over the age of 50 and at least 7% being children. The majority of adults who require palliative care (76%) reside in LMICs, with the biggest percentage occurring in low-income nations.¹²

In India, one million new cancer cases are expected each year, with more than 80% of these cases presenting at stage III or IV and it is estimated that less than 3% of cancer patients receive adequate pain relief¹³ and also less than 1% of the population of India get access to PC as there is insufficient PC coverage.¹⁴ People in India are increasingly in need of PC due to an ageing population and a high prevalence of non-communicable diseases (NCDs).¹⁵

Although cancer is the most prevalent adult condition requiring PC, other non-communicable diseases (NCDs) account for 70% of the demand. HIV is one of the communicable disorders that can be considered for PC, along with accidents, poisoning, and maternity and child health issues.¹⁶ An exploratory descriptive study was conducted among 22 patients in Pondicherry, India identified that the disease conditions of the people requiring palliative care are, age-related weakness 9 (41%), Chronic heart disease 4 (18.5%), Paralysis due to cerebrovascular accident 3 (13.5%), Post-polio residual paralysis (4.5%), Cancer oesophagus 1(4.5%), Chronic kidney disease (4.5%), Psychosis following head injury (4.5%), Mild mental retardation (4.5%), Filariasis (left) leg (4.5%).¹⁷

Importance of integration of PC into primary health care

The citizens of India have access to primary, intermediate, and tertiary health care services through the country's three-tiered health system. A significant contributing factor to subpar performance and underuse of the public health system is low funding for the healthcare system.¹⁸ In India and many other low- and middle-income nations, health system reform programmes have made an effort to increase structural aspects of quality, such as making sure that health facilities are in good condition, are adequately supplied with drugs and equipment, and have the necessary staff in place, to improve the quality of primary health care services.¹⁹ The Government of India announced in February 2018 that it would transform existing Sub Centres and Primary Health Centres to create 1,50,000 Health and Wellness Centres (HWCs). These centres will provide Comprehensive Primary Health Care (CPHC), bringing healthcare closer to people's homes.²⁰

Ayushman Bharath – National Health Protection Mission will have a significant impact on reducing out-of-pocket (OOP) expenditure by increasing benefit coverage to nearly 40% of the population (the poorest and most vulnerable), covering almost all secondary and many tertiary hospitalizations, and providing coverage of 5 lakh to each family in the bottom 40% of the Indian population.²¹ As a result, more people will have access to high-quality medical care and medications, and it will be easier to meet the population's unmet requirements, which were hidden due to a lack of funding.²²

A joint position statement released in 2018 from the Indian Association of PC and Academy of Family Physicians of India also recommended the concept of integration of PC into all levels of health care, especially with primary health care with a clear-cut direction of referral systems, and coordination with PC centres and the local physician to ensure the provision of PC. It also further suggested the incorporation of education and training in PC for primary care doctors and health care workers.¹²

Palliative Care services in rural areas

With 1.3 billion people, India has the world's second-largest population, where most of the population lives in rural places, and about 22% live under the national poverty line, incapable to access elementary healthcare. The majority of cancer patients seek treatment only when their disease has progressed to the point that they are experiencing severe symptom burden, necessitating PC.²³

Only a few palliative care centres exist in India, all of which are located in certain urban areas.⁹ The lack of access to PC services, particularly in rural regions, is a major problem. Access to PC is hindered by a lack of skilled human resources at the grassroots level as services are scarce in rural areas and people who reside in remote community places have inadequate access to transportation and communications, as well as low nutrition and health indices.²⁴

Considering the global perspective of PC distribution, a systematic review shows that the changes in the environment, infrastructure, and resources make organizing PC in rural locations more difficult than in urban areas.²⁵ Another systematic review finds the lack of guidance from national organizations to report the distinctive issues and limits tackled by the patients and healthcare workers reflects the limited attention on PC in a rural setting.²⁶ Long-standing scarcities of healthcare specialists, restricted availability of healthcare professionals and expert services, and geographical remoteness have all been identified in the international literature as important difficulties in providing PC in rural locations.²⁷

More patients from rural backgrounds will have access to and avail of both palliative and end-of-life care services if it is available in their respective society. To deliver successful community-based care, professional PC teams need to teach and support practitioners and nurses working together in the community.²⁸

It is essential to begin planning now for the provision of PCs in rural areas and to understand the major challenges that will be faced.²⁹ Providing care at end life should be meaningful to the person who is dying and the caregiver irrespective of their places of living.³⁰

Home care services

In India, PC service models include inpatient care, outpatient clinics, and home care services. Home care services will have continuity of care, and family caregivers will be empowered by learning simple and cost-effective patient care procedures.³¹ The ability to visit patients at home offers the best chance to both learn about their familys and homes health and to ask about it.² Home-based care is available to those with advanced cancer who choose to receive care in their own homes. It's also one of the few possibilities for people in remote areas who require a PC but can't get one because of a shortage of healthcare facilities.³² A survey of 3448 Pune residents was undertaken to determine the preferred place of death. The desired location of demise for the overall survey population was home (83%), followed by elsewhere (9.2%), and lastly hospital (7.7%).³³ With PC given in the household, family and caregivers have enhanced obligations and duties, like pain and symptom management. Information and training on practical aspects of home-based care, such as symptom and pain management, as well as nursing care, should be provided to families and caregivers.³⁴ Understanding patient characteristics, home-based PC utilization, and forecasters could support facility planners in allocating assets and covering services to suit the multifaceted necessities of PC patients.³¹ Home-based PC has to be delivered as part of the primary health care system in most cases by increasing home-based home care facilities, particularly those provided by healthcare workers in the community² Rural patients who are medically underserved can benefit from home-based PC interventions that can increase access to and delivery of palliative care.²³

To provide adequate palliative care services creating capacity in the health care system is necessary³⁵. Medical professionals, nurses, counsellors and social workers, supportive care workers, volunteers should be trained on following the needs, especially on communication skills and how to deliver bad news to patients and their families during training.³⁶ In a nation where palliative care knowledge and need are growing, volunteers from the areas can play a crucial part in achieving the goal of reaching out and offering holistic treatment to the wider masses. Being the backbone of home-based care, PC volunteers help those in need obtain health services and enhance their quality of life.³⁷ Volunteers will therefore play a crucial role in ensuring that palliative care services are socioeconomically accessible as the need for PC is still unmet in low-income nations like India.³⁸ The patients need to be identified beforehand. The local volunteers need to be recruited. They are the contact persons, who would inform the households regarding the date and time of the visit of the home-based palliative care team. Many times, a member of the home-based palliative team may directly contact a family member of the patient and inform the time of the visit. So, the household should possess a mobile or a telephone for easier contact.³⁹

Barriers and facilitators for integrating PC into primary health care in India

In most places in India, the utility of health services is still lacking. Developing palliative-care services in India is a huge problem due to a deficiency of resources, illiteracy, poverty, and a deficiency of information about the accessibility of health care facilities.³³ Personal barriers, such as a deficiency of proficiency and passion basis to care for critically ill patients, deficiency of interactive talks, cooperation between the PC team and informal mode of provision of health care, a deficiency of formal way of referral policy between the experts and primary care providers, are most of the aspect which is acting as barriers to providing care in the rural areas.⁴⁰

Incorporation of the public health system and long-term funding are required for PC to grow in a nation with limited resources.²⁶ Physically, mentally, and financially taxing is often caring for sick or disabled persons. By minimizing dependency on hospital outpatient and inpatient services, this integration may save money for healthcare systems and provide financial risk protection for patients' families as well as the inclusion of PC into primary healthcare improves patient satisfaction and quality of life.² PC integration into primary care enhances patient satisfaction and quality of life and decreases hospital costs, and duration of stay close to the end of life¹

Conclusion

PC services in India are not accessible to most of the population due to the unavailability of resources. Because most individuals who require PC prefer to be cared for and die at home, these provisions are seldom made practical in the current setting. Since there are many barriers to rendering PC at every hospital, the focus should be mainly on integrating PC into primary health care in the Indian population.

World Health Organization (WHO) is emphasizing all countries integrate PC at the primary health care level. This training may be useful when upgrading the PHC and sub-centres under Auyshman Bharath as health and wellness centres to provide comprehensive care to the people. Since primary health care workers are not much into the concept of PC, training them to give effective and efficient care to needy people to achieve universal health coverage is essential.

It would be preferable to increase their capacity to provide effective PC since primary health care centres across the nation provide basic medical assistance and because primary health care workers are the frontline employees, like ASHAs, who closely interact with the rural population. as well as it will help to understand the idea of PC and identify people who require it, and it will help to provide appropriate referral services as they are the first-line of contact at the community level. This intern can enhance caregiver involvement and better home care experience for the patient. This concept of integration of PC into PHC can reduce the big financial barrier and make it more accessible to the rural population at an affordable cost. In this funded project the team taken initiation to empower the grass root level health care workers on palliative care. This acquired knowledge could be implemented during their regular home visits and can provide comprehensive care to the needy people on time. As community health volunteers, ASHAs are eligible for the task- or activity-based incentives. Remuneration should be provided to the ASHA workers to identify the palliative care patients and bring them to the centers or the hospitals for regular follow-up. Providing incentives to the ASHA workers will motivate them as they feel they are valued members of the health system.

The eventual aim of household-based PC is to endorse, reinstate, and preserve a being's optimal level of ease, task, and well-being, containing care at the end of life. Understanding the expert's opinion is significant and can directly work on, policymaking and future exploration which would be generally acceptable for the implementation of well-coordinated PC delivery.

Credit Authorship Contribution Statement

Malathi G Nayak: Conceptualization, funding acquisition, review and editing. Radhika R Pai: Conceptualization, funding acquisition, writing, review and editing, Anita: Editing and Reviewing, Naveen Salins: Conceptualization, funding acquisition, writing, reviewing and editing.

Disclaimer statements

Conflicts of interest No potential conflict of interest was reported by the author(s).

Ethics approval None.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The study was enabled through the ICMR – ICRC funded project [RFC No.NCD/NTF/6/2019 20] dated 18.9.2019. This review article is a part of the funding project.

Notes on contributors

Radhika R. Pai

Dr Radhika R Pai, Assistant Professor, Department of Fundamentals of Nursing, Manipal College of Nursing, Manipal Academy of Higher Education, Udupi, Karnataka, 576104, India.

Malathi G. Nayak

Dr Malathi G Nayak, Associate Professor, Department of Community Health Nursing, Manipal College of Nursing, Manipal Academy of Higher Education, Udupi, Karnataka, 576104, India.

Anita Jesline Serrao

Ms Anita Jesline Serrao, Research Assistant, Manipal College of Nursing, Manipal Academy of Higher Education, Udupi, Karnataka, 576104, India.

Naveen Salins

Dr Naveen Salins, Professor & Head, Department of Palliative Medicine and Supportive Care, Kasturba Medical College, Manipal Academy of Higher Education, Udupi, Karnataka, 576104, India.