Public Health Perspective of Primary Palliative Care: A Review through the Lenses of General Practitioners

INTRODUCTION

Primary palliative care is an integral component of patient-centred primary care^[1] and general practitioners (GPs) play a pivotal role in providing palliative care in the community.^[2-5] Primary palliative care physicians provide symptom management for patients with chronic life-threatening illnesses and ensure that the care is provided in alignment with the patient’s and family’s wishes and values.^[6] They facilitate discussions around the goals of medical care, coordinate care between specialists and patients in the community, and provide appropriate referrals to a specialist palliative care team for complicated end-of-life needs.^[4,7] Therefore, integrating palliative care into primary healthcare will ensure universal access to palliative care.^[8]

SEEING PRIMARY PALLIATIVE CARE THROUGH THE LENS OF PUBLIC HEALTH

Disease, grief, and death are impacted by socio-cultural beliefs, relationships within family and society, and community engagement.^[9] An integrated public health palliative care model uses an evidence-based and cost-effective approach to address aspects of the sociocultural contexts of palliative care.^[9,10] It adopts a multidisciplinary approach, utilises social care systems, and ensures universal access to care.^[9-11] The supplementary document depicts the evolution of the public health palliative care association [Table 1].^[10,12-17]

The contemporary challenges of palliative care delivery, such as changing demographics, social isolation, inequity in service delivery, and professionalisation of dying, have prompted many to adopt a public health approach to palliative care delivery.^[8] The public health approach to palliative care is premised on the principle of community engagement, in which people in society own the responsibility of caring for each other.^[18] This approach empowers people in the community to support patients and families facing the end of life by responding to the needs and wishes of the dying patients and their families, creating leaders from within the community for sustainability, developing collaborations with community groups and stakeholders, and working in alignment with healthcare professionals.^[12,18-20]

THE BURDEN OF CHRONIC LIFE-THREATENING ILLNESSES IN A PRIMARY CARE SETTING

Worldwide, countries are experiencing an epidemiological transition with a rise in the morbidity and mortality from both non-communicable and communicable diseases, with noncommunicable diseases alone accounting for 71% of mortality globally and low- and middle-income countries (LMICs) facing a burden as high as 77%.^[21] Internationally, cardiovascular diseases, cancer, respiratory diseases, and diabetes account for higher premature mortality than communicable diseases.^[21-23] The impact of this burden is greater on LMICs as a result of their vulnerability to socioeconomic, geographic, and demographic factors.^[24] The double burden of communicable and non-communicable diseases threatens survival, obstructs education, and reduces productivity, impeding socioeconomic growth.^[24] This is further compounded by poverty and out-of-pocket health expenditure, which inhibits people from accessing healthcare services for the most treatable conditions.^[25] As a part of the sustainable development goals 3.8, palliative care was recognised as a fundamental component of universal health coverage.^[25] It is estimated that 40 million people each year will need palliative care, and 78% of this population lives in LMIC.^[16] Despite the high demand for specialist palliative care, only 14% of the world’s population currently receives it at the end of life.^[26] GPs act as fulcrums in the community and ensure that palliative care reaches those in need of it.^[27] They continue following on their patients through various trajectories of the disease, even while they are undergoing disease-directed treatment.^[27,28] Long-standing relationships with their patients and knowledge about their patient’s social and economic context act as facilitators for initiating early palliative care.^[29,30]

CARE IN ALIGNMENT WITH THE PATIENT’S AND FAMILY’S WISHES

Patients at the end of life feel secure in their home environment as they can exercise control over the situation.^[31,32] Research has revealed a wide variation in the preference for place of death among the population globally,^[33] ranging from 25% to 87% of the population preferring home death to 9–30% preferring inpatient hospice death.^[30,34,35] Patients with poor functional performance and severe physical or psychological symptoms prefer to be cared for at home.^[31,36] Strong family support, fortified by the ongoing continuous support by their GPs or home hospice teams, increases the likelihood of home-based care.^[31,33,36] Some patients prefer hospice- or hospital-based care when they feel that they are burdening their family members with the increasing intensity of nursing care^[31,33,36] or when they experience skeletal support from GPs or home hospice teams.^[30]

Caregivers’ preference for continuing home-based care for their patients ranged between 25% and 64%.^[30] Furthermore, home deaths are associated with better bereavement responses and overall caregiver satisfaction.^[32] Their response could be dictated by need rather than preference, their perceived level of competency in providing care, and the extent of support from community-based healthcare teams.^[30,37]

SUFFERING AT THE END OF LIFE

One of the main goals of good medical practice is to alleviate patients’ suffering.^[38] Patients suffering from chronic life-threatening illnesses experience multiple concurrent symptoms, which can have a negative impact on their quality of life.^[39,40] As many as, 63.1% of patients have moderate-to-severe physical and psychological symptoms at the end of life, and 24.4% of patients have a cluster of at least three symptoms of moderate-to-severe intensity.^[40-44] A systematic review published by Moens et al.^[39] demonstrated commonalities in physical and psychological suffering between advanced malignancy and non-malignant chronic life-threatening illnesses. Suffering is further exacerbated by the meaning patients attribute to their symptoms and by the association of these symptoms with their perceptions of existence.^[45] The fear of impending death, loss of autonomy and control over one’s surroundings, and a constant sense of insecurity about one’s future add to the complexity of suffering.^[45]

INTEGRATION OF PALLIATIVE CARE INTO PRIMARY HEALTH CARE

Patients and families develop a strong therapeutic bond with their GPs over prolonged years of care.^[46] They perceive a sense of security in their GPs and continue to seek advice from them until the end of life^[46,47] as their GPs are approachable, accessible, and would take time to listen to their concerns and feelings.^[48] An integrated primary palliative care model will ensure person-centred care and provide continuous support to patients and families facing chronic life-threatening illnesses.^[49]

Research shows that continuity of care is a vital concept that is known to strengthen the healthcare system.^[50] This occurs at three levels: Provider continuity (determined by the patient-doctor bond over time and harmonious relationships with colleagues and multidisciplinary teams), information continuity (the accessibility of patient information across the care continuum), and management continuity (coordinated care by a multidisciplinary team and resource mobilisation).^[51] However, GPs face challenges in providing end-of-life care in the community, which include identification of patients in need of palliative care, interpersonal communication, addressing patients’ and caregivers’ needs, clarity in roles and responsibilities between GPs and specialist palliative care teams, and coordination of service with specialists.

EDUCATIONAL PROGRAMMES IN PRIMARY PALLIATIVE CARE

GPs often have limited formal education in end-of-life care and their knowledge, skills and confidence in end-of-life care vary.^[3] Often, the first exposure to end-of-life care occurs in their clinical practice^[3]). Therefore, it is essential to train GPs in end-of-life care to meet the growing demand for end-of-life care.^[72]

The training needs of GPs in end-of-life care have been explored in scientific literature, with most training focused on pain control and other symptoms of advanced cancer.^[3] The knowledge gap includes ignorance about what palliative care entails and the possibilities of specific medical or nursing interventions in the home situation.^[59,73] They feel overwhelmed when they encounter an enormous range of complex symptoms.^[59,73] Furthermore, the inability to manage conflicts within the family and limited awareness of the patient’s preferred place of death preclude palliative care provision.^[59,74]

Multiple approaches to training in end-of-life care have been researched.^[75] For instance, didactic styles of training have been proven to change knowledge, skills, or attitudes, but are not effective in changing physician performance or behaviour.^[75] However, when learning is self-directed, self-regulated, engaging, and reinforcing, this can lead to a more definitive change in the physician’s performance.^[76] Training programmes that are interactive and involve the sharing of real-life experiences are shown to change physician performance and behaviour.^[75]

Multiple formats of training have been researched in end-of-life care and all of them have demonstrated positive outcomes in the knowledge and attitudes of GPs and their overall satisfaction with training.^[77] However, these interventions have shown only minimal improvement in professional practice or patient outcomes.^[77,78] Multifaceted interventions that include two or more training formats can have beneficial effects on GPs’ caregiving and patient-related outcomes.^[79-82] However, it is important to note that the complexity and concurrence of multiple symptoms and the seriousness of the targeted outcomes can impact patient-related outcomes.^[83] Feedback and reinforcement have been studied as integral components of educational interventions and found to be effective when specialist colleagues provide clear goals and specific action plans.^[83] Patient-mediated health interventions improve the performance of healthcare professionals through patient-reported health information, patient-led counselling and education, and patient feedback.^[84] This will increase the physician’s adherence to recommended clinical practice guidelines and recommendations as a measure for the quality of professional practice.^[84]

In addition to the training-related constraints, GPs’ own perspectives, values, and attitudes toward end-of-life care can affect care provision and patient outcomes.^[85] Among the external environmental factors, challenges at a personal and professional level and resource limitations constrain palliative care provision.^[59,73,85]

CONCLUSION

The rising burden of chronic life-threatening illnesses poses a great challenge to the healthcare system. The paucity of palliative care specialists increases the demand for a more decentralised approach to end-of-life care.^[12] GPs act as an important fulcrum in the community, supporting patients and families through the bitter experiences of end of life. Despite considering palliative care as an integral part of their clinical care, GPs have apprehensions about end-of-life care provision. They find managing physical symptoms, addressing patients’ and families’ emotional needs, and advance care planning, particularly challenging. Although studies have explored GPs’ training and educational requirements, there are no studies in India that have explored the motivations and challenges concerning their end-of-life care learning preferences. Moreover, research findings on GPs’ views on end-of-life care learning preferences might inform policy and practice and facilitate future training programmes in end-of-life care.