Dr. Thotampuri Shanthi Prasoona
MBBS, DMRT, Dip In Palliative medicine (Cardiff)
In India, more than one million new cases of cancer are detected each year and two-thirds these of patients present with advanced stage and are treated with palliative intent (ICMR 2002; Lancaster University 2006; WHO 2012). This inevitably brings the need to provide out-of-hours services. The core value of palliative care is to be sensitive to the medical, psycho-social and spiritual needs of patients primarily but nevertheless caregivers also form an integral part by contributing for patient’s care. India with it’s vast population includes diverse cultures, religions, beliefs, languages and varied perspectives about illness and death. The increasing patient load and inadequate human resources have also added to demand for intense out-of-hours service (Chaturvedi 2008; Kitzes & Berger 2004; Gielen et al., 2015).
Apart from the challenges mentioned above, other barriers to treatment and out-of-hours services can be categorised and listed as follows-
(1) Global barrier: There is wide disparity in the quality of Palliative care services in developed and developing countries. There is a need for policy for healthcare access and availability of medications in low income countries to provide out-of-hours services. (Bhatnagar & Gupta 2015; Bhatnagar & Gupta 2016)
(2) Economic barrier: The cost and availability of drugs like morphine and healthcare in poor income families without medical insurance is a major hurdle (Jennings & Morrisey 2011). The human resourcing of medical professionals, nursing staff, psychologist, social worker, pharmacist and occupational therapist to form a team can be difficult. There is need for out-patient clinics, in-patient wards for respite care or hospice and transport for homecare (Kar 2015).
(3) Professional barrier: Reluctance of other health professionals to refer to palliative care due to lack of knowledge, poor communication regarding realistic expectations, prognostic uncertainty, jeopardising reputation and association of palliative care with death (Ordons et al., 2016). These factors play a role when accepting care for terminally ill patients from palliative care specialist in to the community (Dalberg et al, 2013). There are compassion fatigue, burnout and nervous breakdowns associated with health professionals who are over-burdened by care. There is need for improvement of knowledge, skills and long term stress management plans with achievable goals in healthcare team. (Dalberg et al, 2013; Sanso et al, 2015).
4. Care giver perspectives: Long-term and continuous caring for the patient can lead to caregiver strain, burnout and loss of income in to the family (O’Hara et al, 2010; Adam et al, 2014). Most of the times the caregivers are overworked and obligated in caring for the patient by putting off their personal needs. Caregivers may be afraid to be compliant with-in-hours services and local GPs for out-of-hours due to poor socio-economic conditions and availability public transport (Kandasamy et al, 2008).
At Christian Medical College-Vellore, we have the opportunity to cater to a large number of patients with their diverse needs necessitating innovation. Patient and caregivers are assessed and treated by our multi-professional team. Since majority of patients presenting to us belong to poor socio-economic status, we encourage simple, practical and cost-effective methods to provide good quality of care without adding to the burden of their families. More often than thought, several families abandon these patients due to their poor socio-economic conditions. Therefore, we empower caregivers in patient’s care with subsidised essential medications to provide near-total palliative care in spite of inadequate human and economical resources. The comparison of interventions at hospital, conventional and community showed that community-based services at home provided satisfaction for patients(Greer et al.,1986). End of life care at home is a proven, cost-effective and preferred choice by the patients and caregivers (kulkarni et al., 2014 and Macaden et al., 2014). In North Kerala, extensive volunteer networking system and palliative care services are easily accessible to the patients. (Singh & Harding 2015; Kumar 2007; Rajagopal 2015). There are community outreach programmes run by community medicine doctors and nurses who refer patients to palliative care (Kaye et al, 2015). Teaching home care was appreciated by the families which can avoid loss of work and expense of public transport. Many a times we have even encouraged neighbours and friends to support family during difficult period.
The common problems encountered for need of out-of-hours services are tube related (feeding, tracheostomy, urinary), digestive, nutritional and respiratory problems (Worth et al., 2006; De Korte et al., 2012). The combined effort of each team member during in-hours service and home visits through communication regarding trajectory of illness, anticipatory care, providing support systems of self-sufficiency and instilling self-confidence with reagrd to administration of medication can affect quality of life (Wentlandt et al., 2012; Trice & Prigerson 2009). We are not able to use syringe drivers in the community due to limited availability. We are following other simpler methods of using bolus preloaded syringes or by placing scalp vein needle subcutaneously for parenteral medications and teaching tube related nursing care to the caregivers which decreases the need for out-of-hours services (Oneschuk 1998; Bartz et al., 2014; Henrique et al., 2008; Negro et al., 2007). These modifications over standard hospital delivery proved to be less expensive, easy to manage and not limited to syringe driver availability.
Our compensatory efforts to decrease out-of-hours services include the following-
1. Our nurses spend considerable amount of time to teach caregivers to identify and manage breakthrough symptoms with medications which allows good quality of care and at the same time diminishes the desperation for out-of-hours services. Providing acute symptom management kit with colour-coded plastic boxes also proved to be a cost-effective and efficient method.
2. Our social worker regularly contacts and encourages patients and caregivers for reviews to outpatient clinic. His assessment of socio-economic status helps to understand the ground reality and develop protocols to provide cost-effective care.
3. One month training in palliative care for all residents of oncology, radiotherapy, geriatric medicine, pulmonary and family medicine. Out-of-hours coverage care for patients to emergencies is provided by residents who are trained with us and often in liaison with us.
4. We use a directory with palliative care services addresses for all over India (Pallium India). These services can be nearest accessible to patients once they go back to their home towns with their medical reports.
5. Education through telemedicine-GPS are trained about basic palliative care symptom management, morphine accessibility and setting up organisation with limited resources.
6. Health professionals from mission hospitals are trained and then are encouraged to set up palliative care unit in their hospitals.
Therefore, low-income countries there is a need for common global policy for subsidised healthcare and medical insurance schemes. Fellowship and Masters courses in the academic stream and workshops will create more skilled human resources for development of palliative care (Head et al., 2016). Early integration of palliative care into oncology will be beneficial for patients and caregivers for coping with the disease course, prognosis, treatment and end of life care (Van Beck et al., 2016;Vanbutsele et al., 2015). Protocol guidelines needs to be modified according to the available resources, but need to be culture-specific. A better model would be integrating local general practitioners, rural nurses and volunteers in to our service so that we can provide more coverage with regular follow ups. A generalist health care professional and can be tagged with specialist palliative care professional through referrals, telephone and monthly meetings (Mitchell 2002;Mitchell GK et al., 2008;Quill & Abernethy 2013). Palliative home care models need to be evaluated, audited and then be used to implement necessary changes in the services to improve standard of care. Geater number of hospices, day care centres, availability of home care nurses and community volunteer network can improve patient care.