The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. Non-hospice palliative care is not dependent on prognosis and is offered in conjunction with curative and all other appropriate forms of medical treatment. Definition Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. pic] Figure 1 Palliative care: • provides relief from pain and other distressing symptoms; • affirms life and regards dying as a normal process;• intends neither to hasten or postpone death; • integrates the psychological and spiritual aspects of patient care; • offers a support system to help patients live as actively as possible until death; • offers a support system to help the family cope during he patients illness and in their own bereavement; • uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; • will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Evolution Of Palliative Care Programs In North KeralaKerala, in south western India, has two-thirds of the approximately 100 palliative care services in the country. These services cover a population of 32 million in a country of over a billion people. Fifty-seven of the 65 centres in Kerala belong to a network called the Neighbourhood Network in Palliative Care. 1 Early Palliative Care Clinics In Northern Kerala The pain and palliative care society (PPCS) a nongovernmental organization (NGO) began at Kozhikode (a. k.
a. Calicut) in 1993. An outpatient clinic was set up at the Kozhikode medical college. Subsequently, a memorandum of understanding was signed with the government of Kerala.The government gave permission to the NGO to work in the premises of the medical college and also agreed to provide a few nonmedical staff and medicines. Other needs, such as providing remaining staff and medicines and finding the remaining expenses to run the establishment had to be met by PPCS. Since its inception, it was clear to the founders of PPCS that professionals alone would not be able to carry the entire weight of the task of looking after chronically ill people but would also need the support of the community. The clinic itself began with one volunteer and a part time doctor.
Other volunteers were encouraged to join the initiative, and at that time they were seen as people to help with the nursing tasks. A volunteer could work in a clinic or a home care programme only during the hours in which these programme were run. Hence, almost all the volunteers worked in the clinics, which often were far from their place of residence, and they often worked in isolation as there were few other volunteers from their locality. So initially, the voluntary activities were clinic centred, and because of this, many who were employed elsewhere could not find a ‘slot. ‘The first link centre of the PPCS was established in 1996 at Manjeri in the neighbouring district of Malappuram. The method of setting up a new link centre was to train a doctor, or preferably a team of a doctor and a nurse, and to encourage them to set up a palliative care clinic in their area.
These ‘doctor initiated’ clinics had many limitations. First and foremost, they depended in many instances on a few individuals and did not have wide representation in the community where they were set up. Others secondary problems included difficulty getting the volunteers and difficulty raising funds from the locality.But the numbers of link centres did increase steadily.
2 From clinics to neighbourhood networks in palliative care (NNPC) During this period, it was noticed that the link centres at Nilambur in Malappuram district were more successful in coverage and fund raising. It was also noted that volunteers took the responsibility of planning and organizing the services, raising funds, administering the day-to-day activities of the programme, attending to and organizing support for the social and financial needs of the patients, and organizing rehabilitation programmes. The professional’s main role was attending to medical issues.It was also observed that persons coming from the same place as the patients were better at prioritising the needs of the patients and individualising the care that was provided. These observations were discussed with the palliative care teams which already existed in the district and also with new groups interested in setting up palliative care services.
Volunteers were trained and given the freedom and support to set up palliative care initiatives. Thus began the NNPC, which are now looking to develop into a sustainable community led service capable of offering comprehensive care to those needing palliative and long-term care.Initially, there was isolated resistance from health care professionals who thought that volunteers were ‘taking over’ and ‘dictating terms’ to them. The issues resolved as soon as it became evident that volunteers were not taking over but were supplementing the care given to the patients by attending to the nonmedical issues. Institute of Palliative Medicine The Institute of Palliative Medicine (IPM) is the leading training institution for palliative care in Asia.
An autonomous institution, it is the policy, training ; research wing of the World Health Organization Demonstration Project in Palliative Care for the Developing world.It is also the nodal agency for initiating and implementing community based palliative care programme under National Rural Health Mission (Kerala), a Government of India Project. Institute of Palliative Medicine works closely with local governments in Kerala. IPM is the technical advisor and implementing agency for Pariraksha, the comprehensive home care program by the Local Self Governments in Malappuram District. IPM is the Indian partner for the WHO Collaborating Centre in Oxford. Allotted space within the Medical College Campus itself by the Government of Kerala, Mr. Bruce Davis, founder of the W.Bruce Davis Trust supported the project ; helped build this facility.
Inaugurated on January 21st, 2003, admission of patients and training programs began by July 14th, 2003. The Institute of Palliative Medicine (IPM) was constructed to make palliative care available ; accessible to all those in need of it. To complete the total care provided by us to all our patients, here patients are admitted to bring difficult symptoms under control or to provide the carers respite care. Contact address: Institute Of Palliative Medicine Medical College, Calicut 673008 Kerala , India Phone: 00914952351452 Fax: 00914952354166 Email: nio. alliative. [email protected] com Webpage: www.
instituteofpalliativemedicine. org IPM – Operations [pic] Figure 2 1 LOCAL ACTIVITIES IPM collaborates with Local Self Government Institutions and Nongovernmental Organisations in the region to offer the following services. 2 Inpatient unit The inpatient unit can accommodate 32 patients, each with two relatives. Patients with chronic or incurable diseases get admitted for symptom relief, respite to the family or for terminal care. Patients for admissions are referred by health care professionals or community volunteers from community network from five districts in North Kerala.Referrals are also made from hospitals in the region. More than 700 patients get admitted the inpatient unit every year. All services for the patients and relatives including medicines, food, and stay are totally free.
Cost of Food at the unit is supported by various individuals and organisations, of which Bank men’s Club, an organisation for the bank employees has been the major one. 3 Home Care Programme Since patients with chronic or incurable diseases are in need of regular care for the rest of their life, the best option for them is care at home. Institute of Palliative medicine has two home care teams operating five days per week.The home care teams visit 60-70 patients at home every week. [pic] Figure 3 Home Care Unit [pic] Figure 4 [pic] Figure 5 Home Care Team to Patient’s Home 4 Footprints FOOTPRINTS is a new rehabilitation project initiated by Institute of Palliative Medicine with active participation of students from college in Calicut city. The pilot project is supported financially by Sir Ratan Tata Trust-Mumbai.
The pilot project was started in April 2009 in Kozhikode city area for the rehabilitation of chronically ill, paraplegic, bed ridden and chronic psychiatric patients.Patients are trained in footprint camps in which artists, students, craftsmen celebrities and palliative care volunteers actively get involved. After vocational training, raw materials are supplied to the patients at home and the products collected and marketed under the brand name Petals. 5 Community Care Centre for PLWHA IPM has a Community Care Centre for the People Living with HIV/AIDS in northern Kerala. The community care centre with ten beds work closely with the self help for PHLWA in the region and the Anti Retroviral Therapy units in Government Medical College, Calicut Caring for Childhood Cancer ; Chronic Illness (C4CCCI) Caring for Childhood Cancer ; Chronic Illness is a new project launched jointly by Palliative Medicine and Department of Paediatrics, Government Medical College, Calicut.
C4CCCI supports children with cancer and other chronic Illness. The project supports the cost of expensive medicine, investigations, travel and food for the children undergoing treatment at the Government Medical College. 7 Kidney Patients Welfare Association, Kozhikode The project, run in collaboration with palliative care society in Calicut city supports the needs of the patients with chronic renal disease.The patients are provided support for dialysis, medicine, transport and food for the family.
The project is now in its early phase, supporting patients within the Kozhikode Municipal Corporation limits. 8 STATE LEVEL ACTIVITIES Institute of Palliative Medicine works closely with the Government of Kerala in developing palliative care services in the government sector. 9 Arogya Keralam Palliative Care Project National Rural Health Mission (Kerala) has initiated a project in the state in line with Palliative Care Policy of Government of Kerala.Volunteers already working in the field for more than six months are eligible to apply.
8 Training For Volunteers: The programme starts with an exploratory session by a community volunteer, who talks about palliative care. Those who show interest and who are willing to spend at least 2 h every week helping patients in their area are enlisted and given basic training in groups of 10– 20. Those who successfully complete the training and are willing to continue are encouraged to sit together and make an action plan for chronically ill patients in their area.Volunteers who get involved in ‘hands on’ patient care are offered further training programmes such as ‘Train the trainer’ sessions, communication skills training, basic nursing skills training, etc. The basic training programme is 16 hours of interactive theory sessions and a minimum of four ‘clinical days’ with the home care team. The topics covered include 1.
Introduction to palliative care: this session discusses the philosophy of palliative care, relevance in the region, placing palliative care programmes in the ‘developing world’ context, etc. 2.Role of community: this session explores the role trained and untrained non professionals can play in making the life of chronically/incurably ill patient more comfortable. The practical issues, possible hurdles, and other difficulties are discussed. 3. Basics of cancer: since patients with incurable cancer continue to be the major group in need of palliative care, the prevention, early detection, treatment modalities, and palliative care for cancer are discussed in detail by a doctor in the team.
4. HIV/AIDS: the basics of HIV/AIDS, the social stigma, ways of overcoming it, etc. re covered 5. Assessment of patients: this session reaffirms the idea that all patients with incurable/chronic diseases will have many nonmedical problems. Assessment of patients’ problems needs a ‘holistic approach’ specific to the individual and not just a list of physical symptoms. 6. Communication: in a 5–6 h sessions involving group work and role plays, the trainees are exposed to main issues that arise while communicating with patients.
7. Nursing issues: a nurse discusses basic nursing care in relation to chronically ill or bed-ridden patients. 8.Home care: a discussion of practical issues related to visiting a patient at home and interactions with the patient and family.
9. Last hours: a discussion of issues related to terminal care. 10.
Assignments and projects: the trainees are expected to complete five written assignments related to various aspects of palliative care during the course. Towards the end of the course, they also sit together to finalize a project proposal based on the problems of patients in their area. 11. Evaluation: there is an evaluation at the end of the course and only those who secure 50% of marks are registered as volunteers. CERTIFICATE COURSE IN ESSENTIAL OF PALLIATIVE CARE This two month distance education course for doctors and nurses is now being conducted through 25 centres in India. The course offers 15 hours of contact classes and an examination at the end.
It has an optional second clinical placement. This ten day programme offers the candidate a clinical exposure at the regional centre to clinical visit to the patients. IPM is also the coordinating agency for this course. Management• Director , Institute of Palliative Medicine is responsible for running the institution A Supervisory committee formed by the government of Kerala with District Collector, Kozhikode as chairman and Principal of Government Medical College, Kozhikode as vice chairman supervises the activities of the institution. • An eighteen member Advisory Board helps the Director in the day to day administration Funding • 60% of the funding for the institute is from Government of India (National Rural Health Mission) and Government of Kerala • 20% of the funds come from Pain and Palliative care society to support the Inpatient unit and home care programme • 20% of the funds are from other non Governmental Organisations. pic] 1 FUND RAISING PROGRAM • Regular collection of monthly subscription @ Rs 10/- to Rs 5000/- from generous people. • Collection through “Hundi” by keeping small boxes in Educational Institutions, business centres, Offices, Bus stand, and from the general Public. • Sakkath from religious and willing people.
• Collection through Mosques and Religious Institutions, especially on auspicious days. • Contribution from celebrations, Festival feasts, Birthday party, Marriage ceremony and Housewarming and functions related to memories of departed souls, etc. [pic][pic] [pic][pic] Critical Remarks for NNPCNeighbourhood network in palliative care is a cost effective option for most of the developing world to develop much needed sustainable services for the chronically ill and dying patients. This experiment assumes extra significance because of the growing number of elderly people and people affected with incurable disease like AIDS and advanced cancer, who have no access to care in the face of rapidly escalating health care costs. In addition to the large number of patients who benefit directly from the programme, the NNPC programme also builds confidence and trust among individuals in the communities.Community participation in health care activities is a good way to help the growth and development of individuals.
The spirit of volunteerism with options for working in a team to identify and improve local issues helps people to achieve an immense amount of self-growth. This has been proved by the approximately 3000 community volunteers including people from all socioeconomic backgrounds and all walks of life – students, pensioners, housewives, teachers, professionals, manual labourers, etc. In addition, hundreds of people have been ‘waitlisted’ for training.Neighbourhood network in palliative care shows a possible option for palliative care and long term care for the so-called poor communities in the developing world. Recommendations There are two things which needs constant improvement for this model to sustain itself 1. Sustaining through Local Funding 2. Increasing the number of Volunteers Both the parameters require awareness building among the community.
A Proper Marketing plan should be prepared to increase the awareness of the program. Also there are many palliative care units operating individually in various places.The model uses very less IT framework and is mostly promoted through normal channels. Education for Patients and Family Members is an area that needs focus along with removing the information and communication gaps in palliative care. Key suggestion from our analysis would be promote an online Palliative care community which will host all the relevant and required information and improve the networking among the various nodes of palliative care. References: http://www. instituteofpalliativemedicine.
org/index. htm http://www. jpalliativecare. com [pic]