The Challenge of Palliative Care Development in Nepal

BACKGROUND

In Nepal, palliative care occupies a very special place in traditional medical practice. According to Hindu tradition, a dying patient is taken to a place called a ghat on the bank of a holy river where cremation usually takes place. The traditional medical practitioner at the ghat, called the ghat vaidya, available in major ghats is entrusted to keep a close watch on the state of the patient. Hindus believe that spending the last few moments by the holy river ensures that the soul will enter heaven after death. The ghat vaidya helps to facilitate this. The dying patient is administered a special medicine known as Praneswor by the ghat vaidya and it is believed that the last straw of life is rekindled once more. Consequently, the patient dies comfortably without shortening life itself. Sometimes unexpected things happen and the patient lives longer. This traditional medical practice of palliative care could be an area for research.

The palliative care system developed in the West was introduced in Nepal with the establishment of the B. P. Memorial Cancer Hospital at Bharatpur in 1995. It was the first cancer hospital on Nepal. Bhaktapur Cancer Hospital, in a smaller scale, came into existence after some years. With the functioning of these two cancer hospitals, a strong need was felt for a hospice facility for patients in the terminal phase of their illness. As a result, a palliative care service under the name of Hospice Nepal was begun in 2000 at Lalitpur. A non-profit, non-governmental organization, it is still functioning well.

THE DEVELOPMENT OF PALLIATIVE CARE SERVICES IN NEPAL SINCE 2000

At the beginning of the 21st century, there was practically no trained manpower for palliative care, and the supply of essential medicines, particularly opioids, was severely restricted. The management of Hospice Nepal had advocated strongly to the concerned authorities for removing unnecessary barriers to the supply of oral opioids but achieved limited success in setting up a regular supply system. In this context, in 2002, INCTR's palliative care team, made a firsthand study of the general status of palliative care services in Nepal and agreed, with Nepalese colleagues, on an action plan for the development of palliative care services in Nepal. An important component of the plan was to create a study group charged with finding practical solutions to the issue of palliative care development. Four main areas were identified:

(1) Specific training of various health professionals for skill develop- ment in palliative care.

(2) Assuring the availability of a sufficient supply of oral opioids.

(3) Sharing skills and knowledge with local medical stakeholders by organizing workshops, semi- nars, etc.

(4) Extension of palliative care ser- vices to other hospitals to improve access to care.

These four important tasks are critical aspects of the groundwork for palliative care development and might be considered the pillars of INCTR’s PAX program.

INCTR’s team of palliative care experts, in collaboration with major hospitals at Kathmandu and the local managerial support of NNCTR/INCTR (INCTR’s Nepalese branch), initiated this new program in 2003. INCTR and its team of palliative care experts provided the necessary funds and technical advice to ensure success.

Virginia LeBaron teaching nurses at Kanti Children's Hospital.

1. Training in palliative care skills

In 2003, six medical doctors from five different hospitals – Hospice Nepal, Bhaktapur Cancer Hospital, Tribhuvan Teaching Hospital, Scheer Memorial Hospital, and Patan Hospital – were selected for a two-week palliative care intensive training course at the Institute of Palliative Medicine in Calicut, India. Two staff members from NNCTR/INCTR also participated in the training. The training was very successful and all the participants were very impressed with the Calicut model which was felt to be very relevant to the needs and available resources in Nepal. The training made it possible to initiate new palliative care units or to improve the ongoing care services. In the same year, 13 nurses from seven different institutions – Hospice Nepal, Scheer Memorial Hospital, Bhaktapur Cancer Hospital, Bir Hospital, Tribhuvan Teaching Hospital, Kanti Children’s Hospital and two staff members from NNCTR/INCTR, were sent to Calicut for six weeks training. These training programs were fully funded by INCTR. Most of the doctors and nurses are still actively involved in palliative care services in different institutions.

2. Improving the availability of oral opioids

The INCTR PAX team and their counterparts in Nepal have held many meetings with the concerned government officials and other stakeholders for improving the availability of oral opioids; drug availability has substantially improved since then.

3. Sharing skills and knowledge with local stakeholders

In 2003, an International Symposium on Pain and Palliative Care was organized with the participation of the INCTR PAX Team, local medical practitioners, medical suppliers and social workers from NGOs. The symposium created substantial interest in palliative care and provided basic knowledge of the principles of palliative care to the participants. It included an interactive session, which was well attended.

In 2005, a one-day workshop on improving cancer care in Nepal through national and international collaboration was organized in which INCTR's President Dr. Ian Magrath also took part. It was a successful workshop in terms of raising interest and enhancing collaboration among different stakeholders. In 2006, another International Workshop on Advanced Palliative Care in Nepal was organized. Each of these workshops and symposiums, the local management and organization of which was undertaken by NNCTR/INCTR, included more than 60 stakeholders.

4. Extension of palliative care services

Following the skill development training and workshops, many participating hospitals and institutions were encouraged to have at least a few beds in the hospitals reserved for palliative care. Bhaktapur Cancer Hospital, Kanti Pediatric Hospital and Scheer Memorial Hospital initiated palliative care units. Hospice Nepal initiated home care services and INCTR contributed the funds to buy an economical vehicle for this purpose as well as funding to support the development of palliative care programs at Scheer Memorial Hospital and Kanti Hospital. Scheer Memorial Hospital had started a hospice unit with 10 beds, but it was found unsustainable to run as a separate unit. At present it has reserved a few beds for palliative care and is now running well. Bhaktapur Cancer Hospital has increased the number of dedicated palliative care beds to 10 and is planning to expand the unit even further in a separate wing exclusively for palliative care.

Health Institutions Providing Palliative Care Services Beds Number of patients tr eated in hospital/ho spice based services between 2004 - 2006 Number of patients treated in home care service between 2004 - 2006 Remarks /Total of patients seen between 2004 - 2006 Hospice Nepal, Lalitpur 9 711 232 943 Palliative Care Service in Bhaktapur Cancer Hospital, Bhaktapur 12 302 - 302 Palliative Care Unit in Sheer Memorial Hospital, Banepa 10 54 - 54 Pain Clinic in Tribhuvan University Teaching Hospital, Kathmandu - 123 27 150 Palliative Care Service in Bir Hospital, Kathmandu 3 NK - NK Palliative Care Service in Kanti Children Hospital, Kathmandu 5 NK - NK Total 39 1217 259 1449 Table 1. Institutions participating in NNCTR/INCTR Pax Program in Nepal between 2004 - 2006. NK = Not known.

Present State of Palliative Care and Future Strategy

Since the year 2000, and particularly after the training programs held in 2003, there have been many initiatives related to the development of palliative care services, inpatient and outpatient, in a number of institutions and to provide home-based palliative care. Substantial progress has been made in expanding the total number of palliative care beds and many hospitals have indicated an interest in initiating their own palliative care services – now made possible by the increased number of doctors and nurses trained in at least the fundamental

INCTR PAX initiatives in Nepal have been generously supported by the Open Society Institute (OSI).

principles of palliative care. Many short-term training courses have been organized, but a large number of medical professionals, and other stakeholders are yet to be convinced of the importance of palliative care, or remain uncertain how best to incorporate palliative care services into other health services. There is doubt about making decisions on when patients require end-of-life care. Consequently, there is variable success in the delivery of effective care, which is institution-dependent. For example, hospice-type palliative care services were insufficiently used at B. P. Memorial Hospital at Bharatpur and the Scheer Memorial Hospital at Banepa, unlike at Bhaktapur Cancer Hospital. The main reason for this is that the Bhaktapur Cancer Hospital is located within a large catchment area and provides services for other hospitals and the population at large, whereas B. P. Memorial and Scheer Memorial do not have such large catchment areas. Hospice Nepal also has a large catchment area but is free-standing and not associated with a cancer treatment facility. The home-based palliative care services provided by Hospice Nepal are being increasingly used. Clearly, the palliative care needs of both institutions and regions within Nepal need to be identified, and an appropriate mix of palliative care services established, in order to ensure that even people from remote areas have access to care. At present, it would appear that this is best achieved by helping to develop tertiary palliative care centers that can also provide training, education, research and, where necessary, consultation. Such centers could then function as central nodes on regional networks that reach out into the community. This approach has been successful in Kerala, India, but it will be some time before a network of this kind can be established in Nepal.

Palliative Care sensitization workshop for nursing students at Scheer Memorial Hospital (SMH).

An assessment of the general state of palliative care in Nepal makes it clear that it is still not in the mainstream of health services. Progress made during the last several years needs to be consolidated. Most medical colleges, nursing schools and health institutions do not have palliative care in their curricula, even as optional training. The Nepal government does not have a clear policy of developing palliative care services accessible to all patients in need. Since the B. P. Memorial Cancer Hospital is the only government cancer hospital, the Ministry of Health tends to rely upon this single institution for initiatives relating to cancer. However, palliative care extends beyond cancer, and a single hospital cannot provide more than regional coverage for palliative care. When patients are referred for care from more distant regions, provision must also be made, ideally, for them to receive palliative care in their own community. Increasing access to care must clearly be developed in a series of coordinated steps, and the successes of recent years indicate the feasibility of expanding palliative care to an ever increasing fraction of the population.

Palliative Care sensitization for nursing students at Nepal Institute of Health Sciences (NINS).

This year, NNCTR/INCTR, with financial and technical support from INCTR and its PAX program, is mainly concentrating on sensitization programs. Our primary goal is to reach as many health workers and medical trainees as possible in order to give them a better understanding of the need for palliative care, and to impart some of its basic principles. A major objective is to ensure that palliative care services are harmonized with other health services, although this will take some time to accomplish. We would like, along the lines of INCTR’s fundamental strategy for increasing human resources and access to care, to support the development of the kind of tertiary-level palliative care center described above. In order to accomplish this goal, as well as to increase sustainable access to care for a growing proportion of the population in more remote regions, it will be essential to first secure the support and participation of the government, International NGOs, local NGOs and others. Progress in improving communications with each of these stakeholders has been made, and we intend, with the help of INCTR, to ensure that it continues.

Surendra Bahadur Bade Shrestha,
Director/President, NNCTR/INCTR,
Kathmandu, Nepal