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The Asia Pacific Hospice Palliative Care Network

A Network for Individuals and Organizations
  • Cynthia R Goh
    Correspondence
    Address reprint requests to: Cynthia R. Goh, MD, Department of Palliative Medicine, National Cancer Center Singapore, 11 Hospital Drive, Singapore 169610, Republic of Singapore
    Affiliations
    Department of Palliative Medicine, National Cancer Center Singapore, Singapore, Republic of Singapore
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      Introduction

      The Asia Pacific Hospice Palliative Care Network (APHN) is a network of individuals and of organizations from the various regions of Asia and the Pacific that is actively involved in palliative care. It was registered as a legal entity in Singapore during March 2001, and has a rotating secretariat, which is currently based in Singapore.

      History of Development

      The formation of a regional organization to support the development of hospice and palliative care in Asia was rooted as far back as 1989, when the first regional conference in hospice care was held in Singapore. This was attended by over 250 individuals from 10 countries. Experts from developed countries, such as Dr. Mary Baines, Dr. Sheila Cassidy, and Mrs. Prue Clench from the United Kingdom, Dr. Rosalie Shaw from Australia, and Dr. Fumikazu Takeda from Japan, shared their experience. The camaraderie and sharing of knowledge encouraged individuals and groups in their endeavors in setting up hospice services in the region, and new groups felt inspired to start their own services. Because the state of palliative care services was still rudimentary or non-existent in most countries of the region at that time, it was decided that time and energy were better spent on building up of services, rather than the formation of a regional grouping.
      A second conference with the theme “Hospice Care in Asia” was organized in Singapore seven years later in 1996. This was attended by over 500 delegates from 22 countries. Luminaries from the West included Dame Cicely Saunders from the United Kingdom, Dr. Jan Stjernsward of the World Health Organization's Cancer and Palliative Care Unit in Geneva, Dr. Kathleen Foley from the Memorial Sloan-Kettering Cancer Center, United States, and Professor Neil MacDonald from Canada. A post-conference workshop attended by 112 front-line palliative care workers and academics from 15 countries worldwide discussed a curriculum for palliative care for Asia. A direct result of this conference in 1996 was the resolve to organize future hospice/palliative care conferences in the region. Plans were made to have the next meeting in Hong Kong, and thereafter in Taiwan, Japan, and Korea.
      A separate initiative to form a network of individuals working in palliative care was the result of a dream by a cardiologist with a wide interest in medicine and the arts, Dr. Shigeaki Hinohara, from Tokyo, Japan. Now 90 years old, Dr. Hinohara, who is a great admirer of Sir William Osler, was inspired by the concept of hospice from the west. He visited many hospices worldwide and built his own, named Peace House, near Tokyo, which is modelled on the Cottage Hospice in Perth, Australia. He had access to funds from the Sasakawa Foundation (now the Nippon Foundation), and he brought together individuals working at the forefront of palliative care in the southeast Asian region to meet in Tokyo. A series of these meetings took place, starting in 1995. Those who attended were leaders in the field of palliative care in their respective countries, and were actively involved in patient care and service development. They formed friendships and developed a value system, which underpinned the formation of the regional organization. They called themselves the Asia Pacific Hospice Network.
      By the time of the third meeting of the group, which took place in Hong Kong in conjunction with the November 1997 4th Asia Pacific Cancer Congress, the decision was taken to form a legally registered regional organization for palliative care workers who shared a set of values and norms of behavior. The debate on euthanasia was raging worldwide, and early on, the group took a stand to clarify that the provision of palliative care did not include a euthanasia service, an issue that was, up until then, not clear in the minds of participants from several countries.
      The road to developing a Constitution to govern the organization and obtaining legal registration took another two years. Issues which needed to be resolved included the structure of the organization, categories of membership, voting rights, the make-up of the governing council, the location of the secretariat, and the place of legal registration. There were political sensitivities that had to be taken into account, such as the position in an international organization of Taiwan and Hong Kong in relation to China, and the problem of the two Koreas. It was decided that representation could not be done according to country or nation, but the word “sector” was coined, which defined geographical areas which can comprise more than one country or only part of a country. So Taiwan, Hong Kong, and China were considered three separate sectors, while Korea comprised one sector. There was much debate on the name. Both “hospice” and “palliative care” were eventually included. Definition of the region was also debated. The Pacific Rim sectors wanted the name “Asia Pacific,” in preparation for members from Polynesia to join the Network. India decided it should join the Network because it shared many of the problems faced by other Asian nations. There were two main contenders for place of legal registration: Hong Kong and Singapore. Both were English-speaking sectors with good infrastructure for international law and disputes, and financial centers with no currency restrictions, essentials in the choice of place of registration. The Network decided eventually on Singapore as the place for legal registration, in sympathy with the concerns Taiwan had for belonging to an international organization registered in Hong Kong, which is now part of the People's Republic of China.
      One by one, these issues were resolved, largely by consensus. A working secretariat based in Singapore, and funded by charitable funds from the wealthier countries of the region—Japan, Taiwan, Hong Kong, and Singapore—was set up in May 1999 to oversee the process of registration. Dr. Rosalie Shaw, a veteran in palliative care, who had set up the first hospital-based palliative care unit in Australia, and who had spent by then 7 years building hospice home care in Singapore, was appointed the first Executive Director. The secretariat was housed in the new Department of Palliative Medicine at the National Cancer Centre Singapore, which provided the infrastructure and one-third of the funding. The APHN was legally registered on 1 March 2001.

      Objectives of the APHN

      The objectives of the APHN are stated in its Constitution as:
      • 1.
        Facilitating the development of hospice palliative care programs and other relevant initiatives
      • 2.
        Promoting professional and public education
      • 3.
        Enhancing communication and dissemination of information
      • 4.
        Fostering research and collaborative activities
      • 5.
        Encouraging co-operation with other professional and public organizations
      Members, both individuals and organizations, are required to subscribe to a set of values, which included respect for the rights of an individual. The declaration of its position on euthanasia formulated in 1997, which states: “The Association values every moment of life and does not support any action that has the intention of shortening a person's life” was also incorporated into the Constitution as part of the values of the Network.

      Organizational Structure

      The APHN has a complex structure, in order to allow for regional representation, and for both individuals and palliative care organizations, which may be service providers or umbrella bodies, to have a stake in running the organization. There are both individual and organizational members. Only the latter has voting rights. However, only individual members can conduct business on behalf of the organizational members, and only individuals can sit on the governing Council.
      As mentioned, sectors are geographical regions in which both individual and organizational members are located. Each sector is allowed a maximum of 2 seats on the Council. Half the seats on the 20-member Council are appointed by the sectors on a rotational basis. The other half comprises 6 elected members and 4 co-opted members. The structure tries to ensure that individual members run the APHN with the support of the organizations from their sectors, and encourages organizational members within a sector to work together to agree on an individual to represent the sector.

      Achievements of the APHN

      Growth of Membership

      In the short year since it achieved legal registration, the APHN has been able to recruit 95 organizational members and 396 individual members from 20 different countries. A few of these members come from outside the 14 founding sectors, which include: Australia, Hong Kong, India, Indonesia, Japan, Korea, Malaysia, Myanmar, New Zealand, Philippines, Singapore, Taiwan, Thailand, and Vietnam. Potential new sectors include Brunei, Cambodia, China, Pakistan, and Sri Lanka.

      Visiting Faculty Scheme

      Part of the reason for employing Dr. Rosalie Shaw as Executive Director of the APHN was in order to kick off a Visiting Faculty Scheme to member countries. Experts from countries with more developed palliative care services are encouraged to visit countries with services in earlier stages of development, in order to share expertise and foster local efforts. Clinical bedside teaching, often in a patient's home, is encouraged, with emphasis on local problem-solving using existing resources. The Western model of lavishly equipped inpatient hospices is often not appropriate in countries with huge populations living in great poverty, so new models of home care or outpatient care are being explored by countries of the region. Lessons from these initiatives are shared by members of the Network.

      APHN Directory

      To encourage networking, including clinical referrals, a directory of palliative care organizations in the region has been compiled. It includes both organizations which act as umbrella bodies within a sector and the service providers. Two editions of the directory have already been published in January 1999 and in May 2001. An updated copy is available electronically.

      The Asia Pacific Hospice Conferences

      The third Asia Pacific Hospice Conference (APHC) was held in Hong Kong in October 1999. By that time, the APHN secretariat had been set up since May 1999, and serious negotiations on the Constitution were in progress.
      The fourth APHC took place in Taipei, Taiwan in May 2001. With the official date of legal registration of the APHN on 1 March 2001, this occasion was used to mark the inauguration of the APHN as a legally registered entity.
      Preparations are well underway for the fifth APHC to take place in Osaka, Japan, in March 2003. The sixth APHC is already being planned for Seoul, Korea, in 2005. Applications to host the seventh APHC in 2007 will be considered in Osaka in 2003.

      Future Plans

      The APHN website will be launched shortly in mid 2002 under the domain name www. APHN.org.
      The Palliative Care Curriculum for Asia is awaiting publication. A book on stories from palliative care in the region is being prepared. A collection of case presentations using local cases is being collated into a workbook for teaching. Link-up of local palliative courses with regional universities to provide accreditation for training is being pursued.

      Types of Services and State of Development

      Table 1 shows the number of palliative care services in various sectors of the APHN. The sectors of the APHN exhibit widely different stages of development of services. On the one hand, Australia and New Zealand have well-developed palliative care services, which are integrated into the mainstream of government-funded healthcare services. The more developed countries of East Asia, such as Japan, Korea, Taiwan, Hong Kong and Singapore, have moderately developed services, partly or wholly funded by either the government or health insurance. Accreditation of staff and services for licensing and clinical audit purposes are being introduced in these sectors.
      Table 1Palliative Care Services in the 14 Sectors of the Asia Pacific Hospice Palliative Care Network
      SectorOrganizations Providing Hospice/Palliative CarePopulation (millions)Estimated Annual Cancer DeathsEstimated Coverage by Palliative Care Services
      Australia2301934,58756%
      Hong Kong15710,00050%
      India491,000
      Indonesia622560,991
      Actual statistics not available.
      Japan102127295,4825%
      Korea28N Korea 21 S Korea 45
      Malaysia30227,825
      Actual statistics not available.
      24%
      Myanmar150<1%
      New Zealand4247,46183%
      Philippines207235,000
      Singapore1044,23766%
      Taiwan282232,0005%
      Thailand360
      Vietnam57951,000
      Actual statistics not available.
      <1%
      a Actual statistics not available.
      Depending on local cultural preferences and resources, the types of service as well as specific clinical practice, such as the use of intravenous lines, are widely different. In most countries, palliative care services were started by volunteers, or charitable NGOs. In Singapore, services started as hospice home care, which is now is well-developed and widely accepted. Inpatient palliative care beds are located only in free-standing hospices, while hospitals have consultative services only. In Japan, Korea, and Taiwan, hospital-based inpatient palliative care units are more commonly found, while Hong Kong uses a combination of both home care and hospital-based inpatient care. Free-standing inpatient hospice units provide only a small proportion of the palliative care beds in these latter countries.
      In the developing countries of the region, such as Indonesia, Thailand, and the Philippines, hospice home care is seen as the way forward for providing population coverage for palliative care. Each sector, or sometimes region within a sector, had its own approach to the problem, depending on local opportunities or obstacles. The following two sectors illustrate the kind of development that is going on.

      Hospice Care in Malaysia

      The hospice movement in Malaysia began in 1990 in two centers: Penang and Kuala Lumpur. Both are urban areas and both initiatives were started by NGOs using funds derived from charitable donations. Hospice home care services were developed in Penang by the National Cancer Society Penang Branch and in Kuala Lumpur by Hospis Malaysia. Progress was slow because of the lack of trained staff. In 1998, the Ministry of Health introduced a policy requiring every district and general hospital to have a small number of palliative care beds. Few extra resources were put in, but the NGOs took up the challenge of training government hospital staff to run these beds. A pilot project started in 1995 at the Queen Elizabeth Hospital in Kota Kinabalu in Sabah, East Malaysia was taken as the model. This was a 10-bed palliative care unit (PCU) carved out of a surgical ward. The unit worked closely with a volunteer-run hospice home care program in the community to provide an efficient service that allowed patients to have their symptoms controlled in the PCU and then go home to be followed by the home care service. Morphine was made available through the hospital pharmacy. The unit was active in teaching and training, and soon began helping other hospitals to set up PCUs. Malaysia currently has PCUs in 12 government hospitals, and 18 NGOs run hospice home care services in urban areas. An umbrella body, the Malaysian Hospice Council, was formed in 1998, which currently has 15 members.

      Hospice in Myanmar

      The beginning of hospice in Myanmar (formerly known as Burma), like some early services in the West, came as the result of a personal tragedy. In 1997, U Hla Tun, a senior partner in Myanmar of a top international accounting firm, lost his 46-year-old daughter, his only child, to leukemia. The experience of her illness and eventual death led U Hla Tun to use his personal fortune to start a hospice home care service in one of the poorest districts of Yangon (Rangoon) in 1998, and to build a 40-bed inpatient hospice, which opened in September 2000. He asked the APHN for help, and the Executive Director Dr. Shaw visited Yangon in March 2000, and spent two weeks teaching hospice and hospital staff at lectures, ward rounds, and visits to patients' homes. U Hla Tun managed to raise funds from the public to set up the U Hla Tun Foundation to sustain the hospice services. A second hospice is being planned in Mandalay. Fig. 1, Fig. 2 portray aspects of hospice care in Myanmar.
      Figure thumbnail gr1
      Fig. 1Hospice home care nurses from the U Hla Tun Hospice, Myanmar attending to a patient with cervical cancer at home.
      Figure thumbnail gr2
      Fig. 2The hospice home care team, a doctor and two nurses, at a patient's home in Myanmar.

      Conclusion

      A new initiative, the APHN, a network to support individuals and organisations involved in hospice care, has been set up in Asia and the Pacific. Exciting developments in hospice and palliative care have been taking place in the region in recent years. The different cultures and social circumstances of each country dictated different approaches to the provision of care. Most efforts were not initiated by governments, but by individuals, charities, or religious orders, inspired by the concept of holistic care. Although most countries of the region shared similar problems, such as lack of trained manpower and government funding, no single formula for development could be followed which would work in all countries. The APHN recognized and respected the fact that efforts to develop services had to be initiated by individuals within a country, who are fired by the idea and ideals of the hospice concept. The Network tries to encourage and sustain these individuals, and to provide them with the skills necessary to build their own services. It is hoped that the APHN will continue to serve this real need, as palliative care services continue to grow and develop in the region.