In 1999 Dr. Yoram Singer Traveled to:
The Swaziland Hospice at Home (SHAH) in Mbabane, Swaziland

Dr. Yoram Singer
Director of the Home Palliative Care Service and Lecturer at Ben Gurion University Faculty of Health Sciences, Beer Sheva, Israel

Highlights

As a result of Dr Singer’s visit, we have become a resource to our entire nation. We now reach out to provide hospice and palliative care to many more patients.

Swaziland Hospice at Home

Together we developed a program for training nurses in palliative care.

Dr Yoram Singer

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Excerpts from his report

"I quickly learned how the general health system operated in Swaziland, and how care of the terminally ill was incorporated into that system by meeting with SHAH staff and key health system personnel. I made home visits with nurses from Swaziland Hospice At Home (SHAH) and visited several government hospitals.

The SHAH staff consists of a few dedicated nurses who deliver high quality palliative care with limited resources. The staff and I spent a full day in collaborative planning and began to outline achievable goals which reflected local practices and needs for hospice and palliative care.

Physicians in Swaziland have had no formal palliative care education and are generally unwilling to provide such care. In the future, it will be important to educate doctors in [the delivery of palliative care]. This will require work by the ministry of health and by the Swaziland medical and dental council.

Most of the Swaziland population lives in dispersed "homesteads" in rural areas, [making] home visits very time consuming. Lack of good discharge planning for terminally ill patients [also] hinders delivery of good palliative care throughout the community.

The network of community clinics run by the ministry of health was [identified as] an untapped resource [for the delivery of palliative care]. The SHAH redefined itself as resource center providing training and education as well as quality palliative care. We developed a palliative care course for community nurses, and guidelines for courses for rural health motivators and SHAH volunteers. Months later, I am pleased to learn that there are now [regular] classes for training [nurses]."

Full Report

The Role of the Swaziland Hospice at Home in the Delivery 
of Palliative Care in the Kingdom of Swaziland:Part I

Dr. Yoram Singer (Israel) & Mr. Sibusiso Dlamini, Bsc (Hons) in Palliative Care (Swaziland)

INTRODUCTION

The Swaziland Hospice At Home (SHAH) was set up in 1990 as it became obvious that patients with cancer, HIV/AIDS could not be given any form of curative treatment with the resources available. It is the only Swaziland organization which provides palliative care. The existing medical system was devoid of palliative care information and its possibilities.

SHAH will celebrate its tenth anniversary in June 2000. It is an appropriate time to review its services and plan for improved standards of future care.

This report reviews Swaziland Hospice At Home's services since its inception. Critical analyses and evaluation of past and present services and/or activities are made. Services reviewed are referral and admission, discharge, and the mode of palliative care service delivery. An admission and discharge policy is advised and utilization of the Primary Health Care (PHC) strategy is recommended as vital to ensure accessibility of palliative care services to all terminally ill patients.

MISSION STATEMENT

Swaziland Hospice At Home is a charity organization that provides and ensures that every resident of Swaziland with a terminal illness has the right to a peaceful, symptom free death: irrespective of where he/she lives, the age, gender, nationality, religion, ability to pay, or cause of illness.

This should be done by improving the health status of persons suffering from terminal illnesses and their families throughout the Kingdom of Swaziland. Since most people would prefer, if possible, to be and to die at home, professional home-based care should be provided for patients suffering from terminal illnesses. A part of this involves the provision of training and support for the families of these terminally ill persons.

SWAZILAND'S HEALTH SYSTEM

The government of Swaziland, through the Ministry of Health and Social Welfare (MOHSW) adopted the Primary Health Care (PHC) strategy in 1983. Before the adoption of the PHC strategy, the health system was more focused on curative measures and was hospital based (Yoder 1989, Sukati 1997). The services were also based in the urban areas, although about 85% of the population of the Swazis was living in the rural areas (Sukati 1997). Thus, the majority of the people could not access the health system. It was therefore crucial to adopt a system which would provide preventive, curative and rehabilitative services to the entire population. A system of primary health care clinics was set up in an attempt to increase accessibility of quality health care to the large rural population. This was in line with the WHO's definition of primary health care (PHC): "An essential health care system based on practical, scientifically sound and socially acceptable methods and technology made universally accessible to individuals and families in the community through their full participation and at a cost that the community and country can afford to maintain at every stage of their development in the spirit of self-reliance and self-determination" (WHO 1988).

MOHSW aimed to decentralize its health services by focusing on accessibility, acceptability and affordability of health services. The health system is presently decentralized in all four Swaziland regions. Though difficulties still exist, it is worth noting that remarkable successes were achieved through the adoption of PHC strategy. Health services rely almost entirely on nursing personnel and there is a dire need of well-trained doctors to work in these rural clinics.

PALLIATIVE CARE IN SWAZILAND

Initially SHAH cared for terminally ill cancer patients exclusively. The policy was reviewed in 1994 and presently SHAH is caring forall terminally ill patients, regardless of the disease. The Salvation Army is another organization which provides palliative care only to AIDS patients. SHAH and the Salvation Army provide home-based care. The HOPE HOUSE, still under construction, will provide an inpatient unit for terminally ill patients. Presently the hospital setting does not provide any palliative care services. Most terminally ill patients are referred to SHAH, the only organization presently providing palliative care to all terminally ill patients in the country. It is therefore necessary for SHAH to further develop is services in order to provide quality care to all patients in need of palliative care.

 

PRESENT SERVICES OFFERED BY THE SHAH

Methods of referral and admission:

Patients can be referred to SHAH by any health care professional, anywhere in the country. However, many patients and their families refer themselves either by phoning SHAH, by sending a relative or friend, or asking an existing patient being cared for during a home visit, to tell the nurse that there is another person who needs assistance. No formal referral letter or form is required. Only an accurate name and address is necessary. Even at this preliminary stage, every effort is made to get an accurate diagnosis, ensuring that the patient does indeed have a terminal condition. When a referral notice is received, the appropriate nurse schedules an assessment at the patient's home. During this initial visit, the nurse determines if the patient will benefit from SHAH services. The assessment includes whether the patient is actually suffering from a terminal condition.

Services offered by SHAH

Swaziland is divided into four regions, each region is served by one nurse from SHAH. The nurse makes home visits to referred patients from his/her own region. The nurse determines the frequency of home visits. This depends on time available and the patient's condition. It is impossible to schedule more than 4-5 home visits a day because of distances and poor road conditions. The home visit is used to: follow up on the patients condition, to change and modify treatment plans according to the patient's condition, to give psychological and spiritual counseling to the patient and to the caring family, to teach and support good patient care. Often, appropriate medications are dispensed at this time.

Continuing Medical Education and Staff Support

One morning a week is dedicated to staff meetings. This includes time for discussion of ongoing administrative issues and problems. However most of the morning is spent reviewing treatment of more problematic patients and presentation of the successful cases management. This peer review is an excellent teaching strategy. It offers opportunity for staff support as well as discussion of emotional hardships staff experience while caring for the terminally ill. Occasionally, different staff members are sent abroad to palliative care congresses and workshops. These professional experiences increase the educational base and foster support for the hospice from overseas sources.

Liaison with Volunteers

Volunteers have a vital role in the survival of many hospices. Swaziland Hospice At Home volunteers are called "friends". This is based on the love and friendship between our volunteers and the patients. They develop a friendship relationship with the terminally ill patient, thereby committing their time, money, and energy to help improve the quality of life of terminally ill Swaziland patients. Two groups are presently active: the Mhlambanyatsi Friends and the United Kingdom based group of friends (FOSH). These friends have not only donated thousands of Emalangeni to the hospice, but have also spent and donated their time and energy in visiting our patients and helping the organization's development.

Problems and Shortcomings

Although there are no official numbers, it is estimated that only a small percentage of terminally ill patients actually are referred to SHAH. One major reason may be that health care professionals are unaware of SHAH's existence. Many professionals who do know of the existence of SHAH do not understand the scope of available services, and do not realize the potential support and professional advice SHAH offers to patients and their families at home.

There is a lack of effective on-going professional communication between SHAH and various community health facilities. Patients discharged from hospital are sent home without planning. There is no communication between the hospital and SHAH. When the nurse makes a home visit, the only way to know of hospital treatment is by hearing reports from patient and/or the family. There is very little communication and input between SHAH nurses and the medical staff in regional health centers and the rural clinic staff.

Primary health care nurses working in the rural clinics lack knowledge in palliative care issues and methods of symptom control. Thus, when terminally ill patients present to the clinic with symptoms related to their terminal illness, there is a good chance that the clinic nurse will not have the know how or the resources to deal with this rather special situation.

Suggestions for further development

SHAH wishes to be the organization which will ensure the delivery of the best quality palliative care to ALL terminally ill patients in Swaziland. It is believed that SHAH is the organization with the most experience in delivering quality home-based palliative care. It is realized that the available resources are few. It is believed that with proper use, available resources can be used to reach a large proportion of those in need, especially in the rural areas.

Stage 1:

The SHAH education and development department will embark on a large scale educational program to train the various sectors working in the community on how to better deal with the various palliative care issues which they face every day.

NURSES: All clinic nurses, health center nurses, and selected hospital nurses will be invited one afternoon every three months for a three hour workshop on symptom control and other palliative care issues. In each workshop, there will be no more than eight participants. All four regions of Swaziland will be covered simultaneously. Topics to be covered will include:

i) Pain assessment ii) Pain management

iii) Constipation and diarrhea iv) Nausea and vomiting

v) How to give bad news vi) Dyspnea and cough

vii) Anorexia and weakness viii) Skin care and edema

ix) Basic concepts in Pal. Care x) Issues on death and dying

RURAL HEALTH MOTIVATORS (RHM): All RHM's will be invited to attend courses on appropriate palliative care issues. The courses will be held in all four regions of Swaziland simultaneously and will consist of lectures attended by 50 to 70 members.

Topics to be covered will include:

1) Confidentiality and a pledge of confidentiality

2) Some basic concepts in palliative care including defini tions of terminal illness

3) How and which patients to refer to SHAH, and what SHAH offers.

4) Basic principles in taking medications and compliance with recommendations.

5) Basic concepts of caring: prevention of cross infection; listening; social rights.

VOLUNTEERS: All volunteers will be invited to attend meeting and workshops on palliative care issues and in the domains in which they have chosen to volunteer. General topics that will be discussed will universally include the basic concept of palliative care and the importance of confidentiality.

Stage 2:

The SHAH will gradually take on the role of coordinating palliative care among the various health providers in the country, i.e. between the hospital, the regional health centers and the rural clinics using the RHM's as a valuable resource. Volunteers will be designated roles where appropriate and available. It is hoped that designated palliative care trained hospital nurses will play an important role in the discharge planning of terminally ill patients to the community, reporting and appropriately referring the terminally ill patients to the regional SHAH nurse. Regional SHAH nurses will visit the regional hospitals, regional health centers and rural clinics on a regular basis, offering support and relevant advice to the health personnel on palliative issues. They will provide follow up information about the patients in their care. Patients who cannot be managed at home and who require hospitalization will continue to be followed by the SHAH nurse with the aim of ensuring a speedy discharge whenever possible.

Conclusion

The SHAH hopes within the next year to develop into the leading organization in Swaziland, providing the highest standard of palliative care to the country's terminally ill. It will develop from acting solely as health care providers to offer out reach programs to teach palliative care and to coordinate palliative care among the various existing health care agencies. An educational and development unit has been established at SHAH. Curricula and teaching programs have already been developed. The SHAH nurses have been trained in teaching techniques. Finally, the unit is in the process of developing appropriate quality assurance and audit tools.

Swaziland Hospice at Home. Weekly Reports of Fellow : Part II

Dr. Yoram Singer, Director of the Home Palliative Care Service and Lecturer at Ben Gurion University Faculty of Health Sciences, Beer Sheva, Israel

Week One:

During the first week of my trip to Swaziland, I spent time learning how the health system in general works, and how the care of the terminally ill is incorporated into the system. I met key people such as the director general of the ministry of health and the director of the national medical and dental council. I spent two days doing home visits with two of the four nurses of the Swaziland Hospice At Home (SHAH). I also visited two government hospitals. We then outlined a plan of action. Together we established some future goals for the SHAH. Here are several important observations and thoughts which resulted from the planning process.

1 ) There are no physicians in the kingdom of Swaziland who have had any formal education in any sort of palliative care issues. There are virtually no doctors who are currently aware, interested or willing to work in palliative care.

2 ) The Swaziland Hospice at Home consists of a small group of extremely dedicated, extremely motivated and very professional nurses who deliver palliative care of a very high standard, especially considering the limited resources.

3 ) Most of Swaziland is rural, with population dispersed in small "homesteads" throughout the country. There are a few small towns and no villages. The roads between the various homesteads are un-tarred and in some cases do not reach all the way to the homesteads. Thus, the home visits are very time consuming.

4 ) Some of the patients followed by the SHAH are not yet home bound or bed ridden, but are not well enough to travel to the offices of SHAH.

5 ) There is a network of community clinics run by the ministry of health which are staffed by nurses and nurse aides. This resource could be used to improve the quality of palliative care delivered to the patients.

6 ) There is very little awareness and attention given to palliative care within government regional hospitals. There is inadequate discharge planning for terminally ill patients which hinders the delivery of good palliative care in the community. It contributes to recurrent hospitalization and over-crowding within the hospitals. The fact is that most terminally ill patients would like to remain and to die at home.

7 ) The SHAH now sees its role as not only an organization that delivers palliative care in Swaziland, but also as a resource center and a coordination center for the delivery and the center for quality assurance for the delivery of palliative care in Swaziland. Mr. Sibusiso Dalmini has recently returned from a three year course in palliative care nursing in Great Britain, and has received a local mandate to set up the education and resource unit at the SHAH.

These observations led to the preparation of the manuscript "The role of the SHAH in the delivery of palliative care in the Kingdom of Swaziland." See above.

Week 2:

The second week was spent entirely at the SHAH offices in an extended workshop for the staff of the SHAH. The first three days were spent reviewing the various aspects of symptom control including pain control, the management of nausea, vomiting, constipation, diarrhea; the conservative management of malignant bowel obstruction, dyspnoea, asthenia, pruritus, anxiety, depression, terminal restlessness. I also presented a workshop on giving bad news, truth telling and other ethical issues. The second half of the week I offered a curriculum development workshop. Staff learned methods of curriculum development and methods of course preparation. We developed a course in palliative care for community nurses and learned how to prepare lectures and workshops. We also set guidelines for the preparation of a course for rural health motivators. Other guidelines were prepared for a course for the SHAH volunteers. There was obviously not enough time to develop all needed courses and to prepare all of the necessary lectures, but now that SHAH staff have the tools. I hope the process will continue.

Week 3:

During the third week, I spent two days doing home visits with the remaining two nurses with whom I had not traveled during the first week. The rest of the time was spent beginning to implement the first week's planning. We held a series of meetings with nurses in some of the hospitals, clinics and health centers in the community. During these meetings, we discussed and offered the services of the SHAH as a resource center. In general, it appeared that the ideas were very well received. There was a general eagerness to participate in palliative care courses and to assume the responsibilities of delivering palliative care. There was a feeling that a nurse should be designated as the coordinator of in-hospital delivery of palliative care and this nurse would be responsible for discharge planning and communication with the community clinic and the SHAH. We also spent some time beginning a manuscript of basic guidelines for management of the terminally ill patient, good symptom control and the delivery of palliative care. We compiled a list of essential drugs needed for the delivery of good palliative care. This list included the prices of every drug requested.

I believe the trip was extremely worthwhile. The hospitality was outstanding. More important than that, however, was the willingness of the SHAH staff to learn and to work hard in order to move community palliative care forward. I believe and sincerely hope that I established a process which will now move forward under its own momentum. I am eager to continue close contacts with SHAH to help in any way that I can to further the process and ideas initiated during my stay.

There is one area which I did not approach this time, that is of educating, motivating, and establishing the role of Swaziland doctors in the delivery of palliative care. Much more preparatory work must be done by the ministry of health and by the Swaziland medical and dental council. I discussed this with the directors of the ministry of health and of the Swaziland medical and dental council. I am willing to explore the topic with them in the future.

Submitted by: Dr. Yoram Singer