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Hospice and Palliative Care in AfricaA Review of Developments and Challenges$

Michael Wright and David Clark

Print publication date: 2006

Print ISBN-13: 9780199206803

Published to Oxford Scholarship Online: November 2011

DOI: 10.1093/acprof:oso/9780199206803.001.0001

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Uganda

Uganda

Chapter:
(p.201) Chapter 8 Uganda
Source:
Hospice and Palliative Care in Africa
Author(s):

Michael Wright (Contributor Webpage)

David Clark

Jennifer Hunt

Publisher:
Oxford University Press
DOI:10.1093/acprof:oso/9780199206803.003.0008

Abstract and Keywords

Uganda (population 25 million) is a landlocked country in Eastern Africa that covers an area of 236, 040 km2. There are eight palliative care organizations that deliver some 155 services. These include Hospice Africa Uganda (HAU), Kitovu Mobile Home Care, The Mildmay Centre, Joy Hospice, The Palliative Care Unit; Lira Regional Referral Hospital, and Association François-Xavier Bagnoud (AFXB). The reimbursement and funding for services are shown. The chapter also addresses opioid availability and consumption. The Palliative Care Association of Uganda (PCAU) is a national association that aims to introduce and maintain standards, bring together key players and stake-holders, establish a journal, quarterly continuing medical education (CME) update, publications, advocacy, and co-ordination of education and CME throughout the fifty-six districts of Uganda. Education and training of health professionals and non-health professionals is discussed. Furthermore, the history and development of hospice-palliative care in Uganda is reported. The principles of health care ethics include beneficence, non-maleficence, respect for autonomy, and justice.

Keywords:   Uganda, Hospice Africa Uganda, Kitovu Mobile Home Care, Mildmay Centre, Joy Hospice, Palliative Care Unit, ethics

                      UgandaUganda (population 25 million) is a landlocked country in Eastern Africa that covers an area of 236 040 km2. Its boundaries border Democratic Republic of the Congo, Kenya, Rwanda, Sudan and Tanzania. The capital Kampala (population 1.28 million) is situated near Lake Victoria.

The country became independent of Britain in 1962 and has been governed by President Yoweri Museveni since 1986.Conflicts over the past 15 years have disrupted the lives of many Ugandans, particularly in the north.

According to the United Nations human development index (HDI),1 Uganda is ranked 146th out of 177 countries worldwide (value 0.493) and 18th out of 45 African countries for which a value is available. This places Uganda in the low human development group.

Palliative care service provision

Current services

In Uganda, eight palliative care organizations deliver some 155 services (Table 8.1).

Hospice Africa Uganda (HAU)

HAU was founded in 1993 to care for cancer and HIV/AIDS patients and give support to family members.2 In the past, most referrals came from hospitals; now, an increasing number originate from community vigilantes (trained carers who identify patients in the community in need of the hospice's services). Hospice Africa Uganda also incorporates Mobile Hospice Mbarara and Little Hospice Hoima, both established in 19983 (Table 8.2).

Kitovu Mobile Home Care

This NGO was founded by the Medical Missionaries of Mary in 1987 as a response to the AIDS pandemic. Patients frequently self-refer by presenting themselves at one of the (p.202)

Table 8.1 Palliative care provision in Uganda, 2004

Inpatient unit

Paediatric inpatient unit

Hospital unit

Hospital support service

Home care

Day care

Paediatric day care

Paediatric day care

clinic/drop-in center

Mobile clinic

Total

Association François-Xavier Bagnoud

1

1

Hospice Africa Uganda

2

1

1

1

5

Mobile Hospice Mbarara

2

1

1

2

6

Little Hospice Hoima

2

1

1

2

6

Mildmay International

1

1

1

1

1

5

Joy Hospice, Mbale

1

1

1

1

4

Kitovu Mobile Home Care

1

124

125

PC Unit: Lira Regional Referral Hospital

1

1

1

3

Total

1

1

1

9

7

3

1

1

3

128

155

1

1

Hospice Africa Uganda

2

1

1

1

5

Mobile Hospice Mbarara

2

1

1

2

6

Little Hospice Hoima

2

1

1

2

6

Mildmay International

1

1

1

1

1

5

Joy Hospice, Mbale

1

1

1

1

4

Kitovu Mobile Home Care

1

124

125

PC Unit: Lira Regional Referral Hospital

1

1

1

3

Total

1

1

1

9

7

3

1

1

3

128

155

(p.203)

Table 8.2 Patients cared for by Hospice Africa Uganda 1993–2004

Date of inception

Total patients since inception

Patients in programme March 2004

Hospice Africa Uganda

September 1993

4218

285

Mobile Hospice Mbarara

January 1998

1176

179

Little Hospice Hoima

June 1998

450

151

Grand total

5484

615

Table 8.3 Activity report: Kitovu Home Care and Mildmay International (Uganda)

Date of inception

Total patients registered

Total active patients

Kitovu Home Care*

August 1987

12 000

3600

Mildmay International;

September 1998

7545

5000

(*) Figures published September 2003.

() Figures at March 20045.

centres. Other referrals come from family members, parish priests, community volunteers, local hospitals, TASO (in Masaka) or Hospice Africa Uganda after patients return home (Table 8.3). Palliative care has been grafted onto their support service since 2000.

The Mildmay Centre

The centre opened in Kampala in September 1998, having previously received an invitation from the Uganda AIDS Commission to establish an AIDS care and training centre on land donated by the government (Table 8.3).4

Joy Hospice

Joy Hospice opened in Mbale in 2001 to care for AIDS and cancer patients; provision includes a five-bed inpatient unit, home care service and clinic.6

The Palliative Care Unit; Lira Regional Referral Hospital

This service consists of a one-bed facility supplemented by a hospital support service and home care service.7

Association François-xavier Bagnoud (Afxb)8

AFXB began a home care service in Luwero in January 2003.9

The palliative care gains made in Uganda have been recognized by WHO:

In the last ten years, thanks to NGO initiatives, progressive government involvement and the support of the WHO country office, Uganda has been able to include palliative care in the government health agenda which has resulted in the allocation of resources, improved morphine availability, and the provision of training at all levels of care and to undergraduate and post graduate health professionals. It has integrated palliative care into the existing health system at a district level and is planning to extend the programme to other districts and eventually to the rest of the country.10

(p.204) WHO also recognized the valuable contribution of research undertaken in Uganda by Ekiria Kikule:

A needs assessment study recently undertaken in Uganda (Kikule, 2000), showed that the distribution of terminally ill patients was 73% HIV/AIDS, 22% cancer, 3% both and 2% other diseases. The majority of patients preferred to be cared for at home and, in fact, 87% of the caregivers were family members who were very supportive. Among the various needs shared by patients and their caregivers, the major ones were food and welfare. Poverty and sickness combined to put families in a critical situation. Patients experienced pain and other symptoms quite often and 65% declared them a problem. The main fears expressed by the patients were fear of death and abandonment. The study concluded that the home is the best place to care for the terminally ill.11

Reimbursement and funding for services

Hospice Africa Uganda received a pledge of 50 million shillings from the Ministry of Health for the financial year (FY) 2003–2004;12 this was supplemented by income raised from donors and fundraising activities such as sponsored walks, luncheons and a flea market. Donors have included: Hospice Africa (UK), the British High Commission, the Government of Ireland, the States of Jersey, Singapore and Canada, CORDAID (The Netherlands), CAFOD (England), SCIAF (Scotland) and the Nuffield Foundation, the Diana Princess of Wales Memorial Fund (Diana Fund) and the RAF (UK). Rotarians worldwide have contributed; DANIDA and USAID are committed during 2004. APSO, VMM (Ireland) and VSO have supported expert volunteers, and the diploma course was supported by the UK Forum for Hospice and Palliative Care Worldwide. In the UK, funds are raised from two charity shops and private individual donors. In future, the hospice aims to raise 10 per cent of its running costs in Uganda.13

Mobile Hospice Mbarara14 has been supported by CAFOD, the 3H International Rotary Grant from the USA (with assistance from Hospice Africa, Rotary Clubs of Coventry and Manchester) the Andrew Mitchell Christian Charitable Trust and the Diana, Princess of Wales Memorial Fund. Little Hospice Hoima has received support from GOAL, Ireland and friends, Elizabeth Taylor Foundation (USA), Global Cancer Concern (UK) and the Andrew Mitchell Christian Charitable Trust (UK). The Rotary Club of Hamilton, Victoria (Australia) has provided a car for home care.

Patients are asked to pay 5000 Ugandan shillings per week (towards the total weekly cost of 25 000/) for care. Sixty per cent of patients have this contribution waived because of their poverty.

President's Emergency Plan for Aids Relief (PEPFAR)

During the 2004 FY, funding of around US$80.58 million was enacted for country-managed programmes in Uganda and US$10.18 million for central programmes. During FY2005, it is anticipated that a total of US$124.34 million will be enacted: US$112.82 million for country-managed programmes and US$11.52 million for central programmes.15

(p.205) The Diana, Princess of Wales Memorial Fund

The Diana Fund has both supported in-country developments and, at the same time, commissioned Hospice Africa Uganda to advocate for palliative care in Central and East Africa.

In Uganda, grants have been awarded:

  • To continue the work of Mbarara Mobile Hospice: salaries, vehicle running costs, office overheads and evaluation: 2-year grant, £60 000 (Hospice Africa Mbarara)

  • To consolidate the HBC programme in three districts: staff salaries, transport costs, drugs and training: 3-year grant, £81 995 (Medical Missionaries of Mary, CAFOD16)

  • For capacity building in end-of-life/palliative care for the HBC programme in Kampala; training, welfare fund, transport, drugs: 3-year grant, £14 200 [Nsambya Home Care Services (St Francis)]

  • For palliative care nurse specialist training: £14 168 (Hospice Uganda).

In Central and East Africa, Hospice Africa Uganda became the Diana Fund's partner agency in a 3-year project which attracted funding of £300 000. During this period, Hospice Africa Uganda would:

  • Provide technical support and advice on the identification of countries with the capacity and political will to initiate palliative care services

  • Provide guidance and training to such countries

  • Set up and run a distance learning Diploma in Palliative Care for African countries

  • Set up a resource centre of palliative care materials for Africa, at Makindye, Kampala

  • Improve services within Uganda so that a model can be developed that works for the poorest and that can be duplicated in other African countries.

    Anne Merriman comments:

    In 2001, the Diana, Princess of Wales, Memorial Fund in London, invited Hospice Africa Uganda to be their technical experts in assisting other African countries to start or strengthen palliative care services using the public health approach and integrating with existing health systems. Working with World Health Organisation, this initiative has brought the Hospice training programmes to several other African countries.17

Opioid availability and consumption

Data from the International Narcotics Control Board18 show the following figures for narcotic consumption in Uganda, 2002: codeine 27 kg (down from 83 kg, 1998); morphine 9 kg (up from 2 kg, 1993); pethidine 8 kg (as in 1998, but down from 22 kg in 2001).

For the years 2000–2002, the average defined daily dose consumption of morphine for statistical purposes (S-DDD)19 in Uganda was 4. This compares with other African countries as follows: Swaziland 1; Egypt 2; Zimbabwe 13; Botswana 53; Namibia 73; and (p.206) South Africa 103. Twenty-nine countries reported no morphine consumption during 2000–2002 (Appendix 1).

Morphine for cancer and HIV/AIDS patients is provided free of charge by the government. In March 2004, a Statutory Instrument20 was signed by the Minister of Health authorizing palliative care nurses and clinical officers to prescribe morphine as part of their clinical practice: a ground-breaking innovation.

Morphine is supplied by HAU in tablet and liquid forms. The slow-release morphine tablets (MST)—donated by NAPP (UK)—are in 10 and 30 mg strengths. Liquid (oral) morphine is the most frequent form of pain control and is prepared in 1, 10 and 20 mg/ml strengths. Pharmacist Peter Mikajjo comments:

We prepare [liquid morphine] in a very simple way whereby it cannot take a lot of time and cannot be costly. Morphine is prepared out of morphine powder: there are actually two types—either morphine sulphate or morphine hydrochloride—but basically we are using morphine sulphate and we prepare enough that can be used in a week.21

HAU founder Anne Merriman is clear about the role played by morphine in palliative care:

I think support care can be put in if you don't have morphine but I don't think palliative care is there … When I met Dame Cicely a few years back, I said to her ‘You know something: there was support care in Uganda before I went, and there were really caring people doing it’. And she said ‘that's why I started the modern hospice movement. The support care was there—people were dying with people caring for them—but they weren't controlling pain; that's why I started it, and that's the difference I made’. So my definition now is: support care without pain control is support care; pain control without support care is anaesthesiology … to have palliative care you have to have pain control plus support care.22

A key contributor to the debate surrounding morphine has been Jack Jagwe, who describes his role as follows:

My role in Hospice Africa Uganda is that of the senior advisor on policy, drugs and advocacy. Policy concerns how palliative care relates to Government health policies so that we don't have any conflict. The second one is about drugs, how to access palliative care drugs and most specifically the availability of morphine to patients in palliative care. And the third one is advocacy—to try and convince Government and top health policy makers about the value of having palliative care for so many patients in our country who are dying from HIV/AIDS and cancer.

First of all: I'm a physician by training, and I've been in the Government services for 30 years ‘til my retirement—and I got interested when Dr Anne Merriman came to Uganda in 1993. By then I was the Deputy Director of Medical Services in charge of clinical services and also in charge of essential grants in the country. That's when she came and mentioned that we should have drugs like morphine available for these people. And after that, when I retired officially from the Government, I became Chairman of the National Drug Regulatory Body in Uganda. Since then I've been interested in palliative care and in 1998 when she organized a national workshop I was appointed Chairman of a task force which worked out a national policy on palliative care. That draft was thoroughly discussed and eventually submitted to the Ministry of Health, and it was incorporated into the Health Strategic Plan of 2001–2005.23

(p.207) If morphine is required by patients in the Kitovu Mobile Home Care programme, a referral is made to the programme doctor. Once the doctor prescribes the morphine, the patient or a family member can collect the medicine from nurses at a nearby centre.

National and professional organizations

Palliative Care Association of Uganda (PCAU)

This national association was founded in 1998. It is chaired by Dr Lydia Mpanga; Julia Downing is co-editor of the PCAU journal with Anne Merriman, and the organization has 〉 180 members. Aims include:

  • Introducing and maintaining standards

  • Bringing together key players and stakeholders

  • Establishing a journal

  • Quarterly CME update

  • Publications

  • Advocacy

  • Coordination of education and CME throughout the 56 districts of Uganda.

Palliative care coverage

Hospice Africa Uganda provides a palliative care service to patients and their families within a 20 km radius of the hospice, and promotes this care throughout Uganda and in other African countries.

Mbarara Mobile Hospice covers a radius of 20 km encompassing the area of Mbarara and beyond. It also has outreach services and roadside clinics.

Joy Hospice provides a travel-to service that covers 15 districts of Uganda (population 100 000).

Mildmay is an internationally recognized referral centre that has accepted patients countrywide from Uganda and also from Kenya, Rwanda, Democratic Republic of Congo and Eritrea.

The Palliative Care Unit; Lira Regional Referral Hospital provides a hospital referral service; a home care service operates within a bicycle ride of the hospital.

Kitovu Mobile Home Care covers the 26 subcounties of Masaka, Rakai and Ssembabule districts.

Association François-Xavier Bagnoud covers three subcounties of Luweero: Semuto, Makulubita and Kasangombe.

Education and training

Hospice Africa Uganda

A total of 1121 health professionals and 553 non-health professionals have attended HAU palliative care courses since 1994 (Table 8.4). (p.208)

Table 8.4 Training courses: Hospice Africa Uganda, Mbara, Hoima 1994–2004

Venue

Organization

Target group

Courses (n)

Hours per course (n)

Participants (n)

Kampala

HAU

Health professionals

22

45–56

672

Kampala

HAU

Volunteers

12

24–40

311

Kampala

HAU

Professionals: non-health

1

42

Kampala

HAU

Health professionals: train the trainers

8

97

Districts

HAU

Health professionals

42

519

Districts

HAU

Professionals: non-health

203

Districts

Mbara

Health professionals

12

48

344

Districts

Mbara

Professionals: non-health

5

24

122

Districts

Mbara

Volunteers

1

24

16

Districts

Hoima

Health professionals

3

88

Districts

Hoima

Professionals: non-health

11*

294

(*) Of the 11 courses organized by Little Hospice Hoima, five were for district community volunteers, one for Hospice community volunteers and five for different NGOs in Hoima district.

Sources: Hospice Africa Uganda, and Clare Fitzgibbon (for Mbara and Hoima).

In addition, in-service training is given to the HAU team and to health professionals who support the work of the hospice. Certificates of Practice are given to clinicians who follow up the courses, present case studies and pass an oral examination.

Hospice Africa Uganda provides teaching sessions for undergraduate and post-graduate doctors at Makerere University (from 1993) and Mbarara University of Science and Technology (MUST) Medical School (since 1998)—along with courses for pharmacy and nursing students.

The hospice has also been sharing expertise with HIV/AIDS organizations to ensure that palliative care is grafted onto community-based home care services.24 , 25 Anne Merriman:

Every village and every family in Uganda has experienced the death of a loved one from AIDS. Many of these patients have died at home. Many have also had cancer. The AIDS home care teams are under a lot of strain trying to spread themselves to cater for the increase in those dying at home. These teams are excellent at counselling and basic medications; however, for those patients with extreme pain and symptoms, the lack of knowledge of the methods of control, and the use of medications, have prevented pain and symptom control. Hospice has introduced palliative care and the modern methods of pain and symptom control which are working in the home. The training of personnel in this specialty is a major part of the work of Hospice Uganda.26

All three hospice organizations are working with the Ministry of Health to provide training programmes for 56 districts about to receive oral morphine through an initiative that has already introduced oral morphine to 15 districts during the first phase.

In 2002, HAU established a distance learning Diploma in Palliative Care in conjunction with Makerere University. Twenty participants enrolled on the first course (including (p.209)

Table 8.5 Students enrolled on the distance learning Diploma course from outside Uganda, 2002–2003

Country

Doctors (n)

Nurses (n)

Clinical officers (n)

Total

Cameroon

1

1

Malawi

1

1

Tanzania

1

1

2

4

Zambia

1

1

Zimbabwe

2

2

Total

2

4

3

9

nine from outside of Uganda, Table 8.5). Facilities include the resource centre and 14-room residential centre (Kateregga House) at Makindye. A second course with 18 participants began in 2003.

Course director Michelle McGannon comments:

The diploma is training people to provide holistic care within the palliative care setting, and it's so important to look at all the elements that are involved in that. Also, it's an African diploma for an African audience; I think that's the most important thing that I could say about it—it's trying to give people, not just the clinical skills, but the skills to be able to pass on that knowledge. We have modules on management, organization and palliative care, so they can have information on what is most appropriate for their particular setting or country; and management styles—to give all-round tuition and help them to develop a service.27

A course participant, Ndikintum George Mbeng (from Cameroon) comments:

The distance learning course is a very good way of teaching palliative care to health professionals in Africa, and it equips the students with the knowledge to train other health professionals. The compulsory residential weeks are very helpful because you have to come on site, see the practices and whatever.28

Training courses have also been delivered by HAU in other African countries, including: Ethiopia, Tanzania, Malawi, Nigeria, Kenya and Zambia.

To support the development of education and training, a resource centre has been established with support from the Diana Fund. Centre manager Ronnah Abinaitwe spent a month at St Christopher's Hospice, London, in preparation for her innovative role;29 she here describes the library resources:

We have many books on pain and symptom control; I've classified them separately according to the different subjects. We have a few publications from the Ministry of Health, Uganda, because some of them apply to us; some publications from the WHO; and other publications from the UNDP—this will help especially the researchers to know what they want. Then I have shut cupboards with journals. Most of the journals are palliative care journals—only some of them don't come very regularly because we don't always have the money to subscribe to them; but then we have the British Medical Journal and the Lancet, which come free for us. So we always get at least a copy every week of the two journals; we have quite a collection. Near the main entrance we have the information material that hospice publishes. We have the famous blue book by Dr Merriman (p.210) and we have a few other manuals—trainers’ manuals that we usually give to the people that come for training.30

Training has recently come into sharper focus as a result of a research project undertaken by Ekiria Kikule which sought to identify the palliative care needs of terminally ill patients in Uganda. Among a sample of 173 participants registered in palliative home care programmes, three needs were identified: the control or relief of pain and other symptoms; counselling; and financial assistance for basic needs such as food, shelter and children's school fees. Significantly, the home was the preferred setting for care, although all participants had access to health care services within 5 km of their homes.31

The Mildmay Centre

The Mildmay International Study Centre (MISC) aims to develop initiatives that will introduce the knowledge and skills needed to provide comprehensive, holistic rehabilitation and palliative care for people living with HIV/AIDS. Training programmes are provided for government bodies, NGOs, faith-based organizations and companies in Uganda and the surrounding region. Programmes include:

  • One-day HIV/AIDS awareness seminars

  • One-and two-week residential courses

  • Modular courses of up to 18 months duration, such as

    • a Diploma in HIV/AIDS Care and Management in association with Manchester University, UK

    • a 1-year course delivered upcountry by two mobile training teams

  • Placement schemes.

Julia Downing (MISC director), speaking in June 2004, comments:

We have had over 3000 people on our short courses over the last three years, from about 45 of the districts in Uganda and from 22 countries—mainly Uganda, but we have regional programmes as well for people from within Africa. And then at our centre in Kampala we have a specialist outpatient referral centre/clinic, and so we have clinical placements as well, and we have people from all over coming on the clinical placements and the training programmes. On the year-long programme in the districts, we've had—and I counted that just a few days ago—about 220 people on that course. And the Diploma courses, obviously the numbers get smaller as the course gets more demanding, but from the Diploma course, we've just graduated 23 people on Friday, and we have a further 24 undertaking it.32

Edith Akankwasa, manager of the innovative mobile training team (MTT) writes:

The aim of the MTTs is to build capacity amongst health workers to deal effectively with the care needs of patients living with HIV and AIDS (PLWHAs) in the rural communities. Each multidisciplinary training team consists of a doctor or clinical officer, a nurse, a counsellor and a driver. The teams take trainees through a year's modular training programme addressing issues such as clinical care, communication skills, teaching skills, Proposal writing and management skills.33

(p.211) Association François-Xavier Bagnoud (AFXB)

AFXB provides training for its staff and in Uganda this has been in association with the Mildmay Centre.34

PROMETRA Uganda

PROMETRA Uganda is an NGO which promotes traditional medicine and the role it plays alongside Western models. President/director Yahaya Hills Sekagya writes:

PROMETRA Uganda initiated a program for training and empowering traditional healers in the care and management of patients with cancer, HIV/AIDS and other diseases using traditional methods. The training covers areas of basic anatomy, herbal identification, preparation, administration, diagnosis, danger signs and referrals. Traditional medicine and healers are an alternative resource in rural and poor communities as they are available, accessible, affordable, and in every village

Traditional healers have actively participated in hospice trainings, willingly share information with each other regarding medicinal plants for opportunistic infections, [and have] developed unique yet appropriate methods of communally looking after the sick. They have committed themselves to working as a team and are a strong resource for local communities.35

Palliative care workforce capacity

Hospice Africa Uganda: the staff list for 2003–2004 details 107 staff. This includes 18 staff in the Mobile Hospice Mbarara team and seven staff at Little Hospice Hoima. In March 2003, 88 of these were permanently employed members of staff.36

Joy Hospice: one medical director; one clerical officer; four enrolled nurses; one trainee nurse.

Palliative Care Unit; Lira Regional Referral Hospital: staffed by two nurses.

The Mildmay Centre: in November 2003, 127 people were employed (123 Ugandans).37

History and development of hospice—palliative care in Uganda

Hospice Uganda

HUA is the model hospice for Hospice Africa—an NGO founded in 1993 to promote hospice developments in the countries of Africa which lack palliative medicine. Objectives are:

  • To provide a palliative care service to patients and families within a 20 km radius of the Makindye premises and to promote this care throughout Uganda

  • To carry out education programmes in palliative medicine to health professionals at undergraduate and post-graduate levels

  • To encourage the initiation/consolidation of palliative care in other African countries by providing a training facility at Hospice Uganda.

HAU opened on 23 September 1993 based in a two-bedroom house loaned by Nsambya Hospital. At this time, funds were only available for the following 3 months, although a 10-year-old Land Rover had been donated by the British High Commission. Hospice (p.212) headquarters subsequently moved to alternative accommodation, donated free of charge by Henry Mary Kateregga, before securing the current premises at Makindye with the help of the organization Ireland AID38 in 1994.

The key person behind HAU was Anne Merriman, a doctor from Liverpool who had previously worked in Singapore and Kenya. She recalls how she came to work in Uganda:

Dame Cicely had written to me [in 1991] and in October she had edited a book; have you ever seen that journal Contact—published by the Christian Council of Churches, Geneva? Well they had a volume dedicated to palliative care and she asked me to write an article about what we were doing in Nairobi, which I did; and it went out free to most of the developing countries, and I started to get letters from different parts of Africa begging me to do what we were doing in Nairobi in their countries, and I realized there was this big need.

So what I wanted to do was to set up a hospice that would be a model from which other countries could say, ‘Look it works in our situation’—because Africans went to Europe, they went to America, and they came back saying, ‘Oh it's not affordable: it's wonderful but we'll never be able to afford that’. So what I wanted to do was set up a model that was affordable and to show them that it could work in the African situation. So I went home and I worked at home for a year. During that time, we approached people about writing a constitution and my friends came together to form the Board of Hospice Africa, and that was registered in August 1993 as a charity. Meanwhile, in January ‘93, we started doing a feasibility study. We visited Zimbabwe then we went to Nigeria and we did Uganda; and we really felt Uganda was the best place. And the reason was: one, that the Government was trusted and we would be able to get funding from outside. Secondly, they had a huge AIDS epidemic. You could see the people suffering even driving along the road, it was so big at that stage; it's gone right down now but it was very big then. And also the Ministry of Health were fully behind us and promised to get in the morphine: I said I wouldn't come in without morphine and they promised to get it in, and they did. It was a big struggle, but we got it.

I made a lot of enemies trying to get morphine in because, although the Minister was behind me, people like the pharmacists were very against what I was doing. Also, we had a lot of trouble getting the Ministry of Health on board. In fact we didn't get it on board ‘til five years later, in ’98, when we held the big conference for the stakeholders in palliative care and we got the finance from SCIAF—the Scottish Catholic International Aid Fund.

I think we had two days discussing things and Jan Stjernswärd came as the motivator. We ended up employing Dr Jagwe as an advocate: he's five sessions a week. And the people from the Ministry formed a group that would look at the needs of palliative care and see what they were going to do. As a result, palliative medicine was put into the five-year strategic plan in the year 2000. We were the first country in Africa to do that—and it wasn't only written into it, it's been taken up seriously and they have moved forward on it. So the five years since ‘98 has been much better working with the Ministry of Health.39

In January 1998, the service was extended with the founding of Mobile Hospice Mbarara. An outreach clinic was established and supplemented by the inception of roadside clinics for those outside of the 20 km catchment area.

Clare Fitzgibbon, a Macmillan nurse consultant, was heavily involved in the establishment of Mobile Hospice Mbarara. Having taken early retirement, VSO placed her in Mbarara (together with her husband) where she had previously worked in a country hospital during the 1970s.

We went out in October 98. Locked up our house, left our keys with the neighbour, squared it with our three children, and went out to Mbarara.

(p.213) I made it very clear that I wouldn't lead; it was important that Ugandans led. So I'd work along side them as a nurse consultant, working with the clinical team (which was then two nurses) charged with establishing palliative care in the curriculum at Mbarara University of Science and Technology.

Within the first three months we'd prioritized that we needed a doctor and we needed another nurse before we could possibly extend beyond Mbarara. We sat down together and prioritized what we could do with what we had and what we might plan to do. Bereavement training: although there was a huge awareness, one of the problems in even doing a primary visit was, where have the people gone? Out into the distant villages—back home. So that in itself was a difficulty. But we agreed to set at least one visit as a standard.

One of my roles was to assess the need in the district. By looking at referrals and new patients that weren't able to return, we realized it was because of the distance and lack of money; and we know what a difference one has made, being able to establish those mobile clinics back in 1999.

In June 1998, a third service was founded—Little Hospice Hoima—to demonstrate how a simple service could be introduced using existing health facilities and personnel. As a result, an affordable service reached out to the villages, supported by community volunteers who helped to identify those in need.40

The Mildmay Centre

Mildmay International is a UK-based Christian organization which was established during the nineteenth century for the relief of suffering. In 1988, Mildmay opened the first palliative care service in Europe for people living with HIV/AIDS at the Mildmay Mission Hospital, London. After a study tour to Africa in 1991, Mildmay developed training programmes in East Africa, funded by the British Council. This in turn led to an invitation from the Uganda AIDS Commission to set up a care and training programme in Uganda. The Centre opened in 1998 and Mildmay has an agreement with the Ministry of Health to manage the Centre and its activities until 2008. Julia Downing:

The Mildmay Centre was developed in order to provide and demonstrate good-quality holistic, comprehensive, outpatient care for patients with HIV/AIDS-related health problems, and to teach and train health workers throughout Uganda and the region in such care.41

Joy Hospice

Following work as a GP in Oxfordshire, Janet White arrived in Uganda in 1988 in response to what she considered to be a call from God. She worked in Kenya between 1994 and 1998, whereupon she was invited by the Deliverance Church to return to Uganda and establish a medical service in Mbale. The following year, a second clinic was established in Buwasunguyi. By this time, the majority of patients were presenting with advanced cancers and end-stage AIDS. As a result, Janet White began to nurse patients in her home in Mbale. Recognizing the gap in provision, she subsequently obtained and renovated a house to create a 5-bed inpatient unit and home care service that opened on 31 August 2001. Janet White:

Patients are mainly seen as outpatients, sometimes with a brief admission for symptom control. Occasionally, a patient and family choose to remain at hospice until death occurs. As the service (p.214) expands, more home visits will take place. Two factors have delayed the home visiting programme: patients are scattered over seven districts and many live over 50 km from hospice, and the hospice vehicle was involved in an accident in November 2002 and has been written off.42

Kitovu Mobile Home Care

Sister Ursula of the Medical Missionaries of Mary founded Kitovu Mobile Home Care in response to a growing awareness of the AIDS epidemic. As the disease became increasingly apparent, myths and fears developed around the infection. Many of those initially affected were considered to be suffering punishments for past thefts, and suffered stigmatization and marginalization. Some sold their homes and possessions to make restitution, falling into extreme poverty, children dropped out of school, and patients were abandoned at the hospital doors. Nurse Rose Nabatanzi comments:

The patients realized there was a need for them to be cared for and they created centres where they could come together and wait for the nurses to come.43

In this scenario, Sr Ursula initially cared for infected people with a small team of nurses, gradually increasing the provision to include community volunteers, local co-ordinators and psychosocial support. Food, soap and sugar were provided alongside medicines and, with the introduction of morphine in 2000, the home care developed into a palliative care service. Today, each centre is visited every 2 weeks. Each team carries a supply of medicines and patients are treated for diseases such as malaria and opportunistic infections associated with HIV/AIDS.

Kitovu palliative care physician and medical consultant Mary Simmons explains the impact morphine has made on both patients and health workers:

Pain and symptom relief not only benefits the patients, but the family and even our staff. The suffering of caregivers is intensified when they see their patient suffering. Their relief is obvious when the patient no longer suffers. As for our staff, they repeatedly tell me how grateful they are for palliative care. Before we had morphine, they felt helpless in the face of the suffering of their patients. Now they know something can be done.44

Significantly, greater attention is being paid to the complexities in offering palliative care for people with HIV infections. Kathleen Defilippi and colleagues:

A major aim is to assist those suffering at home, in situations where, as in Uganda and elsewhere in mid-Africa, up to 57 per cent of the population will never have access to a health worker. In this context, antiretroviral (ARV) treatments and palliative care must be delivered hand in hand, thereby extending quality of life to the poorest people. This requires thinking about palliative care within a preventative and public health model in which care can be delivered across the complete trajectory of the disease and in which well-constructed home-based palliative care services can serve as an important platform for education, primary disease prevention and also the support of patients receiving active treatment.45

Association François-Xavier Bagnoud (Afxb)

AFXB is an international organization that sponsors research, programmes and field work in areas such as palliative care, care for AIDS orphans in Africa, humanitarian (p.215) rights and paediatric HIV/AIDS care. The association is named after François-Xavier Bagnoud, a young helicopter pilot committed to rescuing people, who died at the age of 24 during a mission in Mali, West Africa. In 1989, his mother, the Countess Albina du Boisrouvray, joined by her son's family and friends, established and financed the activities of the Association François-Xavier Bagnoud to perpetuate the compassion and generosity that guided François’ life.46

AFXB began its operations in Uganda (1990) with the goal of assisting the people of Luwero to develop community-based capability to meet the needs of orphans in their care. With support from Mildmay International and the Ministry of Health, the palliative care service began in January 2003. Medical director Robert Kalyesubula and his colleagues state:

[Palliative] care is given alongside other supportive programs of income generation activities and provision of education to orphans and vulnerable children. Since the palliative care program started 30 PLWAs have benefited from oral morphine and adjuvant drugs for alleviation of pain … The medical team visits these patients every two weeks and they can also attend to emergencies following calls from the community volunteers. Providing palliative care has alleviated pain and has enabled PLWAs to die in dignity.47

Traditional and Western medicine

In Uganda, palliative care is trying to bridge the gap between traditional and Western medicine in a way that affirms the values of each tradition. Lydia Mpanga Sebuyira, director of clinical services at HAU explains:

People prefer to be seen by a traditional healer, someone who understands their language, understands their background and who actually looks at the whole of them. And we've found that in what they call the Western medical tradition, people are just so busy that they don't have time to think about the whole person. So when palliative care comes along and says ‘we're trying to be holistic as well’, we try to inject back into our practice the kind of things people have been looking for and haven't found. So I think health professionals are saying, ‘We'd like to learn that, but how do we put it into practice?’48

This point is echoed by Yahaya Hills Sekagya, a traditional healer and Western-trained physician:

We all walk to the future in the footsteps of our ancestors; and our ancestors have influence on us. In African spirituality, our ancestors can cause disharmony in our life. They are also responsible for a lot of happiness in our life—but when they cause disharmony, we become more conscious of them and we turn back to them. For example: one of the disharmonies I normally experience with my patients is when an ancestor has died and we don't care about the grave of that ancestor. He can come and cause a disharmony in a person; and it doesn't need much.

When we do the Western investigations and we don't see the cause of disease, as a traditional healer we go into the spiritual cause, and we find that the ancestor is disgruntled about an issue. And to get treatment, you just need to do what is needed. Go dig the grave and the madness will go. You do not need any medicines—the Western approach—but you will have solved the issue. So when we are looking at somebody who is sick, we are viewing him as somebody who is in disequilibrium, and accessing how to treat and restore him to equilibrium requires accessing the subconscious levels, which in spirituality we do.49

(p.216) Ethical issues

Within the International Observatory on End of Life Care, we have chosen a particular framework/template for global ethical analysis. This is the so-called Four Principles approach to health care ethics. The principles are:

Beneficence: the obligation to provide benefits and balance benefits against risks

Non-maleficence: the obligation to avoid the causation of harm

Respect for autonomy: the obligation to respect the decision-making capacities of autonomous persons

Justice: obligations of fairness in the distribution of benefits and risks.

This is not to say that other, or even competing, frameworks for ethical analysis are not relevant. Elsewhere, we have discussed in great detail that particular issue, as well as the various strengths and weaknesses of the approach—and, indeed, whether or not the approach is at all worthwhile.50

We may note, however, that the approach is used worldwide and that it has gained remarkable acceptance since 1979, when it was first introduced.51 This may at least be taken as a sign of the global potential of the approach. Furthermore, and highly relevant in our context here, scholars have used it in analysing the African ethical ‘map’.52 , 53 In so doing, they have managed to highlight both similarities to, and differences between, ‘African’ ethical thinking and the ethical thinking represented by the Four Principles approach.

The African world-view, religion, the vital force principle, and the principles of beneficence and non-maleficence

Peter Kasenene52 claims that there is such a thing as a common African-ness that characterizes the culture and world-view of Africans—notwithstanding the fact that there are remarkable differences in values among Africans; urban and rural, educated and illiterate, Christian or traditionalist.

As far as religion is concerned, Anne Merriman reports that in Uganda, ‘it's about 90 per cent Christian, 10 per cent Muslim, and the Muslim religion is very integrated with the Christian religion—they even marry Christians and don't insist that they change their religion’. We may note that what has been named the vital force principle within African thinking has a profound religious meaning in that ‘this vital force is hierarchical, descending from God through ancestors and elders to the individual’, and, that ‘whatever increases life or vital force is good; whatever decreases it is bad’.52

That also means there is a direct link between the vital force principle and the principles of beneficence and non-maleficence: ‘Following the vital force principle, everyone has a duty to do good to his or her neighbour, especially to friends, relatives and clansmen’, and the very same principle ‘establishes the duty not to cause harm, injure or do anything that reduces the vital force of the individual members of the community or threatens its collective existence’.52 In summary, then, this very important aspect of African thinking does indeed appear to be congruent with the two first principles of the Four Principles approach to health care ethics.

(p.217) The role of justice

Due to the communal nature of African societies, observes Kasenene,52 ‘justice is highly valued’, and ‘justice is first and foremost a social affair’, meaning that ‘an offence against an individual is an offence against the community, and for the good of the community everyone's needs must be attended to without discrimination. Health care is, consequently, made available to everyone according to his or her needs’.52

The Ugandan Government's policy of making morphine available to all patients who need it, free of charge, across districts, is a very clear example of this. The interview with dispenser Peter Mikajjo is revealing as far as the details of this policy are concerned. Also, Jack Jagwe—who has earlier been in government services for some 30 years—has much to say on this policy. In the words of the interviewer, ‘almost uniquely among certain of the countries in Africa, [Uganda has] managed to have morphine availability and its regulations integrated into Government policy’.

Perhaps intuitively, we tend to think of justice in terms of treating people equally. Yet that idea seems to go only half way since people often have different needs, and thus treating them equally could mean that some people will not get enough of what they need. Hence, according to what has been called Aristotle's formal theory of justice, philosopher and physician Raanan Gillon notes, ‘equals should be treated equally and unequals should be treated unequally in proportion to the morally relevant inequalities’.54 Surely a morally relevant inequality is the one between those who are not sick and those who suffer from a life-limiting illness like cancer or AIDS, and who therefore will be in need of good pain control, for example in the form of morphine.

The issue of patient autonomy

The principle of autonomy may be said to be of less importance in the African setting than in, say, most European societies (although this is arguably not so if one compares it with some southern European societies such as Spain, for instance.55 Claims Kasenene: ‘In African culture … beneficence has a higher value [than autonomy], which justifies paternalistic interventions either by the doctor … or by the family’.52 Now paternalism has been defined thus by the philosopher Gerald Dworkin: ‘By paternalism, I … understand roughly the interference with a person's liberty of action justified by reasons referring exclusively to the welfare, good, happiness, needs, interests or values of the person being coerced’.56 Also, more succinctly, another philosopher, Derek Parfit, says of it: ‘We are paternalists when we make someone act in his own interests’.57

That people are sometimes treated paternalistically should also be seen in the light of the so-called communalism principle of African traditional ethics, according to which ‘to be is to belong, and an individual exists corporately in terms of the family, clan and whole ethnic group’.52 There is thus a strong current of collectivism in African societies— something than runs counter to the occasionally quite extreme individualism of Western societies, an individualism that is a pre-supposition of what we may call ‘the ideology of autonomy’ (seen most starkly, perhaps, in the euthanasia and (p.218) so-called ‘right to die’ movements). In concrete terms, this collectivism or communalism comes to the surface when relatives ‘want the doctor or nurse to let them know what the patient is suffering from’.52 Additionally, observes Kasenene, ‘individual autonomy is not respected when the community believes that the person is acting against himself or herself ’.52

That the principle of beneficence thus has the upper hand is something that comes across very clearly in the interviews with Anne Merriman, Ekiria Kikule and Michelle McGannon. They all point to the Ugandan practice of not telling patients about diagnosis and prognosis when they face terminal illness. Anne Merriman mentions the case of a doctor, even, who was not told: ‘recently [a doctor] died … he had an operation, was diagnosed as cancer of the stomach, nobody told him the diagnosis, they told it to the family, they didn't tell him—but he knew, of course he knew’. Michelle McGannon frames the issue of truth-telling in terms of patient confidentiality: ‘I think sometimes that really ties in with the confidentiality, they'll go and tell a relative possibly instead of telling the actual patient first of all’.

Apparently, the lack of respect for autonomy as far as disclosure of diagnosis and prognosis is concerned must also be seen in relation to a culture that denies death. To quote Anne Merriman in her reference to Jack Jagwe—a colleague who happens to be one of the other interviewees: ‘we teach end-of-life ethical issues. One of them is that people can't accept that people are going to die. Dr Jagwe, you heard me teasing him today about death, he's a year older than me and I keep saying to everybody, “Now look, when you reach my age, you should be able to know that death's gonna come any time, you know”, “Oh, God forbid”, says Dr Jagwe … the doctors have the feeling about death, they won't acknowledge that it happens, the senior doctors in particular won't acknowledge that it happens. So if a patient goes into the hospital and they're seen to be terminally ill, they will do everything to resuscitate them’.

Finally, another way to look at these issues is through the principle of non-malfeasance. Patients are not told the truth because doing so is perceived as harming them psychologically—including taking away hope—as well as culturally (compare this with the culture of death denial).

Hospice success stories

Hospice Africa Uganda

Anne Merriman describes the major achievements of HAU in the following terms:

I could never have envisaged that the thing would have grown so rapidly. We started, but I never thought of the future—you just saw what was on your doorstep and what needed to be done. But I think one of the achievements is: although we had a struggle getting into the curriculum for undergraduates, we were teaching in the university here since ‘93 and every doctor that's come out since then knows what we're talking about and is converted. So we've got a group of these doctors who want to prescribe morphine and their senior doctors are telling them not to, but that will all change. We've Dr Jagwe who is trying to change them and he's doing a good job with advocacy, but, you know, it's taking a long time. So I think that's one of the major achievements.

The other achievement is the fact that we've demonstrated that palliative care works and people who've come on our training programmes are really committed to it. When patients come (p.219) here, not only do they have the medicines—they're in their case with them—the doctors start them the minute they see them. They see the patient's pain relieved within an hour—before they leave. If they find a patient or a patient comes in here with severe pain which they've had for months, within an hour they're relieved of their pain and when you can see that, and see it as a reality, you get a deep joy, you know? And so people are really uplifted in their vocation as health workers because they're seeing things happen which they never saw before.58

A hospice patient confirms the discovery of a better quality of life:

Hospice helped me a lot; they helped me in so many ways. My father really praises God for hospice. I was going to hospital every day and feeling bad. But when I start with these people [hospice] they brought everything here; and I'm feeling well, and I've put on weight.59

Little Hospice Hoima

During 2003—2004, the hospice's achievements include:60

  • Acquisition of land for a new headquarters of LHH in Hoima town

  • Establishment of a community volunteers programme

  • Sensitization of the community regarding the work of LHH

  • Increase in pain control for patients

  • Improved report writing due to staff development activities

  • Founding of a journal club.

Mobile Hospice Mbarara

Program manager Martha Rabwoni writes:

Mobile Hospice has continued to expand in both the infrastructure and the personnel. We are very grateful to God who has given us the grace to care for our patients. We have seen many patients in their homes, in hospitals and at roadside clinics. Patients are also examined in the back of our vehicle if the roadside clinic does not provide adequate privacy. The patients in turn have cared for us with a lot of prayers, appreciation and support which have helped us to keep working and sharing our knowledge and skills.61

Regarding HAU training, Fatia Kiyange comments:

We've got the distance learning Diploma course affiliated to Makerere University off the ground; it's running very well. We are having students from different countries in Africa, that's really an achievement for training. We've got the Clinical Palliative Care Course off the ground, it's running—and we do that with the Ministry of Health, so that is also an achievement. We've trained and introduced oral morphine and pain control in 14 districts of Uganda and the morphine is there, they are dispensing it, the Ministry has purchased it and it's free of charge. So that is as a result of our training here, so that's also a major success. And even our major referral hospital: for years they have continued to refer patients, but we have active people now who have been trained to give the service, and they are giving the service there.62

The Mildmay Centre

Successes at the Mildmay Centre are seen in terms of:

  • Communicating the goals and services of the Centre to the people of Uganda (and beyond) such that 〉 7000 patients have come forward to be registered; around 5000 are actively involved with the service at any particular moment

  • (p.220) Changing attitudes—with the assistance of ARVs—regarding the value of a family's investment in a child's recovery, previously seen to be futile63

  • The range of education/training courses being taken up from people both within and outside of Uganda64

  • The delivery of education/training courses in country districts by innovative mobile teams65

  • Public awareness raising of the inclusive nature of the service which, due to the quality of the premises, could be misinterpreted as being exclusively for the privileged

  • Management of a service that has grown rapidly in a short space of time.66

    Among these many successes, a particular cause for celebration occurred on 23 July 2003 when 85 trainees from eight districts of Uganda graduated from the HIV/AIDS palliative care and rehabilitation course. Joy Edith Angulo, mobile training team co-ordinator, writes:

    The trainees at the end of the course designed and presented project proposals to potential donors. It is hoped that these projects will be implemented within the next six months and thus help to develop HIV/AIDS care services in the districts. Some of the districts have also formed palliative care teams within their districts and initiated HIV/AIDS clinics in various health centres and hospitals. The palliative care teams within the districts are also working together to strengthen the services provided.67

Life/oral histories

Derek Atkins—centre director: The Mildmay Centre, Kampala: Interviewed by Michael Wright, 11 March 2003. Length of interview (Mildmay group): 45 min.

                      UgandaDerek Atkins speaks of patient provision at the Centre and of the administrative demands inherent in a growing organization. He draws attention to: the taboo of HIV testing for children; the ethical issues surrounding truth-telling; the potential impact of a positive test on parents; and the support need of families. Successes include the organization's capacity to meet seamlessly the demands of a growing patient base.

Ronnah Abinaitwe—manager, Resource Centre, HAU: interviewed by Michael Wright, 10 March 2004. Length of interview: 32 min.

Ronnah Abinaitwe tells how she graduated in Library and Information Science at Makarere University and now manages the resources centre at Hospice Africa Uganda. This centre has been developed to include computer work stations, bookshelves, storage (p.221)                       Ugandaspace and a meeting area—all with hand-made furniture from a group of German Fathers in Hoima. As the first person appointed to the centre, Ronnah has learnt how to combine library and resource management skills, and has been helped in this respect by a placement with Avril Jackson at Hospice Information in London. The centre is heavily used by hospice staff and by a wide range of students and visitors—frequently from other African countries. She sees herself as part of the hospice team and looks forward to the day when the centre expands to include multiple copies of key books to take pressure off the popular titles.

Julia Downing—director, Mildmay International Study Centre, Kampala: interviewed by David Clark, 2 June 2004. Length of interview: 36 min.

                      UgandaJulia Downing has wide experience of HIV/cancer care and palliative care in the UK both clinically and in the field of education. She worked in a mission hospital in Zambia and, when a post was advertised for a vacancy in Uganda, returned to Kampala as the Director of Mildmay Study Centre (2001). The Centre now offers a wide variety of courses and reaches into the rural areas via mobile education teams. These initiatives are underpinned by Julia's doctoral studies: an evaluation of the mobile training team programme in the rural setting. She underlines the Centre's focus on paediatrics, the importance of counselling, and the role played by religious leaders in rural areas—and of the need for cultural sensitivity in the face of different tribal traditions. Finally, she describes the background to the Cape Town Declaration and her role in the newly formed African Palliative Care Association.

Winnie Elem—palliative care nurse: Lira Regional Referral Hospital, Northern Uganda: interviewed by Michael Wright, 11 March 2003. Length of interview: 10 min.

                      UgandaWinnie Elem speaks of her work at the Lira Regional Referral Hospital (288 beds) where she and her colleague receive referrals to their palliative care unit. Referred patients have either HIV/AIDS or cancer. The unit has one bed for acute cases and they each see around five patients per day. Morphine is available. A community home care service is provided within a radius of 5 km from the hospital—a distance generally considered to be within walking distance (or preferably a bicycle ride).

(p.222) Clare Fitzgibbon—Macmillan nurse consultant, Mobile Hospice Mbarara: interviewed by Michael Wright, 8 July 2005. Length of interview: 38 min.

During the 1960s, Clare Fitzgibbon was working as a theatre sister when she saw a programme about Africa that caused her to change direction and, in 1964, to relocate to a country hospital in Mbarara, Uganda. She stayed until 1972, by which time she had married her husband, Brian (a teacher), and given birth to three sons. Their joint interest in Africa continued and they determined to seek the opportunity to retire early and thereafter offer their skills in the developing world. During the course of her career, Clare Fitzgibbon became a Macmillan nurse and by the early 1990s had heard of the initiatives taking place in Uganda, supported by Anne Merriman. When the Fitzgibbons retired in 1998 and subsequently approached VSO for a placement, they were amazed to find themselves bound for Uganda and Mbarara, an occurrence they regarded as divine intervention. Clare Fitzgibbon tells of her work with the clinical team charged with establishing palliative care education in the curriculum of Mbarara University of Science and Technology; of her struggle with the local language; the issues around truth-telling; and the constraints imposed by limited resources. Her perceived successes include a growing expertise in the use of drugs; the increased empowerment of staff; and the inception of the Mbarara mobile hospice service.

Dr Jack Jagwe—senior adviser, national policy, drugs and advocacy, HAU: interviewed by Michael Wright, 10 March 2004. Length of interview: 29 min.

                      UgandaJack Jagwe speaks of his 30 year involvement with the Government of Uganda and of his role as Deputy Medical Director responsible for clinical services. He has a strong commitment to palliative care, and in 1998 was appointed chairman of the task force which formulated the national palliative care policy which became incorporated into the government's strategic plan, 2001–2005. He recalls how morphine was available during the 1960s and 1970s but then became unavailable during Uganda's period of political turmoil. Oral morphine was introduced with the inception of palliative care under the auspices of the Joint Medical Store. He speaks of Uganda's 20 year experience of HIV/AIDS and of the open way in which the disease has been confronted, right down to the village level. Based on his personal experience, Jack Jagwe is enthusiastic about convincing professionals and ministers of the benefits of palliative care both in Uganda and in other African countries. Finally, he tells of the major successes in Uganda: of the government's acceptance of the need for palliative care; of morphine availability; of the new generation of doctors leaving medical school with an understanding of palliative care; and of the distance learning course validated by the prestigious African University of Makerere.

(p.223) Dr Ekiria Kikule—deputy director and research co-ordinator, HAU: interviewed by Michael Wright, 10 March 2004. Length of interview: 1 h 9 min.

                      UgandaEkiria Kikule met Anne Merriman and Jan Stjernswärd when she took a Master's degree in public health. She was invited to join the hospice as a researcher and became executive director in 2002. She tells of her commitment to hospice after being influenced by a succession of home visits, her sister's painful death from cancer and another sister's relief from suffering after taking morphine. She highlights ethical issues surrounding palliative care: of truth-telling and breaking bad news; of relationships with traditional healers (herbalists); and of the benefits of collaborative working. As a result, herbalists are encouraged to assist with the provision of natural ingredients, such as laxatives, whereas hospice retains an input into pain relief. Turning to the future for Hospice Africa Uganda, she speaks of the component roles of service, training and modelling—and of the strain arising from the demands on the organization due to its unforeseen success and growing requests to ‘scale up’. Although the hospice is not based on one particular faith, she considers that many staff are drawn to the service because of their personal faith, a feature which is manifest in many ways, not least in the generous gifts of time. In future, closer co-operation with faith-based organizations is expected to help the hospice reach the poorest people in very remote areas, although a current priority is also to secure essential funding.

Fatia Kiyange—education administrator, HAU: interviewed by Michael Wright, 10 March 2004. Length of interview: 22 min.

                      UgandaFatia Kiyange trained at Makerere University and tells of her background in social work and social administration, and how she eventually arrived at Hospice Africa Uganda (department of education and training) in April 2000. At that time, the education block had not been constructed and the small team worked in one room of the hospice. Nevertheless, there was a comprehensive range of courses which targeted medical students, spiritual leaders, health professionals and volunteers—and which now form the core of the expanded provision. She speaks of the value of the sensitization programmes, of the challenges posed by reactionary (senior) health professionals and the strategies used to develop palliative care throughout the country. As the courses developed, the department scaled up to a staff of 10, and Hospice Africa Uganda became regarded as a significant training institution. The aim is now to integrate palliative care into all 56 districts in Uganda, with an accompanying training programme to support these clinical innovations.

(p.224) Dr Emmanuel Luyirika—director of medical services: The Mildmay Centre, Kampala: interviewed by Michael Wright, 11 March 2003. Length of interview (Mildmay group): 45 min.

                      UgandaEmmanuel Luyirika speaks about the work of the centre since it opened in 1998. Focusing exclusively on AIDS patients, this encompasses a broader remit than hospice/ home-based care organizations, since team members are involved in a continuing process of sustaining life, dealing with opportunistic infections and helping people return to work—as well as providing care at the end of life. Currently, 7545 patients are registered with the organization, 5000 of which are regular patients—half of them children. Networks have been established countrywide and patients are also drawn from neighbouring countries. Challenges faced by the new organization relate to the affordability of ARVs and the reluctance of some families to invest in a child with a life-limiting disease. Successes relate to the public welcome now given to AIDS patients and the obvious signs of improvement in human lives—weight gain, hope and the capacity to return to work.

Michelle McGannon—co-ordinator, distance learning Diploma in Palliative Care, HAU: interviewed by Michael Wright, 10 March 2004. Length of interview: 33 min.

                      UgandaMichelle McGannon speaks of her role as co-ordinator of the distance learning Diploma in Palliative Care: a course she helped to establish which has attracted widespread interest. She intends to remain in Uganda until October 2004, by which time she will have completed 〉 3 years in Kampala, having previously been with the hospice during 1998/1999. She comments on the high standards of professionalism among the staff. A key feature of the distance learning course is that it is African in nature, located within an African University, with modules written by African-based educators. As a result, every element is culturally and clinically appropriate to Africa. Importantly, modules include an education element so that students can pass on their skills in their own country. Interest for the October 2004 intake is high. In future, the department is looking to build on the current successes, capitalize on the enthusiasm of the students, fine-tune the curriculum and provide more clinical support. In 5 years time, it is hoped to offer a Bachelor's course—and a Master's course in 10 years.

Margaret Mawanda—public relations officer: the Mildmay Centre, Kampala: interviewed by Michael Wright, 11 March 2003. Length of interview (Mildmay group): 45 min.

(p.225)                       UgandaMargaret Mawanda recalls the opening of the Mildmay Centre by Princess Anne, and how many thought that Princess Diana had been involved too, due to her well known interest in patients with HIV/AIDS. The buildings are impressive, and this aspect of the centre gave rise to a widely held misunderstanding: that the centre was designed and intended for whites. She tells of the determined—and successful—public relations effort to change this misapprehension and how the centre has now been warmly accepted by patients and the local community.

Dr Anne Merriman (1)—founder and director, medical services and education, Hospice Africa Uganda: interviewed by Michael Wright, 9 March 2004. Length of interview: 1 h 18 min.

                      UgandaAnne Merriman recalls her childhood as a member of a religious family in Liverpool. When 4 years old, she declared an interest to work in Africa and as she grew up, became profoundly affected by the death of her 11-year-old brother from cancer. After leaving school, she joined the Medical Missionaries of Mary, a religious order founded in 1937 to care for the sick in Africa. After an unfulfilling time working in a laboratory, she was accepted by the sisters for medical training and thereafter undertook a 9 year placement in Nigeria. Changes within the Catholic Church after Vatican II—combined with the illness of her mother—caused her to leave the Order after 20 years service and return to Liverpool. There she practised geriatric medicine. As she became committed to palliative medicine, she organized a conference with Cicely Saunders that began a series of developments in the Knowsley and Liverpool area. After her mother died, she moved to Singapore where she focused on the needs of an ageing population. Starting in 1985 with a group of volunteers, she commenced a palliative care home care service to meet the needs of patients who were not benefiting from conventional chemo- or radiotherapy. This followed on research carried out from the national University of Singapore (NUS) where she was working in Community Medicine. This eventually became a palliative home care service under the Community Chest (Social Services) and commenced from her 22nd floor flat. As her contract with the NUS came to an end, Gillian Petrie Hunter suggested she develop the newly established service in Nairobi, a commission she accepted in 1990 on condition the government procured oral morphine. Despite the potential in Kenya, she became frustrated by excessive bureaucracy and eventually moved to Uganda (1993) to set up a model service capable of implementation in other resource-poor countries. She goes on (p.226) to speak of the challenges she faced, how they were overcome and how palliative care was eventually incorporated into the government's 5-year strategic plan. She then reflects on the spiritual dimension of health care, of her hopes for the future and of the relationship between supportive care and palliative care—drawing particular attention to the benefits of grafting pain control onto existing supportive care networks, and the essential task of procuring affordable morphine.

Dr Anne Merriman (2)—founder, director, medical services and education, Hospice Africa Uganda: interviewed by David Clark, 20 July 2004.

In a short interview, published in full on the website of the International Observator y on End of Life Care, Anne Merriman speaks about the impact of HIV/AIDS in Africa. In the past, support has been available for treatment and behaviour change relating to HIV/AIDS but, until recently, there has been little forthcoming for the dying. Many want to die at home, but that is not always possible. Poverty, lack of food to take with medicines, a dearth of trained personnel and the inaction of governments provide barriers to palliative care development. Yet countries like Zimbabwe and Kenya have shown what can be done. Since 1993, Hospice Uganda has developed a model of care that can be utilized in other resource-poor countries of Africa. With the impetus provided by the PEPFAR initiative, developments will begin to happen more quickly and on a broader front. A significant development has been the establishment of the region-wide African Palliative Care Association (APCA) which held its first meeting in June 2004 in Arusha, Tanzania; representatives attended from 20 African countries. These developments, together with a wider accessibility to morphine, will provide significant opportunities for palliative care development in the future.

Peter Mikajjo—dispenser, HAU: interviewed by Michael Wright, 10 March 2004. Length of interview: 28 min.

                      UgandaPeter Mikkajjo tells of his background working in a mission hospital, of his interest in pain, and how he moved to Hospice Africa Uganda in 2001. He describes how morphine powder is supplied by the Joint Medical Store, how he mixes the powder into a solution and then dispenses liquid morphine in three different strengths, coloured appropriately. He goes on to speak of the internal procedures required to monitor the use of morphine and how prescriptions are balanced with the records of morphine dispensed at the end of each day. In addition, patients sign a record sheet to confirm their morphine use, and each week these records are returned to the pharmacy and reconciled with the stocks issued.

(p.227) Rose Nabatanzi—palliative care nurse: Kitovu Mobile Home Care: interviewed by Michael Wright, 11 March 2003. Length of interview: 11 min.

                      UgandaRose Nabatanzi tells how Sister Ursula of the Medical Missionaries of Mary founded Kitovu Mobile Home Care in response to a growing awareness of the AIDS epidemic. As the disease became apparent, myths and fears developed around the infection. The early sufferers were thought to be punished for past thefts and consequently became stigmatized and marginalized. Sufferers sold their homes and possessions in an attempt to make restitution, falling into extreme poverty; their children dropped out of school and relatives were abandoned at the hospital doors. In this scenario, Sr Ursula cared for infected people with a small team of nurses, gradually increasing the provision to include community volunteers and local co-ordinators. Food, soap and sugar were provided alongside medicines and, with the introduction of morphine in 2000, home care developed into a palliative care service. Today, the service covers 124 centres throughout three districts of Uganda.

Dr Lydia Mpanga Sebuyira—director, Clinical Services, HAU: interviewed by Michael Wright, 21 September 2004. Length of interview: 37 min.

                      UgandaLydia Mpanga Sebuyira was born in Uganda but spent extended periods in England, where she studied medicine at Oxford University. After working in a hospice in Sunderland, she returned to Kampala and bumped into Anne Merriman—wearing a Hospice Uganda T-shirt—on one of the wards. As a result of that meeting, she became a visiting consultant at the hospice while lecturing at the medical school for the next 5 years. As she prepared to take some of Anne Merriman's responsibilities, her husband was offered a position in South Africa—and Lydia subsequently took up a position at St Francis Hospice, Port Elizabeth. She recalls the impression that the South Africa experience made upon her: the struggle against poverty; the stigmatization of HIV/AIDS patients; and the role of the local church—factors which impacted upon her advocacy role. Returning to Uganda in 2003, she has rejoined the hospice team as Director of Education; a position that looks increasingly beyond the borders of Uganda to other African countries which request assistance.

Dr Yahaya Hills Sekagya—general secretary, National Integrated Forum for Traditional Health Practitioners, Uganda; President PROMETRA Uganda: interviewed by Michael Wright, 9 September 2004. Length of interview: 20 min.

(p.228)                       UgandaYahaya Hills Sekagya outlines an African concept of illness that integrates the spiritual and physical domains of person-hood with strong ancestral connections. As a traditional health practitioner who is also a Western-trained physician, he articulates the benefits and drawbacks of each approach and speaks of the possibilities for collaboration—an activity that is already proving beneficial in Uganda. He reflects on the practical problems of reaching the poor in remote rural areas, and of the difficulties of dispensing modern medicines in such circumstances. Against this background, he advocates for a better understanding of how herbal remedies and Western treatments can complement one another.

Dr Janet White—founder, medical director: Joy Hospice: interviewed by Michael Wright, 11 March 2003. Length of interview: 12 min.

                      UgandaIn this interview, Janet White recalls how she founded Joy Hospice (Jesus first, Others second, You last) in 2001. She first came to Uganda with the Deliverance Church in 1988 and thereafter combined medical and educational work. After a spell in Kenya (1994–1998), she was invited by the church to return to Uganda and establish a medical service in Mbale. The following year, a second clinic was established in Buwasunguyi. By this time, the majority of patients were presenting with advanced cancers and end-stage AIDS. As a result, Janet White began to nurse patients in her home in Mbale. Recognizing a gap in provision, she then obtained and renovated a house, creating a 5-bed inpatient unit, and launched a palliative care service on 31 August 2001.

Public health context

Population

Uganda has an estimated population of 25 million of which 66% is Christian (Roman Catholic 33%, Protestant 33%), 16% Muslim, and 18% subscribe to indigenous beliefs.68

Epidemiology

In Uganda, the WHO World Health Report (2004) indicates an adult mortality69 rate per 1000 population of 505 for males and 431 for females. Life expectancy for males is 47.9; for females 50.8. Healthy life expectancy is 41.7 for males; and 43.7 for females.70

At the end of 2003, UNAIDS suggested that in Uganda, up to 880 000 adults and children were living with HIV, and that up 120,000 AIDS-related deaths had occurred during this year (Table 8.6).

Government action has helped reduce the prevalence of AIDS from 30 per cent of the population in the early 1990s to an estimated 6 per cent in 2002. This package of support (p.229)

Table 8.6 Uganda HIV and AIDS estimates, end 2003

Adult (15–49) HIV prevalence rate

4.1 per cent

(range: 2.8–6.6 per cent)

Adults (15–49) living with HIV

450 000

(range: 300 000–730 000)

Adults and children (0–49) living with HIV

530 000

(range: 350 000–880 000)

Women (15–49) living with HIV

270 000

(range: 170 000–410 000)

AIDS deaths (adults and children) in 2003

78 000

(range: 54 000–120 000)

Source: UNAIDS 2004 report on the global AIDS epidemic.

has focused on prevention and care, and includes awareness raising, education, condom distribution, and voluntary testing and counselling. UNAIDS reports:

AIDS is the leading cause of death for those aged 15–49 years. The overall antenatal HIV prevalence rate in 2002 was reported to be 6.5%. The country has an orphan population of more than two million, nearly half as a result of HIV/AIDS. Single, widowed surviving mothers and elderly widowed grandmothers have now become the predominant heads of households.

Even within this grim picture, Uganda has become a beacon of hope and an example of accomplishments in the area of HIV/AIDS for many countries all over the world. The government and the people of Uganda have consistently pursued a policy of openness about HIV/AIDS, backed by the strong political commitment and leadership of President Yoweri Museveni. By mainstreaming HIV/AIDS prevention and control into different sectors, in national plans, including the National Poverty Eradication Action Plan, all segments of society in all parts of the country have been encouraged to play a role. In addition, the government has been successful in mobilizing additional resources for HIV/AIDS.71

Health care system

In its World Health Report, 2003, WHO noted that the total per capita expenditure on health care in Uganda was Intl $57; 5.9 per cent of GDP72 (Appendix 3).

The WHO overall health system performance score places Uganda 149th out of 191 countries.73

The Government of Uganda has adopted a national health policy74 and endorsed a 5-year plan which began in 200175 that includes palliative care in its remit. As a result, the possibilities for growth—in both service provision and professional education—have been significantly improved.76 The Ministry of Health works closely with palliative care stakeholders and during 2004 has coordinated a network of services that includes: Ministry of Health clinical services and AIDS control programmes, WHO field Office (Kampala), Hospice Africa Uganda, Mildmay International, TASO and Makarere University.77

Stjernswärd and Clark comment on Uganda's Health Strategic plan as follows:

Uganda is the only country in Africa that has made palliative care for people with AIDS and cancer a priority in its National Health Plan where it is classed as ‘essential care’ … Uganda has (p.230) established all the foundation measures as recommended by WHO. A clear national policy has been established, education in palliative care is incorporated into the undergraduate curricula of doctors and nurses, health professionals at all levels are exposed to courses and workshops in pain relief and palliative care and affordable morphine has been made easily available and is produced generically in the country.78

Ekiria Kikule, executive director of HAU comments on the role of the government in Uganda:

When this present government came in, in 1986—remember the civil war—they had already seen the scourge of AIDS during their bush struggle, so they came in knowing there's a problem. And they came in openly and said, ‘Look, we have a problem, we need help. What do we do?’ They also started from a need, I mean people saying, ‘My husband is sick with HIV/AIDS’ or ‘I have lost one—nursing one—maybe you have the disease’ And they would sit and ask themselves: ‘What do we do? How do we do it?’

I remember I was in London in 1988 and Princess Anne came to visit and of course the BBC was there, and I felt very proud to see my President on the BBC being interviewed. There were all these cameras and whatever, but I remember a reporter asking President Museveni ‘You are talking about AIDS openly, don't you think that somebody's going to turn it into a political issue and discredit your government?’ And he said ‘I don't care, somebody might; but what I know is that we have a problem, our people are dying, and we want help. Anybody who has any kind of help to help us fight this,’ he says, ‘we need it’. And for me I really felt proud. This is a man who was so secure and was not about to turn an epidemic into a political thing. The Government was behind anybody who had anything to offer.79

Political economy

Uganda has substantial natural resources, including fertile soils, regular rainfall and sizable mineral deposits of copper and cobalt. Agriculture is the most important sector of the economy, employing 〉 80 per cent of the work force. Coffee accounts for the bulk of export revenues. Since 1986, the government—with the support of foreign countries and international agencies—has acted to rehabilitate and stabilize the economy by undertaking currency reform, raising producer prices on export crops, increasing prices of petroleum products and improving civil service wages. The policy changes are especially aimed at dampening inflation and boosting production and export earnings.68

GDP per capita is in Uganda Intl $964 (Appendix 4).

References

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79 IOELC interview: Ekiria Kikule—10 March 2004. (p.234)