THE APLI News Australasian Palliative Link International

December 2008 Volume 11 Issue 2

Palliative Care in the Democratic Republic of the Congo – A recent visit

1 December 2008 Volume 11 Issue 2

THE OBJECTIVES OF APLI

1. To develop and foster links between palliative care providers and organizations in Australia and New Zealand and the Asia- Pacific region. 2. To provide a forum for the exchange of information and ideas between providers of palliative care in the region. 3. To raise awareness of the needs of new palliative care services and for further development of palliative care in the region.

Welcome to this second APLI Newsletter of 2008. In this issue we have:

* A reflection on her experiences with Pallium India by Raelee Jensen

* Palliative Care teaching in China by Drs Jan Maree Davis, Ghauri Aggawal and Jennifer Wiltshire

* Palliative Care in the Democratic Republic of the Congo – a recent visit in October 2008 by Gaye Bishop

* A visit to Peter MaCallum Cancer Centre by a Malaysian Palliative Care Nurse by Morna Chua

* Palliative Care in East Timor – Early Steps by Frank Brennan, Joan Ryan

Welcome submissions of articles of interest to our readers. Please contact the Editor, Frank Brennan at Calvary Hospital 91 Rocky Point Road, Kogarah, NSW, 2217 or [email protected]

2 Editorial

Welcome to this edition of the APLI Newsletter. Internationally the discipline and practice of Palliative Care continues to grow. That growth often reflects local issues, perspectives and solutions. No two countries will have identical Palliative Care services. Indeed, the wide variations on a theme make the practice of Palliative Care fascinating. Nevertheless core values remain – meticulous care of the patient, care of the family and carers as well as the patient, a clear recognition of the importance of all domains of care – from the physical to the psychological, emotional and spiritual. Wide variations also exist in resources, training of health professionals, acceptance of the principles of Palliative Care and the availability of essential medications. Each issue of this Newsletter reinforces those similarities, differences and challenges. This issue contains material from India, China, the Democratic Republic of the Congo and East Timor.

In the next issue we will examine the concept of Palliative Care as an international Human Right. Over recent years this topic has gained considerable interest and momentum. What does this statement actually mean ? Beyond a statement of advocacy what are strengths and weaknesses of this concept ? How is the international Palliative Care community employed this concept ?

I wish to thank each of the contributors for their excellent articles. If you have any material you wish to contribute to this Newsletter (or know anyone who could) please contact me.

Frank Brennan Editor APLI Newsletter [email protected]

3 A Reflection of my Experiences with Pallium India. By Raelee Jensen, Palliative Care Nurse

I have been coming to Kerala in India to work in Palliative Care for about eight years. I have slowly worked my way down to the south of Kerala to Trivandrum, where I have mostly been for the past 18 months, apart from two short trips back to New Zealand to reconnect with family and friends and renew my visa. I have been asked to reflect on my time here both good and bad at TIPS, Pallium India, in my work both as a visiting nurse lecturer and Homecare nurse.

I am sure that India equips one well to practice what we preach in palliative care; that is to put “life into days, instead of days into life”. India can force you to live in the present moment, to expect the unexpected, encourages you to not have too much expectation and to accept situations as they are. She teaches you to live among a certain degree of chaos and survive. She teaches you to love and hate, taking you to the edge again and again. Every day here is a surprise. But mostly India teaches me patience and resilience and almost always calls me back. Those of you that have visited India will have many stories to tell that reflect some of these thoughts, I am sure.

I can hope that I make a difference to others life’s; isn’t this why we do the work we do? but sometimes the difference is so minute….. Can I see it?

One of my main aims here is to teach nurses palliative care, so that eventually these nurses will teach others palliative care. Palliative Care Nurses are like; I cannot say gold as gold is very popular here, so I will say like greenstone. When I return to New Zealand I work with at least 30 very experienced independent palliative care nurses, and then I wonder why, I am there and think I should get back to India and continue to share what I know. The nurses education here comes from a scientific point of view and areas of weakness seem to be in communication, holistic care and inter-personal skills; these are new concepts to them but as you know, really important in Palliative Care.

My other aim is to raise the morale of nurses which can be low, so that they believe their job is of value and that they do make a difference to patients and families. Also the students need to be encouraged and empowered to think for themselves, not just to carry out a doctor’s instruction, so I stress the importance of through assessment, so that information can be shared within the team. The students here are very good at text-book learning, but to trick is to actually apply this to practice. Sometimes there is a gap between the learning and the doing. However we are lucky at Pallium India that there is a strong clinical approach to both the doctors and nurses courses.

Nothing is more beautiful than to be able to visit sick people and their families in their own home. This is particularly pertinent in India, where so many people in the villages will not seek medical care unless we as a team go to them. There reasons are money; many are financially crippled by illness and also their basic discomfort of hospitals which are often very unfamiliar environments to them.

Our whole definition of what palliative care is challenged here. There are many people, that have had traumatic accidents, stroke or picked up a virus that has left them bed bound and they go home with no follow-up or rehabilitation. Therefore we often met them with a vast unnecessary array of problems like contractures, bedsores, immobility and depression.

4 Financial needs are heavy, due to the medical costs and the loss of income through the illness. Many families no longer see admission to hospital as a viable option. A family member has to be available to care for their loved one in hospital here and this isn’t always possible either. Hence the importance of homecare, because without this service many families will not access medical care.

I really admire the relatively new team here. Recently I went on a home visit to a new patient, an elderly widow with cancer of the buccal mucosa. She was curled into the fetal position and at first we thought she was asleep. Her fungating wound was oozing through the dressing and obviously needed attention. When we opened the dressing, maggots just fell from the wound and the lady started to pick them up with her fingers and squash them. Her degree of dignity had dissolved to nothing.

I watched the nurses get to and practically attend to this lady, by removing every possible maggot from the wound, redressing beautifully, and attending to all other possible needs, like a two week history of constipation and some pain management with anti-emetic. She had had some morphine elixir prescribed but had stopped taking it because of nausea and vomiting.

While taking care of these matters they never forgot about the person living with such distress and resignation. Although the nurses were shocked, it never showed on their faces. The family had been scared to dress the wound as they thought they could catch the disease. Two hours later we saw a glimpse of a new happier woman that even managed to smile, when she could barely open her mouth. She died two days later.

There are so many stories like this to tell in all our countries, but in the developing world the stories are made more difficult by the unevenness and lack of resources, lack of efficient government support and access to education in Palliative Care.

Raelee Jensen

5 Palliative Care visit to China Ghauri Aggarwal, Jan Maree Davis and Jennifer Wiltshire - Palliative Care Physicians, Sydney

In April this year, we were invited on a teaching trip to mainland China and Hong Kong. This came to fruition through our connections with Dr Xiao Mei (Lily) Li (who visited Sydney in 2007 for 6 months) and Prof Rico Liu (Rico trained with some of us here in Sydney some 10 years ago). After a brief but enjoyable visit to Shanghai, where incidentally, Jan Maree had her wallet stolen outside the Yu Gardens, we landed in Beijing. How gracious is the Chinese spirit: we were met at the airport by Lily and our tour guide organised by our host and a pharmaceutical company. They had planned our whole stay in China with so much thought and attention to our needs and tourist interests. Our first glimpse of Beijing was contrary to our expectations: a thriving modern, clean, green city with blue skies. Gone are the days of bicycles, but they still drive as if they are on them, with the western traffic jams that we are all used to.

Apart from the Great Wall of China, The Forbidden City, the Summer Palace and the Ming Tombs, we devoted our time to a passion of ours, teaching! We went to the Beijing Military Hospital and met with Lily’s boss, General (Professor) Liu. Both are leaders in their field of Medical Oncology and provide great leadership with their honest, caring, compassionate natures. Professor Liu proudly showed us a magnificent painting of a forest and waterfall, which held special meaning for him.

Dr Wu showed us around the oncology unit, which reminded us of the old Eversleigh Hospital in Sydney. In particular, the fantastic garden that was designed by Professor Liu himself. He had gone to enormous trouble to design the gardens so patients could still take in the tranquility of the outside world. At the entry to the oncology ward we were joyously struck by the sculpture of a young girl holding a bird.

The next day we had to present to over 200 doctors, nurses and dentists at a major Cancer Pain Symposium. This was a daunting task to present in English to a Mandarin audience. Our first experience into the world of direct translation!

Our topics were: 1. Assessment & management of Pain (JMD) 2. Adjuvants in Pain Management (GA) 3. Pain Syndromes and difficult pain cases (JW)

6 We spent the morning learning to lecture with the use of a translator and having the experience of our slides translated into Mandarin. It was with awe and fascination that we looked on at the speed with which this was done. We have kept copies of these for our next trip to China! One of our translators, Dr Michael Zhang, was a medical student with an impressive CV. He was on his way to Harvard on a scholarship for Public Health and had translated for overseas guest speakers many a time before.

The audience was appreciative of our effort and interested in its content and there was great interaction and lots of questions at the end of the presentations. We were followed by a camera crew on our tour of the hospital, and no doubt we were on the Chinese equivalent of RPA!

We were very lucky to meet Professor Ping Ping Li, Head of the traditional Chinese Medicine unit and her team. We spent the afternoon, sharing ideas on cases, and discussed complex symptom management issues. We were fortunate to learn about the integration of western and traditional Chinese medicine.

That evening we met with the local palliative care association attended by all the senior clinicians of the city and neighboring districts. We shared ideas over a lavish meal of Peking duck, (JanMaree and Jennifer were in 7th heaven and Ghauri was in vegetarian nightmare...... not a mock duck in site!)

See the next installment for our sojourn in Hong Kong. Suffice to say, we had a thoroughly memorable trip to China and Hong Kong and look forward to our next trip there!

Ghauri Aggarwal, Palliative Care Physician, Concord Hospital, Sydney Jan Maree Davis, Palliative Care Physician, St George Hospital, Sydney Jennifer Wiltshire, Palliative Care Physician, Liverpool Hospital, Sydney

The above article originally appeared in the NSW Palliative Medicine Society Newsletter, Winter Edition 2008

7 My experience during attachment at Peter MacCallum Cancer Centre, Melbourne (12/11/07-9/12/07) by Morna Chua, Palliative Care Nurse, President of Kota Kinabalu Palliative Care Association, Malaysia

First of all I would like to thank the Ministry of Health of Malaysia for giving me the opportunity to have a month’s attachment in Australia through the kind recommendation of Dr. Mary Cardosa, to Dr. Odette Spruyt’s team at Peter MacCallum Cancer Centre for all the guidance and hospitality.

This trip had widened my knowledge and allowed me to look at the different set- up of Palliative care service and compared care provided in Malaysia. Glad to know that we are actually doing well in the provision of seamless care for our advanced cancer patients with the limited resources we have; compared to the facilities, abundant resources and the remarkable ICT set-up in the centre.

During the attachment I had seen the career structure where there were Nurse specialists/consultants besides nurse coordinators for every discipline in caring for cancer patients. The multidisciplinary team consisting of doctors, nurses, social worker, physiotherapist, occupational therapist, pastoral carer, psychologist, psychiatrist and volunteer coordinators are all looking into their own specific role. Team discussions are held regularly to decide on the patients’ management. Everyone’s role is very focus, which I think would make a lot Team discussion led by Dr. Odette Spruyt, of difference in the management of patients. Head of Pain & Palliative Care Dept

In the provision of complementary therapies, professionals provide music therapy, massage, reflexology, meditation, relaxation therapy, etc. Volunteer coordinator is employed helping to provide a better system in coordinating the volunteers and ensuring the smooth running of the volunteers’ activities/program. Volunteers seen in all the set-up of Palliative Care services are very committed actively involved in various activities of the organisation.

It was indeed a great attachment; learning new things, meeting nice people, making new friends and networking. In palliative care, we always meet nice people and there are some much to share with one another because we all come with the same mission, i.e. to care and do our best to walk that journey with those walking that journey. When it was time for Doreen and I to leave, it was like we had been there for a long time and fond memories of our trip will always remain.

I would also like to take this great opportunity to thank each and everyone who had facilitated in many ways to make our attachment very fruitful and enjoyable.

Morna Chua

8 Goma, Democratic Republic of the Congo, Palliative Care visit October 2008 By Gaye Bishop, Palliative Care Nurse Educator

My first impressions of Goma in April 2007, were of a community struggling to survive through years of war, disease, volcanic eruptions and poverty. I felt overwhelmed and helpless and desperately wanted to assist the staff to ease their patient’s pain. The patients at HEAL Africa hospital were cared for with compassion and concern by staff who devoted their time, skills and energy into saving and mending broken bodies, minds and souls any way they could.

HEAL Africa’s purpose is to train leaders and promote healing in the Democratic Republic of the Congo (DRC) and Africa through a wide range of programs. These include: Medical education and clinical training for doctors and health care workers, programs for women victims of sexual violence, programs for HIV/AIDS sufferers, intensive farming programs.

I am a Palliative care nurse educator and I saw an opportunity to assist HEAL Africa staff to provide palliative care for their patients. Lyn Lusi invited me to return to support and teach palliative care to doctors and nurses at the hospital and to those from the home based care teams.

On 9th October 2008 I arrived in Goma excited at the chance to renew friendships and partner with devoted nurses in relieving suffering. I was hoping to make more of a difference to people’s lives. I came with a team of 4 nurses and 1 doctor who worked at the hospital with other volunteers and HEAL staff. I met Roger who coordinates the home based care teams, and we discussed how HEAL partners with other organizations to visit patients suffering with HIV/AIDS. We planned to visit patients from 5 organisations to assess and evaluate their care. We visited 17 families in total. We were unable to visit the 6th team as they were outside of Goma in a dangerous area. The situation in north Kivu and Goma was under constant threat from Rebel forces and I saw victims of this conflict daily.

My background in Community palliative care nursing never prepared me for seeing patients living in such poverty and suffering. The staffs, patients and their families were very appreciative of my visits as they want the developed world to acknowledge their suffering and to advocate for them. I felt moved to tears knowing that I could only offer temporary relief to a few but encouraged that the Congolese nurses and HEAL team were committed to their patients needs and keen to learn how to use a Palliative Approach to care.

The educational aims were:

• to teach the health care teams the principles of applying a Palliative Approach to care. • to observe clinical practice in this cultural setting • to contribute to this learning environment in a practical way

9 After 5 days of home visits I prepared the workshops. I discussed the topics with Roger and we agreed to the most suitable program. I needed to adapt my presentations to the local needs and included Palliative Approach, pain and symptom management, symptom management in HIV/AIDS, assessment and care planning, case studies. We had presentations, group discussion, question time and case study review.

Some challenges in educating in a war torn society included:

• Access to resources – staff (many needed travel costs) medicines, diagnostic tests, food, educational resources (paper, internet etc) • Availability of medications – limited supplies and often the medications are costly. • Hospitalisation – too costly, poorly resourced and understaffed. Home based care needs more support. • Nurses strike – ongoing. Nurses are on strike because they have received no pay for many months. • Regular power blackouts – I was glad for the laptop battery!! • Poverty – patients need adequate nutrition and housing. Not available. • Security – staff and patients too afraid to leave their homes even if they are sick. • Language and Translation – I needed to think and respond creatively to communicate effectively. My translator was very patient! • Cultural issues – complex and delicate at times. My learning continues!

This experience has changed my nursing practice and challenged my world view. To relieve human suffering is everyone’s responsibility and I hope to continue advocating for those communities who struggle to have safety, adequate water and nutrition, shelter, basic health care and education.

Gaye Bishop Palliative Care Nurse Educator The nursing staff from the home based care teams

10 Palliative Care in East Timor – first steps Frank Brennan, Palliative Care Consultant, Calvary Hospital, Sydney Joan Ryan, Palliative Care Nurse, Royal Prince Alfred Hospital, Sydney

In June 2008 we traveled to East Timor. We were a member of a small group of three Sydney-based health professionals – ourselves and Dr Mathew Links, Medical Oncologist (St George Hospital). We traveled to East Timor (Timor-Leste) to review Palliative Care and Medical Oncology services in that nation. Essentially the visit was one of fact-finding, assessment of needs and an exploration of both the challenges and opportunities for service provision. The health professionals were accompanied and guided by Sister Joan Westblade LCM who has extensive experience in Timor-Leste. The visit was generously funded by the Little Company of Mary, Australia.

Background on East Timor

East Timor (Timor-Leste) is one of the youngest independent nations in the world. It is also one of the most traumatised by successive waves of colonization, invasion, dispossession and violence. After more than 4 centuries of colonial rule, Portugal, experiencing a major domestic crisis, withdrew from its colonies, including East Timor, in 1975. Into this political vacuum Indonesia invaded East Timor and between 1975 and 1999 held strong control. An indigenous resistance movement rose through this time. In 1999, after a change of domestic government in Indonesia, a referendum was held in East Timor. The people of East Timor voted overwhelmingly for independence. A period of shocking violence followed orchestrated by Indonesian-backed militia that destroyed at least 80 % of the nation’s infrastructure. United Nations forces arrived and imposed order. In 2002 East Timor was proclaimed an independent nation.

Timor-Leste occupies the eastern section of the island of Timor, which lies to the north of the Australian mainland. The population of Timor-Leste is approximately 1 million people. Approximately half the population is under 15 years old. Despite petroleum reserves Timor-Leste remains a poor nation. There are multiple languages spoken including Tetum (the indigenous language), Bihasa-Indonesian, Portuguese and English.

Health background

Illness, health and the provision of health care services are critical issues in Timor-Leste. The overall life-expectancy is 61 for males and 66 for females. The major illnesses in the nation are Malaria, Tuberculosis, malnutrition, obstetric complications (including maternal deaths), Respiratory infections and Leprosy. Statistics on malignancy are not known.

Health services

There is national Timor-Leste Department of Health that oversees the provision of health care services throughout the nation. There is a National Hospital in Dili, several major District 11 Hospitals, regional Health Centres and Village Health posts. There are multiple non-government organizations that are involved in managing public health programmes in Tuberculosis, maternal and infant nutrition, Leprosy, epilepsy etc.

There is a critical shortage of trained nurses in the nation. There are only 6 Registered Nurse – equivalents in the country. The Hospital-based nurses were trained to the equivalent of Nursing-Aides. There is a School of Nursing and Allied Health based in Dili.

Doctors in Timor-Leste have multiple origins. There are a small number of Timor-Leste doctors trained in Indonesia. There are doctors attached to the United Nations or delegations from individual nations. The most substantial number in the latter category are those from Cuba. Cuba is involved in medicine in Timor-Leste in three main ways :

1. Cuba sends out doctors for a 2 year attachment to work in Timor-Leste. 2. Approximately 700 local Timor-Leste students are currently studying medicine in Cuban medical schools. 3. In addition to students going to Cuba, Cuba has organized to teach Medicine in Timor-Leste itself. All the teaching faculty are senior Cuban doctors.

Extent of palliative care

In summary there is no Palliative Care service provision in Timor-Leste. Specifically there is no National Palliative Care plan, no health professionals working in Palliative Care, very limited understanding of the role of Palliative Care in the trajectory of serious life-limiting illnesses, limited availability of Essential Medicines used in Palliative Care and no availability of oral morphine. The care of the dying patient is assumed by families in their homes and villages. We observed some faith-based care of ill people in their homes but our impression was that these interventions were an exception rather than the rule. Sister Joan Westblade providing comfort to many Timorese

Why is Palliative Care an important priority for Timor-Leste?

Over recent years there has been an increasing recognition of the public health priority of Palliative Care throughout the world. Death is universal. How death occurs and what level of professional attention is devoted to it varies enormously. In Timor-Leste death occurs prematurely, of serious illnesses and often with an absence of professional involvement. Repeatedly we were told in our visit to Timor-Leste that ill patients are routinely sent home from hospital. The assumption was that the care until the patient’s death would be provided by the family. It follows from those facts that there are significant unmet needs of symptom control and care of the dying. Difficult or agonizing deaths will have a profound effect on the

12 bereavement of the family and will impact on the way the surviving members of the family view death.

One of our observations is that pain management is not a major priority in Timor-Leste. That pain is acute and chronic, non-malignant and malignant in origin. Using conservative estimates of the prevalence of malignancy there is significant unmet pain needs in the country. The provision of Palliative Care would bring pain management into a more central position.

Without Palliative Care, the care of the dying shall essentially remain a matter for families and the level and capacity of that care will vary considerably. With Palliative Care (or at least a palliative approach) the needs of individual patients and their families will be addressed in a more systematic way. Small improvements in understanding a capacity may have a profound impact.

The way forward

In late July we reported our findings and recommendations to the funders of the visit – the Little Company of Mary. We have received a positive response. In general terms, our recommendations to the LCM and, eventually to the Ministry of Health in East Timor, will be based on WHO guidelines on the initiation of Palliative Care services in low-resource nations. The critical elements of those guidelines include :

1. The express inclusion of Palliative Care in National Health policy. 2. The introduction of accessible Essential Medications in Palliative Care. An authoritative list has been published by the International Association of Hospice and Palliative Care (IAHPC). Clearly the critical missing medication in East Timor is oral morphine. 3. Education - the introduction of Palliative Care as part of undergraduate and post graduate education for health professionals.

Once East Timorese health professionals are working in Palliative Care the role of mentoring that person(s) from Australia will, we feel, be a critical. That may involve both that professional coming to Australia on an observership and/or Australian Palliative Care health professionals spending short periods in East Timor mentoring that health professional. We will follow up this article with news on how this process unfolds. If any readers are further interested please contact us.

Joan Ryan [email protected] Frank Brennan [email protected]

“Healthy East Timorese people in a healthy East Timor”

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