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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
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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 AsiaPacific 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]
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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]
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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.
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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
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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)
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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 7 th 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
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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 of difference in the management of
patients.
Team discussion led by Dr. Odette Spruyt,
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
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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 6 th 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
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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
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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
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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
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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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