BERITA HOSPIS - Hospis Malaysia

2ND ISSUE 2013
KDN: PP8369/10/2012(031405)
BERITA HOSPIS
Can Anyone Do Palliative Care?
In 1992, Michael Kearney, a renowned palliative care
physician wrote an interesting article in Palliative
Medicine journal, entitled ‘palliative medicine – just
another specialty’. It is an interesting discussion
on the progress on palliative care in dealing with
the many symptoms that may affect patients and
families in dealing with life limiting illnesses.
Many young doctors are fascinated on how diseases
affect patients. Engage in conversation with them
and they will enthuse about the symptoms that affect
patients and what investigations will be needed to
confirm the diagnosis and the treatment to follow.
The young ones are bought in by the romantic
notion of medicine and do seem to want to care.
A focus on dealing with aspects of pain, breathing
difficulties, weakness, confusion, issues around
eating, drinking, passing motions and many other
physical symptoms fuels the interest in dealing with
such patients. Alleviating such symptoms hopefully
A healthcare education system that focus mainly on
knowledge acquisition, careers motivated often by
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CONTENTS
Can Anyone Do Palliative Care?
1-2
Your Child Is In Pain
3-4
Restoring The Spirit At The End Of Life
5
Hospis Malaysia Inaugural Charity Golf
Tournament
6-7
Education And Training Past Events
Upcoming Events
8
9-10
11-12
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... continued on page 2
BERITA HOSPIS
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2ND ISSUE 2013
2ND ISSUE 2013
Editorial
will enable the patient to have as good a quality of
life as can be had in their remaining days.
Yet despite the obvious need for the relief of physical
suffering, perhaps an over reaching desire for
patients is to be treated with compassion and dignity.
Illness brings not just physical suffering but social,
psychological and spiritual or existential issues. A
patient may say, ‘I am in pain but I am not suffering’
or ‘I am not in pain but I am suffering’. Unfortunately
medicine by itself does not have suitable answers
for many such issues and it requires a much deeper
understanding of the impact of an illness on the
human psyche.
In dealing with patients where illness now threatens
the sanctity of life, the palliative care doctor requires
an ability to not just understand the behaviour of
such a challenging illness but an ability to connect
with the humanity of the patient in order to begin
to affect a change for the better. Unfortunately in
many cases, there is a limitation in the effect of
drugs and the various high tech tools of the day in
dealing perhaps with issues such as a search for
the meaning in life, a loss of purpose, a feeling of
loneliness, regrets of a past life and many others.
As palliative care is slowly achieving a semblance
of public acceptability, the discussions that should
follow is whether any healthcare professional could
be trained to have the required knowledge, skills and
attitude to be able to provide a competent service?
And herein lies the dilemma.
Editorial
A healthcare education system that focus mainly on
knowledge acquisition, careers motivated often by
financial or parental choices and a community that
rarely enquires about the care they receive may not
be the best recipe in improving our palliative care
services.
In recent years, we have struggled in engaging
doctors with the required attitudes. It is all very well
for every doctor to say that they care, but to be able
to describe care and compassion, to understand the
advantages and limitations of modern medicine,
to know that how you communicate and that your
mere presence and willingness to simply be there
does make a difference when all else fails, has
been a challenging experience in conducting our
educational activities. The inculcation of good
attitudes cannot be done only within the parameters
of a teaching institution. Students learn from their
upbringing, their community and their peers.
Paediatric Palliative Care
Your child is in pain
14year old ‘Fahmi’ has relapsed leukaemia and as a result of that, for the past week he has had a lot of pain
in his legs and arms. He has refused to walk and preferred to lie on a mattress on the floor in front of the
television. He had grown sullen and quiet. He had previously looked forward to trips to the hospital, even
when it took him and his mother 2 hours by public transport to get there. He enjoyed meeting his friends at
the Oncology Daycare each week.
Pain has been defined as an “unpleasant sensory and emotional experience associated with actual or potential
tissue damage or described in terms of such damage”1 Pain is a treatable symptom and if left unattended can
interfere with activities, mood and sleep, cause tiredness and a sense of helplessness. Quality of life of the
child and their family is compromised when pain is left uncontrolled.
There are many myths regarding pain experienced by babies, children
and adolescents. Some of which are:
•
Palliative Care has been accepted as a medical
subspecialty in Malaysia. It is hoped that this will
result in better doctors with the ‘right’ knowledge,
skills and attitudes. We are most frail at the edges
of life. Failure to nurture the best in our profession
will compromise patients when they perhaps really
deserve a caring and compassionate environment.
For this to happen, patients and families need to
engage healthcare providers, educators and decision
makers so that their concerns are heard. We will all
need palliative care at some point in our lives.
This article was written and contributed by;
Dr. Ednin Hamzah
CEO and Medical Director
Hospis Malaysia
Truth: There is physiological evidence (eg. increased heart rate and blood
pressure) that infants and children experience pain but they may not be
able to describe it as well as adults.2 There are functioning pain pathways
even before they are born.3
• Myth: "Young children cannot indicate where pain is located"
Truth: There are body charts and communication tools for even a 3 year old to indicate intensity of pain and a
4year old to demonstrate where pain is.4 We just need to use the right method to elicit pain from a child.
•
HOSPIS MALAYSIA (223675-X)
2 Jalan 4/96
Off Jalan Sekuci
Taman Sri Bahtera
Jalan Cheras
56100 Kuala Lumpur
Tel
: (03) 9133 3936
Fax
: (03) 9133 3941
E-mail :[email protected]
Website:www.hospismalaysia.org
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Chairman
Brig. Gen. (Retired) Dato' Richard Robless
Secretary
Datin Kathleen Yeoh
Treasurer
Ms. Fairly Yap Swee Eng
Members
Mr. James Armand Menezes
Tan Sri Lim Leong Seng
Dr. Ednin Hamzah
Myth: "Children will tell you if they are in pain"
Truth: Children may not always verbalise their pain. If they had uncontrolled persistent pain, they may learn
to cope by withdrawing and being quiet and still. Children may also not complain about their pain to avoid
upsetting their family.
•
Council Members
Myth: “Babies and children do not experience pain”
Myth: "Children who tell you they are in pain but don't appear to be, don't need medication"
Truth: Children can often adapt to the persistent pain, distract themselves by watching television or play
quietly by themselves. We can’t rely only on what children verbalise to treat their pain.
•
Myth: "Children do not remember pain experienced. Children become accustomed to pain or painful procedures"
Truth: If a child has repeated painful procedures, he/she will have increasing anxiety and a heightened
perception of pain. Behavioural changes has also been reported in children after surgery when pain was not
controlled.4
Dr. Azlina Firzah Abdul Aziz
Advisor
Dato’ Dr. Sir Peter Mooney
... continued on page 4
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2ND ISSUE 2013
2ND ISSUE 2013
Editorial
Editorial
Paediatric Palliative Care
Restoring The Spirit At The End Of Life
Your child is in pain
•
Myth: "Sleeping children cannot be in pain"
Truth: Children can be exhausted from persistent pain and sleep.
•
For thousands of years, traditional medical practitioners
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have believed that music can be a significant therapeutic
Myth: "Health professionals are best at telling if a child is in pain"
intervention that can improve the quality of life for
Truth: A study of children with cancer found that their parents were more likely than
doctors to report of the pain experienced by their child.6 Parents report of pain of their
children need to be taken seriously.
patients with various health care needs. The harp, is an
example of an ancient instrument that has proven to
be able to accelerate the healing process. From ancient
There are many reasons children receiving palliative care could be in pain. Some of
them are acute, due to procedures or surgery, mucositis after chemotherapy or infections (skin, ear, throat).
They may also have pain that last longer resulting from their underlying illness; muscles and joint pains,
spasms or contractures, enlarged liver or spleen, pressure area sores, headache, tumour or bone pain.
hillsides to concert halls, through its contemporary
journey into hospital rooms and hospice centres, the
harp has established itself today to be known as the
medicine of the future. It is the focus of growing interest
Doctors and nurses have many varied tools to assess pain according to children’s age and development.
For babies and young children, we can get cues from their behavior. Facial expressions, vocalisations or cry,
in the power of music to capture the hearts and souls of those who need relief, hope and enlightenment.
posture, response to touch and activity can indicate their level of pain.8 The ‘Wong-Baker Faces Scale’9 allows
the child to indicate which of 6 ‘faces with expressions’ most represent them at assessment to monitor the
Realising the harp’s potential to enhance the quality of life of the sick, Kate Yeoh translated her 20 year old love
severity of their pain. Children and adolescents can also give a number along a scale of 0 to 10 to rate their
for playing the harp and moved on to specialise in Harp Therapy. She desired to use her musical skills to benefit
pain.
members of the community whose lives could be made better through harp therapy. “The harp,” she believes,
In addressing pain in the palliative care population, the assessment of physical pain is not the only aspect to
“is an instrument that can bring peace and harmony”.
be considered. We also need to explore what the child understands about their pain?, how do they think the
pain relates to their disease?, are they afraid of the pain?, are they afraid of the pain in the future? and how
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do they cope?. We need to help them alleviate their pain and also help the child and family cope with their
illness. Building a trusting relationship with the child and family and understanding their goals is fundamental
to good palliative care.
As a therapist, Kate uses the harp to create a conducive environment to reduce the anxiety and discomfort
of individuals. Research has proven that calming music not only relives fear but helps elevate oxygen levels
contributing to pain reduction. Individuals also benefit from increased relaxation, improvement in sleep,
stabilization of vital signs and improvement in mood. As end-of-life music vigil, a harp therapist can help
References
1.International Association for the Study of Pain. www.iasp-pain.org
2.Yaster M and Nichols DG. 2001 Indian J Pediatr;68(8):749-769
3.Anand KJS and Hickey PR. NEJM 1987;317:1321-9
4.Goldman A, Hain R and Liben S.(eds) Oxford Textbook of Palliative Care for Children. 2nded. pg192-203
5.Power NM et al. Arch Dis Child 2012;97:879-884
6.Hawley D.Pediatr Nursing 1984;10(1):20-23
7.Wolfe J et al. NEJM 2000;342:326-33
8.Merkel S et al. Pediatr Nurse 1997; 23(3):293-297 FLACC
9.http://www.wongbakerfaces.org
create a peaceful transition by providing a Cradle of Sound to an individual, based on their resonance musical
preference and situation.
Kate can be seen plucking the strings of her harmonious instrument during day care sessions for our patients
as a volunteer. She will tell you that there is no greater joy than to play to help another deal with stress, pain
or illnesses.
This article was written and contributed by
Dr. Chong Lee Ai
Palliative Care Physician
Hospis Malaysia
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2ND ISSUE 2013
2ND ISSUE 2013
Fundraising & Awareness (Past Events)
Fundraising & Awareness (Past Events)
Hospis Malaysia Inaugural Charity Golf
Tournament 2013
When tee-off commenced on the afternoon of
14th April 2013, the group of enthusiastic golfers
participating in Hospis Malaysia’s inaugural charity
golf tournament had the satisfaction of knowing that
they were swinging for a good cause.
Held at The Mines Resort & Golf Club, the venue
provided the ideal backdrop as the golfers
fellowshipped and competed with one another in
the longest drive, closest to the pin and hole in one
challenges.
Despite the scorching heat, the event witnessed
the participation of a healthy number golfers. The
participating golfers comprised of golf enthusiasts
from corporate sponsors as well as private
individuals. They displayed the spirit of true
sportsmanship for a solid 4 hours on the greens.
Hundreds of patients from Hospis Malaysia will
Hospis Malaysia Inaugural Charity Golf Tournament 2013 (Cont'd)
benefit as a result of their solid commitment towards
professional palliative care.
The tournament was then followed by dinner and
a prize giving ceremony. During his speech, Dato’
Richard Robless, Chairman of Hospis Malaysia
acknowledged the overwhelming and spontaneous
support extended by various corporate groups and
individuals to make this a successful event. He also
mentioned that, ‘he was looking forward to the
possibility of making this an annual fundraising
event in the future’.
The winners of the tournament took home a
variety of exciting prizes including vouchers for
golf merchandizes and a luxury holiday getaway.
Hospis Malaysia would like to thank all our generous
sponsors and golf participants for their contribution
towards making this event a success.
Participants socializing over lunch before tee-off
Prize presentation to the tournament champions and lucky draw winners
Participants swinging for charity
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2ND ISSUE 2013
2ND ISSUE 2013
Education & Training
Upcoming
Patients and Staff (Past Events)
Hospis Malaysia's Annual Dinner
Chinese New Year 2013 Celebration
Hospis Malaysia’s Annual Dinner took place on
the 26th February 2013. The dinner also marked
the farewell of one of Hospis Malaysia’s founding
Council Members, Dato’ Dr Peter Mooney. During
his speech, he recollected fond memories of
managing the operations of Hospis Malaysia from
his office at the Assunta Hospital KL. He continues
to serve Hospis Malaysia as an advisor.
Chinese New Year 2013 at Hospis Malaysia was
celebrated with the theme ‘An Old Fashioned Chinese
New Year’. All patients and volunteers came dressed
in their nines according to the theme. They dawned
their Chinese traditional costumes and indulged in
traditional Chinese cuisines. The day’s event was
then followed by game activities. The patients and
volunteers enjoyed the celebrations of the Year of
the Snake.
PC3 – Suffering & Hope: 23rd -25th August 2013
It is inevitable that despite the best of advanced medical interventions, most patients succumb to their
life-limiting illness. The burden of suffering may cause despair to patients and their families.
This 3-day workshop addresses how to deal with issues of suffering as many may not know how to give
hope when all curative treatment becomes futile. It is most suitable for doctors, senior clinicians, nurses,
psychologists, counsellors and especially those involved in making crucial decisions when the transitions
from cure, to prolonging survival and palliation becomes the aim of holistic patient-centred care.
PC 4 – Pain & Symptom Management: 5th-7th October 2013
Providing Quality-of-Life (QOL) for patients with life-limiting illness and their families is one of the
objectives of palliative care. This 3-day workshop deals with aspects of both pharmacological and
psychological issues on pain and symptom management so that patients with life-limiting illness are
given the opportunity to live out their days with meaning and with as little distress as possible.
Thus, successful pain control requires a multidisciplinary approach to treatment that addresses all aspects
of care and suffering. As usual, our workshop concentrates on small group settings and will be most
beneficial to healthcare providers working in a palliative or oncology setting and other related specialty
with a general interest in palliative care.
Registration forms can be obtained online at www.hospismalaysia.org > Training & Education. For further
enquiries, please contact Ms Yap Wai Mun at telephone number 03-91333936 extension 267.
Past Events
PC2 - Communication Skills Workshop :
30th – 31st March 2013
PC3 - Palliative Care Foundation Workshop :
25th - 28th May 2013
Good communication among physicians, patients
and their family or care-givers is the cornerstone of
providing appropriate palliative care for patients.
Very often, physicians are the ones that are expected
to lead and initiate communication. Patients are
entitled to be informed of their diagnosis and
prognosis. The way this information is conveyed is
important. Potential effectiveness (or ineffectiveness)
of therapies should also be explained. Patients need
to know how they feel and family members should
be kept informed of their treatment responses. Each
person has a significant role to play in delivering
effective palliative care.
Participants of the recently held Palliative Care
Foundation Workshop attended lectures on the
foundations for assessing and caring for patients
with palliative care needs. The workshop covered
areas such as Pain Assessment and Management,
Psychological Issues in Palliative Care and
Pharmacology in Palliative Care.
Participants were then given an opportunity to apply
their learnings practically when they were joined by
patients. They were able to role play a mock question
and answer session that
certainly helped the
participants understand
the concept of effective
communication better.
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The dinner event which was sponsored by Chinoz,
took place in Hospis Malaysia’s Day Care Room
was also followed by a lucky draw session where
Hospis Malaysia’s staff and volunteers were treated
to an array of gifts sponsored by various donors.
The evening ended after an endearing fellowship of
good food, great friendship and colleagues and of
course all in recognition of those working towards
a great cause.
HRH Sultanah of Johor, Raja Zarith Sofiah visit
to Hospis Malaysia
Nurses Day Celebration
Hospis Malaysia was honoured to receive a visit by
the Sultanah of Johor, D.Y.M.M Raja Zarith Sofiah
Binti Almarhum Sultan Idris Shah on the 18th April
2013. She was accompanied by her son Tunku Abdul
Jalil and singing sensation Datuk Siti Nurhaliza. Both
Tunku Jalil and Datuk Siti serenaded the patients
during their day care session with her greatest hit
songs. The patients were thoroughly entertained as
they joined in and sang along with her.
In conjunction with World Nurses Day, Hospis
Malaysia celebrated the commitment and dedication
of its nurses by organizing a dinner, courtesy of a
generous donor at Maju Junction Palace on the 25th
May 2013.
Participants were also given an opportunity to
experience patient home visits where they were
able to conduct real-life patient assessments. The
practical aspects of the workshop were an added
feature to the classroom lecture.
The celebrations included a karaoke session in
which the nurses and other friends of Hospis
Malaysia performed a selection of songs and duets
to entertain all present.
BERITA HOSPIS
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2ND ISSUE 2013
2ND ISSUE 2013
Fundraising & Awareness - Thank You
Fundraising & Awareness (Upcoming Events)
THANK YOU EVERYONE!
“Mr Monty’s Treat” available for sale
SHARP CSR Product Presentation
Conceptualized by Gail Featherstone, wife of
the British High Commisioner to Malaysia, this
book was inspired by the bedtime stories that her
husband H.E Simon Featherstone used to tell his
children when they were young. Gail Featherstone
collaborated with the very talented artist, Mollie
Jackson to produce this beautifully illustrated book
that will educate children on Malaysia’s exotic
treasures.
BOH Tea Party for Hospis Malaysia
SHARP Malaysia generously donated air purifiers
and electric fans to Hospis Malaysia as part of its CSR
Initiative. These donations would be used to ensure
a cleaner and more comfortable environment for our
patients.
In conjunction with the Duke and Duchess of
Cambridge’s visit to Malaysia, BOH Plantations Sdn
Bhd created a special Diamond Jubilee blend of tea
to commemorate the visit. Profits from the sale of
this special blend were donated to Hospis Malaysia.
Both Gail and Mollie have generously chosen Hospis
Malaysia to benefit from the sale of this book. All
the proceeds from the sale of ‘Mr Monty’s Treat’ in
Malaysia will be donated to Hospis Malaysia.
You can now purchase your own copy at RM25.
Please contact Hospis Malaysia at 03-91333936 for
a copy.
Nottingham University Malaysia
Habib Jewels – New Car to assist
Palliative Care
On the 7th April 2013, Nottingham University Malaysia
organized ‘The Nottingham Charity Run’ and elected
Hospis Malaysia as its official beneficiary.
A Book of Salads and Herbs of
Malaysia – ULAM
Yayasan Habib generously donated a brand new
Perodua Myvi. This car will be used by the medical
team to conduct their daily home visits and to
transport patients attending day care at Hospis
Malaysia.
Kwan Inn Teng Foundation
Wesak Day donation
In conjunction with Wesak Day celebrations, Kwan
Inn Teng Foundation made a donation towards
Hospis Malaysia for its general operational costs.
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As part of their CSR initiative, the Makok Group of
Companies generously donated a 100 copies of their
books to be sold to raise funds for Hospis Malaysia.
Natasha and Wen Li
Natasha Tan Hui Ying, 11 and Yau Wen Li, 10 made a
remarkable commitment to swim a distance of 6.5KM
in the open straits of Kuala Terrenganu all in bid to raise
funds for Hospis Malaysia.
Hospis Malaysia Charity Treasure Hunt 2013
Hospis Malaysia Charity Bazaar 2013
Hospis Malaysia’s most anticipated fundraising event
is back this year with the theme ‘The Sneaky Snake
Trail’. The hunt this year will begin in KL and continue
till Batu Ferringhi, Penang on the 27th-28th July. So
gather your teams and join this fun-filled event!
Hospis Malaysia’s exciting Charity Bazaar is set to take
place soon! Calling all volunteers, entrepreneurs and
sponsors to support this event. For more information
on booth bookings, sponsorship or volunteering
opportunities, please contact the PR Department at
03- 9133 3936.
Any sponsorships in kind for goodie bags and prizes
will be greatly appreciated. Kindly contact the PR
Department at 03-9133 3936 for more information.
BERITA HOSPIS
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2ND ISSUE 2013
Fundraising & Awareness (Upcoming Events)
Voices for HOSPICES 2013
Voices for Hospices 2013
World Hospice and Palliative Care Day takes place on the second Saturday of October every year and Voices for
Hospices takes place at the same time every two years. World Hospice and Palliative Care Day is a day when
hospice and palliative care is promoted and celebrated all over the world.
The theme for World Hospice and Palliative Care Day with Voices for Hospices 2013 will be 'Achieving Universal
Coverage of Palliative Care: Dispelling the Myths'
The aims of World Hospice and Palliative Care Day are:
• To share our vision to increase the availability of hospice and palliative care throughout the world by creating opportunities to speak out about the issues
• To raise awareness and understanding of the needs – medical, social, practical, spiritual – of people living with a life limiting illness and their families
• To raise funds to support and develop hospice and palliative care services around the world
This year, Hospis Malaysia ‘Voices for Hospices’ Charity Dinner will look at how palliative care fits the universal
health coverage agenda which is the current focus of many discussions at the national and global level.
In many countries, healthcare providers focus
mainly on the curative treatment of illnesses.
In our region NGOs and community healthcare
providers selectively concentrate on preventive
measures with little regard to those whose disease
is progressing and with little hope of cure.
They are neglected by the system and sent home
to families who are distraught about their loved
one’s condition and may not have skills to care
for them. Hence it is imperative that we continue
to demand palliative care to be included in the
universal coverage of health.
Scheduled for Sunday 20th October at the JW Marriott Kuala Lumpur, proceeds from the charity gala dinner
will help Hospis Malaysia to continue to support and develop hospice and palliative care services, to uphold
the dignity and quality of life of those affected by life-limiting illnesses.
To support us in our fundraising effort through Hospis Malaysia ‘Voices for Hospices’ Charity Dinner, please
contact the PR Department at 03-91333936 and speak with Kenneth or Abigail.
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