1st issue 2012 - Hospis Malaysia

1ST ISSUE 2012
KDN: PP8369/10/2012(031405)
BERITA HOSPIS
Qualifying for Palliative Care
At Hospis Malaysia, we receive numerous referrals
someone that is
for palliative care daily. Sometimes more than 10
recovering from a
patients are referred on a given day. At any time,
stroke? Could we
about 400 patients are under our care and the
come and change
number steadily increases each year. Some referrals
the urine catheter?
are timely and less urgent whilst others come with
Can we send a
a demand that someone sees their loved one as
nurse to look after
soon as possible.
a
patient
Could
be
daily?
help
In the early years of Hospis Malaysia, most of the
with counselling?
referrals came in very late, often when patients are
These and many
very close to death. Over the years as more doctors
other
and our community has understood that more
are asked to us
could be done if patients were seen earlier, these
daily!
questions
late-referrals have reduced to a smaller but still
significant level of our case load.
A reference point might well be to use the World
Health Organisation 2002 definition of palliative
Often though, we are asked about what kind of
care which is :
patients would we accept to be under the palliative
care services of Hospis Malaysia? Could we see
‘Palliative Care is an approach that improves the
quality of life of patients and their families facing
the problem associated with life-threatening illness,
CONTENTS
Qualifying for Palliative Care
through the prevention and relief of suffering
1-2
by means of early identification and impeccable
Life Before Death-From Campaign to Silver Screen
3
assessment and treatment of pain and other
Community Palliative Care - A Lesson From Kerala
4
problems, physical, psychosocial and spiritual’.
Gifts and Giving
5
Fund-Raising and Awareness Activities
Charity Treasure Hunt 2012
6-7
At Our Day Care
8
They Wanted to Go Shopping......
9
15 minute with...
10
Would You Like to Sponsor a Nurse?
11
Vocational Award from Rotary Club of Cheras
11
Hospis Malaysia Charity Bazaar 2012
12
It is certainly true that the early work of hospices
and palliative care services were based on dealing
with those in terminal illness. In many countries, this
was mainly confined to cancer patients. Gradually
though, the work of hospices and palliative care were
proven to be substantially useful to benefit those
at earlier stages of illness and also to those with
other diseases apart from cancer.
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1ST ISSUE 2012
... continued from page 1
The WHO definition does not specifically mention
social, psychological and spiritual effects. If the
either cancer or terminal disease, merely life
main treatment of the illness results in the cure of
threatening illness. Other terms often used to
the
describe palliative care patients are those with
Realistically though, the vast majority of patients
life limiting or progressive disease. These broad
referred to Hospis Malaysia have very advanced
descriptions
and serious illness where the possibility of curative
are
both
useful
and
sometimes
disease,
that
would
be
wonderful
news.
confusing to the public.
treatment is remote.
Generally though in practice, patients with diseases
If a doctor suggests a referral to Hospis Malaysia,
that may lead to a shortening of life such as cancers,
it may be idea to perhaps call us or check our website
organ failures, HIV / AIDS, degenerative neurological
(www.hospismalaysia.org) to see what could be
illness and several categories of childhood illness
done before rejecting the suggestion out of hand.
will fall in this category. A misnomer is also that
We may just be able to provide some assistance.
accepting a referral for palliative care means that a
patient can no longer have curative treatment. This
is wrong and dangerous. In some countries, patients
just diagnosed with cancer or other illness will have
a consult with a physician whose aim is curative but
at the same time. Many of the doctors that may refer
a patient to Hospis Malaysia or palliative care may
also be inaccurate as to their own understanding.
A simple way of understanding how palliative care
may help your loved one is that whilst the hospital
doctor may deal with the cancer, kidney failure,
heart failure etc, the palliative care team deals with
primarily with the effects of the illness. This is
usually the pain and physical effects, but also the
Council Members
Chairman
Brig. Gen. Dato' Richard Robless (Retired)
Secretary
Datin Kathleen Yeoh
Members
Dato’ Dr. Sir Peter Mooney
Mr. James Armand Menezes
Tan Sri Lim Leong Seng
Dr. Ednin Hamzah
Dr. Azlina Firzah Abdul Aziz
Ms. Fairly Yap Swee Eng
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
Find us on
Facebook
www.facebook.com/hospis-malaysia
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1ST ISSUE 2012
Life Before Death-From Campaign to Silver Screen
There
is
affliction
no
that
morphine, the fear of and its implications; taboos and
fears; pain and living; avoidance and consciousness.
affects as many
as death. It is
It also advertently captures the thoughts, time and
inevitable-but
pain of patients with life-limiting diseases. Heart
one
the
rendering accounts told in honest truth. Poetries and
question: “ How
songs are shared, so is fear, pain and disappointment.
then would you
Within the honest sharing of fear and vulnerability,
die?” The level
courage is starkly evident throughout. Few hearts
of palliative care
will remain unmoved by Bernard’s account from
in your country
suicidal to one who looks forward to every day.
may
asks
have
an
answer to that.
On the wake of this trail about life before death, is a
list of accolades including the `The Indie Fest, Best
Life
Before
Shorts Awards Winner, Accolade Competition Winner
in
and Prestige Award Winner. The score combines
Singapore 2006 and has progressed into a series of
many cultures that merges a variety of instruments
television documentary, 50 short films and a feature
including Sittha, Tabla, African Percussions and
film. Life Before Death was filmed travelling through
indigenous woodwind instrument. It mirrors the
eleven countries to document the efforts, hopes and
upbeat and serious tone of the movie.
Death
started
as
an
awareness
campaign
challenges of end-of-life care. It started as a bold
move to speak of what many chose to avoid and tens
The screening begins in Singapore and together
of thousands suffer for it and still do, around 600
with it, the Stop of The Pain campaign was launched
million approximately.
to help fund pain medicine to Pallium India as well as
train doctors and nurses in pain treatment.
Dr Jim Cleary, Pain Specialist in Australia spoke
of how a patient, so incapacitated by fear of pain,
For more information, check out www.lifebeforedeath.
requested for physician assisted suicide, “Dr Cleary,
com. Short films are also available on youtube, sadly
I am ready to die” he said. With the right information
they enjoy much less views than Justin Bieber but are
and a promise to reduce the pain when it does
certainly worth a watch.
happen, the patient went on to baptize two
grandchildren
and
was
relatively
pain
free
throughout the last phase of his life.
On the flip side, many physicians dealing with
advanced illnesses have little access to the pain
medication to manage severe pain. It is even feared
that pain and advanced illnesses becomes perceived
as acceptable or worse - synonymous.
The series also covers areas not widely spoken of like
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Community Palliative Care - A Lesson from Kerala
Given the choice, the vast majority of patients
into a model of excellence that has been recognised
would want to be cared for at home. Unfortunately,
and supported by the World Health Organisation.
many are unable to for various reasons. These
include a lack of confidence by the family in caring
Recently, one of the pioneers and Medical Director
for their loved one, a lack of medical and nursing
of the Institute of Palliative Medicine, Medical College,
support, a complexity of the medical condition that
Calicut, Dr Suresh Kumar visited Hospis Malaysia.
requires specialist institutionalised medical care
Dr Suresh gave a talk about the community
or simply that the family does not feel that care at
palliative care services in Kerala where the vast
home is appropriate.
majority of patients now receive palliative care
and that the whole community partakes in the
In many resource rich countries such as Australia
responsibility to provide care. This was a great
and the United Kingdom, community palliative care
insight to the audience of palliative care workers.
is regarded as an important element of healthcare
Why is it that healthcare workers, volunteers,
whilst in Malaysia, care is centred in hospitals and
corporate, the state and even the police all contribute
clinics. Families that require healthcare assistance
to a community based service whilst we in Malaysia
in the community have few resources and many
receive no government support.
that are able, resort to hiring private nursing care.
The
‘Malaysia
Boleh’
seems
to
have
Community palliative care has been cited as
disappeared recently in favour of another. Yet in
providing better quality than hospitals, is the
facing our own issues of the fragility of human life
preferred choice of patients and could be provided
and the possibility of illness in later years, what are
at a fraction of hospital based care. Such a
we willing to do to help ourselves? The community
vocation is yet to truly catch on in Malaysia but it
and the palliative care workers in Kerala offer a
is remarkable that not far away in Kerala, India, a
poignant reminder of what is possible.
model of community based care has developed
Dr Suresh Kumar giving a talk on community palliative care
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slogan
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1ST ISSUE 2012
Gifts and Giving
A story told by Sister Geraldine Tan, published in Asia Pacific Hospice Palliative Care Network (APHN) website
Coming to terms with death is a very personal act
that only the dying understands. In this, the last of
four in a series of articles on caregivers, we learn that
being accepted as caregivers is perhaps sometimes
a privilege given by the dying and not just a role we
take on out of guilt, duty, responsibility or love.
It is over. He stood and looked down at the thin
caricature of a once pretty, athletic woman, his wife.
Listening to the subdued sounds of her family’s grief
outside the room – he had asked to be alone with her
for a while – he finally cried.
He knew she had given him the gift of forgiveness.
Seven Months Ago They had been married for
nearly 12 years, separated for the last three years.
After nine years of marriage she suddenly left. She
wanted space and freedom, she said. He had let her
go. Their marriage had not been easy on both of
them. Social status cut a deep chasm between them.
She was a successful graduate. He was nobody but
a clerk – and 15 years older than she was. Her family
objected strongly to their relationship and the social
circles she belonged to caused him deep discomfort,
insecurity and inferiority. He had never managed to
blend in; he chose not to blend in.
This social stigma was worsened by the fact that he
was a house-husband, bringing their two sons up,
sons who saw little of their mother as she worked
long hours. It did not help that she was the sole
breadwinner on top of everything else. So when she
decided enough was enough, he had let her go. She
never came back.
And then he heard that she was sick.
Sister Geraldine:
We spoke. She was suffering from aggressive ovarian
cancer. He asked if he should see her. He wanted to
take her home to care for her. No matter the problems
with their relationships, he still loved her. He said,
“She chose me, when no one else would. This is
something I remain proud of.” I told him to ask her.
Her two sons
were
less
enthusiastic
– why return
when she was
dying and not
when she was
living. She had
never
been
close to them.
Their father had perhaps unwittingly created this gulf
between them, it was too late for that.
Still, home was home. It was a sanctuary. With
her family finally accepting him, they began to live
a relationship unencumbered by a heavy social
yoke. It was a time of sharing, understanding and
redemption.
Sister Geraldine:
She had a hard time. The pain was excruciating and
she could not hold it in any longer. At last she called
to him and asked to be forgiven and thanked him for
the short period of freedom he had given to her. She
said, “I have never forgotten that you were my first
love.”
He cared for her till she died.
In her dying and death, she had done what she could
not do when she was alive. She had brought them
together.
Reflections:
There is joy in giving and receiving. But gifts come
in many forms. The gift of forgiveness, to forgive and
to be forgiven, is priceless because it finally brings
together that which is separated.
Relationships are to be treasured always, no matter
how unusual or difficult they appear to be. We should
not discard them like unwanted or less useful gifts.
If the dying can strive to treasure relationships, the
living should do no less.
She agreed.
She had been living alone all this while. When her
illness claimed her and death loomed, she had
expected to die in a hospice. But when he came and
asked, she agreed. She told him she wanted closure,
and most of all forgiveness.
Sister Geraldine Tan
Administrator, St Joseph’s Home and Hospice,
Singapore
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Fund-Raising and Awareness Activities
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1ST ISSUE 2012
Fund-Raising and Awareness Activities
Post Event Release -
At the break of dawn on Saturday, 28 April 2012,
more than 200 hunters packed into 63 cars all ready
to participate in Hospis Malaysia’s 11th Annual Charity
Treasure Hunt. A combination of teams of husbands and
wives, fathers, sons and daughters, office colleagues, or
just good friends – a spectacle of great camaraderie!
Hunters, volunteers and the media were abuzz at the
flag-off in the car park of Tesco Extra Cheras. The
Chairman of Hospis Malaysia, YB Brig Gen Dato’
Richard Robless joined in the early morning festivities
to officiate the flag-off.
It was a serious affair for all. Armed with the latest GPS,
i-pads, and smartphones, the participants caught on to
the first clue very quickly, and off they went. A team
with 2 pairs of fathers and daughters evidenced a dad
driving, a daughter googling for clues on her trusted
smartphone, and another dad and daughter pointing in
opposite directions! Where should they turn?
The trail took the participants through a maze from the
flag-off point in Cheras, onto the Federal Highway in
KL, taxiing on the LDP, and on towards Melaka. Along
the way, tiles had to be collected, tissue boxes picked
up, specific brands of washing liquids uncovered, and
word puzzles solved. The heart of Melaka city didn’t
escape the onslaught of hunters, welcoming them in
their stunning black Tees. From 2pm, the lobby of The
Equatorial Hotel in the city started to see the trickling in
of the first teams. By 4pm, everyone had arrived safely,
awaiting the evening of celebrations and revelations.
And indeed it was one of such – as the hunters tugged
into a sumptuous local nonya buffet, the huntmaster
announced the answers.
This year Hospis Malaysia bonded with more new
partners - Feruni Ceramiche Sdn Bhd, joined as the Gold
Sponsor and Star Cruises as the Grand Prize sponsor.
And for the second consecutive year, Pestech Sdn Bhd
continued as the charitable organization’s “partner in
caring” as the event’s Main Sponsor. Loyal supporters
extended their contributions with cash and gifts to
ensure the success of the event.
The proceeds from the charity hunt is channeled
towards Hospis Malaysia’s continuous efforts to
provide professional palliative care services to patients
in the Klang Valley suffering from life limiting illnesses.
All the services provided by Hospis Malaysia is free of
charge. Each year, the organization relies entirely on
contributions from corporates and individuals in the
community to fund its approximately RM3.0 million
of expenses. These monies goes towards maintaining
a professional team of doctors and nurses to provide
the treatment and care, purchasing of medication
and medical equipment provided to its patients at no
charge, and the training and education of its medical
professionals. Alongside the services provided,
Hospis Malaysia continues to be a major advocate of
professional palliative care in the country.
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At Our Day Care
Festivities at Day Care
Gingerbread, anyone?
The patient’s husband was very impressed
with his wife’s makeover that he too
snapped a few shots!
Hospis Malaysia’s day care is always filled with
smiles, laughter and festivities.
It ended 2011 with a blast in celebration of
Christmas. Volunteers worked tirelessly and
meticulously to turn the place into a Christmas
wonderland with lights, trees and ornaments.
Violinist and dancers gave the place the perfect
spirit with their performances but nothing beats
the volunteers’ heart-warming rendition of
Christmas carols with a twist. As can be expected
of Hospis Malaysia’s volunteers, they had to
make it better with twists in the lyrics and playful
touch of their rendition. They had the crowd of
30 over patients in stitches with their humour
and joie de vivre.
December babies were also celebrated that day
and all in all, it was another wonderful day at
the day care. The party goers soon had another
celebration...
They painted the place red with ang pows,
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auspicious decors and paper cut dragons. The
highlight of the day was the make-over sessions
with patients of Hospis Malaysia. They delighted
in their new look and the attention and had it
all captured on photos. The glamorous bunch
proceeded to toss the signature yee sang, indulged
in the Chinese New Year feasts, had sweet tong
yuen (glutinous rice ball) to mark a sweet day
and love letters before ending it with a sing-a-long
song and dance session.
Hospis Malaysia’s day care is always filled with
activities, laughter and joy; there is no denying
the army of volunteers are behind this. Hospis
Malaysia is extremely thankful for the support
of its volunteers.
We would like to extend our gratitude to New Look
Studio for providing the complimentary make over
for the patients.
To volunteer, please contact Wai Mun
03-91333936 or [email protected]
at
1ST ISSUE 2012
They Wanted to Go Shopping……
This was the wish of many at our day care, when
ticket, with one hand steering the wheel chair.
asked earlier in the year what they would like to do if
we took them out. Once every quarter, we take our
We took our patients to KLCC, and then to Aquaria
day care patients offsite for an excursion.
– courtesy of Mayflower, the bus company which
provided the transport, some friends of Hospis
Shopping - an activity perhaps most of us take for
Malaysia who paid for the subsidized tickets to
granted. Some may even view it as a chore. But not
Aquaria, and a complementary lunch at Dome. All
for many of those we care for…..
this made possible by our team of volunteers, and
staff, who ensured that all aspects of each patient’s
They come to our centre on one of the two day care
needs was catered for, and their wishes fulfilled
days we run each week for some respite. Many
through the day. It could be a day out also for the
remain at home on most other days as their carers
patients’ carers if they chose to join in the day of fun,
are at work or simply too busy, or do not have the
or he/she could choose to take some much needed
resource to take them out.
time off for him/herself.
Imagine taking the public transport with a wheelchair bound loved one, perhaps worrying about
whether she may have a seizure, as often is the case
when exposed to the noon heat and bright sunshine
perhaps…At the destination, the carer meanders his
way through the crowd, waiting in the queue for a
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15 minutes with…
Lyla Roberts, Volunteer
Lyla has been volunteering in Hospis Malaysia for three and a half years. Currently, Lyla is
working part-time at the University of Malaya teaching English to post-graduate students
from foreign countries.
How did you get into
Hospis Malaysia?
I first heard about Hospis
in 1991. My late husband
had been diagnosed with
Nasopharyngeal Carcinoma
(NPC) and we were in the
midst of coping with his
treatment. He had been through radiotherapy and had
started on chemotherapy and there were so many
doubts, fears and myths surrounding cancer. There
was no one really to turn to. We learnt of symptoms,
reactions, needs, support and every little detail the hard
way, practically on our own.
Palliative care was at its inception stage. About the same
time I began to read about NPC and Hospis Malaysia
in the newspapers. So really I was not aware of Hospis
Malaysia until I was at the deep end. I made a silent
promise to myself that when my husband recovered,
I would devote some time in service to families and
patients in the same predicament as I was in those dark
and frightening days. After my husband’s death in 1996,
I wanted to join Hospis right away. But work and family
commitments made it almost impossible. Only after
retirement in December 2007 have I been able to fulfil
this promise I made to myself way back in 1991.
Why choose to volunteer in Hospis Malaysia?
Hospis is close to my heart because it deals with palliative
care – care for the patients, their families and caregivers.
I have been through the mill and I want to be of help to
those in the same state that I was in 20 years ago.
Describe your day as a volunteer in Hospis Malaysia.
I used to provide transport to patients but have not been
doing so regularly in the last few months. I volunteer on
Thursdays and the day is spent attending to the patients
and their needs. The help ranges from serving food
and drinks, accompanying them wherever they want
to go around the day-care premises, assisting at the
physiotherapy, qigong and foot massage sessions and
playing games like Rummy-O with patients. Sometimes I
bake things for tea – bingka ubi, muffins, cream puffs etc.
I used to ‘fight’ to do the dishes after lunch but since the
installation of the dishwasher, I have been ‘deprived’ of
this job. Of course there is also a wonderful camaraderie
amongst volunteers which is so therapeutic all in all.
What do you enjoy most about being a volunteer?
For one day a week, I try to immerse myself in the
patients’ lives. I enjoy simply listening to patients and
sharing my life with them and vice versa. There is so
much to learn from them – I feel that I receive more than
I give. It’s such an enriching experience.
What is your most memorable moment?
There is one moment when I can say this was it. Every
minute spent at Hospis is a privilege and honour for
me. There are memorable moments almost every day.
When patients or their families show stoic strength I feel
affirmed in the human spirit. Those are my moments.
What are the challenges you face as a volunteer?
My challenges are not formidable. There are times when
you see the patients being ravaged by the disease – the
pain, suffering and unfairness of it all. But as I have said,
the patients’ strength is a constant reminder that not
all is lost. As long as there’s breath, there’s life, there’s
hope. As long as one is clear about wanting to serve, no
challenge is a big challenge.
How do you spend your day, when you are not
volunteering?
I have a busy schedule despite being a retiree. I teach
twice a week, I write English language workbooks, read,
supervise teacher trainees, I do yoga once a week, walk
for exercise three times a week, run errands for my 80
year-old Mum and generally catch up with friends and
ex-colleagues. My days are usually brimming over with
activities. My children are all adults and away from
home, so I can spare the time.
Lyla in one of the Bingo session
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Would You Like to Sponsor a Nurse?
At Hospis Malaysia, our nurses are the front line
people for our patients. Upon a referral by a doctor,
and confirmation of acceptance of the individual as
a patient of HM, our nurses will contact the patient or
his/her carer within 48 hours to discuss the condition
of the patient, and to arrange for a visit to the patient.
During the visit, the nurse assesses the patient in detail,
conducts a thorough examination, and provides advice
and treatment accordingly. Such assessments involve all
aspects of the patient’s medical state; and the patient’s
and family members’ psychosocial as well as emotional
condition. The approach is holistic.
The nurse will discuss each patient’s assessment and
needs with our doctors regularly. She will plan further
visits and treatment, and such visits and treatment is
reassessed each time she has contact with the patient
and/or carer – this may be through the phone or a visit.
A large part of each visit and its ensuing assessment will
involve feedback from the patient or his/her carer (often a
family member) – hence communication with the patient
and family members is paramount in the course of such
contacts.
Hospis Malaysia also runs a 24-hour patient care service.
Each of our nurses rotate to provide this 24 hour oncall service. Should a doctor’s assistance be required,
the nurse on-call will ensure this is forthcoming.
Nurses joining Hospis Malaysia necessarily have to
undergo extensive in-house training – in theory and
practise. There are 6 workshops run in HM which
are compulsory for all nurses to attend to obtain the
appropriate accreditation for palliative care, and in
addition to this, our nurses undergo shadow training
with their seniors by accompanying them on home
visits, until such time as they are ready to begin patient
contact on their own. This can take up to 6 months.
What does the sponsorship involve?
• A sponsorship for a palliative care specialist nurse
averages RM60,000 per year. This can be pledged as a
monthly, quarterly or annual disbursement. We prefer
that the commitment be for a minimum of 1 year.
• Regular reports on the nurse sponsored can be
forthcoming if required.
• Please contact our General Manager, Tham Su Ming
on 03-9133 3936 to discuss your interest.
Vocational Award from Rotary Club of Cheras
In March, Sister Gnanamani (fondly known as “Sis Mani”) was
chosen to receive the Rotary Club of Cheras’ 2011-2012 Vocational
Award. This is an award presented annually by the club to a
deserving individual in the area of vocational services.
Sis Mani joined Hospis Malaysia in 1996, and has been with us from
the early beginnings. Throughout her time with Hospis Malaysia,
she has and continues to provide nursing care to our patients with
complete dedication and compassion. She is a role model to the
younger members of the nursing team in Hospis, as she epitomizes
the very essence of nursing care.
Congratulations Sis Mani!
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Hospis Malaysia Charity Bazaar 2012
This year, we expect the bazaar to attract more than 50 booths, selling a variety of items ranging from delicious food &
beverages, to clothes, jewelry and books. There will also be lots of fun-filled activities such as face & henna painting, line
dancing and jewelry making.
Hospis Malaysia will also be setting up a Jumble Sale stall for pre-loved items. As such we welcome any contribution of
2nd-hand books, home appliances and decorative items which are in good condition for the stall.
Should you be interested in setting up a stall, please contact Carol at our PR department on 03-9133 3936 or email us on
[email protected].
We also welcome any contribution of food or retail items which our team of volunteers can sell, proceeds of which will
go towards our fund-raising.
Coupons will be available at the bazaar. You may also purchase coupons directly from Hospis Malaysia from June 1st
2012. Please contact our PR department to arrange purchase.
Come together with family and friends to the Hospis Malaysia Charity Bazaar. Come and have fun and support a noble cause!
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