REACHING OUT TO THE NEGLECTED CAREGIVER - The course of respite A father's 27-year caregiving journey - Singapore Hospice Council
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MARCH – MAY 2019 • MCI (P) 108/12/2018
The course of respite
A father’s 27-year
caregiving journey
REACHING OUT TO THE
NEGLECTED CAREGIVER
PLUS
Views from
the pros
1
T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9
CHIEF EXECUTIVE’S NOTE
Members’ Contact
Assisi Hospice
832 Thomson Road, S(574627) T: 6832 2650 F: 6253 5312
www.assisihospice.org.sg assisi@assisihospice.org.sg
Contents Supporting caregivers
Bright Vision Hospital
A
5 Lorong Napiri, S(547530) T: 6248 5755 F: 6881 3872 n elderly man once shared that
www.bvh.org.sg enquiries@bvh.org.sg his wife has been suffering from
Dover Park Hospice dementia for many years and how
10 Jalan Tan Tock Seng, S(308436) T: 6500 7272 F: 6254 7650 he, as her sole caregiver, wished
www.doverpark.org.sg info@doverpark.org.sg that he could swap places with her. When I asked
what he meant, he went on to say, “All my wife
6
HCA Hospice Care
705 Serangoon Road, Block A #03-01 @Kwong Wai Shiu does is eat and sleep whereas I have to care for
Hospital, S(328127) T: 6251 2561 F: 6291 1076 her day and night.” It dawned on me just how
www.hca.org.sg contactus@hcahospicecare.org.sg many caregivers in Singapore are like this elderly
man – lonely, fatigued and weighed down
Metta Hospice Care
32 Simei Street 1, Metta Building, S(529950) by negativity.
T: 6580 4695 F: 6787 7542 It is estimated that there are approximately
www.metta.org.sg hhospice@metta.org.sg 210,000 caregivers in Singapore caring for seniors,
children with special needs, the disabled, and the
MWS Home Hospice
2 Kallang Avenue, CT Hub #08-14, S(339407) mentally and terminally ill (The Straits Times, 27
T: 6435 0270 F: 6435 0274 www.mws.sg MWShh@mws.sg September 2013). The number is likely to have
increased, given that Singapore is experiencing
Singapore Cancer Society 2 Members’ Contact an ageing population with elderly persons aged
15 Enggor Street, #04-01, Realty Centre, S(079716)
T: 6221 9578 F: 6221 9575 65 years and above who require support and
www.singaporecancersociety.org.sg 3 Chief Executive’s Note care. Caregiving can be stressful. However,
hospice@singaporecancersociety.org.sg we hope that the burden of caregiving can be
4 Reaching out to the mitigated through caregiver education, support
St Andrew’s Community Hospital
8 Simei Street 3, S(529895) T: 6586 1000 F: 6586 1100 neglected caregiver and enablement.
www.sach.org.sg general@sach.org.sg In this issue, you will find compelling stories
6 A father’s 27-year about caregivers’ experiences, the various
St Joseph’s Home
36 Jurong West St 24, S(648141) T: 6268 0482 F: 6268 4787 caregiving journey programmes and support available as well as
www.stjh.org.sg general@stjh.org.sg caregiving tips. We will be organising a two-
8 The course of respite day “Live Well. Leave Well.” community event at
St Luke’s Hospital Westgate (shopping mall in Jurong Eastl) on 11
2 Bukit Batok Street 11, S(659674) T: 6895 3216 F: 6561 3625
www.slh.org.sg referral@stluke.org.sg 10 Caring for caregivers – and 12 May 2019 to reach out to caregivers and
a physiotherapist’s view the elderly. Come on down, bring your family and
Changi General Hospital friends, and spend the weekend with us. There
2 Simei Street 3, S(529889)
T: 6788 8833 F: 6788 0933 www.cgh.com.sg 11 Empowering caregivers will be various booths set up to spread awareness
about the service care and support available and
through training and more
Khoo Teck Puat Hospital provided by our community partners, educational
90 Yishun Central, S(768828) talks by subject experts, entertainment, goodies
12 Gearing up for the final stretch
We hope that
T: 6555 8000 F: 6602 3700 www.ktph.com.sg
and more.
So, do mark your calendars and “like” our
KK Women’s and Children’s Hospital
100 Bukit Timah Road, S(229899)
14 Views from the Pros
Facebook page to get the latest updates.
T: 6394 8008 F: 6291 7923 www.kkh.com.sg
Ng Teng Fong General Hospital
15 Tips for Caregivers the burden of See you in May!
16 Upcoming Events &
caregiving can
1 Jurong East Street 21, S(609606)
T: 6716 2000 F: 6716 5500 Ms Yeo Tan Tan
www.ntfgh.com.sg enquiries@juronghealth.com.sg Announcements Chief Executive
Singapore Hospice Council
National Cancer Centre Singapore
11 Hospital Drive, S(169610)
T: 6436 8183 F: 6220 7490 www.nccs.com.sg
be mitigated
Tan Tock Seng Hospital
11 Jalan Tan Tock Seng, S(308433)
through caregiver
education, support
T: 6359 6477 F: 6359 6294 www.ttsh.com.sg
Lien Centre for Palliative Care
Duke-NUS Medical School Singapore
8 College Road Level 4, S(169857)
T: 6516 4233 www.duke-nus.edu.sg/lcpc and enablement.
2 3
T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9 T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9
CAREGIVING OUTREACH
Below and opposite
page: With support
from their social
network, caregivers
will be able to
continue their work
It is common for
caregivers to put
their physical,
emotional
and social
needs aside so
Reaching out to the that they can
continue to
neglected caregiver meet the needs
Caregivers also need support as they face upheaval in
of their loved
their lives. Compassion and practical help will go a long ones with cancer. SIGNS AND SYMPTOMS OF A CAREGIVER
way towards easing their burden.
WHO MAY BE NEGLECTED:
WORDS AMANDA TAY, SENIOR SOCIAL WORKER, PSYCHO SOCIAL SERVICES,
• Feeling overwhelmed and inadequate in caregiving
SINGAPORE CANCER SOCIETY PHOTOS SINGAPORE CANCER SOCIETY • Having no personal time and social interactions
I
t is almost inherently As those with cancer face longer seem to be the spouse or The Singapore Cancer Society • Deterioration of mental and physical health
human to feel multiple losses and grief, and offspring they knew before. (SCS) Home Hospice team of • Feeling like one is indispensable in providing care
compassion for a adjustments to a different It is common for caregivers medical professionals and social
person diagnosed with life routine, so do caregivers. to put their physical, emotional workers provide counselling SUGGESTIONS TO REACH OUT TO
cancer. Yet, compassion towards the Caregivers may face losses such and social needs aside so that services and explore caregiving CAREGIVERS:
patients’ caregivers may not come as loss of job, relationships, and they can continue to meet the options that take into account • Start conversations with caregivers on issues that they are
as naturally. having to learn to adjust to new needs of their loved ones with the needs and resources of most concerned with
With each cancer diagnosis, there caregiving routines and skills. cancer. As such, caregivers may patients and caregivers. Some • Provide a listening ear and a nonjudgmental attitude
is a systemic impact on the person They also deal with more profound also be less open to getting case-by-case options include towards caregivers to share their struggles and anxieties
with cancer and those in that losses such as the changes to support for themselves. Yet being involving home personal care • Give permission to caregivers to have respite and to
person’s social network. In addition their loved one’s personality and human, their needs are no less nurses and interim care services participate in activities they enjoy
to the one with cancer, the impact is involvement in their lives due to important. Hence, it is crucial to provide respite care for • Provide practical support such as helping with errands,
felt most deeply by the caregivers. cancer progression. For example, a for members in their social caregivers. Medical escort and medical appointments or medication collection
Yet, caregivers’ needs tend to be caregiver may have to learn how networks to develop compassion transport services for hospital • Engage social services that can provide respite care and
overlooked, as the needs of the to accept and relate to their loved for them and to make the effort appointments are also explored. counseling for caregivers
patients are usually more visible one who is more easily irritable to reach out to them in ways SCS also provides caregiver
and immediate. or depressed and who may no that they perceive as supportive. support training periodically.
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T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9 T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9
CAREGIVING JOURNEY
A father’s 27-year Harold wanted to
caregiving journey
celebrate his 32nd
birthday with family
To Mr Phillip Tan, caring for his son, Harold, was a bittersweet experience filled and friends who were
with much love and faith, despite the many challenges.
important to him.
F
or 27 years, 66-year-old Mr Phillip Tan him from choking. Harold was also at high risk
was the sole caregiver for his only of bleeding from his gums and tongue; his father
son, Harold. Harold was diagnosed would gently clean the insides of his mouth after
with Williams Syndrome at five years eating, to remove all food residue to prevent Tan was no longer working and was devoting all
old and passed away at 32 years old. In recognition infection or potential bleeding. his time to caring for Harold, he did not have a
of his dedication as an exemplary caregiver to When Harold had bleeding episodes, which could social life besides his family.
Harold, Mr Tan received the Healthcare Humanity possibly be fatal, his father would reassure him. To Mr Tan, the greatest challenges were the
Awards 2018 under the Caregiver category. Mr Tan also carried Harold wherever he needed unpredictability of Harold’s symptoms as well as
Williams Syndrome is a developmental disorder to go, including visiting the hospital twice a week his eventual mortality. He said, “Everything was
that affects many parts of the body. Due to his for his life-sustaining dialysis. As there was limited too hard for me to understand and bear; I grew
condition, Harold had mild intellectual disability, support from other family members, Mr Tan had tired and became fearful.” His religion gave him
developmental and physical issues like stunted to manage the housework in addition to caring for strength. He said, “Harold and I put our trust in
growth, limited sight, speech difficulties and Harold. Despite his tiredness, Phillip would do bible our all-knowing God to give us strength for each
abnormalities in his jaw. He was unable to walk study with Harold and they would watch their day. Although it was very difficult, we continued
on his own. favourite drama together. believing in Him and His purpose, and He gave
Harold’s father cared for him with great patience As Mr Tan aged and Harold grew bigger, us the strength to go forward doing His will and
and love, helping him with all his daily activities. caregiving became increasingly challenging for letting Him do the impossible for us.” Care team to his birthday celebration which was
Harold could not open his mouth fully due to his the father, especially when Mr Tan had to carry In 2016, Mr Tan found comfort on his arranged in September 2017, as he saw them
jaw abnormalities, but he was a foodie. Mr Tan and transfer Harold to his wheelchair. Because caregiving journey from the Assisi Hospice Home as significant people in his life who were there
would patiently crush all the food that Harold of Harold’s jaw abnormalities, his speech was Care team, which provided home palliative for him and his father during challenging times.
wanted to eat and feed him using a teaspoon, extremely slurred, and he would lose his temper care, and psychosocial and spiritual support for It was his last birthday and he passed away
allowing him to enjoy the taste while preventing at his father when he was not understood. As Mr Harold and himself. Assisi Hospice’s nurses and peacefully in November 2017.
doctors visited regularly, and readily responded Ms Sandra Lim, Assisi Hospice’s Senior MWS,
to Mr Tan’s calls whenever Harold’s bleeding shared, “In their quest to provide the best care
occurred. Assisi Hospice’s Medical Social Workers for their loved ones, it’s inevitable that caregivers
(MSW) offered Mr Tan emotional support and experience varying degrees of physical and
helped him cope with his anticipatory grief. emotional responses to the stress. They may
WORDS ANGELA YEO, MANAGER, CORPORATE COMMUNICATIONS, ASSISI Mr Tan declined assistance for the practical neglect their own basic needs and health. Many
day-to-day care tasks for Harold as he felt that of them do not have someone to share their most
he could cope on his own. However, he wanted genuine feelings and thoughts with, hence they
to prepare for Harold’s funeral in advance, to experience a build-up of emotions in addition
enable him to focus his time and attention on to the physical stress that they go through as
Harold when he became more ill. Assisi Hospice’s caregivers. They may also lack practical support
HOSPICE PHOTOS MR PHILLIP TAN AND ASSISI HOSPICE
MSW went through the process of planning the and have financial concerns. Due to the lack of
funeral with Mr Tan, including helping him with time to find support for these issues, which is
the printing and framing of Harold’s photo for actually available, they may continue to suffer
use during the funeral. alone for extended periods of time.”
Assisi Hospice’s MSW also had conversations To prevent burnout, she encourages caregivers
with Harold about his end-of-life care to have conversations about caregiving
preferences and wishes. Harold requested for a experiences with others through their informal
caricature drawing of himself as a keepsake for support network or with healthcare professionals.
From left:
his family. The Assisi Hospice team sponsored a This helps to prevent them from developing
The Assisi Hospice’s Home Care
team celebrated Harold’s birthday caricaturist to do the drawing, and presented it feelings of isolation and helplessness on the
with his family at the hospital; Mr
to Harold as a gift. caregiving journey. She said, “When challenges
Phillip Tan with his son, Harold.
Opposite page: Harold wanted to celebrate his 32nd birthday get too overwhelming, it is also easier for them to
Assisi Hospice’s gift to Harold
with family and friends who were important acknowledge that they will benefit from support to
– a caricature of him with his
favourite food to him. He invited the Assisi Hospice Home enhance their well-being.”
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T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9 T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9
CAREGIVER RESPITE
The course of respite Therein lies a common motivation that unites
HCA’s Medi Minders – the drive to bring life
Medi Minders, such as Kay Thompson, elevate their time with
their charges beyond clinical care with fun activities. into the days of these children and to be a
source of support for their families.
observant to Danielle’s responses to medication, the amount of output Singapore. “We didn’t know
the stimuli around her. “Sometimes, in the form of urine and vomit, if anyone here at all,” the Scottish
she finds certain cartoon characters any. On the flip side of the chart native shares.
scary and she’ll make protesting is where she usually includes a A nurse by profession, she
sounds,” Thompson says. “I’ll then personal note for the patient’s learned about HCA through her
look quickly for a different video for family. “Sometimes, I will write, husband’s colleague, whose friend
her to watch.” ‘She was a very good girl today’,” was a volunteer. “I was getting
Thompson’s attention to detail Thompson shares. used to life in Singapore and
is also apparent in her record- didn’t want to stay at home all
keeping. In the course of each MOTIVATING DRIVE day,” she explains. “I was really
session, she jots down numerous Thompson first stepped foot on interested to find out more about
details relating to Danielle’s routine, our sunny island in 2012, when volunteering at HCA, so I decided
such as the time of her feeds and her husband took on a job in to give it a try.”
Thompson first started
volunteering at HCA’s Day Hospice
and soon ventured into the
Medi Minder programme after a
conversation with HCA Medical
Director, Dr Chong Poh Heng.
Like the pieces of a jigsaw puzzle,
things fell into place quickly and
she took on the role immediately.
“I love being a Medi Minder,” she
says. “Whenever I am in Singapore
and they need my help, I will make
“S
hall I read a story milk feeding, suctioning and cards together for Mummy, read myself available.”
to you now?” Kay physiotherapy. storybooks or simply just hang There is no doubt that the
Thompson asks. Her The weight of responsibility on out together.” emotional rewards of being a
charge, 11-year-old the caregivers of children with high There is always time for beauty Medi Minder have been bountiful.
Danielle Seah, mumbles a muffled nursing needs such as Danielle is and pampering in these sessions “It has been really lovely to be
“yes” in response. At an age when undoubtedly heavy. This is where as well. “Danielle loves getting accepted into people’s homes,”
most of her peers spend their days HCA’s Medi Minders come into her nails painted and having Thompson says humbly. “The Star
in school, making friends and the picture – they are a special facial massages,” Thompson says PALS team is very supportive of
trying out new activities, Danielle, group of trained volunteers who with a smile. These personal each other and open to feedback.”
WORDS AND PHOTOS HCA HOSPICE CARE
a HCA Star PALS beneficiary, is help to provide respite care for the touches elevate the Medi Minder Facing death is never easy,
confined to her bed. caregivers of Star PALS patients. service beyond mere clinical care. especially when it happens to
She has spinal muscular atrophy, Thompson’s sincerity is evident a child whose time is cut short
a neuromuscular disorder that SERVICE FROM THE HEART in her thorough understanding of abruptly. But therein lies a
leads to muscle wasting and Thompson spends four hours each Danielle’s medical and emotional common motivation that unites
Opposite page
impaired mobility. Unable to move week with Danielle, attending to needs; she devotes much care to and left: HCA’s Medi Minders – the drive to
at all, Danielle requires round-the- her nursing needs and engaging each art-and-craft project the duo Medi Minder, Kay bring life into the days of these
Thompson, takes
clock care, a role largely taken on in different activities with her. does together. copious notes children and to be a source of
by Vivian*, her family’s helper. Each “We usually start with joint The young girl’s favourite pastime about her time on support for their families.
duty but also makes
day, Vivian follows a meticulous exercises,” she says. “For the rest is to watch cartoons on autoplay sure to inject fun
routine of diaper changing, of the afternoon, we will make on YouTube and Thompson is ever and games *not her real name
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T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9 T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9
A DIFFERENT VIEW CAREGIVER TRAINING
Caring for caregivers – Empowering
a physiotherapist’s view caregivers through
Sometimes intervention is needed with palliative patients so that their
caregivers get time to recharge for the long haul. training and more
Caregivers need to be equipped with the skills required to manage their
and he would want his wife to stay
care recipients at home which will increase confidence and ease stress.
by him constantly which made her
weary,” shared Firdaus.
His care team then stepped in to
T
inform the patient that his wife needed he full-time demands managing symptoms of illnesses and support, MWS Home Hospice
to adhere to visiting hours. Following of caregiving can be through frequent and regular medical social workers also help
the intervention, his wife was able to physically, mentally home visitations, and a 24-hour families explore financial subsidies
go home to rest and was refreshed and emotionally nursing hotline. MWS Home Hospice on nursing home fees, and attend
when she came back the next morning. draining. Caregiver stress arises staff trained Ms Tan to manage to bereavement needs in the
The team also taught her some range- from dealing with a host of daily Madam Yeo’s symptoms, which event of the demise of their loved
of-motion exercises to help lessen duties, and is worsened when the included breathlessness, swallowing ones. Medical / nursing services,
her husband’s discomfort. With the care recipient is also depressed or impairment, chronic bronchitis counselling, case management,
support, the caregiver was able to take uncooperative. Unfortunately, the and recurrent pneumonia. information and resource referral,
care of herself, as well as her husband. rigour of caregiving increases as the Being equipped with caregiving psychosocial and spiritual support
“At BVH, there is always plenty of patient’s condition deteriorates. techniques, Ms Tan is now more are also available for the care
support to ease caregiver stress, and Many caregivers feel that the confident of managing her mother’s recipient which help alleviate the
for them to feel positive and hopeful duties take a toll on their own chronic illnesses at home. demands on the caregiver.
again. Caring for a loved one who is health and finances, and some face Having emerged convinced of the With the complex burden of
dying is not easy. Though you may not burnout when they cannot cope assistance MWS Home Hospice can care, caregivers have to grapple
feel like you are doing much, every adequately. According to a survey offer, she encourages others to seek with a host of ever-evolving
F
or 32-year-old caregivers in performing a range little thing that you do means a lot, done by the Ministry of Social such support services as well. “MWS needs. Institutions are working to
Muhammad Firdaus of motion exercises, bathing and even if it’s just being around them,” and Family Development (MSF) in Home Hospice actually empowered continually enhance and integrate
Bin Mohamed Zin, even injection procedures. BVH said Firdaus. 2013, 15-20 per cent of caregivers me to take better care of my mother. their services for beneficiaries and
working as a also educates caregivers on the in Singapore reported symptoms I want people to know this service their caregivers. For caregivers,
physiotherapist in the palliative disease their loved ones are going of depression, and 21.6 per cent exists and they need not be afraid of utilising the various formal services
ward at Bright Vision Hospital through and what to expect in due said that caring for their spouse it,” she said. available can greatly ease their
WORDS DOMINIQUE ASHLEY WANG, EXECUTIVE, COMMUNICATIONS & ENGAGEMENT,
(BVH) for the past year has been an course. Social workers also provide BVH INPATIENT worsened their own well-being. In addition to caregiver training responsibilities in giving care.
eye-opener. Compared to his four emotional support and link them to PALLIATIVE CARE Thankfully, the many support
years’ experience caring for rehab financial aid. functions available now not only
METHODIST WELFARE SERVICES PHOTO METHODIST WELFARE SERVICES
or sub-acute patients, palliative “Caregivers must also be able Weekly Group Therapy ease caregiver stress, but enable
care requires him to be more to take care of their own health,” caregivers to be more adept at Madam Yeo with her
Occupational therapists and daughter Ms Tan benefit
resilient, extra compassionate and advised Firdaus. The stress of physiotherapists lead patients managing their patients’ illnesses. from home visitations and a
empathising on the job. caregiving can lead to depression, Methodist Welfare Services (MWS) nursing hotline
in exercises and games.
Other than caring for patients, anxiety or burnout. To prevent this, Home Hospice is one such place
Firdaus works closely with caregivers need to occasionally Daily Living Kitchen that equips caregivers with the
caregivers. “A palliative caregiver’s take time off to recharge by having Weekly Cooking Sessions have skills needed to manage their care
role is to provide companionship enough rest or some ‘me’ time. patients assigned simple tasks. recipients’ medical and nursing
WORDS & PHOTO BRIGHT VISION HOSPITAL
and to assist patients with their Emotionally, they can share their issues at home.
Relaxation Therapy
physical and emotional needs,” feelings with close friends, family Six years ago, Ms Tan Kah Hong
Patients enjoy an hour’s
he explained. members or social workers.. stopped work to be a full-time
nap time in a comfortable
caregiver for her mother, Madam
room with music and scent
LESSENING CAREGIVERS’ BURDEN SUPPORTING CAREGIVERS Yeo Ah Cheng, who had a bad fall
of their choice.
Palliative patients’ caregivers may Firdaus used to care for a patient at home. After frequent hospital
suffer more emotional and physical who suffered from weak lower Mental Wellness Support admissions in the following years,
distress, especially when seeing their limbs and was unable to move his Patients and their caregivers Madam Yeo was referred to MWS
loved ones suffer as the cause is legs despite feeling discomfort from are given counselling. Home Hospice in September 2016.
irreversible. To help ease caregivers’ lying in one position for too long. MWS Home Hospice’s nursing staff
stress, BVH provides training to “The patient had a supportive wife, provides guidance to caregivers on
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T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9 T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9
TERMINAL DISCHARGE
Gearing up for
the final stretch
While many palliative patients’ last wish may be to complete their
life’s journey at home, caregivers and families need to be prepared to
handle this physically and emotionally.
“I
t is something that foreign domestic worker (FDW) may have to administer injections
Mama would have or live-in family member caring at home as their loved one can no
wanted – to pass on for the patient prior to hospital longer take medication orally.
at home.” admission, are not taken Family members have to
Palliative Care Service (PCS) in into consideration. support each other at this
Changi General Hospital has been Are the immediate caregivers time of need, be it emotionally
activated many times to facilitate a ready for this final journey? or physically, or both. Should
smooth transition from hospital to Families can request for terminal immediate caregivers have little
the comfort of patients’ preferred discharge, but the immediate support from the family, they
place of demise, usually their own caregivers are the ones who will need to speak up instead of
home. Terminal discharge, as it’s have to manage the end-of-life bowing to the pressure of this
called, refers to the last 48 to 72 care at home. The reasons for idealistic vision of presumed
hours or less of a patient’s life. the decision to send your loved “good death”. Over the years, I
During this fragile time, PCS will one back to the hospital needs have noticed that the experience
inform the family of the risk of to be reviewed – was there of your loved ones’ death will
death en route and the ambulance some form of caregiver stress influence the care you will opt for
paramedic will continue to send the relating to care or the difficulty in the future. As the saying goes,
patient home and lay the patient in managing the symptoms; or the dying will eventually die but
WORDS RASIDAH BTE ALIAS, PALLIATIVE CARE NURSE, CHANGI GENERAL HOSPITAL
at the designated place prepared did your loved one request to be the living are the ones that will
by the family. The family will also sent back to the hospital due to carry on. It is important to look
be informed of potential symptoms agonising symptoms? after yourselves during this trying
that may arise at home. No one death is the same – time and not get burnt out.
Terminal discharge by non- even when people are dying Being Asians, most of us do
emergency ambulances is more from the same condition. Some not talk openly about the taboo
costly than a routine transfer to may be burdened with a rocky topic of death. From my multiple
a patient’s home. The oxygen and road full of symptoms at the experiences of exploring advance
monitoring requirements of the end of life while others may not care planning (read more about
patient and the risk taken by the even have any. So even if families ACP on page 14), and as expected,
ambulance service to transport the have had prior experience with most people would opt for home
As the saying goes, the dying will eventually
critically ill patient account for the having their loved ones pass on as a preferred place of demise.
high fee of the ambulance service, at home, they should be mindful However, upon further
which could run to a few hundred of the current situation and, as exploration of care – should the
dollars, to be paid in cash at the
end of service rendered.
much as possible, help to ease
the caregivers in caring for the
family be unable to cope at home,
the patients are usually agreeable die but the living are the ones that will carry on.
In the family’s enthusiasm to fulfil terminally ill. for terminal care to be done in
what some may call “final filial
piety” to respect their loved one’s
The anticipation of symptoms
that may arise at home and yet
an institution such as a hospice,
community hospital or nursing
It is important to look after yourselves during
last wish, often the needs of the
immediate caregivers, such as the
having to keep composed cannot
be overemphasised. Caregivers
home where they will live their
final days in dignity. this trying time and not get burnt out.
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T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9 T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9
VIEWS
CARING
FROMHANDS
THE PROS
Making sense of advance
a pool of Advance Care Planning well, quality of life and a good death. healthcare preferences ahead of
(ACP) facilitators. ACP is a series of Part of the ACP discussion also involves time, in the event he/she cannot
directives in Singapore
discussions between patients, their nominating a healthcare spokesperson, speak for himself/herself. ACP has
loved ones and healthcare professionals. someone who will speak on the person’s greater advantages compared to
It involves the sharing of preferences behalf in the event he/she loses capacity. the others as it explores a person’s
DR EUNICE CHUA SHUMIN and values a person has in making A person’s ACP acts as his/her own values and preferences, providing
Associate Consultant, General Medicine, Clinical Co-Lead for Advance Care Planning, Tan Tock Seng Hospital his healthcare decisions. In an ACP voice, to reflect what his/her treatment greater guidance for a wider range
discussion, the use of extraordinary life- goals and preferences are, in the event of healthcare decisions at different
sustaining treatment is discussed, as well he/she becomes incapacitated. stages of disease.
Advance directives are instruments that Medical Directive (AMD) signed effect in 2010 when the Office of the
as a range of other treatment and care The ACP ‘document’, submitted ACP can be done by anyone,
enable people to make decisions about in advance to inform his/her doctor Public Guardian was set up. Under
options. For example, the preferences to the AIC and stored online in the regardless of their age or health
their healthcare ahead of time. They can that he/she does not want the use this Act, a person can make a Lasting
regarding dialysis, use of artificial individual’s electronic health record, status. It is widely incorporated as
be used in situations when decision-making of any extraordinary life-sustaining Power of Attorney (LPA). The LPA is
nutrition or even blood transfusions can can be retrieved by healthcare staff part of standard healthcare and has
capacity is lost, for example in the case of treatment to prolong his/her life, in the a legal document that allows a person
be discussed to elucidate a person’s through the National Electronic Health greater benefit when done at an
severe dementia. These instruments are event he/she becomes terminally ill. (the donor) to voluntarily appoint one
goals of care. Record (NEHR). early stage as part of ongoing care.
especially helpful in relation to healthcare Extraordinary life-sustaining treatment or more persons (donee/s) to make
The ACP discussion also aims to These various advance directives all More information about ACP can be
decisions on end-of-life care, when a person usually refers to the use of machines to decisions and act on his/her behalf in the
explore a person’s definition of living play a role to help convey a person’s found at www.livingmatters.sg/.
is usually too ill or incapacitated to decide if artificially take over the work of keeping event he/she becomes incapacitated.
they would want certain treatments. the human body alive. The LPA only comes into effect
In Singapore, there are three types of A completed AMD form has to when the donor loses decision-making
advance directives that can be used to be registered with the Registrar of capacity. The form is submitted to the
Tips for Caregivers
communicate one’s healthcare preferences Advance Medical Directives, under the Office of the Public Guardian.
and decisions. Ministry of Health.
Advance Care Planning
DR JAMIE ZHOU
Advance Medical Directive Lasting Power of Attorney In 2012, the Agency for Integrated Consultant, Division of Supportive and Palliative Care，
The Advance Medical Directive Act was In 2008, Singapore enacted the Mental Care (AIC) distributed funds to National Cancer Centre, Singapore
enacted in 1996, allowing for an Advance Capacity Act. This Act came into various regional health systems to train
There is no single definition for caregiving, but for the
purpose of this article, a caregiver is any relative or
friend, who provides a wide range of (unpaid) care to
Advance What it is When to Witnesses required Bodies Revocations
Directives arrange concerned a person with a chronic or serious illness.
Advance A legal document Above 21 Signed in the presence Registrar of Any time in writing
Medical to inform the doctor years old, of a doctor and another Advance Medical or verbally Being a caregiver is a huge commitment with much diet, adequate hydration, good sleep and regular
Directive that no extraordinary of sound witness above 21 years Directives at
sacrifice of personal time and space. It is important to exercise, you should also try to prevent injuries
(AMD) life-sustaining mind old; attending doctor Ministry of Health
treatments should be and two specialists to care for yourself so you can continue providing care for that may be sustained during caregiving, such as
given in the case of decide to discontinue the long haul. falls and strained backs.
terminal illness life-sustaining treatments Here are some tips to take care of your mind, body
upon AMD confirmation
and soul. #3. Soul – Nourish yourself spiritually
Lasting Power A legal document Above 21 LPA certificate issuers Office of the Automatic under
This can be in the form of connecting with
of Attorney whereby up to two years old, can be a doctor Public Guardian certain scenarios set
(LPA) donees can be of sound accredited by Office out by the Mental #1: Mind – Stay in the present nature (eg. gardening), connecting with a higher
appointed to handle mind of the Public Guardian, Capacity Act; any If you are too preoccupied with the future, you might feel being or connecting with yourself (eg. keeping a
the donor’s personal registered physician or time by the donor anxious. If you dwell too much in the past, you might get journal). There are many mobile apps that now
welfare, and property practising lawyer in person while of
and affairs sound mind depressed. Staying in the present means you focus on support these such as “Calm” (a meditation app)
what you have to deal with for that day. or a religious app to listen to sermons or prayers.
Advance Care A written document, Above 21 Documentation requires Agency for Ongoing process
Planning (ACP) video or verbal years old, trained ACP facilitators Integrated Care, where changes can
directive arising from of sound retrievable through be made with the #2. Body – Do not neglect your own physical needs This new year, I hope you will take good care of
a series of discussions mind the National assistance of ACP Your body needs to be well taken care of in order to your mind, body and soul. Not only for your sake,
about his/her Electronic Health facilitators
treatment goals and Records carry out caregiving tasks. Besides ensuring a balanced but also for your loved ones.
living preferences
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T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9 T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9
CALENDAR
Upcoming Events & Announcements
15 MAR 2019 (FRIDAY) Time: 1.00pm – 2.00pm 28 MAY 2019 (TUESDAY)
HCA 30th Anniversary Gala Dinner Contact: secretariat@ SHC Multidisciplinary Palliative
HCA Hospice Care (HCA) turns 30! singaporehospice.org.sg / 6538 2231 Care Forum
Celebrate this momentous milestone Management of delirium in patients
with HCA as they commemorate 30 APR 2019 (TUESDAY) approaching the end of life
30 years of compassionate care SHC Multidisciplinary Palliative Venue: TBC (do check out SHC’s
of patients with life-limiting Care Forum website or facebook for updates)
illnesses at the HCA 30th Non-Cancer Palliative Care: Time: 1.00pm – 2.00pm
Anniversary Gala Dinner. Lessons learnt 18 months into Contact: secretariat@
Venue: Island Ballroom, Shangri-La Programme IMPACT singaporehospice.org.sg / 6538 2231
Hotel Singapore Venue: Tan Tock Seng Hospital,
Time: 7.30pm – 9.30pm (Cocktail Theatrette, 11 Jalan Tan Tock Seng, 16 JUN 2019 (SUNDAY)
starts at 6.30pm) Singapore 308433 Assisi Fun Day 2019
Contact: Ms Mel Basuki, Fundraising Time: 1.00pm – 2.00pm Assisi Fun Day 2019 is Assisi
Manager at melb@hcahospicecare. Contact: secretariat@ Hospice’s biggest fundraising
org.sg / 6891 9508 singaporehospice.org.sg / 6538 2231 event of the year and is expected
to attract 10,000 visitors. It
24 MAR 2019 (SUNDAY) 11 & 12 MAY 2019 (SATURDAY hopes to raise at least $1 million
Metta Charity Carnival 2019 & SUNDAY) to provide palliative care to
Have your passport to inclusivity “Live Well. Leave Well.” patients. The mega fair is a
ready when you join the Metta Community Engagement Event by community event put together
Charity Carnival where all Singapore Hospice Council (SHC) by staff and volunteers from
‘travellers’ meet at this melting Learn more about the palliative all walks of life, including
pot for games, delicious food and care, support and services corporate organisations, church
entertainment for the whole family! available for the elderly and their groups, schools and family-
Venue: Metta Welfare Association caregivers in Singapore. There run businesses. There will be
@ 32 Simei Street 1, Singapore 529950 will be interactive booths, talks established F&B names, retro
Time: 9.00am – 4.00pm by healthcare experts and live treats, games, lots of activities
Contact: Mr Andy Chua, andychua@ performances. and live entertainment!
metta.org.sg / 6580 4614 Venue: The Courtyard@ Venue: St Joseph’s Institution
Westgate, 3 Gateway Drive, International, 490 Thomson Road,
26 MAR 2019 (TUESDAY) Singapore 608532 Singapore 298191
Multidisciplinary Approach to Deal Time: 10.00am – 5.00pm Time: 10.00am - 4.30pm
with Bone Metastases Contact: secretariat@ Contact: Ms Lilian Lee, lilian.lee@
Venue: Yishun Community Hospital singaporehospice.org.sg / 6538 2231 assisihospice.org.sg / 68322880
EDITORIAL COMMITTEE
Editor Christina Wee
Associate Editor Anne Loh
Assisi Hospice Angela Yeo
Bright Vision Hospital Muhammad Azhar bin
Abdul Rahim
Changi General Hospital Rasidah Bte Alias
Dover Park Hospice Jenny Goo
HCA Hospice Care Toh Wei Shi
Khoo Teck Puat Hospital Ong Min Li
Lien Centre for Palliative Care Madhurima Bagchi 1 Lorong 2 Toa Payoh #07-00
Metta Hospice Care Souriyasack Sinnie Julie Anne Braddell House
MWS Home Hospice Nicole Andrea Tan Singapore 319637
Singapore Cancer Society Kumudha Panneerchelvam
St Andrew’s Community Hospital Peh Lay Koon T: 6538 2231
St Joseph’s Home Shereen Ng E: secretariat@singaporehospice.org.sg
St Luke’s Hospital Chua Hwee Leng www.singaporehospice.org.sg
Tan Tock Seng Hospital Dr Ho Si Yin
Singapore Hospice Council Leo Wan Ling
Design Christian Subrata Contents are not to be quoted or reproduced without the prior
Printer Yung Shung Printrade Pte Ltd written permission of the Singapore Hospice Council.
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T H E H O S P I C E L I N K • M A R C H – M AY 2 0 1 9
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