DECEMBER 2019 – FEBRUARY 2020 • MCI (P) 052/10/2019

6 key things to do in end-of-life planning Beyond the end LEAVING WITH PEACE OF MIND

PLUS Tips for caregivers

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THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 CHIEF EXECUTIVE’S NOTE Members’ Contacts Contents A perfect planner Assisi Hospice St Luke’s Hospital 832 Thomson Road, S(574627) 2 Bukit Batok Street 11, S(659674) T: 6832 2650 F: 6253 5312 T: 6563 2281 F: 6561 8205 for your life www.assisihospice.org.sg www.slh.org.sg [email protected] [email protected] Goals Values Bright Vision Hospital Tsao Foundation 5 Lorong Napiri, S(547530) 298 Tiong Bahru Road Skills Religion T: 6248 5755 F: 6881 3872 Central Plaza, #15-01/06, www.bvh.org.sg S(168730) [email protected] T: 6593 9500 F:6593 9505 Interest Dreams tsaofoundation.org Buddhist Compassion Relief [email protected] Tzu Chi Foundation (Singapore) 9 Elias Road, S(519937) Changi General Hospital 12 Family Retirement T: 6582 9958 F: 6582 9952 2 Simei Street 3, S(529889) www.tzuchi.org.sg/en T: 6788 8833 F: 6788 0933 2 Members’ Contacts www.cgh.com.sg Dover Park Hospice Friends Healthcare 10 Jalan Tan Tock Seng, S(308436) Khoo Teck Puat Hospital 3 Chief Executive’s Note T: 6500 7272 F: 6258 9007 90 Yishun Central, S(768828) www.doverpark.org.sg T: 6555 8000 F: 6602 3700 Life 4 6 important things to End of [email protected] www.ktph.com.sg Education remember when doing Plans Life HCA Hospice Care KK Women’s and end-of-life planning 705 Serangoon Road, Block A #03-01 Children’s Hospital @Kwong Wai Shiu Hospital, S(328127) 100 Bukit Timah Road, S(229899) T: 6251 2561 F: 6291 1076 T: 6225 5554 F: 6293 7933 6 Leaving with no regrets e have always been busy Indeed, it may not be an easy task to think www.hca.org.sg www.kkh.com.sg making life plans, from how about our own end-of-life (EOL) plans and decide [email protected] 8 Talking about leaving W much we wish to earn to the what we want. Some may even shun broaching Ng Teng Fong General Hospital type of house we wish to live the topic, leaving their family members to guess Metta Hospice Care 1 Jurong East Street 21, S(609606) in and eventually, to retire comfortably. and make assumptions about their wishes when 32 Simei Street 1, T: 6716 2000 F: 6716 5500 10 Beyond the end Looking back, many of us will smile at our that time comes. Metta Building, S(529950) www.ntfgh.com.sg T: 6580 4695 F: 6787 7542 [email protected] achievements and agree that we are our life’s As Abraham Lincoln said, “In the end, it’s not www.metta.org.sg 12 “Live Well. Leave Well.” great planners. the years in your life that count. It’s the life in [email protected] National Cancer – Voices of My HeART The irony is, how many of us actually plan your years.“ Centre Singapore for our end-of-life care and to lower the stress Therefore, only your desired plan for EOL care MWS Home Hospice 11 Hospital Drive, S(169610) 14 Rethinking the quality of our loved ones in the final sprint? At the can bring you the peace of mind knowing your 2 Kallang Avenue, T: 6436 8000 F: 6225 6283 back of our minds, most of us may have at wishes will be honoured. Your six key EOL plans CT Hub #08-14, S(339407) www.nccs.com.sg of palliative care least a vague idea of wanting a good last should aim at “Live Well. Leave Well.” which is T: 6435 0270 F: 6435 0274 www.mws.sg Tan Tock Seng Hospital chapter in life but may fumble to pen or define Singapore Hospice Council’s campaign slogan [email protected] 11 Jalan Tan Tock Seng, S(308433) 16 Concerning the end what is deemed a “well-planned” one. and at least include the following: T: 6256 6011 of life Singapore Cancer Society www.ttsh.com.sg 15 Enggor Street, #04-01, Realty Centre, S(079716) Woodlands Health Campus 18 A warm farewell Love T: 1800 727 3333 9 Maxwell Road, with heart www.singaporecancersociety.org.sg MND Complex Annex A, [email protected] #03-01A, S(069112) T: 6681 5999 20 Staring death in the Finances Forgiveness St Andrew’s Community Hospital www.whc.sg face everyday 8 Simei Street 3, S(529895) My T: 6586 1000 Lien Centre for Palliative Care www.sach.org.sg Duke-NUS 22 Planning well for the Perfect [email protected] Medical School Singapore future of our loved ones Plan 8 College Road Healthcare St Joseph’s Home Level 4, S(169857) Legal 36 Jurong West St 24, S(648141) T: 6601 2034 / 6601 7424 [Education] 24 Upcoming Events & preference T: 6268 0482 F: 6268 4787 T: 6601 5113 [Research] Tips for caregivers www.stjh.org.sg www.duke-nus.edu.sg/lcpc Living [email protected] Ms Evelyn Leong Legacy Chief Executive Singapore Hospice Council

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THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 EOL CHECKLIST 2 4 important things to CHOOSE YOUR SPOKESPERSON PLAN YOUR FINANCES It is important to identify your preferred Create a Power of Attorney (POA) with the healthcare proxy — the person who help of a lawyer to appoint another person will make decisions for you in the event to act on your behalf upon your death or remember when doing you are not able to do so. The person incapacity. Organise your assets, estate, should best understand and support your insurance, debts and bank accounts, and wishes. This person may not necessarily make a will regarding distribution of assets. end-of-life planning be the one you feel closest to but is If you have children, the guardianship of someone whom you trust and is willing your children should be included. 6 and capable of making decisions on your Assisi Hospice’s Psychosocial Support Services team, which assists behalf when you are not able to. patients in their end-of-life planning, shares the important things that you should not forget, and the experiences of their patients. 5 Every individual’s life story is unique. 3 LEAVE A LEGACY Death is part of our life story, and we can You can prepare notes, letters, choose how we want to write it on our gifts and keepsakes in a memory pages by doing end-of-life planning. It is SETTLE ANY UNFINISHED box for loved ones. You may also request important to plan ahead so that you can BUSINESS OR REGRETS for gifts to be delivered on your behalf on put your mind at ease. This may include reconciling with family special occasions. and friends, settling personal issues which you have yet to resolve, and Celebrating Milestones bidding farewell and thanking those who Mr X sought assistance from Assisi Hospice’s matter to you. care team to leave notes for his son. We 1 helped Mr X write handmade cards, sealed Creating Beautiful Moments them and passed them to his family. DO ADVANCE CARE PLANNING Mr S said he was not an involved husband Mr X wanted his son to open them during Advance Care Planning (ACP) allows a as he was away from home most of the the important milestones of his life — 21st person to make his or her wishes and care time due to his work commitments. When birthday, graduation ceremony and wedding preferences known before being faced he knew his time was limited, he wanted to — when he would no longer be around. with a medical crisis. Discussing these spend time with his beloved wife to make issues with the people around you will up for the time lost. He wanted to create help them understand your goals, values and happy moments with her. The couple spent beliefs, and help to ensure that your wishes time together visiting places and capturing are respected should you lose the capacity ASSISI HOSPICE beautiful pictures. to make your own decisions. Without Ms Peh Cheng Wan 6 (right), Head of these conversations, it is not uncommon Psychosocial Support for distressed family members to have Services interacting MAKE PRE- AND POST- disagreements, for example, about whether with a patient DEATH ARRANGEMENTS to keep you alive using any means possible Let your family know how you envisage or focus on your quality of life. This your funeral to be. You can personalise your

does not need to be a one-time feel better. His son was very upset with his PHOTO MS PEH CHENG WAN funeral in a way that meets your spiritual conversation. Attitudes, feelings and decision, but he wanted him to know that and cultural preferences. For example, you preferences may change over time, depending this is a choice he made. may choose the poems to be read or music on your circumstances, and if they do, let to be played. Make known your preference your loved ones know. Keep a copy of your Changing View on CPR on cremation or burial, placement of ashes ACP and make copies for your loved ones/ Mr R’s opinion on cardiopulmonary and memorial service. medical professionals. resuscitation (CPR) changed after his heart attack. He had earlier expressed that he did Celebration with free-flow beer The Family Meeting not wish to go through CPR but eventually Mr Z loved partying and usually spent Mr X called for a family meeting and spoke to did after the heart attack. Although he was weekends with friends. He told his wife his children about his wishes and preferences. in ICU for 10 days and was in great pain, he that he did not want a solemn funeral but a Knowing his condition, he did not want to was happy to be alive and be with his family celebration. He instructed his wife to have a

undergo dialysis even though it might help him once again. COMMUNICATIONS MANAGER, ANGELA YEO, beer fridge and to have free flow of beer for his friends who attend his wake. WORDS WORDS

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THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 HOME GROUND Leaving with no regrets

Dover Park Hospice’s Resident Physician Dr Hoh Sek Yew talks about the importance of preparing for end-of-life and choosing home hospice care.

When should planning and How can one plan and prepare for For inpatient hospice care, patients preparation for end-of-life begin? end-of-life? with life-limiting illness receive When diagnosed with a life-limiting In planning and preparing for specialised palliative care in a or terminal illness, patients and end-of-life, it is important to hospice facility. their loved ones tend to struggle take a proactive rather than emotionally, as they try to cope reactive approach. What is hospice home care? with the bad news. They may be While death is a topic shunned Hospice home care refers to the care shocked or numbed by the news — by most people, it is crucial that we and support provided to patients questioning whether the diagnosis is start conversations early through with life-limiting illnesses and true, asking themselves whether the Advance Care Planning (ACP). This generally with estimated prognoses illness can be cured, or its course includes patients being open and of 12 months or less, in the comfort can be delayed. They may worry, or honest with their family on their of their own homes. It comprises feel very sad and lonely. They may care preferences and sharing their a multidisciplinary team of doctors, also feel angry, thinking that if they thoughts on important life topics nurses, medical social workers Dr Hoh Sek Yew, Resident do things differently, maybe the such as death and personal beliefs. and volunteers, working closely Physician (Home Care) at future will turn out better. ACP allows you to communicate or together to care for the physical, Dover Park Hospice Planning and preparation for document your values and wishes psychosocial and spiritual needs of end-of-life may only begin when regarding your future medical the patients with advanced illnesses, the patient or his/her loved ones care. In addition, one should plan in an environment that they are acknowledge that, at the very for financial and legal matters and familiar with. Most hospice home Check if there is a caregiver mattress, an oxygen concentrator, might be charges for some least, death is a possibility. If they consider drawing up a will and a care services provide 24-hour on- available to attend to the patient’s a commode, a walking aid and/ non-subsidised items. There are feel overwhelmed, they can seek Lasting Power of Attorney. call service. needs round the clock. Although or a wheelchair) so that necessary also a few specialised home care professional help from the primary Palliative care can be provided most hospice home care providers arrangements can be made. programmes which requires healthcare team attending to the in patients’ homes, in a daycare What are the key areas to consider offer a 24-hour on-call service, the co-payment. patient, and referral may be made facility or inpatient palliative care in planning for end-of-life care healthcare team is not physically How can one apply for hospice Government subsidies are to the palliative care team in the services. Day hospice care offers a at home? around all the time. Having a home care? available for hospice home care hospitals or the different hospices in supportive environment for patients Families should take time to weigh caregiver at home is essential for To apply for hospice home care through means-testing based on the community. who require care in the day. the options available for palliative a patient who requires assistance in Singapore, one should get a household monthly income to There will always be uncertainty Recreational activities and therapy- care and make a choice that will not with activities of daily living, such referral from a hospital or polyclinic determine the level of subsidy. ahead, despite proper planning based programmes are organised only benefit the patients but also for as eating, dressing, showering doctor, or a general practitioner/ and preparation, but it is always to encourage social engagement the family, taking into considerations and walking. family physician who can apply What happens when a patient good to start conversations on and enhance quality of life. It also the patients’ symptoms and level of Depending on the caregiver’s through the Agency for Integrated can no longer be cared for end-of-life early. provides caregivers with respite. care required. abilities, further training could be Care. A doctor must certify that at home? required, in order to ensure that the patient is suffering from an In situations where a patient’s patients are being well taken care advanced and progressive illness, condition and care needs can no of at home. The home care team such as an advanced and incurable longer be supported by family can also provide tips and advice cancer, end-stage heart, kidney or members at home, because the on caregiving. Caregiver training liver failure, a severe chronic lung symptoms become difficult to DOVER PARK HOSPICE PARK DOVER courses are also available at the disease or advanced dementia or a control or the caregivers are

PHOTO Agency for Integrated Care. degenerative nerve disease, in order exhausted, then institutional care Prior to receiving hospice home for application and admission to may be required. This is when There will always be uncertainty ahead, despite care and if the patient is in hospital, be considered. the hospice home care team can “ it is important to discuss with help to arrange for the patient to proper planning and preparation, but it is always good the attending healthcare team on How much does home hospice cost? be transferred to a hospital, an DR HOH SEK YEW, RESIDENT PHYSICIAN (HOME CARE) RESIDENT PHYSICIAN DR HOH SEK YEW, any need for special medical or Are subsidies available? inpatient hospice or a nursing assistive equipment (for example, a Most palliative home care services home, depending on the needs of AT DOVER PARK HOSPICE HOSPICE PARK DOVER AT to start conversations on end-of-life early.” WORDS hospital bed with a pressure-relief do not charge for visits but there the patient.

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THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 OPEN CONVERSATIONS

Besides the generally low level of awareness burdens of your loved ones when faced among Singaporeans, he also noted the with the challenge of making important existing cultural barrier and sensitive nature medical decisions on your behalf. While he Talking about leaving of speaking about EOL matters. “The sensitive acknowledges that some may find it difficult subject of death has to be treaded carefully to discuss and share their preferences and A Khoo Teck Puat Hospital volunteer’s experience with planning and advocating during the discussion. Most of those who are beliefs before death, he maintains that if older, like those in the Pioneer Generation, are one can overcome this barrier, it will greatly end-of-life matters sheds light on work that still needs to be done. sensitive to these things. You can sense that reduce the burdens that their loved ones they’re reluctant to talk about it and can even may have to undergo during a crisis. become quite upset (when you try to discuss “I think it still boils down to the with them),” he recalled. Though it is usually fact that you don’t want to put your r. Chui Peng Sang has been an the seniors who shy away from the taboo topic loved ones in that difficult situation,” he advocate for Advance Care Planning of death, he shares that it is sometimes the said. “So, explaining or making known M (ACP) since 2015. Before his current latter’s adult children who refuse to discuss earlier how you would like things to be stint as an ACP volunteer for such subject matters and prevent their elderly managed would allow your loved ones to Khoo Teck Puat Hospital (KTPH), Mr. Chui had parents from taking up ACP. Therefore, several be more able to manage things in a more worked with elderly individuals throughout complex factors hinder peoples’ acceptance controlled manner.” his career in the social service industry. He and attitudes towards ACP. was first introduced to ACP while working as a NEED FOR MORE AWARENESS case manager with Thye Hua Kwan, where he BENEFITS OF DOING ACP While ACP has gained some traction since managed elderly individuals in the community. Mr. Chui has always been receptive to the idea its introduction to Singapore in 2009, During their consultation sessions with him, he of discussing EOL matters and broaching the Mr. Chui hopes that the mindset and level would also introduce ACP to them. “In the past, supposedly taboo subject of death. “Death is of acceptance will increase in the years to only the hospitals or institutions would conduct the only certainty in life. The doctor cannot come. He suggests that there be increased ACP sessions with the elderly,” explained the promise you anything, but the certainty is that publicity effort and more initiatives to bring 55-year-old. death will come one day,” he said. With this the matter closer to the community, through Eventually, the ACP scheme was expanded to mindset, he hopes to bring up the sensitive platforms such as community events to target the larger population of elderly living in subject carefully to those who are not so aware create awareness about ACP and its benefits. the community due to the need to educate them of ACP by encouraging them to think about EOL “I would hope for more participation on end-of-life (EOL) matters as well. Hence, it was in a deeper sense. by the elderly, but then again it’s also a individuals such as Mr. Chui who have worked Furthermore, he also shared about the personal choice that cannot be forced Opposite page: at raising awareness about ACP to the elderly benefits of ACP, which he believes in and upon the individual,” he said. Ultimately, Mr. Chui, an ACP outside of hospitals and institutions during its similarly hopes for more people to know. Mr. Chui believes that first spreading more volunteer with KTPH; Below: ACP early stages of implementation. Despite having a These benefits include allowing doctors to awareness and explaining ACP’s rationale is brochures available chronic medical condition, it was the knowledge know your preferred medical treatment crucial in conveying the message across to at the pushcart stationed in the and experience that Mr Chui had gained while during an emergency, as well as relieving the the public. KTPH Lobby working with the elderly population as well as previously being an ACP facilitator that made him want to continue contributing to ACP in any way possible. He became an ACP volunteer with KTPH. CHALLENGES AND BARRIERS TO ACCEPTANCE Mr. Chui volunteers every Monday for two hours, starting from 10 am. Each time, he sets up and prepares the booth for the throng of visitors who traverse the hospital walkway. Armed with several ACP brochures, he offers them to passing The lack of members of the public. If there are any interested individuals, he introduces them to ACP and awareness about clarifies any doubts that they may have. Once they decide to do an ACP, Mr. Chui then records their particulars so that the ACP facilitators can Advance Care arrange an appointment with them. However, while volunteering, Mr. Chui shares that the Planning among lack of awareness about ACP among the general KANG YUE JOY public remains a challenge in getting people to decide to take it up. Without having prior the general public knowledge of ACP, many remain unaware of its existence in the first place and hence do not remains a challenge. bother to find out more. AND PHOTOS WORDS

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THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 RESETTING THE CLOCK

The support of family, friends and the church is invaluable in getting us through each day. We are thankful for the support of the palliative care doctor, nurse and social worker who journey with us.

come home first and we would continue the Despite the fact that one has decided on one’s search. So I made swift arrangements to get one Advanced Care Planning (ACP), one is never room ready for his homecoming. fully prepared when confronted with death. But The journey home on the day of discharge with ACP, it provides a kind of guide for the care was a hair-raising one: he was sick in the options that the patient wishes. However, in car because he had not been up-and-about reality, it is always a struggle for the loved ones for almost six weeks. By and large, he was when critical decisions have to be made. disorientated and unwell. The challenge now is in the day-to-day care All of a sudden, we felt as if we had been decisions and issues to be faced. For example: Touch Therapy is an important abandoned — by the doctors, the nurses, the his inability to sleep; constipation; pain; nausea; aspect of palliative caregiving as it creates feelings of closeness world. The feeling was one of despair and fear. giddiness; lack of physical activities; the feeds. between caregiver and patient We missed the round-the-clock consultation Emotional issues like the meaning of life,

and help. We missed the care and comfort. boredom and helplessness are also felt at times. We missed the sense of security and safety Unlike the desperate feelings we had when we above all. first came home, we are thankful for the support Now I have to be the nurse, the cook, the of the palliative care doctor, nurse and social doctor, the psychiatrist, the pharmacist, the worker who journey with us. cleaner. I felt like giving up. The questions remains: my husband has It was especially scary and frightening outlived his prognosis, so what’s next? at night. The fear was inexplicable. What if he suddenly becomes unconscious? What if his temperature goes up? What if his pain increases? There seemed to be a thousand what Right: Madam Lok and her husband ifs and no answers. The first few weeks at home Mr Cheng Wei was a struggle. Hsien have settled into days Beyond the end My husband has been home for four of routine after months now. We have settled into a routine. adjustment to home hospice care In the case that hospice home care is the only option The Metta Hospice Care doctor and nurse are always available for consultation. The helper when the prognosis fails, a caregiver shares about and I have settled on our roles in caring for finding comfort in the support and care. him. Modifications to the room and other arrangements were made to cater to his comfort. The support of family, friends and the church is invaluable in getting us through hen my husband came home in May I started searching for a nursing home in each day. 2019, he had outlived his prognosis. earnest, which, due to the subsidy issue, was My husband agrees that his current feeling W About six weeks before, we were fraught and ultimately unsuccessful. We never is a far cry from how he had felt when he first told that he might not survive his thought that staying at a nursing home could cost came home. He shares that he was terrified of perforated intestine since he had opted not to so much. My feeling of helplessness increased as the uncertainty of coming home. The lack of MADAM LOK (WIFE OF PATIENT MR. CHENG WEI HSIEN) (WIFE OF PATIENT LOK MADAM have surgery. the search progressed. in-depth information on how hospice home care After about a month’s stay in the palliative care Although the hospital doctors were kind works added to the fear and isolation. We did ward of a community hospital, the doctors told to extend more time to me to find a suitable miss the daily visits by doctors while we were us that we had to move on. My husband was placement, yet after every search, I felt more at the hospital and the palliative care ward. The adamant that he did not want to come home desperate. The situation seemed so grim. The feeling of being abandoned was felt the most by

because he would be a burden to me. overstay pressure made me decide that he should AND PHOTOS WORDS both of us.

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THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 YOUNG ADULT OUTREACH

singaporehospice “Live Well. Leave Well.” singaporehospice

– Voices of My HeART singaporehospice It is more important than ever to start conversations on planning for end-of-life care, even at a young age.

singaporehospice Songwriting Competition <艺心一意> contestants, who wrote songs centred n celebration of World partners outside the palliative care palliative care doctor, Jane. This book singaporehospice All smiles at the launch of third Life Book Dr. Guardian Angel with Guest- on SHC’s Life Book stories Hospice and Palliative sector at a public outreach. These is now available in four languages for of-Honour Mr Desmond Choo, Mayor of North I Care Day, Singapore were new start-ups such as Mind the public to download from https:// East District and Assistant Secretary-General of National Trades Union Congress Hospice Council Palace, which specialises in virtual singaporehospice.org.sg/lifebook/ (SHC) spent the afternoon of 5 reality experiences, and an avid Talking about and planning for end- singaporehospice October 2019 at *SCAPE in Orchard photographer displaying his photo- of-life matters can be challenging and Link to raise awareness among documentary works — just to name is something that is rarely discussed, singaporehospice Artists from Band of Doodlers young adults about palliative a couple. especially among the young. Many capturing the day’s events live! care and caregiving support Continuing our efforts to raise are often unsure of where to start or resources through creative arts. awareness about palliative care are hesitant to bring up the topic with singaporehospice Close to 700 visitors attended the through the community’s rich their loved ones. Through this event, singaporehospice event and were greeted by live repository of stories, the final SHC hopes to increase palliative care song and dance performances edition of the three-part Life Book awareness and encourage young at the Bandstand. There were series titled Dr. Guardian Angel was adults to engage their parents and also informative and interactive launched at the event. The story elderly grandparents in Advance Care booths put up by SHC’s member centres around 20-year-old teenage Planning. Death is inevitable; when organisations. For the first time, gamer Zach’s battle with cancer, we go is not up to us, but how we SHC collaborated with non-member with the constant support from his go is. singaporehospice A photo exhibition about A Day In The Life of an Occupational Therapist from St Luke’s Hospital. Photos taken by Shian Bang

singaporehospice A collaboration with singaporehospice Interactive activities at the Mind Palace — Experience a hospice booths of SHC’s partners! through virtual reality

singaporehospice singaporehospice singaporehospice

Clockwise from top left: Emcee Sebastian Tan, MADDspace, Buddhist Compassion Relief Tzu Chi singaporehospice Check out the crowd at Foundation (Singapore), the Bandstand singaporehospice Panel discussion with Dr Jamie SINGAPORE HOSPICE COUNCIL COUNCIL SINGAPORE HOSPICE Zhou, Ms Clara Su (nurse), Ms Alexis Yang Xinyan Urban Terrain Groovers, singaporehospice We’re always here to (cancer patient) and Mr Sherman Ho (moderator) Dover Park Hospice GEMS answer your questions ❤ Showchoir, YOKEZ ( on “Coping with Impending Death” after the movie 叶玉棂 screening of ) Me, Earl and the Dying Girl . WORDS AND PHOTOS AND PHOTOS WORDS

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THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 CONFERENCE 2019

Rethinking the quality of palliative care

A strong turnout of healthcare professionals for the annual National Palliative Care National Palliative Care Quality Improvement Quality Improvement Conference showed Conference 2019 the commitment to better meet the needs of Singaporeans.

he National Palliative Care Quality healthcare system. The participants benefited hospital to the community. Mr. Lee assured the Improvement Conference 2019 from the Q&A sessions and panel discussions audience that Singapore is on track to having The QI Conference T organised by the Singapore Hospice that filled all the tracks. 6,000 home palliative care places a year by 2020. Council (SHC) Quality Improvement In his opening speech, the Guest-of-Honour, Mr. Lee also shared that MOH is increasing the (QI) Steering Committee on 22 and 23 August 2019 Mr. Titus Lee who is Director of Aged Care affordability of palliative care services by upping brought together at Furama RiverFront Hotel, Singapore saw an Services at the Ageing Planning Office of subsidies and MediSave withdrawal limits, for attendance of almost 200 healthcare professionals the Ministry of Health (MOH), said that the example. Beyond accessibility and affordability, international and Singapore from 26 institutions. Ministry has been increasing the accessibility there is also a critical need to enhance the Themed “Rethinking Quality Improvement”, the of palliative care services across the various quality of palliative care in Singapore. conference featured presentations across four settings in the past few years, with a particular One of the speakers was University of experts in an effort to regroup tracks: rethinking quality indicators, rethinking focus on home and day hospice care in order Technology Sydney Professor of Palliative patient safety, rethinking approaches to problem- to better meet the needs of Singaporeans and Medicine David Currow who shared Australia’s and chart the way forward solving, and rethinking professionals’ place in the caregivers, and also to shift care beyond the best practices on improving healthcare at

SHC the national level, such as using national metrics to measure quality of care. Prior to the for quality improvement in

PHOTOS conference, Prof Currow had made site visits to Assisi Hospice and Tan Tock Seng Hospital, and facilitated discussion sessions on the use of palliative care. symptom assessment scales. The QI Conference brought together international and Singapore experts in an effort to regroup and chart the way forward on the second day of the conference to for quality improvement in palliative care. discuss challenges and strategies for building There were ample opportunities to share ideas QI capability and nurturing a culture for

From left to right; and learn from each other in order to promote quality improvement in the leaders. Dr. Lo Tong Jen, best practices. Many participants felt that the The Conference ended on a positive note Ms. Evelyn Leong, Adjunct Associate Conference had enhanced their knowledge and with SHC Chairperson Dr. Angel Lee inspiring Professor Tan Hui understanding of quality improvement. We hope us to continue our efforts to improve the Ling, Dr. Angel Lee, Mr. Titus Lee, the new insights will spur participants to make care for our patients. SHC will continue to Professor David sustainable changes in palliative care providers organise forums and workshops to serve Currow, Dr. Grace Yang, Ms. Sylvia Lee, and institutions for the benefit of our patients. as platforms for shared learning, and we

Ms. Chee Wai Yee, CARE QUALITY PALLIATIVE OF NATIONAL JEN, CHAIRPERSON TONG DR LO Recognising the importance of leadership in hope to have the continued support and Dr. Yee Choon Meng, Dr. Patricia Neo and driving a sustainable push for quality palliative participation from all in our palliative IMPROVEMENT CONFERENCE COMMITTEE; NUR RAIHAN, PROJECT EXECUTIVE FOR EXECUTIVE NUR RAIHAN, PROJECT COMMITTEE; CONFERENCE IMPROVEMENT PROGRAMME IMPROVEMENT CARE QUALITY PALLIATIVE NATIONAL Dr. Laurence Tan WORDS care and patient safety, a session was conducted care community.

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THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 BRINGING COMFORT

Right: It takes the combined efforts of HCA’s multidisciplinary team to Concerning ensure patients and their loved ones are supported on the end-of-life journey; opposite page: HCA Assistant Nurse Manager Tan Joo Eng examines a the end of life patient during a home visit. The HCA team establishes rapport with patients and their loved ones and Death is an inevitable part of life and with appropriate support and walks them through their preparation, dying well is accessible to all. HCA Hospice Care Nurse Educator preferred care options Amy Lim shares some of the common concerns patients and their families often have and how planning well can bring immeasurable comfort at the end of life. How do you address these concerns? These issues are not easy to address. It takes the concerted efforts of the entire multidisciplinary team and What happens on the first visit to a collective experience and wisdom patient’s home after referral to HCA to heal such pain and concerns. The Hospice Care? hallmark of palliative care is to be Depending on the urgency and well- sensitive and respectful. being of the patient and caregiver, the first home visit may be on the same How do you help patients and their day or as soon as possible — usually loved ones plan for end-of-life? within 48 hours after the referral has The most important and valuable been accepted. information to gather is what We hope to establish trust matters most to the patient at and confidence, forming a very this time. It is the end of their professional therapeutic relationship life journey — we listen to them Her husband was her caregiver on the first visit. The first home attentively on what finishing well and he, too, believed that she visit is very much about gathering means to them. would do well, given her wishes; nothing was ignored. Her valuable and relevant insights into the Professionally, we prepare them positive attitude. last days were exactly how she patient and his/her family. Having a for the likely possible symptoms Being attentive, sensitive and hoped for. Her husband, though good understanding of what matters that they may experience and the respectful were the keys to distraught, was able to cope with most to the patient and family is options that are available to manage success for the team. We listened the grief resiliently. fundamental and necessary. them. We encourage them to share to their hopes and dreams. We I would like to believe that Over the next visits, several their preferred plan of care with provided our strong support, the end is not as important as assessments — medical, nursing, us. We walk them through the care but we also seized whatever compared to the kind of journey psychosocial and spiritual — will be options that are available so that opportunity that came our way to we have made with patients and done to determine the level of care they can make informed choices. prepare them for the eventuality their loved ones. The richness required. In addition, a care plan will It brings immeasurable comfort of death. It was not so easy to of compassion, the quality of be discussed and established with the and healing benefits when patients convince her husband of the need respect, the undivided attention patient and family. and their loved ones are assured of to be prepared for the worst, as and the light that we shower vigilant support, available to them he held on to hope for the best. during the journey is enough for What are some common concerns round the clock. Death came quite quickly for the patient, and enough also to patients and their loved ones her, sooner than we expected heal those who are left behind, might have? Could you share a case you’ve — but we attended to all her including us. They are often worried and anxious encountered and how preparing about the physical and emotional ahead helped the patient and his/ suffering that may occur at the end of her family? life. Patients are fretful about losing I had a 38-year-old female patient We provided our strong support, but their dignity and becoming a burden who was referred to HCA with a to their loved ones. prognosis of three to six months. This sense of burden alone can CARE HCA HOSPICE It was difficult to discuss end-of-life we also seized whatever opportunity drive many patients to despair with a matters with her and her husband deep desire to hasten death, so as to initially, even though her oncologist free their loved ones from fatigue and had told her that all treatment that came our way to prepare them misery. Financial challenges are often options had been exhausted and

high on the list of concerns as well. AND PHOTOS WORDS that she had a short prognosis. for the eventuality of death.

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THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 SWEET REMEMBRANCE A warm farewell Opposite page, right: The setting up of the Peace Room and memorial table allows with heart for the warm send-off of a departed resident The pastoral care staff of St Joseph’s Home put loving thought into giving residents a final send-off with the Peace Room and the memorial table. The heart of a hen you’re working witnessing and talking about death As a pastoral care staff, I visit in a hospice, the of others, we can start to prepare these two places often. I have seen grieving family and W topic of death is for our own death. how the death of loved ones can not too far away. Here at St Joseph’s Home, the affect the living. My work has taught Memorial services and funerals Peace Room and memorial table me valuable lessons in preparing for friend is even more are part and parcel of life. are important places for opening one’s death. We naturally pay attention to up conversations about death. The giving residents a good death — Peace Room is the resident’s final THE HOME IS WHAT HOUSES difficult to hold. It preferably without pain and with resting place. It is positioned at the THE HEART family. What is as important but front door and where residents Our executive director, Sr Geraldine is...what I consider often overlooked is that a good wait for the undertaker to arrive. Tan, once said: “It is easy to house death of a loved one is just as The memorial table sits outside the a person, but not easy to house important to the living. bedrooms of residents who have a heart.” sacred about my job. Being able to freely discuss the passed away. It is a place for staff, The heart of a grieving family topic of death brings that topic to volunteers and fellow residents and friend is even more difficult to the forefront. It normalises death to spend a moment of silence in hold. It is what challenges me in sacred about my job. If anything, I that the resident has passed away relationships with are the ones who as a natural season in life. In respect of the resident. my job, and also what I consider have found that being able to see peacefully. Because of that, we matter the most. the resident rest peacefully brings encourage residents to think about comfort to those who are living and what their resting place would be. WORDS SPOKEN IMPERFECTLY witnessing that moment. This is ARE BETTER THAN THOUGHTS where the Peace Room comes in. THE PEOPLE AROUND YOU LEFT UNHEARD The Peace Room is where MATTER MOST As pastoral care staff, we are called residents, wheeled down in their Aside from visiting the resident upon when residents are in their own beds, wait for the undertaker and their loved ones in the Peace final hours and we have the privilege to arrive. This room is positioned at Room, the pastoral team also sets of accompanying them. We would the front door — not tucked away at up a memorial table. There, staff, sit with them, sometimes offering the backyard of the Home. It sends volunteers and fellow residents an assuring word or a comforting the message that residents deserve gather for a moment of silence. touch. When family or friends visit, the same dignity and respect when There is a guestbook available for we encourage them to speak aloud they come, when they leave and anyone to pen their thoughts. There any words that they have in their in the days between. Having it at are also words of prayers and well- hearts. It could be to express their the front door, in clear view, makes wishes available for both Catholics gratitude or to seek forgiveness. it easier to open up conversations and non-Catholics to read aloud. Even though residents are getting about death with the residents. It is a sacred space that respects weaker, their hearing remains the In the Peace Room, there are the relationships that the residents last to leave. also plush turquoise sofas, flower had with those around them. We In my 40 years as a pastoral care vases and lavender candles. The have seen staff who has taken care staff, I have seen residents let out room is intentionally decorated of a particular resident for more their last breath after they have like a home to bring warmth and than a decade stop for a moment heard the voice of their beloved ST JOSEPH’S HOME ST JOSEPH’S comfort. Even though the resident alone. They stay at the memorial spouses. I have also journeyed with

PHOTO has already passed away, the table, internally acknowledging the loved ones who dwell on the what ambience of the Peace Room is memories shared with that resident. ifs, after a loved one has passed important to the family and friends I realise that your date of on. In preparing for death, it is

ROSE LEE ROSE who are visiting. When we usher birth or your date of death is important to speak the final words loved ones into the room, we see not as important as the dates in of gratitude, forgiveness and humble

WORDS WORDS that they are comforted knowing between. The people that you form apologies before it is too late.

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THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 DIVINE GRACE Staring death in the face everyday Since 2017, Ms Chua Chiew Poh has been working as a full-time assistant chaplain with MWS, journeying with MWS Home Hospice patients through their final days. We find out more about how she helps patients plan and prepare for the end of their lives spiritually.

eath is no stranger to Methodist much uncertainty in their final moments. I have Welfare Services Assistant Chaplain come to realise that believing there is a god who D Ms Chua Chiew Poh. Her current created us and who loves us gives patients peace comfortable relationship with death in their final moments. An awareness that they began when she lost her husband to pancreatic are not alone and that God is with them gives cancer before the age of 40. Although she was them strength and grace to bear it. thriving in the property finance industry then, she felt called into hospice work, and in 2010, Do you have any advice for patients approaching she became a regular volunteer with MWS their final stage of life? Home Hospice. This advice is for everyone: we need to live life planning for death. Regardless of where you are What happens in a typical visit to an MWS Home in life, you should draw up your will, do your Hospice patient? Advance Care Planning, and make a decision I listen. I let them talk about their lives and share regarding the Do-Not-Resuscitate order. Although their stories, with no judgment from me. When we are aware that death happens to everyone, they cry, I am there to encourage them, and I seeing people dying scares us and we often do not sometimes cry with them. believe it will happen to us. I have learned that life I always listen carefully and intentionally is like a mist which can evaporate any time. If we to their stories, so I can point out the good in are aware that everything in life, even life itself, is their lives, the blessings they have received, and a gift from the divine, we will be more prepared remind them of the moments they spent with for death. their loved ones. Most of our patients either have a god, or know At the final stage of their life, hospice I bought her, she smiled. The week after, she there is a god. I pray with them and encourage patients may succumb to depression and called me to her bedside, and told me she them to give thanks to God for their lives and for grief. Being prepared, viewing life and death loved me. the blessings they received. Acknowledging their as something we all go through, and being I believe God’s love carried her through. belief brings them comfort. thankful for every blessing we receive in our She came in depressed but when she passed lives every day helps. We are all gifts to the on, she was at peace, and her hair was How does belief in a higher power help them on people around us, and the impact we leave glowing. She was not alone at her moment their deathbeds? “I let them talk about their is long-lasting, even after we are gone. of passing because God was with her. I ask every patient how they think God has helped them in their lives. A commonly told Do you have a memorable story you would What are some challenges you face as a story is about their darkest moments, and how lives and share their stories, like to share? hospice chaplain? in those moments, they are always granted a I had an end-stage Christian patient who I experience deep regret when I am not miraculous strength that carries them through. with no judgment from me. was in pain, depressed, and unwilling to alerted when my patients pass on. I question Everything points to divine grace, and a engage or open up to us. After a few weeks, if they had anyone accompanying them on reminder that we are all loved by a higher being. I received a call from the medical social their final journey, or whether they were

Dying is a lonely journey which one must When they cry, I am there worker, asking me to visit her to pray as lonely. I hope I spent sufficient quality time Top: Assistant embark on alone. The process of dying also she was near the end. As we prayed, the with them and that they got to experience Chaplain Ms Chua Chiew Poh often opens up unhealed wounds, which makes presence of God came and surrounded us. God’s love. to encourage them, and I encourages patients

NICOLE ANDREA TAN, EXECUTIVE, COMMUNICATIONS AND ENGAGEMENT AND ENGAGEMENT COMMUNICATIONS EXECUTIVE, ANDREA TAN, NICOLE to be thankful for it scarier. SERVICES METHODIST WELFARE She then requested for a red shawl or dress My goal is to recruit more volunteers so their blessings and I have seen patients who do not believe in a to be placed in her coffin, so I went to shop that everyone has someone to journey with put their trust in a PHOTO higher power or divine being, and there was so sometimes cry with them.” WORDS for one. When she saw the bright red shawl them in their final moments. higher power

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THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 DUE DILIGENCE

Planning well for the future of our loved ones “Here is another CPF Board query…” I was passed a request for a medical report from the Central Provident Fund (CPF) Board. Decisions made at the end of life can have a big impact, long after a person has passed away. This became very clear to us with a patient we previously had on our ward. Suffering from lung cancer which had spread to the brain, he had difficulty expressing himself with words and in writing. Previously divorced, he knew who he wanted to leave his assets to after he had passed away. That was his main preoccupation while he was with us: to ensure that the people he cared for would be adequately provided for with the assets he was leaving behind. With the help of a lawyer, he was able to make his wishes known and signed a will while on the ward. Despite his speech difficulties, we were able to assess his decision-making capacity on that same day and documented this in his case notes. Some months after he passed on, we received news that his ex-wife was challenging the will he drew up while he was with us. We felt aggrieved with the turn of events. Thankfully, we had taken pains to document his preferences, concerns and reasons, and he was consistent in his decision making. Section 3(2) of the Mental Capacity Act states: “A person must be assumed to have capacity unless it is established that he lacks capacity.” If there is doubt of this due to illness, then a person may need to be assessed if they have decision-making capacity. A two-stage test for mental capacity is provided in Section 4(1) of the Mental Capacity Act. Step 1: Is the person suffering from an impairment of, or disturbance in, the functioning of the mind or brain? Step 2: If yes to step 1, does the impairment or disturbance cause the person to be unable to make a decision when he needs to? For the patient, there was every reason for concern as he had a tumour in the brain, potentially affecting his decision-making capacity. Under the Red WheelChair” when we need to assess So, how do we assess this? We go “ someone’s decision-making capacity. They have to be able to: 1. Understand the information given regarding the decision. Examples: “What are you doing?” “Why are you doing this (e.g. the will)?” 2. Retain the information given. It is sufficient if the person remembers the information for a short period of time as long as he can remember it long enough to understand it, weigh it up and communicate his decision. 3. Weigh up the information as part of the process of making the decision. Examples: “What happens if you…?” “What happens if you do not…?” “Is there another way to do this?” – this may be as simple as ensuring that hearing or 4. Communicate the decision to others visual aids are used. In this way, we are able to allow each individual to make choices and still express their autonomy. When in doubt, we refer to a psychiatrist. For our patient, the discussion with him was through drawings and many sessions of patient “listening”. He was able, through his limited mobility and difficult speech, to express what he wished consistently. This happened in tandem with trying to engage his family and working through family conflicts in order to ensure a good “closure” for him. This situation served as a reminder of the role we play. We live in hope that the patient’s wishes will be honoured. Of course, we would much rather that the patient had not left it so late when it became so challenging. However, the sad fact remains, many people simply do not plan ahead when they are well, leaving matters to the very end when they are unwell. In a palliative care ward, failure to carry out such anticipatory planning is, unfortunately, rather common. It is par for the course for us to receive a letter from the CPF Board, months after a patient has passed away, to ask if the patient had the decision-making capacity to make such nominations just before they passed away. It is due diligence on the part of CPF Board, but it can be unnecessary stress for the family. Dr Loi Jun Yi Resident Physician, St. Andrew’s Community Hospital

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THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020 CALENDAR Upcoming Events

9 JAN 2020, THURS SHC Multidisciplinary Palliative Care Tips for Caregivers Forum: Enhancing Resiliency of DR JAMIE ZHOU Care Providers in the Face of Death, Consultant, Division of Supportive and Palliative Care, National Cancer Centre, Singapore Dying and Suffering Speaker: Professor Susan Gerbino Some choose to hide the dire diagnosis from their loved ones so as to protect them from and Dr Esther Chachkes negative thoughts and emotions, but it also prevents them from preparing for death. You Time: 1:00pm - 2:00pm ask, “Is preparing for death more important than keeping our loved ones worry-free?” Venue: Assisi Essery Hall Imagine this situation: You are getting weaker, going through various medical tests, Contact: secretariat@ procedures and hospitalisation with everyone telling you that “everything is ok”. But singaporehospice.org.sg / 6538 2231 the fact is, you don’t feel ok. Even the doctors are speaking to your family, not you. 15 – 16 FEB 2020, SAT-SUN By the time you know that something is seriously wrong, you have no strength or Singapore Cancer Society time to settle other matters and find closure in relationships. – TalkMed Relay For Life 2020 While keeping information from the person usually stems from love, it can also take Join as a team or individual to away the dignity and respect of a loved one’s sense of control. Here are some tips on walk or run overnight around the how to start speaking to a loved one about their illness. track, to symbolise that no one fights cancer alone and that the #1: “Do you think your illness is serious?’’ fight against cancer never sleeps. Most patients are aware of how serious an illness is based on how their body feels. Event highlights include live If they are aware that it is serious, you can explore further about why they think so. performances, workout sessions Respond to the sharing by reassuring them about your unreserved support, “Whether it and carnival activities. This 15-hour is serious or not, we will be there for you.” overnight event celebrates cancer survivors and caregivers, and #2: Consider this: Who can they confide in if the ‘subject matter is closed’? remembers lost ones to the disease. Along with the secrecy of hiding the condition, the patient is often encouraged to be Time: 6pm (15 Feb) – 9am (16 Feb) positive and “not think too much” since “everything is ok”. However, this often leaves Venue: National Stadium, Singapore Sports Hub them feeling isolated with no outlet to express their worries and fears. In fact, getting Registration: increasingly weak without any condition to attribute it to may be more frightening https://scsrelayforlife.sg/ than knowing the actual illness. (closes on 24 Jan 2020)

EDITORIAL COMMITTEE

Editor Christina Wee Associate Editor Anne Loh

Assisi Hospice Angela Yeo Bright Vision Hospital Muhammad Azhar bin Abdul Rahim Buddhist Compassion Relief Tzu Chi Editorial Team Tzu Chi Foundation (Singapore) 1 Lorong 2 Toa Payoh #07-00 Changi General Hospital Rasidah bte Alias Braddell House Dover Park Hospice Jenny Goo HCA Hospice Care Toh Wei Shi Singapore 319637 Khoo Teck Puat Hospital Ong Min Li T: 6538 2231 Lien Centre for Palliative Care Jessica Goh Siew Hong E: [email protected] Metta Hospice Care Sandy Lim MWS Home Hospice Nicole Andrea Tan www.singaporehospice.org.sg Singapore Cancer Society Kumudha Panneerchelvam Singapore Hospice Council Sheena Koong St Andrew’s Community Hospital Peh Lay Koon Contents are not to be quoted or reproduced without the prior St Joseph’s Home Shereen Ng written permission of the Singapore Hospice Council. St Luke’s Hospital Chua Hwee Leng Tan Tock Seng Hospital Dr Ho Si Yin Tsao Foundation Desiree Lim

Design Christian Subrata Printer Yung Shung Printrade Pte Ltd

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THE HOSPICE LINK • DECEMBER 2019 – FEBRUARY 2020