End of Life

Key Dates

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Definitions and Scope

Palliative Care The World Health Organization (WHO) defines palliative care to be: an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual care.

End-of-Life Care Defining a period of time to be called “end of life” is problematic, and requires an acknowledgement of the chronic nature of many eventually fatal illnesses—such as congestive heart failure and end-stage renal disease—as well as the trajectory of dying associated with dementia and frailty in old age (IOM 2003: 55).There is no exact definition of the interval referred to as end of life, and is defined by the regulatory environment rather than by scientific data, which shows it is not possible to accurately predict an individual’s time of death (NIH 2004: 5).

We adopt the broad definition of end-of-life that the Institute of Medicine (IOM) does, to include “the period during which an individual copes with declining health from an ultimately terminal illness, from a serious though perhaps chronic illness, or from the frailties associated with advanced age—even if death is not clearly imminent” (IOM 2003: 22). This means going beyond cancer to encompass other life-limiting illnesses, such as congestive heart failure, end-stage renal disease, chronic obstructive pulmonary disease, liver failure, and dementia, which present their own unique challenges in end-of-life care (See NIH 2004).

Besides moving away from a definition that has acute conditions like cancer at its heart, we take on a view that the end-of-life issues matter to those with more chronic and debilitating conditions with different death trajectories. We also adopt the term ‘end-of-life’ to refer to broader social, legal, and spiritual aspects of care related to the quality of death. Therefore, end-of-life care includes palliative care and the pain and symptom management that lies at the core of it, but will also encompass other areas such as life closure, last wishes and post-demise support.This is similar to the definition that the Lien Foundation uses in The Quality of Death: Ranking of End-of-Life Care Across the World.

Palliative care in Singapore began 20 years ago as a grassroots movement caring for patients at home. In 2007, palliative medicine had been recognised as a medical subspecialty by the Ministry of Health (MOH), and hospice care services provided by the Voluntary Welfare Organisations (VWOs) had expanded beyond home care to inpatient care and day care. Now in Singapore, most people receive hospice and palliative care at home. In-patient hospice care becomes necessary only when the patient cannot be cared for at home. This is in line with the national policies of encouraging aging-in-place and family as the first line of support.

Moving towards services for non-cancer patients Historically, palliative care has been for cancer patients, but recently, there was more recognition on the need to reaching out and helping non-cancer patients . Professionals we interviewed also reported seeing more non-cancer patients over the years. In response to the need, Ministry of Health started to fill in the gap in 2011. Agency for Integrated Care (AIC) has started Holistic care for Medically Advanced Patients (HOME) programme which looks after non-cancer patients, such as end-stage COPD and heart failure patients.

Moving towards services to enable patients who wish to die at home According to a survey, 83% of respondents aged 65 & above preferred to pass on at home, and even for respondents below 65 where death was not a concern for them yet, 50% of them expressed the will of passing away at home. In our study, it was reported that most patients preferred to die at home and wanted to remain at home as long as possible. Isolated seniors with end-of-life illnesses need more help and support with end-of-life arrangement in order to achieve the wish of passing away at home. Our findings concur with the other research findings that the demand for home hospice care will definitely go up in an ageing society like ours and with many who wishes to pass on at home.

Target Population: End of life issues faced by vulnerable seniors

We define vulnerable seniors to be those who are old, poor and have limited or no family support. There are at around 20,000 seniors who are poor and may not have adequate family support based on triangulating information from the Housing and Development Board (HDB) on seniors living alone, living in rental flats, earning less than $1000 a month. Adopting our broader definition of end-of-life care—given that these are elderly persons—they will have end-of-life issues whether they have been diagnosed with terminal illnesses or not.

There are about 25,000 seniors living in rental flats in 2008 (old and poor). About 20,000 of seniors living in HDB flats who are still working earn less than $1,000 a month in 2008 (old and poor). About 22,000 seniors are living alone in HDB flats in 2008 (old and no family support). Therefore, we estimate that there are at least 20,000 seniors who are poor and may not have adequate family support.

See HDB publications:

• Well-Being of Elderly (see page 130 onwards)
• Profile of HDB Elderly and Future Elderly Resident Population (page 26)

Client Segments

[Eg. For at risk youth, some could have behavioural problems and be beyond parental control. Others could merely be disengaged and bored in school. Because it seems like different engagement strategies can be customized to these sub-types, it may make sense to segmentize.]

Possible ideas: Individuals living alone vs Individuals living with family;

Size of Target Population

We estimate that about 20,000 vulnerable seniors will need end of life care, and the demand of end-of-life care for vulnerable seniors will continue to increase over the years. Depending on the specific indicator used for wealth, there were about 18,000-25,000 low-income seniors in Singapore in 2008. There were about 22,000 seniors who were living alone in HDB flats in 2008, and many of these had no family support.

Furthermore, with the rapidly aging population that 1 out of 5 will be aged 65 years old and above by 2030, seniors living alone may rise from 35,000 now to 83,000 by 2030.

Palliative Care System in Singapore

"Hospice and palliative care is a holistic approach to caring for patients going through serious illness. It aims to meet all needs (physical, emotional, psychosocial and spiritual) so as to alleviate suffering and maximise quality of life for patients and their loved ones" (Definition from Singapore Hospice Council).

Why do we need more palliative care in Singapore? By 2030, one in four citizens will be 65 or older, with the top three causes of death being chronic, or related to chronic, illness (Cancer - 29.7%; Pneumonia - 19.4%; and Heart Diseases and related conditions - 22.8%).

Financial Cost of Palliative Care The cost of palliative care is estimated to be S$290 per day for inpatient care, less than S$100 per day for home consultations and S$12 per day for day hospice care. Government subsidies are available - up to S$200 per day may be used from the Medisave. Financial assistance from Voluntary Welfare Organisations (VWOs) is also available for patients in need.

However, 50% if Singaporeans are unaware of hospice palliative care. In particular, awareness is low among the older Chinese Singaporeans - only one in four claim to be 'aware'.

Desired outcomes - What is a Good Death

A good death is being able to choose conditions of your own dying. For most, this means dying at home surrounded by loved ones and in relatively pain free conditions.

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Past Advocacy and Research in Singapore

Policy-related Research

Action Plan 2016 (Institute of Policy Studies (IPS))

• Scenario-planning project involving about 100 experts from different domains
• One of key strategies developed was to initiate a National Conversation about end-of-life issues and develop an End-of-Life Toolkit to equip seniors with the necessary information in their decision-making process
• Factors like rising life expectancy, growing numbers of educated elders, technological advances in healthcare and increasing acceptance of the concept of patient autonomy suggest the time is ripe for a cross-sectoral, national initiative on end-of-life planning

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Strengthening Safety Nets for the Elderly should be a Societal Concern (IPS Commons, 2016)

Suggested Actions:

• Means-tested and limited unemployment benefits scheme to provide elderly workers with financial buffer as they seek/train for a job more suitable for their age and physical ability
• Raising the Silver Support Scheme (SSS) payout, which seems too low for our current cost of living
• Government to amend the Constitution and increase the percentage of returns that it can spend in order to finance 1 & 2

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Quality of Death Index: Ranking Palliative Care across the world (Economist Intelligence Unit, 2015)

• Commissioned by the Lien Foundation
• Based on scale across five categories: Palliative and Healthcare Environment, Human Resources, Affordability of Care, Quality of Care, Community Engagement
• UK has the best quality of death, and rich nations tend to rank highest. This is due to UK’s comprehensive national policies, the extensive integration of palliative care into its National Health Service, and a strong hospice movement.
• Other rich Asia-Pacific countries have rankings in the top 20: Taiwan at position 6, Singapore at 12, Japan at 14 and South Korea at 18
• Countries with a high quality of death share several characteristics:
  • A strong and effectively implemented national palliative care policy framework;
  • High levels of public spending on healthcare services;
  • Extensive palliative care training resources for general and specialised medical workers;
  • Generous subsidies to reduce the financial burden of palliative care on patients;
  • Wide availability of opioid analgesics;
  • Strong public awareness of palliative care.
• Less wealthy countries can still improve standards of palliative care rapidly e.g. Panama is building palliative care into its primary care services, Mongolia has seen rapid growth in hospice facilities and teaching programmes, and Uganda has made huge advances in the availability of opioids.
• National Policies are vital for extending access to palliative care
• Training for all doctors and nurses is essential for meeting growing demand
• Subsidies for palliative care services are necessary to make treatment affordable
• Quality of care depends on access to opioid analgesics and psychological support
• Community efforts are important for raising awareness and encouraging conversations about death e.g. Dying Matters Coalition in UK, informal meetings called Death Cafes (also in Singapore)
• Palliative care needs investment but offers savings in healthcare costs
• Demand for palliative care will grow rapidly in some countries that are ill-equipped to meet it e.g. China, Greece, Hungary

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National Guidelines for Palliative Care and Interpretation Guide (Singapore Hospice Council, 2015)

• Help service providers better understand the requirements and desired outcomes of the National Guidelines for Palliative Care so they can put in place appropriate processes and practices to achieve these aims

1. Timely Identification: People approaching the end-of-life are identified in a timely manner
2. Reducing Barriers to Care: Palliative care is available for all people based on clinical need, regardless of diagnosis, age, gender, financial means, ethnic and cultural background, and care setting
3. Coordinated Care: Care is delivered in a coordinated manner that ensures continuity of care across settings and over time
4. Holistic Assessment and On‐going Care Planning: Holistic assessment and on‐going care planning are implemented in an interdisciplinary manner to meet the changing needs and wishes of patients, caregivers and families.
5. Advance Care Planning: All patients at the end of life have access to Advance Care Planning (ACP).
6. Patient-Centred Care: Patients receive care that is customized to their unique needs and preferences as informed by holistic assessments.
7. Care in the Last Days of Life: Care is taken to fulfil the needs of patients in the last days of life, as well as those of their caregivers and families.
8. Caregiver Support: Caregivers of patients with life-limiting illness face significant stress in their roles, and their own practical and emotional needs need to be supported.
9. Bereavement Care: Family members affected by a death are offered timely bereavement support appropriate to their needs and preferences.
10. Qualified Staff and Volunteers: Care for those approaching the end of life is delivered by staff and volunteers (where applicable) with the appropriate qualifications and skill mix for the level of service offered, and who demonstrate ongoing participation in training and development.
11. Staff and Volunteer Self-­Care: Staff and volunteers reflect on practice, maintain effective self-­‐care strategies and have access to support in dealing with the psychological stress associated with working among the terminally ill and bereaved.
12. Access to and Use of Opioids: Patients at the end of life should have access to opioids for symptom control, with guidelines and processes in place to ensure safe and effective use.
13. Clinical Quality Improvement: The service is committed to improvement in clinical and management practices.

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Singapore's Ageing Population: Managing Healthcare and End-of-Life Decisions (Chan, 2014)

• This edited volume covers, among other chapters:
  • A Study of older Chinese men living alone in Singapore
  • A Study of caregiver burden for the terminally ill
  • Singapore law that is related to end-of-life
  • The decriminalisation of physician-assisted suicide

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Caring for Singaporeans in the Long Term (IPS Commons, 2014)

• Pioneer Generation Package (PGP) provides comprehensive solution for many acute and primary healthcare needs of older Singaporeans. *However, there is a spectrum of care all the way through to intermediate and long-term care services (ILTC). The financing system for ILTC services is less well developed than it is for healthcare.
• Elderly with monthly household income per capita above $2,200 and not covered by Eldershield or Interim Disability Assistance Programme may have to rely on their own out-of-pocket payments to finance their own and their elderly parents' long-term care needs
• Eldershield payouts have a maximum duration of six years. A number of the disabled elderly could face the prospects of outliving their Eldershield payouts.
• Eldershield's fixed monthly payouts are not adjusted for inflation, which would erode the purchasing power of the Singapore dollar.
• Since Eldershield is administered by three private insurers - Aviva, Great Eastern and NTUC Income - and cover only less than one-third the size of the total 3.5 million MediShield policyholders, there might be sub-optimal risk-pooling. Premium rates might be set higher, or coverage is inadequate, or scheme may not be sustainable in the long-run.
• May be better to consolidate the administration of the basic Eldershield within a government agency like Central Provident Fund (CPF) Board, similar to the reforms for MediShield done in 2005.
• Extending coverage to those in the Pioneer Generation but who are uninsured by ElderShield would require another likely substantial amount to be set aside.

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Economic Impact Analysis of an End-of-Life Programme for Nursing Home Residents (Teo et al, 2014)

• This paper is a study to evaluate the economic impact of Project CARE at the end-of-life for residents involved in the programme vis-a-vis the usual end-of-life care
• With funding from the Ministry of Health, and started by Tan Tock Seng Hospital, Project CARE deploys three doctors, seven nurses and a medical social worker to the nursing homes daily, where they assess nursing home residents based on the severity of their conditions and risk of mortality and treat the residents accordingly. They also meet residents and families to discuss an Advanced Care Plan.
• Results showed that Project CARE cases demonstrated per-resident cost savings of SGD$7129 (confidence interval: SGD$4544-SGD$9714) over the last 3 months of life and SGD$3703 (confidence interval: SGD$1848-SGD$5557) over the last month of life.
• This study thus demonstrated substantial savings associated with an end-of-life programme.

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Death Attitudes Survey (Lien Foundation, 2013)

• Increased desire for "die-loges" amongst Singaporeans - 71% of respondents saw a need for such conversations, with 91% of respondents aged 50-59 years old and 90% of respondents aged 60 and above wanting more public education on hospice palliative care
• 77% of Singaporeans wish to due at home, but government statistics show that only 27% of deaths in Singapore take place at home
• 64% of Singaporeans view hospice palliative care as expensive
• An earlier study conducted from 2008 to 2009 found that 50% of respondents had not spoken to terminally ill individuals whom they knew personally, with primary reasons given as discomfort and ignorance on the issue

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*Healthcare for the Elderly: Can and should we do more? (IPS Commons, 2013) Suggested Actions:

• Expand MediShield to include all Singaporeans regardless of age or pre-existing illnesses
• Ensure all Singaporeans can pay the premium i.e. higher premiums for the extreme elderly or those with pre-existing illnesses
• Limit individual’s risk of medical bankruptcy by putting a cap on what they have to pay as their share of the total bill

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Hospitable Hospice: Redesigning Care for Tomorrow (Lien Foundation & Ang Chin Moh Foundation, 2013)

• A guide to understanding what hospice care is currently in Singapore - its characteristics, challenges and aspirations as an essential service within the context of end-of-life care
• An invitation to rethink how hospice care should be for future generations

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Improvements in End-of-Life Care with a Protocol-based Pathway for Cancer Patients Dying in a Singapore Hospital (Academy Medicine of Singapore, 2012)

• This study investigated whether the adoption of a modified Liverpool Care Pathway (LCP) in Singapore hospitals will provide better quality end-of-life care for cancer patients.
• After introducing and educating the medical oncology team and ward nurses on a modified LCP, the LCP was adopted and used on 30 patients.
• The study revealed promising results in terms of improved physical comfort and concluded by suggesting that this care pathway be extended to other settings in order to maximise benefits to patients dying from other causes.

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Report on the National Strategy for Palliative Care (Lien Centre for Palliative Care, 2011)

• Through a study of the current palliative care landscape in Singapore and the world, this report identified areas of improvements which include:
  • Coordination of Care
  • Recruitment of Manpower
  • Strengthening of Capabilities
  • Establishing Standards of Care
  • Promoting Public Awareness on End-of-Life Issues
  • Leadership to develop the Palliative Care Sector

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*Appropriate Care Guide (ACG) (Ministry of Health) Under the Ministry of Health (MOH), ACG was created:

• Topics raised by relevant professional bodies/individuals
• The first two Care Guides were released on 3 July 2017 as part of the War on Diabetes, titled "Managing Pre-diabetes" and "Oral glucose-lowering agents in type 2 diabetes mellitus (T2DM)"
• Presence of an expert group (total of 12 health professionals) to ensure accuracy and relevance of recommendations for users
• Reviewed and endorsed by professional bodies like Academy of Medicine and College of Family Physicians
• Released to the public after 8-12 months from the start of creation
• Reviewed every three years for currency and new developments

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The Policy Implications of Dying: End of Life Care (Civil Service College, 2007)

• To study to what extent governments should advocate and regulate end-of-life care and how
• The paper discusses the complexities and dilemmas surrounding end-of-life care and the assumptions behind them
• The paper also provides four references and summaries of studies of end-of-life issues faced by other countries, thereby offering foreign perspectives that Singapore healthcare providers can compare and learn from

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Psychological, Medical Aspects

International Conference on Clinical Ethics and Consultation (ICCEC) held in Singapore, 2017

• One main theme of the conference is to examine changing attitudes to end-of-life care
  • End-of-life decision making factors, such as mental capacity, quality of life, and vulnerability.
  • Clinical, cultural and institutional practices and context that shape patients preferences and beliefs at the end-of-life.
  • Tools for making healthcare decisions before the patient loses capacity and palliative care.

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Death among Elderly Patients in the Emergency Department: A Needs Assessment for End-of-Life Care (Yash Pal et al, 2017)

• This study aimed to determine the incidence and nature of death among patients aged more than 65 years in a hospital emergency department in Singapore and characterise their trajectories of dying based on retrospective study
• Among the 197 patients who died in the emergency department, although 46.5% had a premorbid functional limitation, only 14.9% of patients had a pre-existing resuscitation status and 74.3% received aggressive resuscitation measures
• Thus, many patients already have chronic illness trajectories of dying. There needs to be improvement in EOL care provision for dying patients and their families in the emergency department

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Differences in Attitudes to End-of-Life Care among Patients, Relatives and Healthcare Professionals (Ang et al, 2016)

• This study explored a and compared the differences in attitudes toward end-of-life care among patients, relatives, doctors and nurses in a tertiary hospital in Singapore
• Results showed that patient and relatives differed significantly in their preferences on end-of-life care, including cardiopulmonary resuscitation, intubation, nasogastric tube feeding and the use of antibiotics
• Results also showed that doctors, nurses and relatives demonstrated differences in preference between end-of-life care for themselves and for their loved ones
• There was also a difference between patients and doctors in their decisions on CPR and intubation
• This study thus demonstrates the importance of early planning for end-of-life care

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Comparison of Preferences for End-of-Life Care among Patients with Advanced Cancer and their Caregivers: A Discrete Choice Experiment (Malhotra et al, 2015)

• Study of 211 patients with stage 4 cancer and their informal caregivers
• This study aimed to quantify the willingness of patients with advanced cancer and their caregivers to pay to extend the patient's life by one year
• It also compared their willingness to pay for other end-of-life improvements
• Results highlighted the importance of pain management, supporting home deaths, and addressing other end-of-life issues in addition to efforts to extend life
• Results also showed the need to elicit patient preferences during treatment decision-making as opposed to relying on caregiver input

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(Sedation) Addressing the Concerns Surrounding Continuous Deep Sedation in Singapore and Southeast Asia: A Palliative Care Approach (Krishna, 2015)

• Continuous Deep Sedation is often resisted due to its continued association with physician-associated suicide and/or euthanasia
• This paper argues that a holistic review of the patient's situation and the engagement of a multidisciplinary team guided by clearly defined practice requirements that have been lacking in current guidelines will help to overcome prevailing objections to this practice and allow for the legitimization for this process

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The Changing Face of Personhood at the End-of-Life: The Ring Theory of Personhood (Krishna and Yee, 2015)

• This study used a case of a 42-year-old Malay Singaporean who had been a caregiver for her husband throughout his cancer and then became a cancer patient herself after his passing
• This case explores her changing and multifaceted conceptions of personhood throughout her life and illness, and discussions about end-of-life care
• She adopted different conceptions of personhood (Innate, Individual, Relational and Societal), which are interlinked and varied in terms of depth and conviction according to the various times in her life and illness

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The Influence of the Family in Conceptions of Personhood in he Palliative Care Setting in Singapore and its influence upon Decision Making (Krishna et al, 2014)

• Personhood is made of four equally important closely-related dimensions that combine to proffer the Ring Theory of Personhood:
  • Innate Personhood - The belief that all persons irrespective of their clinical condition and level of development are deserving of personhood
  • Individual Personhood - Consciousness-related faculties
  • Relational Personhood - Relates to the social and familial connections important to the person
  • Social Personhood - Relates to the roles played in society

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(For Caregivers) Predictors of Change in Quality of Life of family Caregivers of Patients Near the End-of-Life with Advanced Cancer (Leow et al, 2014)

• This study examined the change in the quality of life of family caregivers of home hospice patients in Singapore near the end-of-life with advanced cancer from baseline to after 2 months
• Regression analysis showed that
  • Caregivers with higher social support satisfaction and who had a religion predicted higher quality of life
  • Caregivers of patients diagnosed with breast cancer and cancer in the female reproductive organs predicted lower quality of life

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Good End-of-Life Care: Perspectives of Middle-Aged and Older Singaporeans (Malhotra et al, 2012)

• 9 focus groups with a total of 63 participants to discuss end-of-life preferences
• The paper identifies 8 components of good end-of-life care:
  • Physical comfort at the end of life
  • Avoiding inappropriate prolongation of the dying process
  • Maintaining sensitivity towards religious and spiritual beliefs
  • Avoiding burden on the family
  • Avoiding expensive care
  • Being cared for by a trustworthy doctor
  • Maintaining control over care decisions
  • Achieving a sense of completion

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(For Healthcare Professionals) Factors considered in End-of-Life Care Decision Making by Healthcare Professionals (Foo et al, 2012)

• This study explored the importance of factors influencing the end-of-life care decision making of healthcare professionals (physicians and nurses) in Singapore
• Results showed that end-of-life decision making by healthcare professionals appears largely patient-centred, as they considered the patients' wishes, the clinical symptoms and patients' beliefs highly as factors for consideration
• However, familial determination still wields significant influence, as results showed that healthcare professionals would abide by the family's wishes when the patient loses capacity even if the patient's previously expressed wishes are known

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Spiritual, Religious Aspects

Christian and Catholic Beliefs

Healthcare Christian Fellowship (Prof. John Wyatt, National University of Singapore, 2017)

• Prof John Wyatt is Emeritus Professor of Neonatal Paediatrics, Universal College London
• Held at the Clinical Research Centre, NUS, attended by more than 100 healthcare workers from different institutions, including palliative care workers, doctors, nurses and church members
• Combined meeting with Christian Medical and Dental Fellowship
• Addressed the issue of Ethical Dilemmas in End of Life Issues & Care (including assisted suicide, palliative care and dying well in a technological healthcare system)

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End-of-Life Forum (Catholic Medical Guild of Singapore, 2016)

• Hosted at the Catholic Archdiocesan Education Centre on 19th November 2016
• With the intention for participants to find answers to end-of-life issues from the perspective of faith.

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The Christian's Perspective of Dying (Dr. Chew Chin Hin, Family Life Forum, 2005)

• The Christian's perspective is that death is not the end of a person, as the person will live triumphantly and perfectly in the Lord
• Sanctity of life is fundamental because it is God who gave and gives life, so every person matters and life is precious.
• When encountering the question of medical futility, Dr. Chew writes that we should remember that our lives are in God's hands. *Deliberate shortening of life or the prolonging of the distress to stave off the inevitable is against the sanctity of life and against the doctor's calling.

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Confucian, Buddhist, Taoist and Mohist Beliefs

The Influence of Evolving Confucian Beliefs in the Selection of Proxy Decision makers at the End of Life in Singapore (Cheng et al, 2017)

• This study seeks to explore the factors behind the selection of the main caregiver, who provides the majority of physical care to the patient, and the decision maker, who is tasked with deciding on treatment plans.
• Twenty-one oncologic patients and caregivers attending an ambulatory treatment unit at a tertiary oncology centre viewed a video vignette and were asked about the suitability of the three children who suggest different options to care of their mother following her diagnosis of metastatic terminal cancer. Participants were also asked what factors they considered when selecting a surrogate.
• Contrary to traditional reliance upon gender roles to determine care roles and duties, nearly 60% of caregivers and 40% of patients prioritised the availability, willingness and capability of family members, and their financial and personal situations in determining their choice of caregiver and surrogate decision-maker.

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What nurses need to know about Buddhist perspectives of end-of-life care and dying (Clinical Research Centre, National University of Singapore, 2011)

• Discusses some of the Buddhist’s goals, beliefs, and practices at the end of life. It provides guidance to nurses to enable them to adapt the care they provide to end-of-life Buddhist patients to ensure that they allow dying Buddhists to meet their religious goals
• How the Buddhist unique perspective of death will affect pain control and sedation choices

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The Position of the Family of Palliative Care Patients within the Decision-Making Process at the End of Life in Singapore (Krishna, 2011)

• This paper focuses on the decision making preferences of the dominant Chinese populous. Of particular interest within this blending of Christian, Confucian, Buddhist, Taoist and Mohist beliefs in varying proportions is the combination of Confucian ideals of familialism with western ideals of individualism, a combination which is relevant to palliative care teams involved in the patient’s care as they endeavor to provide holistic care to both the patient and his family.

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Chinese Familial Tradition and Western Influence: A Case Study in Singapore on Decision Making at the end of Life (Ho et al, 2010)

• Case of an elderly Chinese Singaporean with metastatic cancer, whose family and physicians had conflicting goals of care
• The former was adamant on treating the patient’s disease with an untested drug, whereas the latter aimed to treat his symptoms with more conventional medication. Drug-drug interactions prevented treatment with both.
• Beginning with a discussion of the patient’s best interest, we delve into the Singaporean context to show how culture affects medical decision making.
• Confucianism and filial piety are the values on which this family’s workings were based. In an analysis of what this entails, we attempt to explain the significant and assertive family involvement in the decision-making process and their insistence on using novel medications, having exhausted conventional interventions.
• Within this mix were Western influences, too. Through the Internet, family members have become more informed and empowered in decision making, wresting the traditional paternalistic role of physicians in favor of ‘‘patient autonomy.’

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Community-based Efforts

Both Sides, Now (Lien Foundation and Ang Chin Moh Foundation, 2013-present)

• Timeline of Events:
  • 2013: Immersive arts experience at Khoo Teck Puat Hospital that featured installations, short and animated films, as well as activities like outdoor theatre and public dialogue, to get members of the public to reflect on death and dying.
  • 2014: Forum theatre play "Exit" and a puppetry show "The Wind Came Home" about end-of-life topics, including difficult decisions about managing illness, caregiving and death.
  • 2014-2016: Visited 50 senior centres across Singapore, staging puppetry performances and facilitating conversations on end-of-life matters with seniors.
  • March 2018: Forum theatre "Exit" staged in Chong Pang and Telok Blangah (see Key Dates for more details)
  • September 2018: Arts installation "Legacy" in Chong Pang with artworks that the seniors create about their values, what is important to them, and how they would like to spend their remaining days

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Good Death Project (Montfort Care, 2016)

• A social work initiative under Montfort Care - a community-based social service network.
• The project was piloted in 2016 and focuses on promoting early planning on one’s end-of-life care.
• Good Death aims to abolish the taboo surrounding death and envisions a death-friendly community that is open to holding conversations about living and dying well.

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Living with the End in Mind: A Study of How to Increase the Quality of Death in Singapore - Perspectives of 30 Leaders (Koh, 2011)

• This study was commissioned by the Lien Foundation in Singapore
• It aims to achieve greater widespread public and professional awareness, and to garner support for all relevant ways to enhance the environment for quality palliative and end-of-life care, from the home to hospice and hospital systems, and everything else in between, that can help facilitate a good death, for a better life.

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Die Die Must Say (Lien Foundation, 2006)

• A getai performance that targeted the Chinese-speaking community in Singapore.
• It was intended as a grassroots campaign to de-mystify and de-medicalise daunting end-of-life conversations
• It was organised by Lien Foundation as part of the Foundation's "Life Before Death" initiative rolled out in 2006.

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Project Going Home by Jaga-Me

• Offers free nursing services to financially needy patients who are on a terminal discharge (i.e. less than 72 hours of life)

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SPARKS! Art Wellness Exhibition by AIC and National Arts Council

• 100 nursing home residents created their own art projects with guidance from 10 artists, in a first-of-its-kind art wellness project organized jointly by AIC and NAC
• Part of the AIC Wellness Programme, which aims to improve the quality of life of elders in nursing homes.
• Arts can uplift the residents’ spirits and make them feel good about themselves, and cultivate a greater willingness to socialise

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New and Alternative Nursing Home Developments

Active Ageing Hub

• MOH plans to build 10 Active Ageing Hubs in new public housing estates
• Part of a $3 billion plan, first announced by MOH to help Singaporeans lead active lives as they age
• Rehabilitative care and social programmes for the residents in the area, complementing services offered by the hospital in Serangoon Road
• First completed Hub located in McNair Road, meeting the needs of elderly residents in Kallang and Whampoa
• For a nominal annual fee of $5, residents have access to gym and activities like line-dancing and IT classes
• 40 daycare places for elderly residents, and provides medical care at home for 100 house-bound residents in the area
• Another centre to be opened in St George's Lane in 2019, just five minute from the centre in McNair Road. Together, they will serve 1500 elderly residents

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Allium Healthcare's new nursing home along Venus Drive

• Proposed 4-storey, 129-bed facility with a built-up area of 5600 square metres
• Designed to be a premium product, to meet the demand from the middle- to upper-income group
• Of the 129 beds, 51 are single-occupancy care suits of 225 sq ft each, while 16 are companion suites of 327 sq ft each with en-suite bathroom, and executive suites start from 409 sq ft.
• 6 care suits and 2 companion suites will be set aside for residents with dementia, and 15 companion suites for subsidised residents
• 10 to 12 residents will share a living and dining area and a kitchen, as well as an area for rehabilitation and exercise facilities, in a "household"

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Jade Circle Nursing Home

• Co-funded by Lien Foundation and Khoo Chwee Neo Foundation, in partnership with Peacehaven nursing home
• Following the "Silver Hope" Model
• In 2015, Jade Circle was proposed as a 60-bed nursing home with single and twin-bedded rooms for subsidised patients, not just private patients
• However, this was aborted because MOH considered that the conversion of all nursing homes to single and double-bedded rooms would hurt the affordability of care, if this model were to be scaled up
• Lien Foundation commissioned 3 studies:
  • "The Economics of Singapore Nursing Home Care" by consulting firm Oliver Wyman concluded that if the next 5000 nursing home beds (MOH to increase number of nursing home beds from 12000 to 17000 in 2020) follow the Silver hope model it would cost an additional $19 million annually – or an additional $8 to 13 per resident per day
  • "Safe but Soulless" by Radha Basu provided an overview of nursing homes today and suggested possible ways to overcome challenges
  • "Supporting Singaporeans’ Aspirations for Aged Care" by The Nielsen Company showed that Singaporeans are most concerned about being able to care for oneself and ageing in place, 60% of respondents thought that residents in nursing homes should stay in single or twin-bedded rooms
• 90% of current nursing home beds are in 6- or 8-bedder dorms. The other 5% to 10% are single or twins, but more for infection control purposes. Japan had already phased out 6-bedder wards 40 years ago, and single beds has been the norm for almost a decade.
• Revived in 2019 after the revision of plans:
  • Extension to the north of the current Peacehaven Nursing Home in Changi
  • First in Singapore to adopt an ‘anti-diaper, restraint-free’ policy, made possible with specially imported beds that can be lowered to prevent falls, and which have sensors that can detect movement.
  • Reduction from original 60 beds to 22 beds (8 single rooms and 7 twin-sharing rooms)
  • Non-nurses to be trained as senior care associates, to give the caregiving manpower at the nursing home a boost. 22 residents in Jade Circle will be divided into two “households”, each cared for by a senior care associate, who will be assisted by a nursing aide.
  • Expanded scope to include bigger day activity centre so that elderly can age in community. Two-storey activity centre to include hydrotherapy pool, cafe, hair salon and gym
  • Unlike original concept, includes "full spectrum" of senior services from active ageing and preventive care to rehabilitation and residential care
  • Depending on the level of care needed, the estimated fees range between 1500 and 2500 for day centre care, and 2000 to 3500 for residential care before means testing
  • Overall development cost of Jade Circle has been reduced from the original $15 million to $14 million
• Jade Circle as important pilot to set people thinking about long term care and the philosophy of dignity and humanity – providing a de-medicalised and more home-like model of care that prioritises resident autonomy beyond safety and risk management

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Kampung Admiralty

• An 11-storey Housing Board complex as Singapore's first 'retirement kampung'
• 100 studio flats for the elderly
• Includes medical and senior-care centres, a food court, shops and community gardens
• Hopes to empower seniors to function independently in the community for as long as they can
• Similar to Assisted Living Options, but with no caregiver on standby for residents with dementia

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Lions Home

• Runs two facilities in Bishan and Bedok
• Initiative to let residents wear their own clothes since 2001 so as to make care "less institutional"
• Rehabilitation programmes include a motion sensing video game system for residents to exercise their range of movement, coordination and other physical functions

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NTUC Health

• Has three nursing home in Geylang East, Chai Chee and Jurong West
• Focus on getting seniors back home as early as possible, so that they can continue their rehabilitation in the community

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Orange Valley Nursing Home

• Largest operator of nursing home facilities in Singapore with more than 1000 beds
• First privately owned nursing home to provide outpatient rehabilitation services
• Cost of staying at the home ranges from $3500 for private patients who opt for the open ward to $9000 for a private one-bedded room a month. Open wards are also available for subsidized patients.

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Peacehaven Nursing home

• Introduced incentivising model of care: Residents have to “earn” money through exercise sessions and daily chores before they can “spend” it activities they enjoy e.g. massage, instant noodles, biscuits, sweets
• Giving residents their autonomy and keep their way of life, replicated from outside
• Giving them choices and a sense of control in how much they exercise and spend their money empowers them with a sense of purpose

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Ren Ci Nursing Home in Ang Mo Kio

• Dementia-friendly 'cluster-living' options for nursing home residents
• 470-bed nursing home is the "biggest departure yet from the medicalised dormitory-style accommodation"
• 16 residents in each four-bedded rooms 'household'

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St Andrew Nursing Home (SANH)

• Jurong home: Inter-generation playground and childcare within its premises for inter-generational bonding
• Henderson home: "open concept" to encourage,and allow residents to interact with the community, especially those living in Henderson, Telok Blangah and Bukit Merah

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St Bernadette Lifestyle Village

• Private facility in Bukit Timah that provides 24-hour medical concierge and meals
• 8 residents get help to live independently, including going on shopping trips to shopping malls
• Fees are at $3650 per month

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Needs Assessment for End-of-Life Care (NCSS)

Need to be identified as facing end-of-life issues

SYNOPSIS: Entry to specialised end-of-life care is through the medical system, but this neglects ‘dwindling deaths’ that are more chronic.

Existing Resources

There have been public education campaigns to increase public awareness of end-of-life care options , such as Lien Foundations’ ‘Life Before Death’, an internet-based campaign to raise awareness of end-of-life issues , and initiatives such as National Healthcare Decisions Day, using life insurance as opportunity for end-of-life dialogue, blogs, life half-time events, which will be able to reach out to educated classes and overcome the taboo.

Gaps and Their Causes

• Anecdotal information showed that vulnerable seniors with terminal illnesses—those with low-income and have little or no family support—were often not fully aware or were reluctant to engage the palliative care options open to them. A survey conducted by Singapore Hospice Council also showed that public awareness of end-of-life care options was low in general, especially among low-income groups.

• A survey conducted by Ngee Ann Polytechnic in 2009 also found that though 80% of the respondents knew that hospices provided a place of care for the terminally ill, half were not aware of the availability of hospice services in Singapore. (In 2009, the findings on death attitudes in Singapore were released. The survey was commissioned by Lien Foundation and conducted by Ngee Ann Polytechnic).

• In general, cultural values may impede advanced care planning needed to let patients make informed choices about their end-of-life options. 1 in 4 who was admitted did not know about their diagnosis, 1 in 2 was unaware of their prognosis, and many were not ready to engage in advanced care planning, in a survey done in 2010 (ST 1 Dec 2011).

• Truth telling and disclosure from families and doctors may also be a barrier as there is a cultural preference for protecting the patient from truth. A survey shows that 60% of those polled were reluctant to discuss death with those who are terminally ill (Lien 2009).These values and beliefs may lead to unnecessary suffering prior to death, for example, when patients passed on painfully because families insisted on treatments (Living with the end in mind, page 16).

• While there are many good public education ideas to improve awareness, the likelihood of such initiatives being able to reach out to vulnerable seniors, who are not as highly educated, remains low, because of the language and media barriers. First of all, majority of vulnerable seniors do not converse in English; second, most of them are not internet-savvy or do not even have internet access.

Possible Solutions

• Relay understandable information to seniors through community touch points. Instead of campaigning online or conducting public education targeted at seniors directly, which usually turn out to be ineffective because of the language and media barriers, it might be more useful to equip various community touch points, such as Senior Activity Centre (SAC) staff or befrienders, with sufficient knowledge of end-of-life services & resources so they can relay the information to seniors who need such services/resources. Therefore, we recommend that we should move the communication upstream, and information could be provided to seniors even before they enter the medical system. Community touch points such as SACs can therefore do more to educate seniors about end-of-life care options in a culturally sensitive manner, and can even do some simple diagnostics before referring them to relevant services.

• Involve religious groups to do public education on end-of-life issues. It might be easier to openly talk about end-of-life issues when discussing spiritual or afterlife topics in religious settings, such as in temples or churches. Therefore, we recommend that we could involve religious groups/organisations to do more public education on end-of-life issues and care options so as to overcome the cultural taboo.

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Need for public to be aware of options & accept their validity

SYNOPSIS: Awareness & acceptance of palliative care is low; likely due to cultural stigma

Existing Resources

BOTH SIDES, NOW - A community engagement project about what it means to live well, and leave well, and an ongoing project by the co-presenters since 2013. Presented by Lien Foundation, Ang Chin Moh Foundation, Drama Box and ArtsWok Collaborative, the current 3-year iteration will see a longer-term community-centric approach in two communities, with community collaborators, Khoo Teck Puat Hospital in Chong Pang, and Montfort Care in Telok Blangah.

Gaps and Their Causes

Possible Solutions

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Need for access to understandable information & effective referral

SYNOPSIS: Main source of information is through the medical system, but not all hospitals—even those with a palliative care team—are able to help all families become better informed about the role of hospices.

Existing Resources

Gaps and Their Causes

Possible Solutions

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Need to manage pain & symptoms

SYNOPSIS: Not perfect, but palliative care is growing through efforts of many medical establishments and Ministry of Health

Existing Resources

Gaps and Their Causes

Possible Solutions

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Need to die under conditions and place of own choice

SYNOPSIS: Generally, individuals prefer to die at home, but it is unclear if vulnerable seniors who have no social support feel the same

Existing Resources

Gaps and Their Causes

Possible Solutions

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Need for psychosocial well-being, community integration and social usefulness

SYNOPSIS: Existing studies indicate this is important and potentially neglected area because most services provide ‘recreational’ activities but do not see how seniors with end-of-life issues can also be contributing members to the activities

Existing Resources

Gaps and Their Causes

• A study on death attitudes in Singapore found that psychological concerns and fulfillment was the second and third most mentioned categories of responses, just after physical conditions, when asking about the things to be considered as the most important when dying. Therefore, one of the important factors for Singaporeans to die well is, besides good pain and symptom management, psychosocial support they would receive from informal and formal caregivers so as to keep their last few days meaningful and surrounded by love and care (Survey commissioned by Lien Foundation and conducted by Ngee Ann Polytechnic in 2009).

• Currently, terminally ill seniors who need psychosocial support services will be referred by the hospice nurses to their in-house psychosocial care staff i.e. medical social workers or counsellors, for assessment, case management and counselling services. NCSS End of Life Needs Assessment: interviews with hospice service providers are the inadequacy of funding for psychosocial support, the shortage of psychosocial care staff, as well as a dearth of local educational & training opportunities and support networks for these staff.

Possible Solutions

• MOH continue funding psychosocial support services for patients. MOH started funding psychosocial visits (social worker’s visits) in 2010, and we would like to advocate for funding for psychosocial support services (for patients) to remain and expand, not only for psychosocial visits (social worker’s visit) to patients’ home, but also to include other services that hospice service providers initiated to provide psychosocial support to patients and allow them to be meaningfully engaged in their last few days.

• Move towards community model/communal projects. Since there is always a shortage of psychosocial care staff in the sector, we recommend that NCSS or service providers could work with the National Volunteer and Philanthropy Centre (NVPC) to start communal/volunteer programmes in palliative care such as tapping on community resources such as skilled/experienced former caregivers to be the volunteers or to be the trainer to other volunteers, so as to provide psychosocial support, or even instrumental support, to patients.

• Overseas models for reference:
  • Home Hospice (Sydney) uses a community development approach to deliver a community mentoring program for carers who want to care for terminally ill person at home. Mentors are volunteers who themselves have been carers or part of a caring network for a terminally ill person. Mentor is paired with carer, helping caregiver to find and access formal services where available.

• • A multidisciplinary, interfaith, grassroots community group of professionals and laypersons created a replicable model to enhance palliative and end-of-life care. The Collaborative for Palliative Care leverages existing community assets and capacities within the health and social service programs of Westchester County, New York, resulting in a unique public-private partnership. It has played a critical role in changing the culture of care for residents of Westchester who are faced with the challenges of serious and terminal illness.

• Organise professional networks to support psychosocial care staff. With the limited educational and training resources locally, we recommend that NCSS could set up a common platform for psychosocial care staff to share available resources as well as to share the best practice with each other, such as through professional networks or community of practice.

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Need for caregivers to have bereavement and post-demise support

Existing Resources

Gaps and Their Causes

• For caregivers, literature shows that end-of-life caregivers would have greater unmet needs before and after the death of their care recipient and that they would report lower levels of well-being than continuing caregivers. A study by an Aged Care Transition (Action) team found that in fact many seniors who need end-of-life care are cared for by spouses who could be as old and frail as them. The majority of these senior caregivers have little education and many also have health problems as more than half are above 65 years old. From our interviews with professionals, it was reported that 80% of these senior caregivers (aged 60 years and above) need psychosocial support after their spouses passed away.

• Caregivers who were identified in to have more psychosocial care needs after the patients passed away are: (NCSS End of Life Needs Assessment)
  • Senior caregivers who lost their spouse and have no children
  • Senior caregivers who lost their spouse and are now living alone
  • Senior caregivers who lost their spouse and have limited interaction with others or estranged family relationships

• Existing training programmes, support groups and volunteer befrienders do help to relieve caregiver burden, but the options for caregiver support can also be enlarged to allow caregivers choices that are suitable for their circumstances.

• There are existing caregiver training programmes conducted by HCA Hospice Care & Metta Hospice Care for caregivers of persons with life-limiting illnesses to learn how to manage the care at home. HCA Hospice Care also runs other support services such as the Sunflower Remembrance Day which is a memorial service for bereaved caregivers.

• However, the common themes which reoccur in our interviews with hospice service providers are the lack of longer-term support for bereaved caregivers and their families, especially for bereaved elderly spouse who lives alone or families with young children, as well as the lack of funding for bereavement support within the hospice service boundary.

• Professionals also reported that transition from hospice service to other agencies for post-demise support was generally poor. Those who need post-demise support are usually referred to Family Service Centres (FSCs). However, caregivers might not want to be referred to other agencies as:

• • The referred FSC might not be in their vicinity; and

• • Good rapport built between hospice social worker and the family was lost when being transferred to FSCs for follow-up services. The caregiver/family was generally reluctant to repeat history to “a stranger”, especially when the patient just passed away.

Possible Solutions

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Need for life closure & last wishes

Existing Resources

Gaps and Their Causes

Possible Solutions

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Resource Directory

Government Organisations

Agency for Integrated Care (AIC) Under the Ministry of Health, AIC coordinates and facilitates efforts among care providers for care integration. To encourage individuals to discuss and share their care preferences with loved ones in advance through an ongoing process of communication, AIC developed Living Matters, which is a national Advance Care Planning Programme in Singapore started since 2011. Living Matters ACP has been adapted from the Respecting Choices Programme at the Gunderson Health System in Wisconsin, US.

Advanced Care Planning

There are two legal documents:

Advanced Medical Directive (AMD) refers to the oral and/or written instructions that convey treatment preferences in the event of a loss of decision-making capacity. This includes living wills, which are written, legal documents that spell out the preferred types of medical treatments and life-sustaining measures under specific circumstances. In Singapore, the AMD Act allows patients to indicate their wish not to have any extraordinary life-sustaining treatment to be administered should they become unconscious or incapable of decision-making and are suffering from terminally illness.

Lasting Power of Attorney (LPA) legally designates a healthcare proxy who would make decisions on the healthcare of the individual in the event the individual is unable to do so. The Singapore Mental Capacity Act (MCA), enacted in 2008 and implemented on 1 March 2010, allows a person, called the “donor”, to make an LPA to appoint a proxy, called the “donee”, to make medical decisions (consent to carry out or continue treatment) on the donor’s behalf, should he eventually become mentally incompetent. However, a donee may not make any decision concerning life-sustaining treatment or treatment which is reasonably believed to be necessary to prevent a serious deterioration of the patient’s condition.

ACP is not limited to end-of-life scenarios, but extends to long-term care situations as well. ACP is intended to put the best interests of the individual into practice in the event of a serious illness. It could involve all healthy adult individuals living in the community, who may or may not be patients, but would be especially useful for the individual who becomes mentally incapacitated and is unable to make decisions or communicate his wishes.

ACP is a process of assisting the individual to : (i) understand their medical condition and potential future complications; (ii) understand the options for future medical care as it relates to their current health condition; (iii) reflect upon their goals, values and personal beliefs; (iv) consider the benefits and burdens of current and future treatments; (v) discuss choices with family/important others and health providers, and document these choices.

The intended outcome of ACP discussions is a statement of wishes, which can be in either written or oral form. This statement is not legally binding, but would be of importance when a judgment is to be made in the person’s best interests. This statement of wishes does not mark the end of ACP. There should be an ongoing update and clarification of concerns, values and preferences over time, whether or not a statement of wishes is made.

Some patients may also subsequently decide in advance their preferred treatment and care option for a predefined future medical situation, such as the refusal of certain treatment or procedures. ACP may thus lead to, but should not be reduced to, the writing of an advance directive, or the making of a lasting power of attorney to appoint a donee to make medical decisions on their behalf should they become mentally incompetent.

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Syariah Court Singapore (for Muslims) The Syariah Court facilitates the distribution of the deceased’s estate through the Inheritance Certificate according to Muslim law

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Agency for Care Effectiveness (ACE) is the national health technology assessment agency in Singapore, established by the Ministry of Health in 2015 to drive better decision-making about clinically effective and cost-effective patient care. From May 2017, ACE will be publishing guides, which outline recommendations on the appropriate use of the health technologies evaluated, provide a brief summary of the rationale for the subsidy decision, as well as the key clinical and economic evidence which informed the recommendations. ACE will also be publishing 'Appropriate Care Guides', which are concise sets of recommended care practices and pathways aimed at improving selected areas of therapy.

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Non-Governmental Organisations (NGOs)

Hospice Care

Singapore Hospice Council The Singapore Hospice Council is the umbrella body representing all organisations actively providing hospice and palliative care in Singapore.It aims to coordinate and promote hospice and palliative care in Singapore; to support the training of doctors, nurses, allied-health workers, caregivers and volunteers; to improve on the quality of palliative care, and to raise public awareness. It acts as the voice of hospice and palliative care within Singapore and internationally.

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Assisi Hospice Founded by the Franciscan Missionaries of the Divine Motherhood (FMDM) Sisters in 1969, Assisi Hospice provides palliative care to patients with life-limiting illnesses, caring for them and their families regardless of faith, age, race and financial position.

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Dover Park Hospice Founded in 1992, Dover Park Hospice has served as a tranquil sanctuary for over 10,000 patients and families over the years, meeting their unique physical, emotional, psycho-social and spiritual needs through holistic palliative care.

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HCA Hospice Care HCA Hospice Care is Singapore's largest home hospice care provider and is a registered charity since 1989. The organisation provides comfort and support to patients with life-limiting illnesses regardless of age, religion, ethnicity, nationality and financial status. The organisation conducts palliative care training for its patients' caregivers, as well as other services such as day hospice care, paediatric palliative care, bereavement support and outreach programmes.

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Hua Mei Centre for Successful Ageing (HMCSA) Under Tsao Foundation, HMCSA is an integrated collective of various community aged care service models that have been pioneered by the organisation since 1993. They offer services ranging from care management, to traditional chinese medicine and dementia care systems.

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Other NGOs

Lien Centre for Palliative Care The Lien Centre for Palliative Care is a collaboration between Lien Foundation and Duke-NUS Medical School. It aims to build up a strong pool of palliative care professionals to enhance service delivery. With research programmes looking into clinical, social and cultural aspects of palliative care in Singapore and Asia, it also focuses on palliative care education and development of healthcare professionals.

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Singapore Cancer Society The mission statement of Singapore Cancer Society is to be community-based voluntary welfare organisation dedicated to maximising life by minimising the impact of cancer through research and advocacy, public education, screening, financial assistance, patient services and support, and rehabilitation.

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