Needs Assessment of End of Life Care

This needs assessment is based largely upon the National Council of Social Service (NCSS) report in 2014. It has been and will be continuously updated via this wiki platform. The needs have been re-organised to match White Paper.

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.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.

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” . 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 .

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.

End of Life Issues that the NIH has focused on :

• Patterns of communication among patients, families and providers
• Ethics and health care decision-making
• Caregiver support
• Context of care delivery
• Complementary and alternative medicine at the end of life
• Dying children of all ages and their families
• Informal caregiving

How IOM defines their scope of relevance for end of life :

• The management of symptoms;
• Spiritual and personal growth;
• A familiar setting, surrounded by loved ones;
• Understandable information to guide decision making and planning;
• Confidence that one will not be a financial, emotional, or physical burden to family members;
• The right of self-determination and control of treatment choices.

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
• Previous Quality of Death Index in 2010 placed Singapore at 19th place out of 40 countries
  • Among 17,000 local deaths annually, about 20% received palliative care before their death, which is far less than the target of offering palliative services to 60% of those in need
  • Hospice day care should be open till 10pm, rather than 6.30pm, to facilitate easier pick-up of elderly relatives

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Palliative Care System in Singapore

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.

"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%).

Moving towards services for non-cancer patients Historically, palliative care was for cancer patients, but recently, with increasing numbers of non-cancer palliative care patients, there has been 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.

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% of 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'.

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Target Population

The NCSS Report focused specifically on the end-of-life issues faced by vulnerable seniors. It defined vulnerable seniors to be those who are old, poor and have limited or no family support. In 2014, there were around 20,000 seniors who were poor and did 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 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.

The demand of end-of-life care for vulnerable seniors will continue to increase over the years. 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.

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Desired outcomes - What is a Good Death

Institute of Medicine’s 1997 report Approaching Death: Improving Care at the End of Life. The 1997 report, produced by the Institute’s Committee on Care at the End of Life, proposed a conceptual definition of a good death: one that is free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards. (See IOM 1997 Approaching Death)

IOM (2003: 22-3)

• The Management of Symptoms
• Spiritual and Personal Growth
• A Familiar Setting, surrounded by loved ones
• Understandable information to guide decision making and planning
• Confidence that one will not be a financial, emotional or physical burden to family members
• Right to self-determination, control of treatment choices

NIH (2004: 6) Outcome variables that are important indicators of quality of end-of-life experience:

• physical or psychological symptoms
• spiritual or philosophical beliefs
• expectations and meaning,
• economic considerations
• caregiver and family experiences

National Hospice and Palliative Care Organization Recommended Outcomes

Self-determined life closure

• Staff will prevent problems associated with coping, grieving, and existential results related to imminence of death
• Staff will support the patient in achieving the optimal level of consciousness
• Staff will promote adaptive behaviors that are personally effective for the patient and family caregiver

Safe and comfortable dying

• Staff appropriately treat and prevent extension of disease and/or comorbidity
• Staff treat and prevent treatment side effects
• Staff treat and prevent distressing symptoms in concert with patient’s wishes
• Staff tailor treatments to patient’s and family’s functional capacity
• Staff prevent crises from arising due to resource deficits
• Staff respond appropriately to financial, legal, and environment problems that compromise care

Effective grieving

• Staff treat and prevent coping problems
• Staff coach the patient and family through normal grieving
• Staff assess and respond to anticipatory grief
• Staff prevent unnecessary premature death
• Staff identify opportunities for family members’ grief work
• Staff assess the potential for complicated grief and respond appropriately
• Staff assist the family in integrating the memory of their loved one into their lives

Others in end-of-life care have focused on the identification of key domains for measurement in order to monitor quality of life and quality of care at the end of life. Emanuel has identified six “malleable inputs” or areas open to intervention by the health care system: physical symptoms, psychological symptoms, social relationships, economic and care giving responsibilities, hopes and expectations, and philosophical or spiritual beliefs (Emanuel and Emanuel, 1998).

Teno has identified five key domains for measurement: symptom management, shared decision making, patient satisfaction, coordination of care, and continuity of care (Teno et al., 2000; Teno, 2001). In addition to these domains, she notes the importance of family information, education, support, and bereavement support.

The American Geriatrics Society adopted a list of 10 principles designed to stimulate further efforts to develop performance standards that can lead to improved care at the end of life (Lynn, 1997).

Many different outcome measures have been used. While not necessarily a limitation for any single study, the use of a diverse set of outcome measures limits the ability to draw comparisons across studies of the same or different interventions. (NIH 2004: 14)

National Hospice Discharge Survey (NHDS)

Most common answers (in order of frequency)

• I want certain people to be here with me
• I want to be physically able to do things
• I want to feel at peace
• I want to be free from pain
• I want the last 3 days of my life to be like any other days

Least frequently mentioned wishes

• Completing a task
• Being mentally alert
• Accept death
• Know when death is imminent
• Be able to bear pain
• Live until a certain time or event

Goal of accepting death philosophically or demonstrating ability to tolerate pain was seldom stated. Thus, “it is wise to learn from each individual what really matters than to attribute motives and themes picked up elsewhere” (Kastenbaum 2007: 166)

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Medical Aspects

Need to manage pain and symptoms

Need	Existing Resources	Gaps and their Causes	Possible Solutions
Need to manage pain and symptoms Not perfect, but palliative care is growing through efforts of many medical establishments and Ministry of Health	Singapore does well in opioid analgesics availability, as emphasized by the National Guidelines for Palliative Care and Interpretation Guide Research on the use of a protocol-based pathway, modified from Liverpool Care Pathway, revealed promising results in terms of improved physical comfort	Use of sedation is still met with resistance due to its association with physician-assisted suicide	{To be added}

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Infrastructure Needs

Need for affordable, high quality and diverse options for healthcare and end-of-life care

Need	Existing Resources	Gaps and their Causes	Possible Solutions
Need for affordable, high quality and diverse options for healthcare and end-of-life care Provide a range of options so that there are no barriers to care and needs of individuals are met	Introduction of MOH’s Enhanced Nursing Home Standards (ENHS) in April 2016 for all nursing homes - tightened rules aim to articulate three aspects – clinical care, social care, and governance and organizational excellence. MOH and AIC help nursing homes achieve the ENHS through intiatives such as baseline assessments, training and sharing of best practices. National Guidelines for Palliative Care and Interpretation Guide includes a desired outcome of “reduced barriers to care” to ensure that 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 More options for palliative care in hospitals and nursing homes available in Singapore (see Resource Directory) e.g. Project Going Home by Jaga-Me – a start-up that offers free nursing services to financially needy patients on a terminal discharge, and home delivery service of medicines. Stop-gap measure of the appointment of temporary operator for residential care services in the event that something happens to the original palliative care provider (e.g. bankruptcy) so that patients’ palliative care treatment is not disrupted	Healthcare is shifting away from acute hospitals and into people’s homes, so MOH is in the process of reforming the sector i.e. to have community nursing teams in three integrated clusters that serve different geographical regions in Singapore, with each team having between 10 and 15 nurses. However, this requires greater numbers of skilled manpower - only 4900 of Singapore’s 34000 or so practicing nurses are in the community care sector. MOH aims to add 900 more by 2020. 9 focus groups with a total of 63 participants discussing end-of-life preferences identified “avoiding expensive care” and “avoiding burden on the family” as components of good end-of-life care. As such, affordable options are important. The 2014 edition of the Death Attitudes Survey showed that many viewed hospice palliative care as costly – more than two in five respondents (43%) of those who would not consider hospice palliative care cited high costs as the reason. The Private Hospitals and Medical Clinics Act (PHMCA) governs practices in medical facilities, including hospitals, nursing homes and laboratories, but does not include hospices Lack of coordination for individuals and their families as they move from one type of care to another, or one institution to another i.e. to treatment and support outside the acute hospital system. Current healthcare system lacks financial, social and physical support for patients who wish to die at home. This need for better coordination of care was also identified by the Report on the National Strategy for Palliative Care Healthcare costs in the last 6 months of a person’s life are the highest, regardless of the age of death. Therefore, a key challenge is to find ways to help people make clear end-of-life plans	New ideas for hospice care in future generations Singapore continues to build multi-bed, dormitory-like nursing homes in order to keep costs low – at a time when most advanced nations offer single- or twin-bed rooms and when local surveys show that many Singaporeans don’t wish to age in such settings. Persisting in building dormitory-style homes might prove to be a costly policy error, if such homes need to be reconfigured in response to future expectations.

Need for access to understandable information & effective referral

Need	Existing Resources	Gaps and their Causes	Possible Solutions
Need for access to understandable information & effective referral 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.	The desired outcomes in the National Guidelines for Palliative Care and Interpretation Guide include “Coordinated Care” (ensuring continuity of care across settings and over time), “Holistic Assessment and On-going Care Planning” (interdisciplinary care to meet the changing needs and wishes of patients, caregivers and families), and “Advance Care Planning”. Project CARE, started by Tan Tock Seng Hospital (TTSH) and funded by MOH, deployed doctors, nurses and medical social workers to the nursing homes in the area daily to assess the residents’ medical conditions and meet residents and families to discuss ACP. 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 information and planning giben through an end-of-life programme. Appropriate Care Guides (ACG) developed by MOH would address topics of concern, including end-of-life care. The first two ACG have been on diabetes-related concerns. Many means through which individuals may prepare for end-of-life, including Advanced Medical Directive, Advance Care Planning, and Lasting Power of Attorney (Refer to End-of-Life Planning)	Slow uptake of ACP: A survey by Khoo Tech Puat Hospital in 2015 and 2017 showed that less than half of the 158 patients surveyed were willing to partake in further conversations on ACP, and eventually only 22% went on to formally document advance directives Concerns about how advance directives may in some situations limit possibilities by consigning the person to a self-imposed bondage, as ACP may not always anticipate and encompass all possible scenarios, given that ACP discussions are by their nature hypothetical. Professionals interviewed by NCSS generally reported that public awareness of hospice care services was low and talking about death was still a social taboo in the society The Death Attitudes Survey in 2009 by Ngee Ann Polytechnic found that 80% of the respondents knew that hospices provided a place of care for the terminally ill, but half were not aware of the availability of hospice services in Singapore Truth telling and disclosure from families and doctors may also be a barrier as there is cultural preference for protecting the patient from the truth - 60% of survey respondents were reluctant to discuss death with those who are terminally ill These values and beliefs may lead to unnecessary suffering prior to death, for example, when patients die painfully because families insisted on treatments (Living with the end in mind, page 16)	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 SAC staff or befrienders, 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.

Need for life closure and last wishes, to die under conditions and place of own choice

Need	Existing Resources	Gaps and their Causes	Possible Solutions
Need for life closure and last wishes, to die under conditions and place of own choice Provide a sense of completion to the terminally ill patients by ensuring that individuals have autonomy and dignity to choose the place and conditions of death	More options for palliative care in hospitals and nursing homes available in Singapore (see Resource Directory) e.g. Project Going Home by Jaga-Me – a start-up that offers free nursing services to financially needy patients on a terminal discharge, and home delivery service of medicines. Started by non-profit group Youth Without Borders, Project: One More Thing [1] aims to fulfil the wishes of the elderly folk from hospices, day care centres and poorer neighbourhoods by connecting the youth who can fulfil these wishes with the elderly in the community. One component of good end-of-life care identified by 9 focus groups with a total of 63 participants is “achieving a sense of completion” One desired outcome from the National Guidelines for Palliative Care and Interpretation Guide includes “Care in the Last Days of Life” which ensures that care is taken to fulfil the needs of patients in the last days of life, as well as those of their caregivers and families.	Healthcare is shifting away from acute hospitals and into people’s homes, so MOH is in the process of reforming the sector i.e. to have community nursing teams in three integrated clusters that serve different geographical regions in Singapore, with each team having between 10 and 15 nurses. However, this requires greater numbers of skilled manpower - only 4900 of Singapore’s 34000 or so practicing nurses are in the community care sector. MOH aims to add 900 more by 2020. Improvement in end-of-life care provision in the emergency department, especially for many patients already with chronic illness trajectories of dying. A study of 197 patients who died in the emergency department showed that 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 Significant differences in attitudes and decisions regarding end-of-life care among patients, relatives and healthcare providers. As a result, it is important to elicit patient preferences during treatment, or have end-of-life plans in place, rather than rely on caregiver input . This is especially since 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 Although doctors are generally patient-centered, with a “professional bias towards rescue and survival”, sometimes aggressive medical treatment may not be in the patient’s best interest. Some doctors continue prolonging life because they fear legal backlash should they not do so.	{To be added}

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Financial Considerations

Need for sufficient finances for retirement and end-of-life care

Need	Existing Resources	Gaps and their Causes	Possible Solutions
Need for sufficient finances for retirement and end-of-life care Current retirement financing schemes are inadequate for intermediate and long-term care	CPF Medishield Life - basic universal health insurance scheme introduced in 2015 with improved protection for life and higher payouts, and broader coverage for all Singaporeans, including the very old and those with pre-existing conditions Eldershield - payouts of $300 or $400 a month, over a fixed period of either 60 or 72 months (i.e. 5 or 6 years), depending on the plan chosen. Silver Support Scheme - Tax-financed, non-contributory income supplement scheme for the bottom 20% income of Sinaporeans aged 65 and above, with eligibility based on criteria such as lifetime ages and contributions to the CPF, level of household support, monthly income per person and housing type Pioneer Generation Package - increased subsidies for healthcare, Medisave account top-ups, Medishield Life premium discounts, and financial support for those with sever functional disabilities Community Health Assist Scheme (CHAS)	Gaps in current measures: Funding for intermediate and long-term care services - Significant reliance on charities, VWOs and private organisations Eldershield is not universal in coverage - 41% of those eligible in 2013 were not covered under the scheme; inadequate for full-time dependent care over the long term, as amount does not even cover the wage of a foreign domestic worker. Since it 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. 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. Many elements of Singapore's pension system are not inflation indexed 3-year gap between CPF payout eligibility age of 65 and the statutory retirement age of 62 years Alternative measures to CPF for retirement financing needs a rethink - Although CPF members have the option to withdraw their savings from the Ordinary Account to invest in the CPF Investment Scheme, 8 in 10 people would have been better off, or just as well off, if they had just left their money in the CPF instead.	Expand current schemes: To expand Eldershield to be comprehensive and lifelong, it would make sense for the Government to take a larger role, as they have the reserves to risk pool and bear more of the risk around uncertainty of how long people live ) 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. Raise the Silver Support Scheme (SSS) payout, which seems too low for current cost of living Expand medishield to include all Singaporeans regardless of age or pre-existing illnesss, and ensure that 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 Singapore government can increase healthcare spending in the long-term care sector) : A larger portion of allocated healthcare spending by the Singapore government can go toward long-term health and social care. The Singapore government has ramped up healthcare spending from $4 billion in financial year 2011 to $9.8 billion in 2016. Yet, a relatively small portion is spent on long-term health and social care - $600 million in 2015 (MOH), bulk of which went towards building new nursing homes and senior care centres, subsidies for fees and manpower costs. Another $100 million was disbursed from the Community Silver Trust fund, a dollar-for-dollar matching grant from the government, in order to improve and expand services in the LTC sector. Compared to the OECD nations that spend an average of 1.4% of GDP on long-term care in FY2014, Singapore spends less than 0.15% of the GDP, around 7% of MOH budget ($8.7 billion)

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Family, Society, Polity

Need to be identified, know and accept that they are facing end-of-life issues

Need	Existing Resources	Gaps and their Causes	Possible Solutions
Need to be identified, know and accept that they are facing end-of-life issues Cultural values may hinder information disclosure to patients	National Guidelines for Palliative Care and Interpretation Guide provided requirements and desired outcomes, which included Timely Identification to ensure that people approaching the end-of-life are identified in a timely manner One main theme of the International Conference on Clinical Ethics and Consultation (ICCEC) held in Singapore in 2017 was 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.	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.	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.

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

Need	Existing Resources	Gaps and their Causes	Possible Solutions
Need for psychosocial well-being, community integration and social usefulness Beyond medical care, need to provide dignity to individuals who are terminally ill through multidisciplinary approach	Community projects: 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. MOH started funding psychosocial visits (social worker’s visits) to patients’ homes in 2010 Co-location of childcare facility within a nursing home and hospice in St. Joseph’s Home Projects getting neighbours in estates to befriend and give emotional support to grieving relatives of those who have died) Pairing seniors to keep an eye out for other old folk in the area Hospice care have helped make the final days of the terminally ill patients fulfilling and meaningful, and have accumulated experience in caring for the patient and helping caregivers care for the patient Nurses’ Initiative for Community Engagement (NICE) started by a group of healthcare workers to reach out to vulnerable home-bound seniors in the community through one-to-one home visits SPARKS! Art Wellness Exhibition for nursing home residents to create their own art projects to improve their quality of life Various research available on the Buddhist, Confucian and Taoist perspectives towards death Contrary to traditional reliance upon gender to determine care roles, nearly 60% of caregivers and 40% of patients prioritized availability, willingness and capability of family members, as well as their financial and personal situations as key determining factors Buddhist practice impacting choice of pain control and sedation Familialism still important among the Chinese Traditional Chinese medicine may clash with conventional Western medicine, but Confucianism and filial piety were used to justify the caregiver’s choice of the former over the latter Various research available on the Catholic and Christian perspectives, towards death and dying Healthcare Christian Fellowship for healthcare workers, including palliative care workers to address issues of ethical dilemmas e.g. assisted suicide End-of-Life Forum for participants to find answers to end-of-life issues from the perspective of faith Christian’s perspective of death is that it is not the end of the person, as the person will live triumphantly and perfectly in the Lord; sanctity of life is fundamental so deliberate shortening of life is against doctor’s calling	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. 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 While Singapore did well in affordability and quality of care, it fared the weakest in community engagement Less emphasis on the spiritual needs and personhood of the patient Fear of backlash leads to unnecessary prolonging of life through aggressive medical treatment that leads to poorer quality of life Lack of research available on the Islamic and Hindu perspectives of death in Singapore	MOH expand funding for psychosocial support services 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 in ‘whole of society’ approach 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.

Need for caregivers to have support throughout caregiving and bereavement process

Need	Existing Resources	Gaps and their Causes	Possible Solutions
Need for caregivers to have support throughout caregiving and bereavement process Generally, individuals prefer to die at home, but it is unclear if vulnerable seniors who have no social support feel the same	National Guidelines for Palliative Care and Interpretation Guide also highlighted two desired outcomes, “Caregiver Support” (supporting caregivers who face significant stress in their caregiving roles) and “Bereavement Care” (family members are offered timely bereavement support appropriate to their needs and preferences). Neighbours in estates befriend and give emotional support to grieving relatives of those who have died Hospice staff have a lot of experience in helping family members communicate with their loved ones before passing Respite care services to reduce burnout: AIC started the Nursing Home Respice Care programme in 2013 that allows caregivers to leave their loved ones at a nursing home for up to 30 days. This programme is now available at more than 40 nursing homes, up from 15 in 2013. Selected daycare centres and nursing homes have respite services to avoid caregiver burnout. Usage of these respite services has increased by at least 50% between 2015 and 2017 Research has shown that caregivers with higher social support satisfaction and who had a religion predicted higher quality of life	A 2010-2011 Survey on Informal Caregiving commissioned by the former Ministry of Community, Youth and Sports found that nearly half (45%) of potential caregivers said they needed help or training to properly care for an elderly family member (aged 75 and above). Those who reported significantly higher stress faced disrupted schedules, as well as health and financial problems that resulted from their caregiving duties. Caregiver burnout is defined as “a state of stress or distress for a prolonged period of time” (Help for Cancer Caregivers). Stress happens when caregivers feel they do not have time to do all that is asked or expected of them. 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.	Lack of information on caregiving work to be addressed with a nationwide study conducted by NCSS in 2nd quarter of 2018 to better understand the impact on long-term caregivers and the support they need. By surveying those caring for children, adults with disabilities as well as persons with chronic illnesses and mental health issues, the study seeks to find out the level of social support caregivers receive, their psychological needs and their relationship with the ones they care for. The findings will enable agencies to plan for services that will be useful to caregivers. Research on current status of post-demise care work There is a need to study more to understand the area of post-demise care work which is being done right now by psychosocial care staff, for example, the intensity of work, the attitude of caregivers/bereaved families (are they really unwilling to be referred to FSCs?), the demand of post-demise care, the funding needs of post-demise care in hospice, as well as the best service model to deliver this help and to make the transition of care from hospice to other providers like FCSs smoother. Data collection through EPES To support the further research on post-demise care, we recommend that NCSS could help out with preliminary data collection through EPES submission to reflect the amount of post-demise work hospice service providers are doing from FY13 onwards, so as to validate what the social workers are reflecting to us in the current study, and to advocate for funding for post-demise care in the hospice setting.

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

Need	Existing Resources	Gaps and their Causes	Possible Solutions
Need for public to be aware of options & accept their validity Awareness & acceptance of palliative care is low; likely due to cultural stigma	Public education campaigns to increase public awareness of end-of-life care options ‘Die Die Must Say’ – a getai performance that targeted the Chinese-speaking community in Singapore to de-mystify and de-medicalise daunting end-of-life conversations 'Both Sides, Now'[2] - 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. Good Death Project by Montfort - Aims to abolish the taboo surrounding death and envisions a death-friendly community that is open to holding conversations about living and dying well Care Living with the End in Mind – This study of 30 leaders 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. More newspaper articles about end-of-life care Channel NewsAsia’s commentary series that explores issues ranging from youths with terminal illness, to planning for passing Straits Times articles to explain the importance for family members to start a dialogue with elderly persons to manage expectations and do ACP	Increased desire for “die-logues” 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 {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.{Citation needed} The Death Attitudes Survey commissioned by Lien Foundation and 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. The 2014 edition of the Death Attitudes Survey showed that only half of Singaporeans were aware of hospice palliative care, and only about a third of respondents could define what hospice palliative care is. The Report on the National Strategy for Palliative Care identified “promoting public awareness on end-of-life issues” as an area of improvement in the palliative care landscape in Singapore and the world.	One of the key strategies developed through Action Plan 2016 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 MOH aims to work with Singapore Hospice Council to aim to reach out to 100,000 Singaporeans over the next 4 years to get people talking about end-of-life at an earlier stage. Singapore Hospice Council will also develop information packs on issues related to end-of-life care, such as palliative care services, advance care planning and making a Lasting Power of Attorney