End of Life

White Paper

Key Dates

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Needs Assessment and Service Gap Analysis (edited from NCSS Report on 13 Feb 2014)

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.

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.

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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 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)

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The 'Disadvantaged' are Neglected

End-of-life care is often less ideal for the poor, older people, those in nursing homes, those with mental health problems (dementia, schizophrenia), those with learning disabilities and offenders . Minorities are also underrepresented in end-of-life research .

Poor: Class inequalities in palliative care/higher social classes can choose where to pass on and receive palliative care and supportive services, while working classes have little choice and pass on in acute hospitals (Payne 2004: 17)

Older people: Language of palliative care seems to be focused on access to services rather than need. Hinton (1996) suggests that older cancer patients often have limited access to the full range of palliative care services. Decisions about service provision may be influenced by an ageist ideology which assumes that older people are less affected by a cancer diagnoses, more accepting of death and seem to experience less distress from symptoms (McMurray 2004: 66). Arber and Ginn (1998) offer an explanation for this—the acceptance of society that illness and disability are normal consequences of aging. By focusing on caregiver burden, it is harder to accurately evaluate needs of older adults facing death (see McMurray 2004: 67). “The assumption may be that because older people are closer to death and should therefore expect losses of various kinds, the impact when it occurs is less intense, less acute and less traumatic than with younger people” (Hughes 1995 Older People and Community Care: 123)

Those in nursing homes: Adler’s (1991: 33) ‘A critical study of the American nursing home’ shows lack of recognition of passing on in nursing homes for aged reflects the powerlessness of residents who are placated, infantilized, ignored, labelled and denigrated (Kellehear 2009: 14). Older people who are ill may become progressively removed from experiences which give meaning to their lives. Institutionalization in hospitals and nursing homes contributes to the process of depersonalization (McMurray 2004: 68). Majority of people who pass on in nursing homes do so from some chronic disabling condition other than cancer (McMurray 2004: 73)

Communication systems should be set up between palliative care services and nursing homes to ensure that specialist support continues throughout the illness experience. There should be a seamless transition if the move is from a hospice inpatient unit to a nursing home (McMurray 2004: 73) [Knowledge Gap: Are there such communication systems and transitions in Singapore?]

Two thirds of deaths in UK occurred in hospitals or other places caring for the sick...currenty 12-15% of all deaths occur in residential and nursing homes (see Shemmings 1996: 2) [Knowledge Gap: What are the figures for Singapore?]

Mental Health: Psychiatric problems experienced by palliative care patients neglected, possibly because of the belief that depression and anxiety are normal or untreatable in this population (Massie 1989) (Henderson 2004: 81). Palliative doctors poor at recognizing and treating depression in palliative care setting (Fallowfield et al 2001). Sometimes physical complaints in patients with known physical disorder can be ascribed to their mental illness and not give sufficient credence (Henderson 2000) (Henderson 2004: 82). Palliative care is now mainstream (see Henderson 2004: 89) but social nature of palliative care is challenged by patients with limited or no ability to effectively describe or discuss their difficulties (Henderson 2004: 90). [Knowledge Gap: How well are mental patients in Singapore able to describe their end-of-life needs? Are there ways in which current palliative care structurally excludes those with severe mental illness? (Henderson 2004: 90). Methods of evaluating palliative intervention in a population unable to verbalize a response would be of great value (Henderson 2004: 91)]

Learning and Intellectual Disability: People with learning disabilities were unlikely to be offered the full range of palliative care services (see McEnhill 2004: 104). Gaining consent for treatment from someone with mismatched understanding and performance skills is trying (see McEnhill 2004: 106). Information not shared openly between staff and people with intellectual disabilities, so the person may not be informed of their impending death (see McEnhill 2004: 108). Reasons for unequal access is complex, and may include diagnostic overshadowing, where illness is over attributed to learning disability (see McEnhill 2004: 106). There may also be the lack of awareness and training in learning disability amongst health professionals, and staff or family members may not have skills to recognize significance of symptoms.

Offenders: Many prisoners will view death in prison as the ultimate failure, and want to pass on in a secure environment of own choosing, surrounded by family and friends (Bolger 2004: 139). Challenges of caring for individuals in prison with a life-threatening condition (see Bolger 2004: 139-140): 1. Conformity to rules and regulations rather than flexibility to allow for individual choice 2. Overcrowding and poor facilities 3. Concerns about drug abuse may restrain efforts to provide appropriate pain and symptom control 4. Communication and delivery of service complicated by need to ensure security and public protection

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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.

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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'.

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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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Needs Assessment

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

• 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
• Ngee Ann Polytechnic survey in 2009 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 (Lien 2009)
• 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)

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 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.

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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.

• 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, it was reported that 80% of these senior caregivers (aged 60 years and above) need psychosocial support after their spouse passed away.

• Caregivers who were identified in our interviews to have more psychosocial care needs after the patients passed away are:
  • 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

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

• 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.

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Need for life closure & last wishes

Existing Resources

Gaps and Their Causes

Possible Solutions

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Past Advocacy and Research in Singapore

Policy-related Research and Articles

A Multi-disciplinary approach to end-of-life care (ST 12 Mar 2018)

• Official estimates of more than 10,000 Singaporeans expected to require end-of-life care by 2020.
• Hospice care provides more than nursing care. A hospice provides palliative care that requires a multidisciplinary approach to look after the medical, psychosocial, emotional and spiritual well-being of patients and their family members.
• Palliative care looks beyond pain control and is also concerned about the well-being of patients as well as their family members from the time of diagnosis to death, and even post-death matters in grief and bereavement.

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Bring Quality Care up a Notch at Nursing Homes(ST 28 Nov 2017

• MOH’s Enhanced Nursing Home Standards (ENHS) took effect in April 2016.
• Tightened rules, which all nursing homes have to abide by, aim to articulate three aspects – clinical care, social care, and governance and organizational excellence.
• There are more than 70 such facilities here
• As people become more affluent, the traditional model of providing medical care is no longer sufficient.
• Nationwide surveys have shown that the overall satisfaction level of nursing home residents stands at more than 90 per cent
• One nursing home, Good Shepherd Loft, almost had their license suspended in November 2016, as they had been found to be giving insulin injections and medicine intravenously to some residents during inspections at the beginning of the year. Such injections may be given only by a nurse registered with the Singapore Nursing Board.
• MOH had then said that the home’s license would be shortened to Nov 28, but since the last inspection prior to renewal showed that the Home had begun to demonstrate sustained efforts to comply with the nursing home licensing requirements to improve its care to its residents, the license was renewed to last till August 2018

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Raising Standard of Nursing Homes (ST 9 Sep 2017)

• MOH has been working with AIC to help nursing homes achieve the ENHS standards through initiatives such as baseline assessments, training and sharing of best practices.
• Nursing homes have introduced greenery, have more designated communal areas for seniors, designated quiet rooms.
• Since 2012, AIC has organized an annual nutrition movement in collaboration with chefs from Singapore Chefs’ Association to promote good nutrition

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What Singapore can learn from Hong Kong in community nurses (ST 28 Jun 2017)

• Healthcare is shifting away from acute hospitals and into people’s homes, so the MOH is looking for ways to get nurses to follow suit.
• Currently, only 4900 of Singapore’s 34000 or so practicing nurses are in the community care sector. The ministry aims to add 900 more by 2020.
• Community nursing in Hong Kong is largely driven by the hospital clusters, which is what Singapore is looking into. MOH is looking at having several community nursing teams in the three integrated clusters that serve the different geographical regions, and each team will have between 10 and 15 nurses.

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Three-cluster Health System: It's about Integration, not Competition (ST 21 Jan 2017)

• Six public healthcare clusters merged into three
• Reasons for clustering into 6 in year 2000 was to “provide more integrated and better quality healthcare services through closer cooperation and resource sharing”
• However, three paradigmatic shifts in medicine and society:
  • ”Silver Tsunami” is here
  • Chronic diseases are rampant – if left unimpeded, we face a potential future where Singapore’s diabetic population will grow to a million
  • Government spending on healthcare has burgeoned from $1.2 billion in 2000 to $11 billion in 2016
• This reorganization is less about competition but more about integration, across healthcare and community services, focusing on health and healthcare
• But it is insufficient:
  • Reorganisation addresses only the public healthcare components of the ecosystem and does not formally invoke the private or the equally important VWOs
  • Patients still free to “cross clusters”, meaning the complexity of coordinating across clusters will defeat the purpose of reorganizing
  • Making structural changes without aligning incentives will not change behavior – Financial and policy levers will be needed to encourage providers, whether public, VWO or private to work together seamlessly with each other and with patients, and for Singaporeans to remain within the geography of their clusters

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Four Things to Consider in Review of Key Healthcare Services Law (ST 30 Oct 2016)

• MOH reviewed the Private Hospitals and Medical Clinics Act (PHMCA), which governs practices in medical facilities, including hospitals, nursing homes and laboratories, and was last amended in 1999.
• No category for hospices
• The lines between healthcare and hospitality have become somewhat blurred e.g. Farrer Park Hospital which is a “hospitel”
• Technology enables remotely delivered care
• Therefore, the review in 2016 focused on the service provided, rather than the site of care
• Four considerations proposed in article:
  • Futility to cover every possible permutation and stipulate rigid rules given the immense complexity of modern healthcare
  • Adopt a risk-based approach and consider the appropriate level of safeguards vis-à-vis the risks – ideally, there would be senior specialists from multiple disciplines at all hours of the day in every hospital but this comes at a very heavy staffing cost so regulators need to ensure healthcare costs are sustainable for society. To extend the reach of intensive care specialists introduce tele-ICUs.
  • Strike right balance between safety and being conducive to innovation. Ensure that innovation is not inadvertently stifled by clumsy regulations
  • Reviews should be holistic and regularly scheduled because inconsistent and incongruent rules from other acts are confusing, and because medical technology and societal norms will continue to evolve

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Healthcare Experts Call for Boost to Long-term Care Schemes (Hassan, Nadia Jansen, 8 Mar 2016)

• Suggestions for change for Eldershield:
  • Singapore MP Lily Neo: Turn Eldershield into Eldershield Life, as $300 and $400 per month is not adequate for full-time dependent care
  • Jeremy Lim: 6-year cap does not leave the severely disabled with peace of mind. If Eldershield gets redesigned to be “open-ended”, 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
  • CHAS: MOH said that as of Dec 2015, there were 1.4 million CHAS and Pioneer Generation cardholders, up from the 1.2 million in the previous year. 900 GP clinics and 650 dental clinics offered CHAS, compared to 450 and 210 respectively in 2012 when CHAS replaced the Primary Care Partnership Scheme. Should be made compulsory for all GP and dental clinics.

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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
• 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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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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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. However, cost savings would be generated through lower hospitalisation rates as these proposed living arrangements would ensure that elderly have the opportunities to be more mobile
  • "Safe but Soulless" by Radha Basu provided an overview of nursing homes today and suggested possible ways to overcome challenges. Chapters include:
    • 1: The State of Demand and Supply
    • 2: A Growing Need for Help with Daily Living
    • 3: The Challenges around Quality of Care
    • 4: Manpower Issues: Overworked, Underpaid
    • 5: Adding Purpose to Life in a Home
    • 6: Remodelling the Old 'Dorms of Dread'
    • 7: Aged Care Financing Requires a Revamp
    • 8: Are we doing Quality Control right?
    • 9: Private Players Plead for More
    • 10: Across the Causeway: Homes away from Home
    • 11: Rethinking the Choices for Tomorrow
    • 12: Recommendations: Considerations for Better Care
  • "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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End-of-Life Care Options

(Finance)Towards a Society of People who lead Longer, Productive Lives (ST 22 Feb 2018)

• Unlike commonly assumed, one of the main causes of the increase in healthcare costs is not an ageing population per se, but an increase in chronic illness (Professor Paul McDonald)
  • Singapore has the second-highest rate of diabetes in the world, and also high rates of high blood pressure and high cholesterol levels
  • Part of the increased healthcare costs should be attributed to the increased prevalence of chronic disease, and we should not let older people carry the blame, as it creates tension between generations and hinders targeted attention at the problem
• The second major cause of high healthcare costs is end-of-life care (Professor Paul McDonald)
  • Healthcare costs are the highest in the last 6 months of a person’s life, regardless of their age of death
• Therefore, a key challenge for Singapore's healthcare sector to reduce the impact and incidence of chronic illness and to find ways to help people make clear end-of-life plans
• Current re-employment legislation may inadvertently lead to discrimination against older workers. But no legislation passed to curb age discrimination in employment
  • Median age of Singapore’s workforce is 43, and is expected to rise to 47 by 2020. Currently 1 in 3 workers is already 50 years old and over, and will soon constitute the majority of the workforce. There is no place for age discrimination.
  • How well we adapt employment culture and eliminate ageism from employment practices will determine Singapore’s future economic and social viability
• Community Networks for Seniors model to bring together government agencies and community partners to do Active Ageing, Befriending and Care (ABC)
  • How to ensure that this model is sustainable and likely to meet people’s actual needs?

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Singapore's Move to Ensure Palliative Care isn't Disrupted for Patients is Financially Sound (ST 19 Feb 2018)

• Ensure palliative care for patients in nursing homes not disrupted even if something (e.g. bankruptcy) happens to the original palliative care provider, so that patients do not have to turn to the most expensive options – acute care hospitals – for treatment
• By appointing a temporary operator for residential care services, e.g. palliative care in nursing homes, as a stop-gap measure, to ensure that all patients continue to be cared for until they can be transferred elsewhere
• Extend the skill sets of palliative management beyond palliative specialists and also to the wider community. General practitioners (GPs), who are closest to the community and easily accessible, can help provide palliative care during a patient’s end-of-life journey.
• Community Care Manpower Development Award provides training support to GPs who want to provide care services for senior citizens

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Let’s talk about Advance Care Planning to Die with Dignity (ST 16 Dec 2017)

• ACP is relevant for people with a prognosis of weeks to months, such as in life-limiting advanced cancers, and also for those with a protracted course of an incurable illness that may span several years in neurodegenerative diseases such as dementia and motor neuron disease.
• ACP not only promotes self-determination in enabling people to decide autonomously what they desire for themselves, but it also helps family and friends navigate complex decisions for their loved ones, and allows the healthcare profession to safeguard ethical practice that upholds autonomy in the best interest of the patient.
• Like euthanasia, it puts patient autonomy at the centre of end-of-life decisions; but unlike euthanasia, it is not prescriptive of a certain final outcome, but responsive to what may arise.
• Study in 2015 and 2017 of Khoo Teck Puat Hospital patients showed that:
  • Less than half of the 158 patients were willing to partake in further conversations on ACP, and eventually only 22% went on to formally document advance directives
  • Those who had not been married and hence had limited family relations were more likely to embrace ACP. Likewise individuals who were better educated or had higher executive function which encompasses the ability to plan and make complex decisions.
  • Major reasons for unwillingness to engage included a preference to delegate end-of-life decisions to family members, inability or refusal to engage in such conversations, and an attitude of acquiescence to what the future holds.
• However, advance directives may in some situations limit possibilities by consigning the person to a self-imposed bondage. ACP may not always anticipate and encompass all possible scenarios, given that ACP discussions are by their nature hypothetical.
• ACP should be made in concert with one’s closest associates where appropriate, especially in an Asian society like outs where collective familial decision making have socio-cultural roots

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(Finance)Long-term Care: If this is so important, why aren’t we putting our money where our mouth is? (ST 7 Oct 2017)

• 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)
• Japan and South Korea, two other ageing Asian nations, both have LTC insurance schemes, as do similar European nations like the Netherlands and Germany
• Japan, Denmark and Australia also have nursing home systems which decouple the care and accommodation costs, such that care costs are means-tested and subsidized by the state or provided by insurance, while costs of staying in a nursing home are generally paid out of pocket by high income folk
• Australia’s higher-income earners who do not meet the means-test criteria can pay the fees on a daily rental basis or through a lump-sum refundable deposit of S$372,000. The principal amount is returned to the estate of the resident after his death
• For Singapore, a comprehensive and lifelong LTC insurance system is an obvious way forward. To improve coverage, Eldershield could be made compulsory and extended for life
• Co-payment schemes to enable elderly to age in place. As of FY2015, $240 million of the $600 million was spent on building senior care centres, ramping up home care services and providing means-tested subsidies
• However, despite the maximum 80% subsidy for those with per capita incomes of $700 or less, some seniors – including those who qualify for lower subsidies – find the co-payment amounts difficult to meet. Many don’t want to bother their children. Fees for the Integrated Home and Day Care package, for instance, can cost up to $2200 per month, before subsidies
• Rehabilitation services could also do with more funding. While senior sector leaders have underscored the importance of physiotherapy in helping nursing home residents improve their physical functions and to be discharged, current levels of funding allow for only one physiotherapist for every 100 residents or so. Local studies have also shown that newly disabled adults who live at home could be forgoing rehabilitation because of financial concerns.
• 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.
• New models of financing care are also necessary to help grow the private care industry. Private sector has played a limited role so far, but the demographic challenges cannot and should not be relegated to just the Government. Private organisations, entrepreneurs and private citizens should step up to contribute ideas, volunteer time and even implement projects. The Government, on its part, should reward innovation and enterprise, and not limit it with too much regulation.

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More in Palliative Care not Cancer Patients (ST 25 Sep 2017)

• When hospice care first began in Singapore, nearly every patient referred had cancer. Now, while cancer patients still form the bulk of those referred to palliative care, a growing number do not have the disease, and instead have chronic health problems that they have been grappling with for years e.g. organ failure (typically of the heart, lungs, or kidneys), dementia
• As such, hospice care has had to adapt to this growing demographic and its unique needs.
  • While cancer patients experience a slow decline over a relatively short period, the disease trajectory for other types of patients is typically longer and less predictable – cancer patients usually live about 3 months after being referred to the hospice, but for patients without cancer, palliative care is helping them to live with a good quality of life
  • While much of cancer care is focused on alleviating pain, palliative care for other conditions also involves dealing with issues such as breathlessness or confusion, or the loss of the ability to communicate. Nevertheless, activities can be designed so that they remain engaged even in their final days
• Increasing number of inpatient consultations for palliative care demonstrates the value placed by other clinicians on the palliative care team’s input
• But the Singapore Medical Council’s annual report states that there were only 28 palliative care physicians registered in 2016, out of 5000 specialists – this is double the number on the register 4 years ago, but experts say it is not enough

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More being done to help Terminally Ill, Caregivers (ST 31 Jul 2017)

• New developments in end-of-life care include:
  • Co-locating a childcare facility within a nursing home and hospice
  • Conducting a study on grief and bereavement to find out how to support caregivers better
  • Getting neighbours in estates to befriend and give emotional support to grieving relatives of those who have died
• ”Compassionate city” – places that enlist major sectors of the community to support the dying by reducing the mpact of social illnesses, caregiving and bereavement. Whole-of-society approach to end-of-life care by partnering people and private-sector organisations to promote awareness of end-of-life issues and build a compassionate society together
• 2015 Quality of Death Index by EIU shows that Singapore did well in affordability and quality of care, but fared the weakest in community engagement

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Improving End-of-Life Care for Patients (ST 28 Jul 2017)

• Over next three years, MOH will be working with the Singapore Hospice Council to improve the way people are cared for at the end of their lives by plugging “existing service gaps” (Health Minister Gan Kim Yong)
• Aim to reach out to 100,000 Singaporeans over the next four years to get people talking about end-of-life care at an earlier stage
• Singapore Hospice Council will 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
• Two regional health systems – Eastern Health Alliance and National Healthcare Group – will be running pilot programmes to provide palliative home care for non-cancer patients targeted to reach out to about 3,000 patients over the next five years
• Provide more seamless palliative care for patients with end-stage organ failure so as to avoid unnecessary hospital visits

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When I’m 64… What kind of Singapore can I grow old in? (ST 7 Aug 2016)

• There has been so much talk over the last 20 years, and not enough action, when it comes to the ageing issue in Singapore
• In the 1990s, a slew of reports suggested changes to housing options, and to financing. There was much talk of sheltered housing - that lets people age in home-like surroundings, with supports for medical and living needs nearby.
• In 1997, a Straits Times survey found that 4 in 10 worry about housing for their old age, 1 in 3 of those with children do not want to live with them when old, 38% said they could live in a retirement block within an HDB estate;

27 % would consider commercial retirement homes; and 14 % would consider a nursing home.

• Passively managed life-cycle funds that CPF members can invest in were proposed, but 8 in 10 of those who withdraw their CPF Ordinary Account to invest in the CPF Investment Scheme would have been better off, or just as well off, if they had just left their money in the CPF. However, private pension funds have a chance for higher returns. Retirement financing needs a rethink.

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Psychological and Medical Aspects

Information and Advanced Care Planning

3 Questions to ask on End-of-Life Care Choices (ST 6 Mar 2018)

• Family members should start a dialogue with the elderly person to manage his expectations, as outlook toward end-of-life care and the choices made in advance care planning vary widely between patients and caregivers
• The 3 questions are:
  • Where do they wish to spend their final days? Home hospice care, hospice daycare centre, live-in caregiver, nursing home, hospitals?
  • What are the medical choices to weigh? Pursue aggressive treatment or focus on providing comfort? Consideration of pain management (dosage of painkiller) and the choice of “do not resuscitate” order
  • What are the social and spiritual choices that can boost the quality of one’s end-of-life care? Preparing a will, asking the patient who he wants to be surrounded by during his last days, and making arrangements for spiritual and psychological support

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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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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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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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Medical Concerns

(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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Patients' Quality of Life

Tend to the Spirit of the Dying (ST 28 Dec 2017)

• Pain in terminally ill patients emanating as physical or psychological pain may progress into spiritual pain when the patient doubts the value and worth of his existence. This may be compounded by the perceived hopelessness, meaninglessness, guilt and a sense of being a burden to family and friends. A sense of fear, foreboding, confusion and grief compounds the situation, further leading to a desire for a quick death.
• "Aid-in-dying" and "physician-assisted suicide", euphemisms for euthanasia, are means to providing death in a controlled, sanitised and quick manner by way of prescribing a drug or cocktail of drugs.
• This approach, however, does not consider the spiritual dimension of the human and seemingly affords a quick-fix physical solution to what is essentially a spiritual problem.
• Spiritual care is journeying with patients and seeing them off in a compassionate and loving way, neither hastening nor slowing that journey. It is to restore meaning, purpose and hope to patients right to the last moment of their life and impressing upon them that their continued existence, no matter how difficult it may be for others, is important.

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Hospice Care Benefits Patients and their Families (ST 25 Sep 2017)

• Hospice care help to make the final days of terminally ill patients fulfilling and meaningful
• Family members of cancer patients appreciate how prepared the hospice staff were for every contingency as they have a lot of experience, and even told them what words to say

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Quality can be More Important than just Quantity of Life for End-of-Life Care, say doctors (ST 25 May 2017)

• National Ethics Capability Committee set up in 2014 to design a framework to equip healthcare professionals with “a good understanding of clinical ethics that will inform and guide their professional practice” had submitted report to MOH
• Most doctors have a “professional bias towards rescue and survival”, but aggressive medical treatment may not be in the patient’s best interest. As such, sometimes, quality of life can be more important than quantity of life.
• Some doctors continue prolonging life because they fear legal backlash should they not do so.
• Even if this were end-of-life, how do I know if this is the right time to change the therapeutic goals from one based on quantity of life (or survival at all costs) to one that is focused on achieving the best possible quality of life and comfort? No absolute rules.
• Hospitals are putting in a process where such patient’s conditions and needs are reviewed periodically, since their condition can deteriorate subtly. Regular reviews ensure that treatment is aligned with the best care for the patient
• Decisions on the course to pursue should be discussed with the patient or family before a crisis occurs, so that doctors would not automatically treat the patient aggressively to keep him alive

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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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Caregivers

Study to be Conducted this year on Quality of Life of Caregivers (ST 3 Feb 2018)

• Nationwide study will be conducted by National Council of Social Service (NCSS) in second quarter of this year to better understand the impact on long-term caregivers and the support they need
• Survey those caring for children, adults with disabilities as well as persons with chronic illnesses and mental health issues.
• 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
• Results to be released in the second half of 2019
• 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
• AIC started the Nursing Home Respite 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.

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Caring for the Caregiver (ST 2 Nov 2017)

• 2010-2011 Survey on Informal Caregiving, commissioned by the former MCYS
• Based on research on the needs of care recipients who needed human assistance with at least one daily living activity
• 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
• Caregivers have to deal with the upheavals in life, engage the patient in discussions about bereavement care through a sensitive approach
• 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

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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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Spiritual, Religious Aspects

Buddhist, Confucian and Taoist 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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Catholic and Protestant 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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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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Pairing Seniors a Plus for Empathy (ST 17 Apr 2012)

• Growing interest among elderly to help keep an eye out for other old folk in the are
• Seniors can better appreciate the needs of another senior, compared to a younger volunteer
• For example, at Asian Women's Welfare Association (AWWA) Seniors Activity Centre, there were 20 senior volunteering (year 2012).

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Nurses' Initiative for Community Engagement (NICE)

• Ground-up community service initiative by a group of nurses, doctors and lay volunteers, reaching out to vulnerable home-bound seniors in the community
• Volunteer registered nurses conduct individualised one-to-one home visits to do health assessment, health literacy and counseling

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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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Resource Directory

Government Policy and Organisations

Government Organisations

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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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.

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Ministry of Health (MOH) Statistics on Admissions and Outpatient Attendances, as well as home and in-hospice palliative care, is provided

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End-of-Life Planning

There are two legal documents:

Advanced Medical Directive (AMD) was started in 1997. It 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.

There is one non-legal option:

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 :

• understand their medical condition and potential future complications;
• understand the options for future medical care as it relates to their current health condition;
• reflect upon their goals, values and personal beliefs;
• consider the benefits and burdens of current and future treatments;
• 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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Palliative Care

National Cancer Centre Singapore, Department of Palliative Medicine NCCS is the first institution to establish a stand-alone Division of Palliative Medicine in Southeast Asia. It provides care to patients with cancer by optimising pain and symptom management and psychosocial support. It also provides similar care to patients with advanced stages of neurological diseases and advanced kidney, heart, lung and liver failure where symptoms are troublesome.

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National University Hospital (NUH) As more elderly have died in the Emergency Department (ED) in recent years, NUH started a dedicated palliative care service in its emergency department to relieve patients' suffering. The ED has carved out a quiet room where family members can spend their last moments with the patient, instead of being surrounded by beeping machines and busy hospital staff. Doctors and nurses in the ED will also be trained to prepare family members for the death of their loved ones.

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Palliative Care @ TTSH Services provided include

• Inpatient Palliative Care Services
• Dedicated Palliative Care Ward - specialised 13-single bedded Palliative Care ward
• Outpatient Palliative Care Services
• Care Continuity - by collaborating with Hospice partners to ensure seamless care transition for patients who want to transit to home or to inpatient hospices to receive palliative care. Partner Hospices include Dover Park Hospice, Assisi Hospice and HCA Hospice Care.

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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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Project: One More Thing A youth movement started by the non-profit group Youth Without Borders to fulfill the wishes of elderly folk from hospices, day care centres and poorer neighbourhoods. Using social media, the group posts these wishes online in order to connect the youth and elderly in the community.

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Senior Activity Centres Located in the void decks of HDB rental blocks, the elderly living nearby are encouraged to spend their time at the centres, where they can meet their neighbours to chat, do some exercises and enjoy fun activities.

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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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