Needs Assessment of End of Life Care

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

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.[1]

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[2].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[3].

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” [4].

  • This means going beyond acute conditions like cancer to encompass other life-limiting illnesses and chronic and debilitating conditions with different death trajectories, 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 [5].
  • ‘End-of-life’ also refers 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.
Organisation Areas of Focus
National Institutes of Health (NIH) [6]
  • 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
Institute of Medicines (IOM)[7]
  • The management of symptoms;
  • Spiritual and personal growth;
  • A familiar setting, surrounded by loved ones;
  • Understandable information to guide decision making and planning;
  • Confidence that one will not be a financial, emotional, or physical burden to family members;
  • The right of self-determination and control of treatment choices.
Quality of Death Index: Ranking Palliative Care across the world[8]
  • Palliative and Healthcare Environment
  • Human Resources
  • Affordability of Care
  • Quality of Care
  • Community Engagement

Palliative Care System in Singapore

Palliative care in Singapore began 20 years ago as a grassroots movement caring for patients at home. In 2007, palliative medicine had been recognised as a medical subspecialty by the Ministry of Health (MOH), and hospice care services provided by the Voluntary Welfare Organisations (VWOs) had expanded beyond home care to inpatient care and day care.

Now in Singapore, most people receive hospice and palliative care at home. In-patient hospice care becomes necessary only when the patient cannot be cared for at home {Citation Needed}. This is in line with the national policies of encouraging aging-in-place and family as the first line of support.

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

Why do we need more palliative care in Singapore?

  • By 2030, one in four citizens will be 65 or older, with the top three causes of death being chronic, or related to chronic, illness (Cancer - 29.7%; Pneumonia - 19.4%; and Heart Diseases and related conditions - 22.8%).

Moving towards services for non-cancer patients

  • Historically, palliative care was for cancer patients, but recently, with increasing numbers of non-cancer palliative care patients[9], there has been more recognition on the need to reaching out and helping non-cancer patients.
  • 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 the Death Attitudes Survey, 77% of Singaporeans wish to die at home, but government statistics show that only 27% of deaths in Singapore take place at home[10]
  • In our study (NCSS), 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 increase in an ageing society like ours and with many who wishe to pass on at home.

Financial Cost of Palliative Care

  • The cost of palliative care is estimated to be S$290 per day for inpatient care, less than S$100 per day for home consultations and S$12 per day for day hospice care.
  • Government subsidies are available - up to S$200 per day may be used from the Medisave. Financial assistance from Voluntary Welfare Organisations (VWOs) is also available for patients in need[11].
  • The Death Attitudes Survey revealed that 64% of Singaporeans viewed palliative care as expensive [12]

Quality of Death Index: Ranking Palliative Care across the world (Economist Intelligence Unit, 2015)[13]

  • Commissioned by the Lien Foundation
  • 2nd Quality of Death Index in 2015 places Singapore at 12th place out of 80 countries - As compared to its wealth, Singapore does not perform as well as one might expect, with a lot of catching up work to do for chronic diseases and end-of-life care
  • 1st 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

Target Population

The NCSS Report focused specifically on the end-of-life issues faced by vulnerable seniors, defined to be those who are old, poor and have limited or no family support.

  • In 2014, there were around 20,000 seniors who were poor and did not have adequate family support based on triangulating information from the Housing and Development Board (HDB) on seniors living alone, living in rental flats, earning less than $1000 a month.
  • 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).
  • By 2030, 1 out of 5 Singaporeans will be aged 65 years old and above
  • By 2030, seniors living alone may rise to 83000[14][15]

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

Desired outcomes - What is a Good Death

Research Title Definition of "a Good Death"
Approaching Death: Improving Care at the End of Life[16]
  • Free from avoidable distress and suffering for patients, families, and caregivers
  • In general accord with patients’ and families’ wishes
  • Reasonably consistent with clinical, cultural, and ethical standards
Describing Death in America[17]
  • 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 State-of-the-Science Conference Statement on Improving End-of-Life Care[18]

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[19]

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
Research Title Key Domains to Monitor Quality of Life and Care
Regulating how We Die: The Ethical, Medical, and Legal Issues Surrounding Physician-assisted Suicide[20]
  • Physical symptoms
  • Psychological symptoms
  • Social relationships
  • Economic and care giving responsibilities
  • Hopes and expectations
  • Philosophical or spiritual beliefs
Validation of Toolkit After-Death Bereaved Family Member Interview[21]
  • Symptom management
  • Shared decision making
  • Patient satisfaction
  • Coordination of care
  • Continuity of care
  • Importance of family information
  • Education
  • Support
  • Bereavement support
National Hospice Discharge Survey (NHDS) by American Geriatrics Society {Citation Needed}

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

Medical Aspects

Need to manage pain and symptoms

Synopsis: Not perfect, but palliative care is growing through efforts of many medical establishments and Ministry of Health (MOH)

Existing Resources Gaps and their Causes Possible Solutions
  • Singapore does well in opioid analgesics availability[22], as emphasized by the National Guidelines for Palliative Care and Interpretation Guide[23]
  • Research on the use of a protocol-based pathway, modified from Liverpool Care Pathway, revealed promising results in terms of improved physical comfort[24]
  • Use of sedation is still met with resistance due to its association with physician-assisted suicide[25]
 {To be added}

Infrastructure Needs

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

SYNOPSIS: Provide a range of options so that there are no barriers to care and needs of individuals are met

Existing Resources Gaps and their Causes Possible Solutions

QUALITY OF CARE

  • National Guidelines for Palliative Care and Interpretation Guide includes a desired outcome of “reduced barriers to care” to ensure that palliative care is available for all people based on clinical need, regardless of diagnosis, age, gender, financial means, ethnic and cultural background, and care setting[26]
  • MOH’s Enhanced Nursing Home Standards (ENHS) introduced in April 2016 for all nursing homes tightened rules to articulate three aspects – clinical care, social care, and governance and organizational excellence. [27] MOH and AIC help nursing homes meet the ENHS through initiatives such as baseline assessments, training and sharing of best practices.[28]
  • More options for palliative care in hospitals and nursing homes available in Singapore (see Resource Directory)
  • Stop-gap measure of the appointment of temporary operator for residential care services in the event that something happens to the original palliative care provider (e.g. bankruptcy) so that patients’ palliative care treatment is not disrupted[29]

MANPOWER

  • To have community nursing teams in three integrated clusters that serve different geographical regions in Singapore, with each team having between 10 and 15 nurses. However, this requires greater numbers of skilled manpower - only 4900 of Singapore’s 34000 or so practicing nurses are in the community care sector [30].

AFFORDABILITY

  • 9 focus groups with a total of 63 participants discussing end-of-life preferences identified “avoiding expensive care” and “avoiding burden on the family” as components of good end-of-life care. As such, more affordable options need to be available [31].
  • The Death Attitudes Survey showed that many viewed hospice palliative care as costly – more than two in five respondents (43%) of those who would not consider hospice palliative care cited high costs as the reason. [32]
  • Healthcare costs in the last 6 months of a person’s life are the highest, regardless of the age of death. Therefore, a key challenge is to find ways to help people make clear end-of-life plans[33]

QUALITY OF CARE

  • 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. [34]
  • The Private Hospitals and Medical Clinics Act (PHMCA) governs practices in medical facilities, including hospitals, nursing homes and laboratories, but does not include hospices[35]

MANPOWER

  • MOH aims to add 900 more community care nurses by 2020. [36]

AFFORDABILITY

{To be added}

QUALITY OF CARE

  • New ideas for hospice care in future generations[37]

Need for access to understandable information & effective referral

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

Existing Resources Gaps and their Causes Possible Solutions

COORDINATION

  • The desired outcome in the National Guidelines for Palliative Care and Interpretation Guide include “Coordinated Care” (ensuring continuity of care across settings and over time)[38]

PLANNING

  • The desired outcomes in the National Guidelines for Palliative Care and Interpretation Guide include “Coordinated Care” (ensuring continuity of care across settings and over time)“Holistic Assessment and On-going Care Planning” (interdisciplinary care to meet the changing needs and wishes of patients, caregivers and families), and “Advance Care Planning”. [39]
  • Project CARE, started by Tan Tock Seng Hospital (TTSH) and funded by MOH, deployed doctors, nurses and medical social workers to the nursing homes in the area daily to assess the residents’ medical conditions and meet residents and families to discuss ACP. Results showed per-resident cost savings of S$7129 over the last 3 months of life and S$3703 over the last month of life, thus demonstrating substantial savings associated with information and planning given through an end-of-life programme. [40]
  • Many means through which individuals may prepare for end-of-life, including Advanced Medical Directive, Advance Care Planning, and Lasting Power of Attorney (Refer to End-of-Life Planning)

INFORMATION

  • Appropriate Care Guides (ACG) developed by MOH would address topics of concern, including end-of-life care. The first two ACG have been on diabetes-related concerns. [41]

COORDINATION

  • Lack of coordination as patients move from acute hospital system to long-term treatment and support. Current healthcare system lacks financial, social and physical support for patients who wish to die at home. [42] This need for better coordination of care was also identified by the Report on the National Strategy for Palliative Care[43]

PLANNING

  • Slow uptake of ACP: A survey by Khoo Teck Puat Hospital in 2015 and 2017 showed that less than half of the 158 patients surveyed were willing to partake in further conversations on ACP, and eventually only 22% went on to formally document advance directives[44]
  • Concerns about how advance directives may in some situations limit possibilities by consigning the person to a self-imposed bondage, as ACP may not always anticipate and encompass all possible scenarios, given that ACP discussions are by their nature hypothetical. [45]
  • 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 [46]
  • These values and beliefs may lead to unnecessary suffering prior to death, for example, when patients die painfully because families insisted on treatments [47]

INFORMATION

  • Professionals interviewed by NCSS generally reported that public awareness of hospice care services was low and talking about death was still a social taboo in the society
  • The Death Attitudes Survey in 2009 by Ngee Ann Polytechnic found that 80% of the respondents knew that hospices provided a place of care for the terminally ill, but half were not aware of the availability of hospice services in Singapore[48]

INFORMATION

  • Relay understandable information to seniors through community touch points.
    • Equip various community touch points, such as 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.
    • Move the communication upstream, so information can be provided to seniors even before they enter the medical system.

COORDINATION

{To be added}

PLANNING

{To be added}

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

SYNOPSIS: Provide a sense of completion to the terminally ill patients by ensuring that individuals have autonomy and dignity to choose the place and conditions of death

Existing Resources Gaps and their Causes Possible Solutions
  • One component of good end-of-life care identified by 9 focus groups with a total of 63 participants is “achieving a sense of completion” [49]
  • One desired outcome from the National Guidelines for Palliative Care and Interpretation Guide includes “Care in the Last Days of Life” which ensures that care is taken to fulfil the needs of patients in the last days of life, as well as those of their caregivers and families. [50]

PLACE OF CHOICE

  • More options for palliative care in hospitals and nursing homes available in Singapore (see Resource Directory) e.g. Project Going Home by Jaga-Me[1] – a start-up that offers free nursing services to financially needy patients on a terminal discharge, and home delivery service of medicines.

LAST WISHES

  • Started by non-profit group Youth Without Borders, Project: One More Thing [2] aims to fulfil the wishes of the elderly folk from hospices, day care centres and poorer neighbourhoods by connecting the youth who can fulfil these wishes with the elderly in the community.

PLACE OF CHOICE

  • Greater numbers of skilled community care nurses - only 4900 of Singapore’s 34000 or so practicing nurses are in the community care sector [51].
  • Improvement in end-of-life care provision in the emergency department, especially for many patients already with chronic illness trajectories of dying. A study of 197 patients who died in the emergency department showed that although 46.5% had a premorbid functional limitation, only 14.9% of patients had a pre-existing resuscitation status and 74.3% received aggressive resuscitation measures[52]
  • Significant differences in attitudes and decisions regarding end-of-life care among patients, relatives and healthcare providers. As a result, it is important to elicit patient preferences during treatment, or have end-of-life plans in place, rather than rely on caregiver input [53][54].
    • Familial determination still wields significant influence [55]
    • Sometimes aggressive medical treatment may not be in the patient’s best interest, but some doctors continue prolonging life because they fear legal backlash should they not do so. [56]

LAST WISHES

  • Take-up rate of Project: One More Thing seems slow{Citation Needed}

PLACE OF CHOICE

  • MOH aims to add 900 more community care nurses by 2020. [57]

LAST WISHES

{To be added}

Financial Considerations

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

SYNOPSIS: Current retirement financing schemes are inadequate for intermediate and long-term care

Existing Resources Gaps and their Causes Possible Solutions
  • Central Provident Fund (CPF)
  • Medishield Life - basic universal health insurance scheme introduced in 2015 with improved protection for life and higher payouts, and broader coverage for all Singaporeans, including the very old and those with pre-existing conditions
  • Eldershield - payouts of $300 or $400 a month, over a fixed period of either 60 or 72 months, depending on the plan chosen.
  • Silver Support Scheme (SSS)- Tax-financed, non-contributory income supplement scheme for the bottom 20% income of Sinaporeans aged 65 and above, with eligibility based on criteria such as lifetime ages and contributions to the CPF, level of household support, monthly income per person and housing type
  • Pioneer Generation Package - increased subsidies for healthcare, Medisave account top-ups, Medishield Life premium discounts, and financial support for those with sever functional disabilities
  • Community Health Assist Scheme (CHAS)[58]
  • Funding for intermediate and long-term care services - significant reliance on charities, VWOs and private organisations
  • Eldershield is not universal in coverage
    • 41% of those eligible in 2013 were not covered under the scheme[59]
    • Inadequate for full-time dependent care over the long term, as amount does not even cover the wage of a foreign domestic worker [60]
    • Sub-optimal risk-pooling since it is administered by three private insurers - Aviva, Great Eastern and NTUC Income - and cover only less than one-third the size of the total 3.5 million MediShield policyholders, there might be sub-optimal risk-pooling
    • Elderly with monthly household income per capita above $2,200 and not covered by Eldershield or Interim Disability Assistance Programme may have to rely on their own out-of-pocket payments to finance their own and their elderly parents' long-term care needs. [61]
  • Many elements of Singapore's pension system are not inflation indexed
  • 3-year gap between CPF payout eligibility age of 65 and the statutory retirement age of 62 years[62]
  • Alternative measures need a rethink - although CPF members have the option to withdraw their savings from the Ordinary Account to invest in the CPF Investment Scheme, 8 in 10 people would have been better off, or just as well off, if they had just left their money in the CPF instead [63].

Expand current schemes:

  • To expand Eldershield to be comprehensive and lifelong, it would make sense for the Government to take a larger role, as they have the reserves to risk pool and bear more of the risk around uncertainty of how long people live[64][65]. May be better to consolidate the administration of the basic Eldershield within a government agency like CPF Board, similar to the reforms for MediShield done in 2005. [66]
  • Raise the SSS payout, which seems too low for current cost of living[67]
  • Expand Medishield to include all Singaporeans regardless of age or pre-existing illnesss, and ensure that all Singaporeans can pay the premium. Limit individual’s risk of medical bankruptcy by putting a cap on what they have to pay as their share of the total bill[68]

Singapore government can increase healthcare spending in the long-term care sector[69]:

  • 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)
  • The Singapore government has ramped up healthcare spending from $4 billion in financial year 2011 to $9.8 billion in 2016. 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. 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.

Family, Society, Polity

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

SYNOPSIS: Cultural values may hinder information disclosure to patients

Existing Resources Gaps and their Causes Possible Solutions
  • One desired outcome in the National Guidelines for Palliative Care and Interpretation Guide was 'Timely Identification' to ensure that people approaching the end-of-life are identified in a timely manner[70]
  • The International Conference on Clinical Ethics and Consultation (ICCEC) held in Singapore in 2017 examined changing attitudes to end-of-life care[71]:
    • End-of-life decision making factors, such as mental capacity, quality of life, and vulnerability.
    • Clinical, cultural and institutional practices and context that shape patients preferences and beliefs at the end-of-life.
    • Tools for making healthcare decisions before the patient loses capacity and palliative care.
  • In general, cultural values may impede advanced care planning needed to let patients make informed choices about their end-of-life options. 1 in 4 who was admitted did not know about their diagnosis, 1 in 2 was unaware of their prognosis, and many were not ready to engage in advanced care planning, in a survey done in 2010 (ST 1 Dec 2011). {Citation Needed}
  • 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.

Involve religious groups to do public education on end-of-life issues.

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

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

SYNOPSIS: Beyond medical care, need to provide dignity to individuals who are terminally ill through multidisciplinary approach [72]

Existing Resources Gaps and their Causes Possible Solutions

PSYCHOSOCIAL WELL-BEING

  • 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. [73]
  • Terminally ill seniors who need psychosocial support services will be referred by the hospice nurses to their in-house psychosocial care staff i.e. medical social workers or counsellors, for assessment, case management and counselling services.
  • MOH started funding psychosocial visits (social worker’s visits) to patients’ homes in 2010
  • Hospice care have helped to make the final days of the terminally ill patients fulfilling and meaningful, and have accumulated experience in caring for the patient and helping caregivers care for the patient [74]
  • SPARKS! Art Wellness Exhibition for nursing home residents to create their own art projects to improve their quality of life[75]

COMMUNITY INTEGRATION

  • Co-location of childcare facility within a nursing home and hospice in St. Joseph’s Home
  • Projects getting neighbours in estates to befriend and give emotional support to grieving relatives of those who have died)[76]
  • Pairing seniors to keep an eye out for other old folk in the area[77]
  • Nurses’ Initiative for Community Engagement (NICE) started by a group of healthcare workers to reach out to vulnerable home-bound seniors in the community through one-to-one home visits[78]

PSYCHOSOCIAL WELL-BEING

  • Inadequate 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[79]

COMMUNITY INTEGRATION

  • While Singapore did well in affordability and quality of care, it fared the weakest in community engagement[80]
  • Fear of backlash leads to unnecessary prolonging of life through aggressive medical treatment that leads to poorer quality of life[81]

PSYCHOSOCIAL WELL-BEING

MOH expand funding for psychosocial support services

  • Include other services that hospice service providers initiated to provide psychosocial support to patients and allow them to be meaningfully engaged in their last few days.

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.

COMMUNITY INTEGRATION

Move towards community model/communal projects in ‘whole of society’ approach

  • Start communal/volunteer programmes in palliative care such as tapping on community resources such as skilled/experienced former caregivers to be the volunteers or to be the trainer to other volunteers, so as to provide psychosocial support, or even instrumental support, to patients
  • Overseas models for reference:
    • Home Hospice (Sydney) uses a community development approach to deliver a community mentoring program for carers who want to care for terminally ill person at home. Mentors are volunteers who themselves have been carers or part of a caring network for a terminally ill person. Mentor is paired with carer, helping caregiver to find and access formal services where available.
    • A multidisciplinary, interfaith, grassroots community group of professionals and laypersons created a replicable model to enhance palliative and end-of-life care. The Collaborative for Palliative Care leverages existing community assets and capacities within the health and social service programs of Westchester County, New York, resulting in a unique public-private partnership. It has played a critical role in changing the culture of care for residents of Westchester who are faced with the challenges of serious and terminal illness.

Need for understanding and provision of spiritual needs

SYNOPSIS: {To be added}

Existing Resources Gaps and their Causes Possible Solutions

Various research available on the Buddhist, Confucian and Taoist perspectives towards death

  • Contrary to traditional reliance upon gender to determine care roles, nearly 60% of caregivers and 40% of patients prioritized availability, willingness and capability of family members, as well as their financial and personal situations as key determining factors of caregiver choice[82]
  • Buddhist practice impacting choice of pain control and sedation[83]
  • Familialism still important to the Chinese[84]
  • Confucianism and filial piety were used to justify the caregiver’s choice of Traditional Chinese Medicine over conventional Western medicine[85]

Various research available on the Catholic and Christian perspectives, towards death and dying

  • Healthcare Christian Fellowship for healthcare workers, including palliative care workers to address issues of ethical dilemmas e.g. assisted suicide[3]
  • End-of-Life Forum for participants to find answers to end-of-life issues from the perspective of faith[4]
  • Christian’s perspective of death is that it is not the end of the person, as the person will live triumphantly and perfectly in the Lord; sanctity of life is fundamental so deliberate shortening of life is against doctor’s calling[5]
  • Less emphasis on the spiritual needs and personhood of the patient [86][87][88]
  • Lack of research available on the Islamic and Hindu perspectives of death in Singapore
 {To be added}

Need for caregivers to have support throughout caregiving process

SYNOPSIS: {To be added}

Existing Resources Gaps and their Causes Possible Solutions
  • National Guidelines for Palliative Care and Interpretation Guide highlighted “Caregiver Support” (supporting caregivers who face significant stress in their caregiving roles)[89].
  • Respite care services to reduce burnout[90]:
    • AIC started the Nursing Home Respice Care programme in 2013 that allows caregivers to leave their loved ones at a nursing home for up to 30 days. This programme is now available at more than 40 nursing homes, up from 15 in 2013.
    • Selected daycare centres and nursing homes have respite services to avoid caregiver burnout. Usage of these respite services has increased by at least 50% between 2015 and 2017
  • Research has shown that caregivers with higher social support satisfaction and who had a religion predicted higher quality of life[91]
  • 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.
  • A 2010-2011 Survey on Informal Caregiving commissioned by the former Ministry of Community, Youth and Sports found that nearly half (45%) of potential caregivers said they needed help or training to properly care for an elderly family member (aged 75 and above). Those who reported significantly higher stress faced disrupted schedules, as well as health and financial problems that resulted from their caregiving duties. Caregiver burnout is defined as “a state of stress or distress for a prolonged period of time” (Help for Cancer Caregivers). Stress happens when caregivers feel they do not have time to do all that is asked or expected of them. [92]
  • 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.
  • 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.

Lack of information on caregiving work to be addressed with a nationwide study conducted by NCSS in 2nd quarter of 2018 to better understand the impact on long-term caregivers and the support they need.

  • By surveying those caring for children, adults with disabilities as well as persons with chronic illnesses and mental health issues, the study seeks to find out the level of social support caregivers receive, their psychological needs and their relationship with the ones they care for. The findings will enable agencies to plan for services that will be useful to caregivers. [93]

Need for caregivers to have support throughout bereavement process

SYNOPSIS: {To be added}

Existing Resources Gaps and their Causes Possible Solutions
  • National Guidelines for Palliative Care and Interpretation Guide highlighted “Bereavement Care” (family members are offered timely bereavement support appropriate to their needs and preferences)[94].
  • Neighbours in estates befriend and give emotional support to grieving relatives of those who have died[95]
  • Hospice staff have a lot of experience in helping family members communicate with their loved ones before passing[96]
  • 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
  • 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 (NCSS).
  • 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.

Research on current status of post-demise care work

  • There is a need to study more to understand the area of post-demise care work which is being done right now by psychosocial care staff, for example, the intensity of work, the attitude of caregivers/bereaved families (are they really unwilling to be referred to FSCs?), the demand of post-demise care, the funding needs of post-demise care in hospice, as well as the best service model to deliver this help and to make the transition of care from hospice to other providers like FCSs smoother.

Data collection through EPES

  • To support the further research on post-demise care, we recommend that NCSS could help out with preliminary data collection through EPES submission to reflect the amount of post-demise work hospice service providers are doing from FY13 onwards, so as to validate what the social workers are reflecting to us in the current study, and to advocate for funding for post-demise care in the hospice setting.

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

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

Existing Resources Gaps and their Causes Possible Solutions

Public education campaigns to increase public awareness of end-of-life care options

  • ‘Die Die Must Say’ – a getai performance that targeted the Chinese-speaking community in Singapore to de-mystify and de-medicalise daunting end-of-life conversations[97]
  • 'Both Sides, Now'[6] - A community engagement project about what it means to live well, and leave well, and an ongoing project by the co-presenters since 2013. Presented by Lien Foundation, Ang Chin Moh Foundation, Drama Box and ArtsWok Collaborative, the current 3-year iteration will see a longer-term community-centric approach in two communities, with community collaborators, Khoo Teck Puat Hospital in Chong Pang, and Montfort Care in Telok Blangah.
  • Good Death Project by Montfort Care - Aims to abolish the taboo surrounding death and envisions a death-friendly community that is open to holding conversations about living and dying well [98]
  • Living with the End in Mind – This study of 30 leaders aims to achieve greater widespread public and professional awareness, and to garner support for all relevant ways to enhance the environment for quality palliative and end-of-life care, from the home to hospice and hospital systems, and everything else in between, that can help facilitate a good death, for a better life. [99]

More newspaper articles about end-of-life care

  • Channel NewsAsia’s commentary series[100] that explores issues ranging from youths with terminal illness[101], to planning for passing[102]
  • Straits Times articles to explain the importance for family members to start a dialogue with elderly persons to manage expectations and do ACP[103]
  • Increased desire for “die-logues” amongst Singaporeans - 71% of respondents saw a need for such conversations, with 91% of respondents aged 50-59 years old and 90% of respondents aged 60 and above wanting more public education on hospice palliative care[104]
  • {Anecdotal information showed that vulnerable seniors with terminal illnesses—those with low-income and have little or no family support—were often not fully aware or were reluctant to engage the palliative care options open to them.} A survey conducted by Singapore Hospice Council also showed that public awareness of end-of-life care options was low in general, especially among low-income groups.{Citation needed}
  • The Death Attitudes Survey commissioned by Lien Foundation and conducted by Ngee Ann Polytechnic in 2009 also found that though 80% of the respondents knew that hospices provided a place of care for the terminally ill, half were not aware of the availability of hospice services in Singapore. [105]
  • The 2014 edition of the Death Attitudes Survey showed that only half of Singaporeans were aware of hospice palliative care, and only about a third of respondents could define what hospice palliative care is. [106]
  • The Report on the National Strategy for Palliative Care identified “promoting public awareness on end-of-life issues” as an area of improvement in the palliative care landscape in Singapore and the world. [107]
  • One of the key strategies developed through Action Plan 2016 was to initiate a National Conversation about end-of-life issues and develop an End-of-Life Toolkit to equip seniors with the necessary information in their decision-making process. Factors like rising life expectancy, growing numbers of educated elders, technological advances in healthcare and increasing acceptance of the concept of patient autonomy suggest the time is ripe for a cross-sectoral, national initiative on end-of-life planning[108]
  • MOH aims to work with Singapore Hospice Council to aim to reach out to 100,000 Singaporeans over the next 4 years to get people talking about end-of-life at an earlier stage. Singapore Hospice Council will also develop information packs on issues related to end-of-life care, such as palliative care services, advance care planning and making a Lasting Power of Attorney[109]

References

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  106. ↑ Lien Foundation, 2014. Second Death Attitudes Survey. Retrieved from http://lienfoundation.org/sites/default/files/Death%20survey%20Presser%20Final%20-%20Combined_0.pdf
  107. ↑ Report on the National Strategy for Palliative Care. Retrieved from https://www.duke-nus.edu.sg/sites/default/files/Report_on_National_Strategy_for_Palliative_Care%205Jan2012.pdf
  108. ↑ IPS, 2017. Year 2026: Doing Singapore Differently. Retrieved from http://lkyspp2.nus.edu.sg/ips/wp-content/uploads/sites/2/2016/07/Full-Report_Action-Plan-Singapore_160217.pdf
  109. ↑ Lai, 2017. Improving end-of-life care for patients. Retrieved from http://www.straitstimes.com/singapore/health/improving-end-of-life-care-for-patients
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