End of Life

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 (IOM 2003: 55).There is no exact definition of the interval referred to as end of life, and is defined by the regulatory environment rather than by scientific data, which shows it is not possible to accurately predict an individual’s time of death (NIH 2004: 5).

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

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

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

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

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

Target Population: End of life issues faced by vulnerable seniors

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

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

See HDB publications:

• Well-Being of Elderly (see page 130 onwards) [2]
• Profile of HDB Elderly and Future Elderly Resident Population (page 26)[3]

Client Segments

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

Size of Target Population

We estimate that about 20,000 vulnerable seniors will need end of life care, and the demand of end-of-life care for vulnerable seniors will continue to increase over the years. Depending on the specific indicator used for wealth, there were about 18,000-25,000 low-income seniors in Singapore in 2008. There were about 22,000 seniors who were living alone in HDB flats in 2008, and many of these had no family support. Furthermore, with the rapidly aging population that 1 out of 5 will be aged 65 years old and above by 2030, seniors living alone may rise from 35,000 now to 83,000 by 2030.

Palliative Care System in Singapore

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

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

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

However, 50% if Singaporeans are unaware of hospice palliative care. In particular, awareness is low among the older Chinese Singaporeans - only one in four claim to be 'aware'.[4]

Desired outcomes- What is a Good Death

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

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Past Research in Singapore

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

SUGGESTED ACTIONS[5]:

• 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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When Age Matters (IPS Commons, 2016)

SUGGESTED ACTIONS[6]:

• Open conversations, acknowledge existing problems, using specific terms such as “age-friendly”, “age-aware” to set a different, more friendly tone
• Workplaces to acknowledge needs and capabilities of workers of different age groups. Arrange for training, counselling and wellness programmes as a direct but encouraging acknowledgment of their needs

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Healthcare Services and Accessibility for the Elderly

SUGGESTED ACTIONS[link here]:

• 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

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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

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[7]

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.[8]

Needs of People Facing End of Life Issues (NCSS)

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

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

Existing Resources

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

Gaps and Their Causes

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

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

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

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

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

Possible Solutions

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

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

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

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

Existing Resources

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

Gaps and Their Causes

Possible Solutions

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Need for access to understandable information & effective referral

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

Existing Resources

Gaps and Their Causes

Possible Solutions

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Need to manage pain & symptoms

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

Existing Resources

Gaps and Their Causes

Possible Solutions

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Need to die under conditions and place of own choice

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

Existing Resources

Gaps and Their Causes

Possible Solutions

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

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

Existing Resources

Gaps and Their Causes

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

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

Possible Solutions

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

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

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

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

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

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Need for caregivers to have bereavement and post-demise support

Existing Resources

Gaps and Their Causes

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

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

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

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

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

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

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

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

Possible Solutions

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Need for life closure & last wishes

Existing Resources

Gaps and Their Causes

Possible Solutions

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Resource Directory

Government Organisations

Agency for Integrated Care (AIC)

Under the Ministry of Health, AIC coordinates and facilitates efforts among care providers for care integration. [9] 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[10] at the Gunderson Health System in Wisconsin, US. [11]

Appropriate Care Guide (ACG)

Under the Ministry of Health (MOH), ACG was created:

• Topics raised by relevant professional bodies/individuals
• 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

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. [12]

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. [13]

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. [14]

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. [15]

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. [16]

Other Non-Governmental Organisations

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.

Singapore Cancer Society

Catholic Medical Guild of Singapore hosted the End-of-Life Forum on 19th November 2016 at the Catholic Archdiocesan Education Centre, with the intention for participants to find answers to end-of-life issues from the perspective of faith. [17]