Needs Assessment of End of Life Care

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

Definitions and Scope

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

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

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

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

End of Life Issues that the NIH has focused on :

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

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

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

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

• Commissioned by the Lien Foundation
• Based on scale across five categories: Palliative and Healthcare Environment, Human Resources, Affordability of Care, Quality of Care, Community Engagement
• UK has the best quality of death, and rich nations tend to rank highest. This is due to UK’s comprehensive national policies, the extensive integration of palliative care into its National Health Service, and a strong hospice movement.
• Other rich Asia-Pacific countries have rankings in the top 20: Taiwan at position 6, Singapore at 12, Japan at 14 and South Korea at 18
• Countries with a high quality of death share several characteristics:
  • A strong and effectively implemented national palliative care policy framework;
  • High levels of public spending on healthcare services;
  • Extensive palliative care training resources for general and specialised medical workers;
  • Generous subsidies to reduce the financial burden of palliative care on patients;
  • Wide availability of opioid analgesics;
  • Strong public awareness of palliative care.
• Less wealthy countries can still improve standards of palliative care rapidly e.g. Panama is building palliative care into its primary care services, Mongolia has seen rapid growth in hospice facilities and teaching programmes, and Uganda has made huge advances in the availability of opioids.
• National Policies are vital for extending access to palliative care
• Training for all doctors and nurses is essential for meeting growing demand
• Subsidies for palliative care services are necessary to make treatment affordable
• Quality of care depends on access to opioid analgesics and psychological support
• Community efforts are important for raising awareness and encouraging conversations about death e.g. Dying Matters Coalition in UK, informal meetings called Death Cafes (also in Singapore)
• Palliative care needs investment but offers savings in healthcare costs
• Demand for palliative care will grow rapidly in some countries that are ill-equipped to meet it e.g. China, Greece, Hungary
• Previous Quality of Death Index in 2010 placed Singapore at 19th place out of 40 countries
  • Among 17,000 local deaths annually, about 20% received palliative care before their death, which is far less than the target of offering palliative services to 60% of those in need
  • Hospice day care should be open till 10pm, rather than 6.30pm, to facilitate easier pick-up of elderly relatives

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Palliative Care System in Singapore

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

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

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

Moving towards services for non-cancer patients Historically, palliative care 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.

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

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

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Target Population

The NCSS Report focused specifically on the end-of-life issues faced by vulnerable seniors. It defined vulnerable seniors to be those who are old, poor and have limited or no family support. In 2014, there were around 20,000 seniors who were poor and did not have adequate family support based on triangulating information from the Housing and Development Board (HDB) on seniors living alone, living in rental flats, earning less than $1000 a month. Adopting our broader definition of end-of-life care—given that these are elderly persons—they will have end-of-life issues whether they have been diagnosed with terminal illnesses or not.

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

The demand of end-of-life care for vulnerable seniors will continue to increase over the years. With the rapidly aging population that 1 out of 5 will be aged 65 years old and above by 2030, seniors living alone may rise from 35,000 now to 83,000 by 2030.

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Desired outcomes - What is a Good Death

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

IOM (2003: 22-3)

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

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

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

National Hospice and Palliative Care Organization Recommended Outcomes

Self-determined life closure

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

Safe and comfortable dying

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

Effective grieving

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

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

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

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

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

National Hospice Discharge Survey (NHDS)

Most common answers (in order of frequency)

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

Least frequently mentioned wishes

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

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

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Medical Aspects

Need	Existing Resources	Gaps and their Causes	Possible Solutions
Need to be identified, know and accept that they are facing end-of-life issues Entry to specialised end-of-life care is through the medical system, but this neglects ‘dwindling deaths’ that are more chronic.	Public education campaigns to increase public awareness of end-of-life care options e.g. Lien Foundations’ ‘Life Before Death’, 'Both Sides, Now' Initiatives e.g. National Healthcare Decisions Day - using life insurance as opportunity for end-of-life dialogue	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.	Relay understandable information to seniors through community touch points. Instead of campaigning online or conducting public education targeted at seniors directly, which usually turn out to be ineffective because of the language and media barriers, it might be more useful to equip various community touch points, such as Senior Activity Centre (SAC) staff or befrienders, with sufficient knowledge of end-of-life services & resources so they can relay the information to seniors who need such services/resources. Therefore, we recommend that we should move the communication upstream, and information could be provided to seniors even before they enter the medical system. Community touch points such as SACs can therefore do more to educate seniors about end-of-life care options in a culturally sensitive manner, and can even do some simple diagnostics before referring them to relevant services. Involve religious groups to do public education on end-of-life issues. It might be easier to openly talk about end-of-life issues when discussing spiritual or afterlife topics in religious settings, such as in temples or churches. Therefore, we recommend that we could involve religious groups/organisations to do more public education on end-of-life issues and care options so as to overcome the cultural taboo.
Need for affordable, high quality and diverse options for healthcare and end-of-life care Provide a range of options for individuals so that they have autonomy to die under conditions and place of own choice	Exis	Gap	Solu
Need for access to understandable information & effective referral Main source of information is through the medical system, but not all hospitals — even those with a palliative care team — are able to help all families become better informed about the role of hospices.	Exis	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)	Relay understandable information to seniors through community touch points. Instead of campaigning online or conducting public education targeted at seniors directly, which usually turn out to be ineffective because of the language and media barriers, it might be more useful to equip various community touch points, such as SAC staff or befrienders, sufficient knowledge of end-of-life services & resources so they can relay the information to seniors who need such services/resources. Therefore, we recommend that we should move the communication upstream, and information could be provided to seniors even before they enter the medical system. Community touch points such as SACs can therefore do more to educate seniors about end-of-life care options in a culturally sensitive manner, and can even do some simple diagnostics before referring them to relevant services. Involve religious groups to do public education on end-of-life issues. It might be easier to openly talk about end-of-life issues when discussing spiritual or afterlife topics in religious settings, such as in temples or churches. Therefore, we recommend that we could involve religious groups/organisations to do more public education on end-of-life issues and care options so as to overcome the cultural taboo.
Need to manage pain and symptoms Not perfect, but palliative care is growing through efforts of many medical establishments and Ministry of Health	Exis	Gap	Solu

Infrastructure Needs

Need	Existing Resources	Gaps and their Causes	Possible Solutions
Need	Exis	Gap	Solu

Financial Considerations

Need	Existing Resources	Gaps and their Causes	Possible Solutions
Need	Exis	Gap	Solu

Family, Society, Polity

Need	Existing Resources	Gaps and their Causes	Possible Solutions
Need for psychosocial well-being, community integration and social usefulness Beyond medical care, need to provide dignity to individuals who are terminally ill through multidisciplinary approach	Community projects: Terminally ill seniors who need psychosocial support services will be referred by the hospice nurses to their in-house psychosocial care staff i.e. medical social workers or counsellors, for assessment, case management and counselling services. MOH started funding psychosocial visits (social worker’s visits) to patients’ homes in 2010 Co-location of childcare facility within a nursing home and hospice in St. Joseph’s Home Projects getting neighbours in estates to befriend and give emotional support to grieving relatives of those who have died) Pairing seniors to keep an eye out for other old folk in the area Hospice care have helped make the final days of the terminally ill patients fulfilling and meaningful, and have accumulated experience in caring for the patient and helping caregivers care for the patient Nurses’ Initiative for Community Engagement (NICE) started by a group of healthcare workers to reach out to vulnerable home-bound seniors in the community through one-to-one home visits SPARKS! Art Wellness Exhibition for nursing home residents to create their own art projects to improve their quality of life Various research available on the Buddhist, Confucian and Taoist perspectives towards death Contrary to traditional reliance upon gender to determine care roles, nearly 60% of caregivers and 40% of patients prioritized availability, willingness and capability of family members, as well as their financial and personal situations as key determining factors Buddhist practice impacting choice of pain control and sedation Familialism still important among the Chinese Traditional Chinese medicine may clash with conventional Western medicine, but Confucianism and filial piety were used to justify the caregiver’s choice of the former over the latter Various research available on the Catholic and Christian perspectives, towards death and dying Healthcare Christian Fellowship for healthcare workers, including palliative care workers to address issues of ethical dilemmas e.g. assisted suicide End-of-Life Forum for participants to find answers to end-of-life issues from the perspective of faith Christian’s perspective of death is that it is not the end of the person, as the person will live triumphantly and perfectly in the Lord; sanctity of life is fundamental so deliberate shortening of life is against doctor’s calling	Psychological concerns and fulfillment was the second and third most mentioned categories of responses, just after physical conditions, when asking about the things to be considered as the most important when dying. Inadequacy of funding for psychosocial support, the shortage of psychosocial care staff, as well as a dearth of local educational & training opportunities and support networks for these staff While Singapore did well in affordability and quality of care, it fared the weakest in community engagement Less emphasis on the spiritual needs and personhood of the patient Fear of backlash leads to unnecessary prolonging of life through aggressive medical treatment that leads to poorer quality of life Lack of research available on the Islamic and Hindu perspectives of death in Singapore	MOH expand funding for psychosocial support services Include other services that hospice service providers initiated to provide psychosocial support to patients and allow them to be meaningfully engaged in their last few days. Move towards community model/communal projects in ‘whole of society’ approach Start communal/volunteer programmes in palliative care such as tapping on community resources such as skilled/experienced former caregivers to be the volunteers or to be the trainer to other volunteers, so as to provide psychosocial support, or even instrumental support, to patients Overseas models for reference: Home Hospice (Sydney) uses a community development approach to deliver a community mentoring program for carers who want to care for terminally ill person at home. Mentors are volunteers who themselves have been carers or part of a caring network for a terminally ill person. Mentor is paired with carer, helping caregiver to find and access formal services where available. A multidisciplinary, interfaith, grassroots community group of professionals and laypersons created a replicable model to enhance palliative and end-of-life care. The Collaborative for Palliative Care leverages existing community assets and capacities within the health and social service programs of Westchester County, New York, resulting in a unique public-private partnership. It has played a critical role in changing the culture of care for residents of Westchester who are faced with the challenges of serious and terminal illness. Organise professional networks to support psychosocial care staff With the limited educational and training resources locally, we recommend that NCSS could set up a common platform for psychosocial care staff to share available resources as well as to share the best practice with each other, such as through professional networks or community of practice.
Need for life closure & last wishes	Exis	Gap	Solu
Need for caregivers to have support throughout caregiving and bereavement process Generally, individuals prefer to die at home, but it is unclear if vulnerable seniors who have no social support feel the same	Exis	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.	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 Awareness & acceptance of palliative care is low; likely due to cultural stigma	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.	Gap	Solu