Singapore, it’s time to talk about our suffering

Awareness of palliative care has grown, but  public understanding continues to lag behind. A stigma surrounding palliative care persists as many Singaporeans equate palliative care with end-of life-care, associating it primarily with death and dying. These are among key findings from the Pulse on Palliative Care, the first of its kind to test public knowledge on the topic, commissioned by the Lien Foundation. It comes a decade after its landmark 2014 Death Attitudes Survey.

The prevention and relief of suffering due to symptoms and stresses of a serious illness is a fundamental aspect of palliative care, which is intrinsic to all forms of medical care. Over the years, palliative care has embraced a more proactive approach. The World Health Organisation has also recommended early identification of symptoms and integrating palliative care early in the course of a patient’s treatment, regardless of prognosis. Despite its potential to enhance patient wellbeing at any stage of a serious condition, palliative care remains widely misunderstood.

The Lien Foundation commissioned Kantar, a leading data and analytics company, to examine the awareness and perceptions of over 1,000 Singaporeans towards palliative care. Unlike earlier surveys measuring awareness, this is the first time the general public’s actual understanding of palliative care is being tested. The same survey was also conducted in 11 other markets in the Asia Pacific region.

Awareness about palliative care is high, but misconceptions persist

Based on participants surveyed, 70% of Singaporeans have heard about palliative care – only 31% claim to know what it is about, with another 39% saying they know little about it. The most common source of information was through personal connections, followed by the mass media, and medical professionals.

These respondents who have heard about palliative care were then asked to complete a 15-question quiz to assess their actual knowledge level. The results showed that 48% scored in the ‘high knowledge’ category, correctly answering 11 to 15 questions, while 41% demonstrated ‘average knowledge’, with scores ranging from 6 to 10.

Yet, there remains a stigma around the term “palliative care”. The survey revealed the top three misconceptions among Singaporeans:

1. Palliative care is exclusively for people in the last six months of their lives;
2. that it is only for the dying; and
3. that choosing palliative care means giving up on curative treatment.

While over 80% correctly identified that palliative care aims to maximise quality of life, and to help the whole family cope with serious illness, less than half had a full understanding of its scope. Only 38% were aware that palliative care is not restricted to the last 6 months of life, and just 44% knew that it is not exclusively for the dying. Additionally, 52% were aware that choosing palliative care does not mean giving up on any other medical treatment.

A high percentage of respondents believe palliative care can help with emotional and psychological support (73%) and supporting family and caregiver needs (70%).

Singaporeans will seek palliative care mostly at the late stage of a serious illness

Over 90% of all Singapore respondents surveyed are somewhat likely and highly likely to accept palliative care for their loved ones or themselves, but only at the late stage of a serious illness. Their main reasons are to manage pain and distressing symptoms, and to be supported emotionally and spiritually.

When diagnosed with serious illness at the early stage, only about 70% are somewhat likely and highly likely to accept palliative care for themselves or loved ones. Those unlikely to accept palliative care cited a preference to focus on curing the illness, perceived high costs and the perceived lack of need for palliative care.

“People often associate palliative care with care for the dying, overlooking its broader scope to relieve symptoms and enhance quality of life throughout an illness trajectory. Patients and caregivers may hesitate to seek palliative care because of stigma and the mistaken fear it is akin to giving up on treatment and hope,” said Mr. Lee Poh Wah, Chief Executive Officer of the Lien Foundation. “Despite its profound importance, palliative care is often underutilised and not well integrated with other medical specialties, except for oncology. More value can be unlocked if we apply palliative care early, alongside life prolonging or curative treatment, as an extra layer of support for patients to prevent unnecessary suffering.”

In Singapore, palliative care is often experienced very late in an illness journey. The overall median time duration of palliative care from referral to death is short, at 22 days. Non-cancer patients tend to access this support much later than cancer patients, with just 9 days of care, compared to 33 days for those with cancer¹.

It is estimated that 60% of specialist palliative care patients are cancer patients², despite cancer making up 26% of deaths. While more non-cancer patients are finally getting palliative care, they’re still referred much later than cancer patients.

While bringing palliative care upstream is the aim, there still remains an inertia towards embracing palliative care early. The above mentioned misconception about giving up on treatment is one of the big reasons why respondents in Singapore are not likely to seek palliative care when faced with serious illness at an early stage, when experiencing pain or distress, or as part of their ageing care. Other commonly cited reasons include a perceived lack of necessity and concerns about costs.

Assoc Prof Alethea Yee, Director of Education at the Lien Centre for Palliative Care and Senior Consultant in the Division of Supportive and Palliative Care, National Cancer Centre Singapore, said: “Suffering is multidimensional and inevitable in the context of serious illness. If we limit our understanding of palliative care to just end-of-life care, focusing only on the last few days or weeks, we risk missing critical opportunities to address the suffering that occurs earlier. It is essential that all healthcare professionals are trained in the basics of palliative care, so as to recognise distress and suffering and know how to respond in a fundamental and effective manner.”

Generally positive experiences with palliative care

A significant portion of Singaporeans have had positive experiences with palliative care. Among respondents, 31% know someone who has experienced palliative care. Of those who know someone who has received palliative care, 71% rated the service as good or extremely good. Additionally, 64% of all respondents in Singapore find palliative care moderately to highly accessible in Singapore.

A growing focus on early palliative care has started

In the past year, we have seen the introduction of programmes like Air Master, which solidifies a renewed focus on pulling palliative care upstream. The Lien Foundation’s partnership with Tan Tock Seng Hospital (TTSH) to launch the Air Master service in November 2023 marks a significant step towards integrating palliative care earlier in the disease trajectory. It has been helping people with chronic heart and lung conditions manage their breathlessness, anxiety and other debilitating symptoms, enabling them to remain independent, slow functional decline, and avoid unnecessary hospitalisation. It is part of Singapore’s first Breathlessness Ecosystem, where TTSH clinicians train and mentor community partners including AWWA, Ren Ci Hospital and St Luke’s ElderCare, to build new palliative rehabilitation capabilities. To date, the service has more than 70 patients.

(Left to right) Dr Neo Han Yee, Dr Ng Wai Chong, Mr Lee Poh Wah, A/Prof Alethea Yee and Dr Shirlynn Ho

Dr Neo Han Yee, Head and Senior Consultant, Palliative Medicine, Tan Tock Seng Hospital, said: “Palliative care needs a reshaping of its image. There has been a global movement to upstream palliative care, extending to patients who may have years before their final demise. This longer runway allows us to maximise the value of a multidisciplinary team, helping patients lead engaged and meaningful lives for as long as possible.”

Palliative care as a specialised medical field is growing. The number of palliative medicine physicians³ has almost doubled from 47 in 2014⁴ to 88 in 2024⁵. The National Strategy for Palliative Care was launched in July 2023 to expand palliative care services and make it more affordable through subsidies for all inpatient palliative care, home palliative care, and day hospice care, regardless of household income.

While palliative medicine specialists play a vital role, there is a growing recognition that providing palliative care should not fall solely on them, but a collective responsibility across the healthcare continuum. Said Dr Neo: “Relying solely on palliative care specialists risks reaching only a minority of patients. We need a ‘whole kampung’ approach, initiating palliative care from the diagnosis of an advanced illness to ensure holistic care begins early.”

Lien Foundation is currently working with medical organisations, such as the National
Neuroscience Institute, National Heart Centre and KKH, to integrate palliative care into their
medical specialties and services. This includes building palliative care capabilities among their healthcare professionals and the screening of care needs for patients and caregivers, such that it becomes part of standard care.

When seriously ill, financial concerns and alleviating suffering are top of mind

The financial aspect is still exceedingly important. When faced with a serious illness, the top three priorities were managing financial burdens, followed by managing pain and other symptoms of discomfort and being surrounded by loved ones.

Home remains preferred place to die; being a burden the top fear when facing death

The Pulse on Palliative Care Survey also delved into the preferences for end-of-life care, building on the focus of the 2014 Death Attitudes Survey.

For two-thirds of the population, home remains the preferred place for both end-of-life care and death. 65% want to be cared for at home if they were dying, and similarly, 64% agreed that when the time comes, the preferred place of death would be at home. According to 2023 statistics on death in Singapore, 23.4% of all deaths occured at home⁶. In the 2014 survey, 70% wanted to be care for at home if they were dying, and 77% wished to die at home⁷.

The top three fears when faced with death are being a burden to family and friends, medical costs and suffering leading up to death. This is similar to the Foundation’s 2014 Death Attitudes Survey which cited medical costs and being a burden to family and friends as top concerns, followed by well-being of family after death.

¹ https://www.singaporehospice.org.sg/e-library/docs/infographics-key-findings-of-minimum-data-set-2022/
² https://www.singaporehospice.org.sg/e-library/docs/infographics-key-findings-of-minimum-data-set-2022/
³ https://www.healthprofessionals.gov.sg/sab/specialist-accreditation
⁴ Singapore Medical Council Annual Report 2014. Figures include 19 Palliative Medicine specialists and a further 28 who are registered in that specialty as a 2nd/3rd specialty or sub specialty.
⁵ From Singapore Medical Council’s website in Sep 2024: https://prs.moh.gov.sg/prs/internet/profSearch/main.action?hpe=SMC
⁶ Report on Registration of Births and Deaths, 2023. Immigration and Checkpoints Authority Singapore https://www.ica.gov.sg/docs/default-source/ica/stats/annual-bd-statistics/stats_2023_annual_rbd_report.pdf
⁷ Pool of respondents in the 2014 and 2024 surveys are different, although both sample sizes do share similar demographic splits.

Images: Lien Foundation and Envato