Caregivers, family and friends can work together with their loved ones’ care team to ensure the best possible palliative care.

The study “Cross Country Comparison of Expert Assessments of the Quality of Death and Dying 2021” published in the Journal of Pain and Symptom Management in December led by Professor of Health Services and Systems Research at the Duke-NUS Medical School, Singapore and the Executive Director of the Lien Centre for Palliative Care, Dr Eric Andrew Finkelstein, ranked 81 countries on end-of-life (EOL) care based on the assessments of a total of 181 experts. Prof Finkelstein, who also holds appointments at NUS School of Public Health and Duke University Global Health Institute, carried out this survey with six other colleagues from Singapore, India, the US and the UK based on 13 EOL key indicators over five categories: quality of care, palliative and healthcare environments, affordability of care, human resources and community engagement.

In the article “Where is the Best Place to Die?” by Alicia Banks published on the Duke Global Health Institute website upon the release of the study, Prof Finkelstein said, “Society should also be judged by how well people die.”

Perhaps it should come as no surprise that the UK ranked first; after all, it is acknowledged to be the birthplace of palliative care, born out of the hospice movement founded by Dame Cecily Saunders when she opened St Christopher’s Hospice in London in 1967.

Singapore was in 23rd place, behind Sri Lanka and Mongolia, but ahead of Japan and Belgium. The country experts surveyed have identified the contributing factors — both positive and negative — that impact these results.

One of the positive factors cited by these experts is the existence of a national strategy for palliative care or making palliative care a priority at the national level. While the National Strategy for Palliative Care was first dra ed in 2011, Singapore’s Minister for Health Ong Ye Kung had announced the need to ramp it up on 9 December 2021 — increase awareness, boost training for palliative and healthcare professionals, broaden palliative care capacity in healthcare institutions, provide more support for caregivers and expand home palliative care, to name a few key objectives.

The palliative care movement in Singapore took off in 1985 with just 16 inpatient beds allocated for palliative care patients at St Joseph’s Home. Drawing on the wealth of knowledge amassed by experts across the world who have paved the way with an established system of comprehensive best practices, new hospices, dedicated palliative care departments in community hospitals, as well as palliative healthcare specialists have emerged over the past few decades. Notably, St Joseph’s Home served as the starting point for the late Professor Cynthia Goh, a leading figure on Singapore’s palliative care scene, who began her journey as a volunteer doctor while collaborating closely with St Christopher’s Hospice.

Prof Goh established the Singapore Hospice Council (SHC) in 1995 with four founding members — Catholic Welfare Services, Singapore Cancer Society, Hospice Care Association (currently HCA Hospice) and Dover Park Hospice — with the belief that an umbrella organisation managing common needs would allow each organisation to focus on providing the best care to their patients. Today, SHC has grown to 25 members and has made strides in improving the quality of palliative care in Singapore.

With support from the Ministry of Health, the palliative care sector in Singapore will be empowered to build best practices aligned to local sociocultural needs and prepare for the projected increase in demand for palliative care services in line with an ageing population.

What the best care looks like, however, depends on the recipient of that care.

“The ‘best’ possible care for anyone is the ‘best’ they want for themselves at the end of their life journey. Generally, most people will want to pass on peacefully — to be comfortable and pain-free both physically and mentally,” said Dr Dennis Chia, Acting Cluster Director, Community Eldercare Services and Deputy Director, MWS Home Care & Home Hospice and Senior Care Centre. “The principles of palliative care remind us to look at the bio- psycho-social and spiritual needs of the patient and support the family through the journey.”

COMMUNICATION IS KEY

In Prof Finkelstein’s study, “personalised, patient-centred and integrated care delivery” was cited by experts as a positive factor for high-quality care. How palliative care providers — be they hospice or hospital — accomplish this is through communication and engagement, not only with the patient but also caregivers, family and friends.

Advance Care Planning (ACP) or Advance Medical Directive (AMD) are recommended documented “wishes” in the event that the patients are unable to speak  for themselves,  whether due to physical or mental reasons, will guide their loved ones and caregivers in making decisions.

“Patient advocacy in palliative care starts with an early conversation with everyone, whether it is formally done up like ACP, or informally done as a conversation where loved ones can understand more about one’s care preferences. Although it may be taboo in some cultures or families, especially in Asian countries, it is best to hold such conversations early when we are all well. This allows us to articulate to our loved ones how we wish our end-of-life journey to look like,” said Dr Chia.

To illustrate this, Dr Chia shared this story about his friend’s late father, who had  suddenly  collapsed at home from a brain bleed. While he was admitted to the intensive care unit (ICU), the family had to decide

between withdrawing life support and aggressive treatment. “It was fortunate that my friend had conversations with his parents two years prior about the quality of life they want and care preferences. They were clear about what his father would want, and made the difficult and painful decision to withdraw life support and let him pass on peacefully.”

ON MULTIDISCIPLINARY WINGS

Nowadays, the increasingly patient- centric approach to palliative care requires a multidisciplinary care team, with each team member providing individualised attention to the patient who benefits from

an improved quality of care that contributes to better outcomes. In addition to doctors and nurses, the team includes religious and spiritual support, counsellors, therapists and a medical social worker. Caregivers, family and friends are roped in as part of the care team for a more holistic approach.

“At EOL, having the multidisciplinary team, caregivers, family and even friends of the patient making up the different pieces of the puzzle to care for the patient from the bio- psycho-social and spiritual angles is important, especially when the patient is no longer cognitively able to make decisions,” said Dr Chia. “We must also remember that on this journey, the multidisciplinary team also supports the caregivers, family and friends who are co-participating in the care, ensuring that they also receive the necessary caregiver training, support, and counselling when needed.”

BREAK NEW GROUND

The palliative care community is constantly launching new initiatives and collaborations to elevate the level of care provided, as well as finding new ways to meet patients’ preferences  regarding  their last days and where they would like to pass away.

Through listening to patients and caregivers, a multitude of new initiatives have come about that allow many to arrive at the end of their life’s journey as they wish, whether at home or in a palliative care facility, but still in comfort, free from pain, and with peace of mind. It may seem contradictory to think of palliative care patients maximising quality of life but with holistic support from a multidisciplinary care team, as well as well-equipped caregivers, it is not only possible but expected.

Member of Parliament for Ang Mo Kio GRC, Ms Ng Ling Ling, lauded Ng Teng Fong General Hospital’s IAmGoingHome programme in Parliament in May 2023 and enquired if it would be possible to roll this out across Singapore, in both public and private hospitals, and hospices. Launched in October 2022, the programme is a pilot effort by the ICU and Division of Supportive Care and Palliative Medicine at the hospital to safely discharge critically ill patients who wish to pass away at home.
When speaking about the Singapore government’s push to enhance EOL care, Senior Parliamentary Secretary for Health, Rahayu Rahzam, shared that the government is working with hospitals and palliative care providers to work on expanding such a “compassionate discharge”.

Hospices and hospitals o en collaborate to provide integrated care to patients. The first was Dover Park Hospice (DPH) introducing home hospice care to Tan Tock Seng Hospital (TTSH) in 2012, which continued with Programme DIGNITY, a collaboration where DPH provides palliative home care for patients with dementia. Since then, such collaborations have flourished, usually between palliative care providers and hospitals in close proximity.

LEAVING ON A CLOUD

Many care teams work on not just the ailing physical body, but also their patients’ mental and spiritual health. This might involve helping their patients realise last wishes, providing closure for any regrets they might have, or creating a beautiful lasting memory for those le behind.

Dr Chia shared a poignant story of an MWS patient in his 50s who had wished for a last date with his wife on the same beach where he proposed to her 24 years ago. “MWS worked with Ambulance Wish to arrange for this final date with his wife days before he passed away.
His wish was fulfilled, and he passed away peacefully. What remained was a beautiful memory deeply etched in the minds of his wife and two children,” he said. “You’ll be surprised how the fulfilment of such wishes can sometimes help patients with their symptoms, much more than what medication can do!”

Keeping morale and spirits high while undergoing palliative care does a lot of good for patients. The best palliative care needs a multidisciplinary team with a broad spectrum of expertise to ensure that patients live the best quality of life possible and achieve a good death.

GETTING THE BEST CARE POSSIBLE

Photo: FREEPIK