How do you want to spend your last days?

A recently launched hospice day care service has sparked conversations on the topic of how to meet death, not by waiting helplessly for it, but with support so an individual can live until the end.

At Oasis@Outram run by HCA Hospice Care at the Outram Community Hospital, patients under palliative day care can pass the time playing mahjong and board games in a new recreation room, or have a drink with a family member or friend at a bar that has a weekly happy hour.

They have the autonomy to choose how to spend their days, as compared to a traditional hospice day care setting where they follow a fixed programme.

It is perhaps as far as one can get from the "death houses" that used to line Sago Lane and other streets in Chinatown until they were banned in 1961. In those reeking places, the terminally ill would go to wait, enduring terror and the squalid conditions, until death released them.

Doctors, hospice care providers and others working with individuals at the end of life told The Straits Times the palliative care provided here is getting better, but can improve in areas such as tackling the taboo around discussing death and dying, bringing palliative care to the community, and tapping technology better.

 

A "death house" at Sago Lane for the terminally ill before such facilities were banned in 1961 (left) and HCA Hospice Care's day hospice. PHOTOS: ST FILE, HCA HOSPICE CARE 

Said Dr Chong Poh Heng, HCA's medical director: "There was a trade off when palliative care became professionalised, and led to the medicalisation of death and dying. We forget that we are dealing with a person. Now we are beginning to see more honouring of the person."

At a conference last December, Health Minister Ong Ye Kung said the Government would support palliative care by boosting support for caregivers, ramping up hospice and home palliative care capacity, and increasing capability among professionals in the sector.

The first dedicated hospice, with 16 beds, was started by a group of sisters at St Joseph's Home in 1985.

Since then, the scene has evolved from community initiatives to an established network of dedicated specialist palliative care teams, said Dr Patricia Neo, head of the Singapore Hospice Council (SHC) and of the division of supportive and palliative care at the National Cancer Centre Singapore.

Purpose-built hospices sprang up, such as Dover Park Hospice and Assisi Home and Hospice, and hospital palliative care services followed. Palliative medicine became a recognised speciality for medical students.

Dover Park Hospice was first opened in 1992. The koi pond is a peaceful retreat for many patients. PHOTO: DOVER PARK HOSPICE 

While palliative care used to focus on cancer patients, it now also helps those with end-stage lung disease, heart failure, renal failure and advanced dementia.

Yet challenges remain. The reluctance to discuss death and dying is one.

Another is how to enable more people to die in a place of their choosing.

A 2014 survey commissioned by philanthropic organisation Lien Foundation found about 77 per cent of respondents wanted to die at home, but only 25 per cent of deaths in 2020 took place at home.

Dr Neo said shrinking healthcare manpower and smaller families, combined with the ageing population and increasing chronic disease burden, add to an "urgent need to re-strategise and plan to meet future palliative care needs".

'No longer simply about giving patients morphine'

 

A key strategic thrust of the SHC in the coming years will be to see that all services claiming to offer palliative care are "faithful to standards and benchmarks", said Dr Chong, who is its vice-chairman.

An SHC survey released in 2020 found that a significant proportion of healthcare professionals who received palliative care training in school felt it was not enough to prepare them to support patients with life-threatening illnesses.

Dr Mervyn Koh, medical director at Dover Park Hospice, said there needs to be closer collaboration between oncologists, organ specialists and palliative care teams, as the lines between curative and palliative care will blur in future.

The hospice of the future will care for patients with more complex needs, and no longer be simply about just giving patients morphine, he said.

 

A HCA Hospice Care staff checks in on a patient under its Star Pals programme which helps children or minors with life-threatening or life-limiting conditions. PHOTO: HCA HOSPICE CARE 

In fact, some say palliative care should be part of any clinical care. Said Dr Raymond Ng, head of palliative and supportive care at Woodlands Health: "If you are a cardiologist looking after someone with heart failure, you can have a conversation that asks basic but nevertheless important questions."

These could centre around a patient's anxiety about his future quality of life, and how he can make the most of the treatment he has been prescribed.

Mr Lee Poh Wah, chairman of the Lien Foundation, which has focused its efforts on the elderly, including end-of-life care, said Singapore's current model of palliative care - provided mainly by specialists - has constraints.

"Staff shortage is a real challenge and family doctors are not sufficiently involved," he said. "All healthcare professionals (should) have knowledge of how to provide basic palliative care regardless of diagnoses or settings, and specialists can then support more complicated cases."

This is the case for countries like the United Kingdom and Australia, where family doctors support nursing homes or patients at home with palliative care, said Dr Ng.

Getting the community involved

 

Boosting resources and capacity in home palliative care - the most common form of palliative care provided here - can also help more patients to achieve their wish of dying at home where possible, said experts.

Some patients enjoying a game of mahjong at Oasis@Outram, a day hospice in Outram Community Hospital, on Nov 25, 2021. PHOTO: ST FILE 

Dr Jeremy Lim, an associate professor at the Saw Swee Hock School of Public Health under the National University of Singapore, noted that it is more cost effective to care for patients in their own homes, as there is no need for round-the-clock monitoring or costly dedicated infrastructure.

Day hospices can build in flexibility to complement home palliative care, he added.

"There is no reason why we cannot be more imaginative, have shorter or expanded hours, so our arrangements can accommodate different clinical needs."

As birth rates fall, the number of caregivers will continue to shrink.

"We expect more people to be institutionalised in nursing homes, simply because there aren't enough caregivers to be caring for them at home," said Dr Ng.

Ms Chee Wai Yee, a senior director at Montfort Care that runs Grief Matters, said family caregivers without experience in caring for the dying feel less lost when they receive the right level of support from palliative care providers. She said:

"The burden of making decisions for a loved one without knowing if it is preferred or suitable might result in guilt, regret, and self-blame in the bereaved."

Grief Matters supports caregivers through services such as advance care planning, grief counselling and training and education on grief literacy.

More organisations can become "friends of the dying and bereaved", including employers, schools and professions that have contact with the bereaved such as banks, insurance providers and funeral companies.

New ideas for the future

 

The new services at HCA Hospice Care came from out-of-the-box thinking on how the whole person can be cared for as they approach the end of life.

In the future, rethinking spatial design and adopting technology may also improve the palliative care experience, said experts.

Dover Park Hospice chief executive officer Timothy Liu said it is working on using telehealth to help inform decisions.

"This could be helpful for triaging, getting a better feel of what the patients are challenged with before we go in for a home visit," he said.

Dr Jeremy Lim, who is also chairman at Dover Park, noted that palliative care is traditionally seen as "high touch" but "we have to strike the right balance - if we are high touch but only impact a small number of lives, we have to ask ourselves what is the right model".

He added that there can also be smoother transitions between the different settings - hospital, hospice, home - to ensure the best end-of-life care for patients.

"As a nation that cares for every Singaporean, surely for its citizens in their last days, we want to do the best we can."