Diagnosed with terminal lung cancer, 69-year-old Ng Soy Ah does not have long to live. He has since resigned to his fate; but he is not sitting in a room waiting to die. Instead, his weekly routine includes spending time in Singapore’s St Andrew’s Community Hospital garden – playing carrom with other patients, and listening to music to forget about the pain.

Ng is not alone. He joins others who are terminally ill who are at the hospice to relieve their symptoms of cancer, or other health conditions, and make their final days more fulfilling and meaningful.

As Asia ages and rates of terminal illnesses rise, there is an increasing demand for end-of-life care. And, we’re not talking about just basic end-of-life care; rather, a quality end-of-life care.

In Asia, this notion has progressed tremendously – especially in countries facing an ageing population, such as Singapore and Japan. For instance, in Singapore, the government sets aside a portion of the healthcare budget to spend on palliative care centres and hospices. (Singapore emerged second, and 12th globally, in the 2015 Quality of Death Index.)

Nonetheless, in many communities, the approach to end-of-life care remains passive – and decisions often come too late – to make choices about the kind of care wanted and where.

Mr Ng Soy Ah with volunteers (from left) Prisca Liang, 50, Yang Sik San (partly hidden), 48, and Deborah Kang, 46, as well as St Andrew's Community Hospital associate chaplain Justin Tan, 39, on 4 September. Photo credit: Kevin Lim/Straits Times
Mr Ng Soy Ah with volunteers (from left) Prisca Liang, 50, Yang Sik San (partly hidden), 48, and Deborah Kang, 46, as well as St Andrew's Community Hospital associate chaplain Justin Tan, 39, on 4 September. Photo credit: Kevin Lim/Straits Times

Abolishing the stigma of death and palliative care

“It is very hard for us as healthcare professionals to influence what happens right at the point of death,” remarked Dr Lam Chee Leong, senior lecturer and palliative care physician from University Malaya, at the 22nd bi-annual International Forum on Quality and Safety in Healthcare, held in Kuala Lumpur, in August 2017.

“Perhaps, what is more amenable to change or action is really the timeframe leading up to death,” he added.

Dr Lam also highlighted that the Asian communities – including healthcare professionals – are very ill-prepared for dying, as there is a social stigma that makes them “feel very uncomfortable.”

Dr Mervyn Koh, who heads Tan Tock Seng Hospital’s palliative medicine department agrees, saying that even though more patients are requesting palliative care consultations, the stigma surrounding it and death remains.

It is not uncommon for family members to ask doctors not to bring up the topic with patients, echoed Dr Chong Poh Heng, the medical director at HCA Hospice Care.

“We recognise that a lot of this stems from love and the need to protect, not harm or take away hope,” he said, “but this can break the trust built between us, when patients realise we are not honest with them.”

“Generally, as doctors, we have to heal disease and illnesses; but, we also have to heal people and restore the kind of personhood to them,” asserted Dr Lam.

Treating end-of-life patients like children

Some experts in the UK such as Professor Tony Walter from the University of Bath, suggested that treatment of people nearing the end of life be similar to the treatment of children.

Child protection policies in the UK are underpinned by a double assumption: that children have a right to be listened to, and a right to care and protection, which includes protection from the neglect at the hands of their carers.

As such, the double assumption should be made for people nearing the end of their lives, as right now, these adults are responsible citizens who are capable of making their own decisions, he says. This would then prevent society from abandoning these people, as well as deny them autonomy.

Treatment of people nearing the end of life is similar to the treatment of children, suggests Professor Tony Walter from the University of Bath.
Treatment of people nearing the end of life is similar to the treatment of children, suggests Professor Tony Walter from the University of Bath.

However, the many values and beliefs underpinning ethical principles such as truth-telling and patient or family autonomy differ between countries, with much of this to do with cultural and personal beliefs – both the clinician’s and patient’s.

For instance, in Japan, family members or physicians play a more critical role in making decisions for the patient, particularly when the patient lacks decision-making capacity. Patients also often portray submissive attitudes to medical professionals or the acceptance of their own circumstances as fate. Pain is also seldom expressed as the patience to go through the pain is valued in the Japanese culture and the elderly refuse to bother their physician.

Compared to the Western countries, the top three criteria of a good death, was firstly, patients wanted some semblance of choice and terms of preference of the dying process. Second, a pain-free status and thirdly, an emotional well-being, according to a paper published by a group of researchers from the University of San Diego.

Respecting the patient’s wishes

In the end, preferences differ between patients, said Dr Lam, reiterating that what is more important is “to address a patient’s needs as much as possible – with a good attitude – and provide an environment that is conducive for caring and healing.” He also urged all healthcare professionals to play a role in caring for patients.

“Realistically, it is difficult for palliative care to look after all the dying patients. Ultimately, I think all healthcare professionals should be responsible for end-of-life care to ensure good care and a good death,” he emphasised.

On a broader scale, he suggested that the whole of society needs a shift in mindset as everyone needs to be responsible and be part of it. MIMS

Read more:
End-of-life issues should be openly addressed
Patient care may come with an emotional cost
More “generalists” rather than specialists needed for Singapore, say medical school deans

Sources:
https://theconversation.com/why-people-nearing-the-end-of-life-need-the-same-protection-we-offer-children-81534
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3140082/
https://www.intechopen.com/books/contemporary-and-innovative-practice-in-palliative-care/palliative-care-for-the-elderly-a-japanese-perspective
https://www.ncbi.nlm.nih.gov/pubmed/26976293
http://www.straitstimes.com/singapore/health/dispelling-stigma-and-misconceptions
http://www.straitstimes.com/singapore/health/hospice-care-benefits-patients-and-their-families
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3249849/
https://www.hongkongfp.com/2017/09/09/business-life-business-death-singapore/