Death is not the prerogative of the old, and neither is the need for palliative care. It happens to the youngest and the best of us.
Singapore’s population is ageing rapidly — one in four will be 65 years and older by 2030. In data published in June 2021 by the Singapore Department of Statistics: Singaporeans enjoy the third longest life expectancy in the world at an average of 83.9 years, yet the years spent in ill health has increased to 10.6 years. With ageing comes increased prevalence of serious illnesses such as cancer, ischemic heart diseases and stroke, which are the top causes of death in Singapore.
AVERAGE LIFE EXPECTANCY IN SINGAPORE (BOTH GENDERS)
ONE IN FOUR
WILL BE 65 YEARS AND OLDER BY 2030
RANKING OF SINGAPORE’S LIFE EXPECTANCY IN THE WORLD
SPENT IN ILL-HEALTH
SINGAPORE’S LIFE EXPECTANCY IS EXPECTED TO REACH 85.4 IN 2040
At the virtual 7th Singapore Palliative Care Conference on 8 December 2021 organised by the Singapore Hospice Council (SHC), Guest-of-Honour Minister for Health Ong Ye Kung spoke about the rising importance of palliative care for a rapidly ageing Singapore population. That the desire of the caregivers to ensure all avenues of recovery for the patient diagnosed with a terminal or life-limiting illness have been explored, which may culminate in the end of life in a hospital or hospice, and the desire of the patient to spend the remaining time and dying in the comfort of home will have to converge. While ramping up the training of palliative care professionals and palliative care capacity in the healthcare institutions are part of the Ministry of Health Singapore’s National Strategy for Palliative Care, supporting caregivers and expanding home palliative care are also part of the plan.
There is a standard of palliative care set out by the World Health Organization, that states: “Palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well.”
Every palliative patient has their own needs and concerns, hopes and dreams, love and hate — yes, even the youngest ones — and should not be treated as just a case number to be looked in upon as part of the ceaseless round of duty.
PALLIATIVE CARE FOR THE AGED
Many people do associate palliative care more with the elderly who are suffering from life-limiting or terminal illness, and frequently, mistakenly, think it is synonymous with hospice care. The misperception is that one has given up hope when a patient is receiving palliative care, which is not the case. Patients with the afore-mentioned illnesses are eligible for palliative care, as are those with dementia, kidney disease and liver disease, to name a few.
Palliative care is not about letting the patient languish however. As HCA Hospice Limited (HCA) Medical Director Dr Chong Poh Heng, who is Vice-Chair of SHC, put it in Season 3 Episode 7 of the Institute of Policy Studies (IPS) On Diversity Podcast titled “Palliative Care for the Young and Old”, it is about bringing back “the fervour to live” after one’s life has been turned upside down when diagnosed with a serious illness.
Although, where palliative care for the aged is concerned, family members and caregivers, as well as the patients themselves, expect a deterioration of their condition, according to St. Andrew’s Community Hospital Senior Resident Physician Dr Karen Liaw, who also said that it is a common concern that less than optimal care is rendered.
This is, and definitely should not be the case, said Dr Liaw, although she pointed out that many caregivers of elderly palliative care patients feel that they have to advocate for their loved ones. She gave a case in point, “We are currently caring for a 97-year- old patient who has advanced dementia. Her main caregiver is her son who is in his late 60s. While he acknowledges that she is elderly and will eventually deteriorate, he reiterated multiple times in the first phone call and during the care team’s first home visit that he will not agree to anything that would deprive his mother of treatment. We realised he had an unhappy experience during his mother’s previous hospitalisation, where he had the misperception that the medical team did not want to resuscitate his mother in the event of deterioration because she is old.
“The care team will address the family’s concerns by engaging them in discussions regarding the patient’s values and what matters most to them,” said Dr Liaw.
PALLIATIVE CARE FOR ADULTS
While palliative care for the elderly is particularly challenging because the patient could be having a life-limiting illness in addition to concurrent chronic disease that needed to be addressed at the same time, palliative care for teens and adults presents a more complex need for psychosocial and spiritual support.
Adults in their prime, and especially those who are the main breadwinners of the family, are more likely than not wont to rail against their “fate” or ask the existential question: “why me?” If they are married with young children, the palliative care situation compounds, as their caregiver would be stretched physically, financially, emotionally as well as mentally.
Recognised as a Leader of Good at the President’s Volunteerism & Philanthropy Awards 2021, Dr Chong, a general practitioner turned palliative care professional, is advocating for more caregiver leave as well as a change from “the medicalisation of death and dying”. It goes beyond morphine, he said in his podcast, to even non- medical interventions.
Many adult palliative care teams thus swing into legacy-building, morale- boosting and connection-making activities in a bid to fulfil any last wishes of the adult patients so that they do not have any regrets or leave any unfinished business, and are able to leave with peace of mind.
PAEDIATRIC PALLIATIVE CARE
Dr Chong, who founded StarPals, a palliative service for children and minors up to 19 years old, under HCA, published “A good death in the child with life shortening illness: A qualitative multiple- case study” with Catherine Walshe and Sean Hughes in Palliative Medicine December 2021. While current literature comparing dying at home or in palliative care has mixed views of individual impact, the study states, it is certain that the perceptions of a good death in adults with life-limiting illness may not apply to children. The study concluded that “the priorities of the child should become central”, caregivers learning to let go would result in “minimised overall suffering” and a supportive familial environment brings the most comfort.
On the IPS podcast, Dr Chong said that palliative care for young people who are still studying extend beyond the immediate family. He recounted times when he had to visit the school in advance of a returning student undergoing care in order to prepare the classmates and teachers on what to expect and also to inform them of the eventual final farewell that would take place.
Indeed, paediatric palliative care has improved by leaps and bounds since KK Women’s & Children’s Hospital Head of Service Associate Professor Chan Mei- Yoke published the “Paediatric Palliative Care in Singapore” chapter in the book Pediatric Palliative Care: Global Perspectives (SpringerLink, 2021) 10 years ago.
“There has been vast improvement but it can be improved further! Some physicians and families still feel that being referred to palliative care means that we are giving up on the child or that it is a failure on the part of the physicians,” said A/Prof Chan. “I see these situations very often when I was training in paediatric oncology. Paediatric palliative care is not just for end-of-life, it should be integrated into the continuum of care of children the moment they are diagnosed with life-threatening or life- limiting disease.”
Paediatric palliative care has always been difficult to broach, A/Prof Chan pointed out, because parents don’t want to face the possibility that treatment has failed and death is the only possible outcome, resulting in late referrals by physicians. “Active treatment aiming at cure (however slim) can carry on in parallel with comfort supportive palliative care,” she said.
Managing the family’s expectations is crucial as the progression of disease in children is not as predictable as for adults. Furthermore, the whole family has to be involved. “Palliative care also has to take the whole family unit into account and provide support not just for the child-patient but also the parents, siblings, grandparents and, in the Singapore context, the foreign caregivers too, who are often forgotten!” said A/Prof Chan.
Palliative care is a universal and human right. We all deserve a good death that gives us the dignity to leave well on our own terms.
STARTING THE CONVERSATION
As Minister Ong pointed out, “We need to discuss the sensitive issue of deaths more openly and more honestly. This is probably the most important thing we need to do. It has to happen within families, between patients and doctors, and amongst members of our society and healthcare fraternity.”
SHC runs outreach programmes in the form of PC101 training, roadshows, library exhibitions and has both online and hard-copy resources such as the Hospice Link, to name a few. Its member organisations also run independent outreach programmes on Advance Care Planning.
Lyn Che, a pastoral care staff from St Joseph’s Home, shared, “We raise awareness through inviting the children from the Infant ad Childcare Centre and our volunteers to get to know our residents. Through conversations with residents or when residents they know pass away, the children and youths become exposed to the topic of death ad dying, and are open to learning about it.”
In particular, A/Prof Chan pointed out that there are ongoing efforts to raise the profile and need for paediatric palliative care to administrators in hospitals, the Ministry of Health and the government, “The concentration is more on the elderly than the children at the moment.”
TAILORED PALLIATIVE CARE
As it says on the SHC website: “Palliative care can be provided at home, in nursing homes, hospices, specialist clinics, general and community hospitals, catering to every patient’s needs.”
It is essential that we build a palliative care structure, both institutional and community, that caters to all as individuals, regardless of age. It is not just about the pain relief, the management of symptoms, the repair of wounds and the comfort of the physical self. Every palliative patient has their own needs and concerns, hopes and dreams, love and hate — yes, even the youngest ones — and should not be treated as just a case number to be looked in upon as part of the ceaseless round of duty. Everyone can find a situation that suits them financially, emotionally, comfortably.
This is why palliative care cannot be cookie-cutter. Palliative care is a universal and human right. We all deserve a good death that gives us the dignity to leave well on our own terms.