Palliative care: Not an act of despair, but a loving way to ease the last journey
By Chua Mui Hoong
2022-02-11
https://www.straitstimes.com/opinion/palliative-care-not-an-act-of-despair-but-a-loving-way-to-ease-the-last-journey
Reading the recent slew of reports on end-of-life issues in The Straits Times this week, I had a strong sense of deja vu.
My family had gone through the experience of caring for my mother in her last months, and I recall how palliative care helped ease her pain and our anxiety as caregivers.
This was 11 years ago.
Judging from the reports on the issue, many things have improved but some things have not changed.
For one thing, dying and end-of-life issues remain taboo among many Singaporeans. A Singapore Management University (SMU) study last year, of nearly 5,200 Singaporeans of different ages, found that half are open to discussing end-of-life plans with loved ones.
The study on attitudes towards life stages found that while 53 per cent of respondents would plan for the end-of-life stage, 97 per cent and 93 per cent respectively would plan for marriage, and births. The researcher who led the survey covering such end-of-life issues said she faced rejections from many quarters, "many bordering on hostility".
Still, the results suggest the glass is half full - about half are open to discussing such issues. This creates an opportunity to increase the profile, and raise awareness, of palliative care.
But raising the subject can be difficult. Patients may dislike hearing about it, thinking it assumes the end of hope of getting better. Doctors may see a referral to palliative care as a failure of their treatment. Family members may shun it as a sign of their lack of filial piety, or lack of faith in the patient's recovery.
Some family members outright reject palliative care options. Of the nearly 300 referrals that HCA Hospice Care receives each month from hospitals, clinics and others, some reject hospice services. "They will say 'Who asked you to call me? My father doesn't know he has cancer, don't come and visit us'," HCA's medical director Chong Poh Heng was quoted as saying in The Straits Times' report.
But in fact, palliative care is not a despairing last-resort option for the dying. It is a holistic approach to caring for a patient with advanced progressive illness that looks at the patient's needs as a person, from pain management and medical treatment to social and psychological needs.
The key is that palliative care seeks to ease the last journey as much as possible.
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My mother's story
To illustrate the above, please bear with me as I tell my mother's story.
My mother was diagnosed with recurrent colorectal cancer in 2009 when she was already 80. This was 10 years after her first brush with cancer when she had recovered with surgery and chemotherapy.
The recurrent cancer had spread but was deemed slow-growing, so operating was not an option. The colorectal surgeon she was referred to discharged her.
Given her age, chemotherapy was ruled out. She was discharged from the oncologist.
She had a minor operation on the liver and gall bladder, but once that was done and she recovered, she also left the care of that doctor.
In the months after, however, she suffered frequent pain and went from doctor to doctor, including to a Chinese sinseh.
I remember feeling helpless, as my siblings and I took turns to take her to see one doctor after another. Some said the discomfort was normal for someone her age with her medical history. She was given medication to ingest, rub, paste, or insert - for piles, constipation, indigestion, pain. Some worked for a while and then she would complain of pain again.
I think my mother would have lived out her last months in increasing pain, if we had not been introduced to palliative care.
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One day, I mentioned my mother's symptoms to a friend who is a doctor. She said I should not accept my mother's pain as "normal", as pain can and should be managed, and suggested we take her to see a palliative care doctor.
Back then, I had thought palliative care was what happened in the last days before dying when the doctor controlled pain medication.
But my friend described palliative care as a holistic branch of medicine which aims to care for a patient in the end stage of life as a total person, not just a collection of symptoms.
At the first appointment in Tan Tock Seng Hospital, the palliative care doctor spent two hours talking to my mother, in Teochew and Hokkien, about her symptoms, her living arrangements, her social habits and her preferences. Some medication was altered. She was prescribed a patch on the skin that would work wonders to relieve pain, to such an extent that my mother could resume her outings to the neighbourhood void deck to play card games. A home nursing team supported her care at home.
I remember the profound sense of relief I felt after that consultation - the knowledge that there was a medical professional to turn to when my mother got frailer and the pain increased; and the sense that we now had an ally in the healthcare system and would no longer be shunted from one specialist to another, told that pain is normal in end-stage cancer. (It is, but palliative care can alleviate its severity.)
Instead of doctors interested only in the symptom or specific body part that corresponded to their speciality, the palliative care team maintained the whole picture of my mother's ailments and helped control and manage the pain and other symptoms.
This was what my doctor friend meant, I realised - treating a patient in a holistic manner and not just as a collection of symptoms.
ST ILLUSTRATION: MIEL
Because we had known for months she was dying, the family was able to talk to her about her wishes. When she got frailer, she was hospitalised, and then discharged to a hospice where she died peacefully in March 2011, aged 82, surrounded by her children and grandchildren.
Palliative care has its roots in the United Kingdom where a British nurse, social worker and physician, Dame Cicely Saunders, revolutionised the care of the dying by introducing the concept of relieving "total pain" that went beyond the physical. Advanced cancer patients, she found, had unmet physical, social, psychological and spiritual needs ignored by healthcare professionals. She sought to provide this support and set up St Christopher's Hospice in London in 1967.
The palliative care movement has since advanced beyond cancer care into mainstream medicine.
From hospices, palliative care is now also offered at home and in the community, via day hospice centres. While palliative care is a recognised speciality, many primary care doctors and other healthcare workers in advanced medical systems now get basic training in palliative care.
In Singapore, palliative care has advanced along similar lines.
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A decade of improvements
Reading the reports about end-of- life care this week, I was cheered that many things have improved, but sad that some have not.
What has improved is the scale of palliative care.
The Ministry of Health has worked hard to raise palliative care standards. In 2012, it developed a national strategy for palliative care that covered areas including standards, training, and community engagement.
Awareness has grown about palliative care: An SMU survey in 2019 found that over 53 per cent of Singaporeans were comfortable talking about their death and end-of-life issues, up from 36 per cent five years ago; 82 per cent said it was important that palliative care be made readily available in Singapore, up from 71 per cent five years before.
As at December 2021, there were 160 day hospice places, up 60 per cent since 2017, and 250 inpatient hospice places. Home palliative care capacity has also been expanding: in 2020, there were about 3,100 home palliative care places at any one time.
In fact, national attention is being trained on this issue in recent months. Last December, Health Minister Ong Ye Kung said at a palliative care conference that the Government will boost efforts to support caregivers, ramp up hospice and home palliative care capacity, and increase capability among professionals providing such care.
He also stressed the need for Singaporeans to have frank conversations about dying and end-of-life issues with loved ones, to make known their preferences.
In fact, since 2011, the Agency for Integrated Care has been working with hospices, hospitals, and other groups to make Advance Care Planning (ACP) accessible for Singaporeans. ACP encourages people to discuss with loved ones how they would like to be cared for if they have a life-limiting illness and to make their wishes known in advance.
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Apart from raising capacity and awareness, what has also changed is the financing model for palliative care. Inpatient palliative care is now covered by MediShield Life, subject to limits.
Means-tested subsidies are available to cover day and home palliative care.
Palliative care standards are also being raised across the board and made more accessible. From April 2020, a common service framework for palliative care was introduced for inpatient hospices and community hospitals.
But one thing has not changed: late referrals.
Back in 2011, palliative care was quite niche; even as a journalist who wrote often on healthcare matters, I did not know that it was available for someone like my mother. In the months after she died, I was angry that the many doctors who attended to her had never spoken to us about palliative care.
Sadly, referrals to palliative care are still rather late in a person's life.
Figures from the Singapore Hospice Council show that from the financial years 2017 to 2020, about 12,000 referrals to palliative care were made on average each year for 9,000 patients.
On average, a patient in acute hospital was referred to palliative care 12 days before he or she died.
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The interval from referral to death was 18 days for those in inpatient hospice care, 44 days for those under home or day care services, and 95 for those in outpatient clinic care.
As doctors noted, this meant patients are being reached very late in their illness journey - for those in acute hospitals it was in their last fortnight of life.
Why might this be so? Perhaps there just aren't enough palliative care doctors and nurses to go round. But about 11,000 healthcare workers have been trained to provide palliative care and more than 100 doctors have taken the graduate diploma in palliative medicine.
However, many of those who got such training felt it was not enough to prepare them to support patients with life-threatening illnesses, it was reported. So building capacity - training more healthcare professionals in end-of-life care and deepening training - is crucial.
Another reason for the late referrals might simply be that doctors working with very sick patients just aren't referring them to palliative care early enough. This was hinted at when doctors urged closer collaboration between oncologists, organ specialists and palliative care teams.
If this is indeed the case, doctors need to be persuaded of how early referrals can ease patients' suffering, and then be educated and monitored on the need for earlier referrals. They should also not see such referrals as a sign of defeat. Instead, they should see it as a continuum of care. After all, despite doctors' best efforts, patients die every day.
Every week's delay in referral could mean the patient suffers pain longer. Doctors who hesitate to make a referral out of professional pride or territorial concerns should realise that the price of their reluctance is being paid by extra days of suffering by their patient.
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What else might encourage earlier referrals to palliative care that can reduce suffering for very sick patients?
I think patients themselves and their caregivers can get educated on palliative care - its benefits and its methods. They can then make a request for it, and have healthcare professionals assess their need for such care.
To do so, many of us have to get over certain mental obstacles about palliative care.
First, we have to shift from thinking of a cure for a patient with severe illness, to caring for the patient. The shift in outlook from curative treatments to caregiving may not come naturally, but is a more honest description of what a patient with progressive, advanced illness really needs.
Finally, we have to realise that asking for palliative care for a loved one is not a last-resort act of despair, but a loving act to help manage pain and ease the last journey.
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