Palliative Care: Living well till the very end

Two Tree Lodge team members providing home-based PC to a patient.

WHAT happens when a loved one or someone close to us is diagnosed with a life-threatening illness? Do we just wait until the symptoms of their disease manifest and render them incapable of living their normal lives? And do we then expect them to just lie in bed and wait to see if their primary treatments may triumph over the disease?

If that sounds like a depressing scenario, then yes you’re right; no one chooses to be ill so during the duration of their illness, the least we can do as fellow humans is to provide them comfort in any way possible.

And with advancements in our medical field having come a long way in the past century, we can utilise our increased knowledge about diseases, their symptoms and how to treat them, to provide our ill and sick with a better quality of life and reduce their needless suffering.

There is term for this simple act of humanity and it’s called palliative care (PC).

It’s an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illnesses, through the prevention and relief of suffering by means of early identification, assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Two tree lodge members with Dr Ling (third from left) and Dr Tiong (second from left) of NCS Sarawak branch.

History of palliative care

Half a century ago, the modern palliative care movement began in the United Kingdom when the first modern hospice — St Christopher’s Hospice — was established in 1967.

Its founder, Dame Cicely Saunders, was a British registered nurse during World War Two who went on to become a medical social worker to provide patients and their families with counselling and psychotherapy support.

She strongly believed that patients needed compassionate care to help address their fears and concerns, and her views on medical palliative comfort to treat their physical symptoms were later solidified when she developed a relationship with a Jewish-Polish refugee afflicted with terminal cancer.

After the death of the refugee, she went on to pursue her medical degree and after qualifying as a physician, obtained a research scholarship to study pain control in terminal illness and was allowed to put her ideas of PC into practice.

From there, her successes in her research allowed her to help establish the St Christopher’s Hospice and convince the world about the benefits of PC.

She famously said: “The care of the dying demands all that we can do to enable patients to live until they die.”

Going beyond medical treatment

And besides pioneering this relatively new subset of medicine, Dame Saunders also introduced the clinical idea of ‘total pain’ into the medical community.

Having sat by the bedsides of numerous dying patients during her career as a nurse, a medical social worker and a physician, she learned that pain and its severity were not just some simple process measured by the physical injury that caused them.

Explaining the concept of total pain, Dr Winnie Ling, a medical oncologist at Normah Specialist Centre and a committee member of the Malaysian Oncological Society (MOS), said: “The manifestation of pain is multi-factorial and can be caused by physical, social, psychological, and or spiritual factors. Unresolved grief or issues can transform into pain, adding to the total pain experience of the patient, so PC aims not only to treat pain arising from the symptoms of an illness but also pain patients might experience from an emotional or spiritual level.”

In understanding this, it is important to note that PC is not a passive and conservative approach to managing the symptoms of a life-threatening or chronic illness.

Instead it is very intensive, second only to intensive care in terms of the level of care provided, because professionals involved in this subset of medicine are actively seeking and treating symptoms of a patient — be it breathlessness, decreased mobility, confusion and or anything troubling the patient.

And care doesn’t just stop at the patient as Dr Ling guides that it is also for their families and loved ones as well.

“It is impossible to care for a sick patient day in and day out without feeling burnt out. PC recognises the burden and pain family members may carry as well and lends them the support and care they need to get through this difficult time in their lives.”

Causes of death in children needing PC at EOL, Hospice Malaysia.

Misconceptions

A common misconception about PC that Dr Ling believes is of utmost importance to address is that palliative care is NOT euthanasia — physician-assisted suicide.

She explains that PC is not euthanasia because it affirms life while euthanasia does not.

“PC rejects the idea of euthanasia because its main objective is to relieve the symptoms of a patient with dosages of medication just enough to ease his or her pain while euthanasia’s main objective is to end the life of a patient by giving them dosages high enough to cause death.

“We do not aim to hasten death like euthanasia, instead we treat the pain a patient experiences so they can live well till the very end,” she asserts.

Another common misconception is that PC is only for cancer patients.

This is far from reality as multiple studies conducted around the world have found that patients with cardiovascular diseases were more likely to require PC instead.

In Malaysia, reports from Hospice Malaysia, a non-government organisation, found that 43.83 per cent of patients that need PC are patients with cardiovascular diseases while only 32.71 per cent are patients with cancer.

So with a widespread and outdated mentality that palliative care is only for cancer patients, Dr Ling laments that there is a severe unmet need of PC access state side for patients with other types of life-threatening illnesses.

“And this applies to children as well as the study also found that children most in need of PC are the ones born with severe defects that are life threatening,” she adds.

But what can be done about this unmet need?

According to Dr Ling, raising awareness on PC and its benefits would be one of the most effective ways as surveys conducted by Hospice Malaysia have shown that 90 per cent of its respondents are unaware of what PC is and after being given a brief introduction, 99 per cent showed support for it while over 60 per cent felt it should be integrated into national healthcare systems.

Causes of death in adults needing PC at end of life (EOL), Hospice Malaysia.

Benefits

That being said, let’s explore the benefits of PC. So far, it is understood that the main benefit of PC is an increased quality of life in the patients who receive it as they are able to get relief for their total pain experience through medication and support.

But their increase in quality of life isn’t just based on this as Dr Ling shares that there are other factors in play, one being increased knowledge.

“Early PC has many good effects and one is that it helps patients to understand their disease better as PC teams are able to talk to and help them have a more realistic understanding of their prognosis. And with a more accurate perception, patients are empowered to make better decisions about their goal treatment plans.

“Near-end-of-life patients may reconsider undergoing potentially futile treatments and instead choose to do other things that would improve their quality of life, like going on a holiday with their family.”

And beyond that, it seems that PC also has an effect of improving the survival rates of patients.

In study published in the new England journal of medicine titled “Early palliative care for patients with metastatic non-small-cell lung cancer,” it was found that advanced lung cancer patients who underwent PC in combination with their primary treatments, lived on average three months longer than their counterparts without PC.

It is suggested that this is due to the better treatment decisions, made by patients who received PC, considering only 33 per cent opted for aggressive treatment near their end of life compared to 54 per cent in the group of patients that did not receive PC.

In addition, the extra support patients with PC received also helped reduce their overall depressive symptoms significantly.

“Based off this, if PC was a drug, it would have been marketed at RM20,000 a month,” Dr Ling muses.

While it is not the aim of PC, it is also well proven that one of its unintended benefits is an overall reduction in medical costs as patients are less likely to undergo arguably futile and unnecessary treatments at their end of life.

Hospice Malaysia National Survey 2015

Need for more palliative care locally

With all that said, Dr Ling advocates that access to good PC is basic human right and with four out of 10 Malaysian patients expected to be in need of PC, she believes all clinicians should have basic PC skills and knowledge to help relieve the pain and suffering of their patients, and allow them to recognise the need to address emotional and spiritual issues at the end of life of their patients.

This is especially needed in Sarawak as there are a multitude of challenges such as poor public awareness, cultural barriers and logistics of outreach to rural areas that are preventing us from developing better PC access locally.

In addition, there is also a lack of PC specialists and trained and skilled PC staff presently, leaving the PC ward at Sarawak General Hospital and five other non-governmental organisations (NGOs) offering PC, severely under-staffed and under-funded.

The five NGOs offering palliative care locally are National Cancer Society (NCS) Sarawak branch, Palliative Care Association Miri, Kuching Life Care, Two Tree Lodge Kuching Hospice (Two Tree Lodge) and Sarawak Hospice Society in Kuching.

Of these NGOs, the NCS which began providing PC first, has tirelessly pioneered the local movement of PC for the last two decades and encourage others to follow suit.

However with limited resources and funding, the demand for PC locally still far exceeds our supply.

“We lack a lot of resources but it can be done — we just need to put in a lot more effort and work together,” she declares.

About Dr Winnie Ling

After finishing her housemanship in Adelaide, South Australia, Dr Ling returned home where her very first posting as a medical officer was at the Radiotherapy and Oncology unit (RTU) in SGH.

Thrown into a new environment which was severely understaffed at the time, Dr Ling recalls that she was initially overwhelmed by the whole experience and felt totally inadequate.

However, not giving up her new-found responsibilities, she soldiered on and by the end of her posting, found herself so deeply moved by her experience at the RTU that she decided to spend the next decade of her life getting trained and equipped as an oncologist.

An advocate of a more holistic approach to medicine, Dr Ling believes that the field of oncology is not just about treating cancer but also about treating and supporting patients with cancer, and their families as well.

“I think it’s a tremendous privilege for us oncologists to journey with our patients and their families through what is understandably a challenging time in their lives,” she notes.

In 2013, a year after completing her medical oncology training in Singapore, Dr Ling returned to the RTU where she first started. Since then, she has continued to serve as an oncologist in Sarawak while providing PC as a key member of Two Tree Lodge.

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