The elephant in the room
This year’s Palliative Care Awareness Campaign by Hospis Malaysia emphasises that in order for every person suffering a serious illness to receive the support they need, everybody needs to get involved.
Everyone needs to get involved if every person suffering a serious illness is to get the support they need, says Hospis Malaysia in its Palliative Care Awareness Campaign this year.
THE “elephant in the room” is an English language metaphorical idiom that denotes an obvious problem or issue that no one wants to discuss or challenge.
It is a problem that people are aware about, but actual discussion about it may be uncomfortable.
Civil society has created campaigns around the idiom to focus on issues such as racism and mental health.
Generally, the control and implementation of a nation’s healthcare system may be derived from a top down or bottom up approach.
Do we want to have a sense that our healthcare systems will care for us when we are ill?
Do we want to have a say in how it is shaped to support us in our times of need?
What are the trade-offs between health, education, defence and so on, in terms of public approach, funding and implementation?
In dealing with cancer and cardiovascular disease, it seems obvious that since smoking is by far the main causative agent, wouldn’t it be logical to simply ban smoking?
Or is it a “sensitive” issue, and therefore, we will find various ways to not deal with it?
Whose voice really matters?
There will often have to be trade-offs whenever we start dealing with individual and societal rights.
The values that we have as individuals may not necessarily be shared by society and government.
Those with a “lesser” voice are often unable to be heard, or society refuses to grant them a platform to voice their opinion.
Patients rarely have a decision-making role in healthcare systems – but when you consider the voice of stakeholders, are they not perhaps the most important?
Even before a diagnosis is made, a patient may trivialise a growing lump, frequent coughing of blood, or a great deal of unexplained weight loss.
A need to believe that all is well, or conversely. the “fear of the worse” may delay or stop someone addressing a possible early cancer diagnosis and potential treatment.
Once a patient is diagnosed, then there are the voices that say, maybe we should not tell (the patient) their diagnosis or else he/she will get depressed and give up.
Later, in seeking treatment, are options actually discussed?
Is the patient consulted about his/her goals of care and are trade-offs discussed?
Matters such as potential cure, living longer and being free of pain are all potential options that may have to be considered.
Other issues that need to be acknowledged and addressed are financial resources, loss of ability to earn a living, loss of employment by a family member to become a caregiver, or even, the eventual loss of a loved one.
We need to talk about the elephants
An illness may cause loss of dignity; a feeling of being a burden; changes in physical functioning, affection and sexual intimacy; and sometimes, even a loss of faith in everything that had previously mattered to the patient.
How do we deal with such conversations?
Or do we avoid them and hope that all will be forgotten?
These are some of the “elephants” we have in our “room”.
They exist and will not disappear just because we cannot or do not know how to deal with them.
Palliative care deals with the impact of a life-changing illness to a patient and his or her loved ones.
Significantly, we have enough scientific evidence to show us how to deal with much of this.
Some of the goals may not be what we want, but most achieve what is needed by the patients.
Palliative care brings better quality of life, reduces pain and suffering, enables the patient to be cared for at home, have reduced hospital stay and unnecessary medical intervention, and in some cases, live longer than standard medical care.
In our needs analysis of palliative care needs for Malaysia in 2016 (Palliative Care Needs Assessment Report 2016: Malaysia), it is likely that four out of 10 Malaysians may eventually need palliative care.
In our ageing society, many of us will have cancer, organ failure and other life-limiting diseases.
How will we manage?
It is our largest elephant and we still cannot see it.
Perhaps when it happens to YOU, then can we begin to talk about it?