WHAT occurs to mother and father when their baby is recognized with a life-threatening terminal sickness or medical issues? They undergo plenty of medical procedures, sleepless nights, work disruptions, life-style readjustments and monetary difficulties, all of which contribute to vital emotional misery.
While medical professionals cope with the bodily well being concern at hand, who addresses the psychological coping mechanisms of the kid with sickness, mother and father and different members of the family?
The reply is normally a counsellor or psychologist. But do we have now that luxurious in our nation’s healthcare system? Not actually.
I lately met my former psychology pupil, Chareessa Chee who’s now a registered counsellor on the Malaysian Children’s Hospice (MCH), beneath the Malaysian Association of Paediatric Palliative Care (MAPPAC) who highlighted how palliative care for children is severely missing in Malaysia. Currently, she is the one counsellor on the hospice.
Palliative care is one thing that’s normally related to end-of-life care for folks with terminal sickness equivalent to most cancers who’re normally aged adults. We have a tendency to not join palliative care with children. In actuality, that is additionally mirrored in our nationwide healthcare system as a result of we hardly have any companies for paediatric palliative care.
What is paediatric palliative care (PPC)? It is a multidisciplinary effort to present a greater high quality of life for children with life-limiting sicknesses and their members of the family, by offering consolation, lowering struggling and any sense of indignity by utilizing holistic approaches to healthcare.
There are many sorts of syndromes and medical issues that may shorten the lifetime of children and will increase cases of medical emergencies, shut monitoring of signs and managing them. The menace of incapacity and lifespan provides to the grief in mother and father and different members of the family. All these wants are addressed by PPC.
In sure situations equivalent to most cancers, there’s a sturdy want for common administration of signs equivalent to ache, and to present as a lot consolation as potential, whereas additionally attending to the psychosocial wants of caregivers and household.
The menace of an early dying in children due to numerous medical situations is extraordinarily distressing for mother and father and the remainder of the household. Much of their life grow to be disrupted, together with monetary planning, given the costly nature of medical companies, in addition to time spent on dealing with emotional ache.
Chee is at present the only real counsellor at MCH, a hospice for children with lime-limiting situations. — CHAREESSA CHEE
Extra layer of assist
Chee says that paediatric palliative care offers an additional layer of assist on prime of the first healthcare staff to reduce the kid’s signs, discomfort and misery, and to present bodily, psychosocial and non secular assist to the household. She says PPC could be very a lot a collective effort that’s carried out by healthcare professionals in collaboration with the household. This is, after all, the best scenario.
However, as talked about earlier, we have now an even bigger drawback – lack of human sources – notably consultants in palliative care from numerous allied well being professions equivalent to nurses, counsellors and psychologists in addition to systemic sources equivalent to medico-legal recommendation, transportation and medical protocols for transition from hospital to neighborhood care setting.
Chee additionally mentions the shortage of clear referral mechanisms for households with children who may benefit from palliative care.
“Once a child is discharged from the hospital, parents are expected to continue providing specialised high level of care for their child with life-limiting illnesses, for which they are untrained for. This causes the family to keep their child at home, but without the necessary resources to manage his or her symptoms, like reducing pain,” she mentioned.
The National Palliative Care Policy and Strategic Plan 2019-2030 clearly highlighted the extreme lack of sources in paediatric palliative care and calls for elevated sources and companies for it. In response to the plan, the Ministry of Health Malaysia (MoH) has printed the Handbook of Children’s Palliative Care Malaysia in 2021 to present primary schooling to healthcare professionals and events about PPC.
Overall, as a society, we’re poorly ready to face the shortened life of a kid – not simply mother and father and siblings, but in addition well being professionals, notably in assessing the wants for a referral to palliative care and addressing the grief of a analysis indicating a excessive threat of everlasting dependency, power discomfort and residing by the struggling of the kid earlier than dying.
Tackling scarcity of sources
Medical personnel aren’t usually educated to cope with grief and bereavement. Even psychological well being professionals don’t essentially have specialised coaching in end-of-life counselling and assist. We even have only a few PPC consultants and companies.
So, given the estimated 80,000 children in Malaysia who would profit from palliative care, how will we deal with this scarcity of sources?
We want to instil extra consciousness concerning the wants of children experiencing power medical situations that shorten their lives and supply options to them. While medical and allied well being skilled coaching promotes elements of palliative care, the remainder of the society can even play a number of roles to contribute and deal with the non-medical elements of PPC equivalent to the development of hospice centres in addition to entry to sources equivalent to transport, know-how and data.I additionally learnt that there’s a stigma surrounding PPC, that it signifies that the household has given up on the kid’s remedy. To addresss this, PPC wants to be built-in into present companies, equivalent to clinics, inpatient administration, residence visits and medical insurance policies to scale back household apprehension in the direction of it.
Nevertheless, such integration takes time. What is essential for us locally is to perceive that there is no such thing as a disgrace in selling a greater high quality of life by using PPC as a type of holistic assist.
It shouldn’t be about giving up on children in any respect. On the opposite, it’s actively celebrating the life they nonetheless have and to make it one which is stuffed with love, kindness, affection, dignity and luxury.
After all, palliative care is a part of healthcare, and care is one thing we will all do whatever the availability or potential of treatment. So let’s put the care again into healthcare; life is best lived that method.
Dr Alvin Ng Lai Oon is a professor on the Department of Psychology, School of Medical and Life Science, Sunway University. He is a scientific psychologist by coaching and is passionate in selling psychological well being literacy locally.
