Why It's Necessary to Destigmatize Palliative Care for Children
What happens to parents when their child is diagnosed with a life-threatening terminal illness or medical complications? They go through a lot of medical procedures, sleepless nights, work disruptions, lifestyle readjustments and financial difficulties, all of which contribute to significant emotional distress.
While medical professionals deal with the physical health issue at hand, who addresses the psychological coping mechanisms of the child with illness, parents and other family members?
The answer is usually a counsellor or psychologist. But do we have that luxury in our country’s healthcare system? Not really.
I recently met my former psychology student, Chareessa Chee who is now a registered counsellor at the Malaysian Children’s Hospice (MCH), under the Malaysian Association of Paediatric Palliative Care (MAPPAC) who highlighted how palliative care for children is severely lacking in Malaysia. Currently, she is the only counsellor at the hospice.
Palliative care is something that is usually associated with end-of-life care for people with terminal illness such as cancer who are usually elderly adults. We tend to not connect palliative care with children. In reality, this is also reflected in our national healthcare system because we hardly have any services for paediatric palliative care.
What is paediatric palliative care (PPC)? It is a multidisciplinary effort to provide a better quality of life for children with life-limiting illnesses and their family members, by providing comfort, reducing suffering and any sense of indignity by using holistic approaches to healthcare.
There are many kinds of syndromes and medical complications that can shorten the life of children and increases instances of medical emergencies, close monitoring of symptoms and managing them. The threat of disability and lifespan adds to the grief in parents and other family members. All these needs are addressed by PPC.
In certain conditions such as cancer, there is a strong need for regular management of symptoms such as pain, and to provide as much comfort as possible, while also attending to the psychosocial needs of caregivers and family.
The threat of an early death in children due to various medical conditions is extremely distressing for parents and the rest of the family. Much of their life become disrupted, including financial planning, given the expensive nature of medical services, as well as time spent on coping with emotional pain.
Extra layer of support
Chee says that paediatric palliative care provides an extra layer of support on top of the primary healthcare team to lessen the child’s symptoms, discomfort and distress, and to provide physical, psychosocial and spiritual support to the family. She says PPC is very much a collective effort that is carried out by healthcare professionals in collaboration with the family. This is, of course, the ideal situation.
However, as mentioned earlier, we have a bigger problem – lack of human resources – particularly experts in palliative care from various allied health professions such as nurses, counsellors and psychologists as well as systemic resources such as medico-legal advice, transportation and medical protocols for transition from hospital to community care setting.
Chee also mentions the lack of clear referral mechanisms for families with children who could 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 said.
The National Palliative Care Policy and Strategic Plan 2019-2030 clearly highlighted the severe lack of resources in paediatric palliative care and calls for increased resources and services for it. In response to the plan, the Ministry of Health Malaysia (MoH) has published the Handbook of Children’s Palliative Care Malaysia in 2021 to provide basic education to healthcare professionals and interested parties about PPC.
Overall, as a society, we are poorly prepared to face the shortened life of a child – not just parents and siblings, but also health professionals, particularly in assessing the needs for a referral to palliative care and addressing the grief of a diagnosis indicating a high risk of permanent dependency, chronic discomfort and living through the suffering of the child before death.
Tackling shortage of resources
Medical personnel are not typically trained to deal with grief and bereavement. Even mental health professionals do not necessarily have specialised training in end-of-life counselling and support. We also have very few PPC experts and services.
So, given the estimated 80,000 children in Malaysia who would benefit from palliative care, how do we tackle this shortage of resources?
We need to instil more awareness about the needs of children experiencing chronic medical conditions that shorten their lives and provide solutions to them. While medical and allied health professional training promotes components of palliative care, the rest of the society can also play multiple roles to contribute and address the non-medical aspects of PPC such as the construction of hospice centres as well as access to resources such as transport, technology and information.I also learnt that there is a stigma surrounding PPC, that it indicates that the family has given up on the child’s treatment. To addresss this, PPC needs to be integrated into current services, such as clinics, inpatient management, home visits and medical policies to reduce family apprehension towards it.
Nevertheless, such integration takes time. What is important for us in the community is to understand that there is no shame in promoting a better quality of life by employing PPC as a form of holistic support.
It is not about giving up on children at all. On the contrary, it is actively celebrating the life they still have and to make it one that is full of love, kindness, affection, dignity and comfort.
After all, palliative care is part of healthcare, and care is something we can all do regardless of the availability or potential of cure. So let’s put the care back into healthcare; life is better lived that way.