Having a Child with Cancer in the family places tons of stress on the whole family, and dealing with the illness can be devastating in many ways.
When a child is initially diagnosed with cancer, the parents generally go through various stages, which are rather akin to the stages that those who have lost someone goes through – denial, anger, bargaining, depression and finally acceptance.
For the lucky, after months, sometimes even years of dealing with rigorous treatments and all the other side-effects of both the cancer and the treatments, the child is declared NED – “No Evidence of Disease” and goes into remission.
Unfortunately, not all children are that lucky, and while we prefer not to think about it, comes a time in some Onco Parents’ lives that the conversation around death needs to be voiced, and this often also leads to a conversation around palliative care for the child.
What is Palliative Care?
Mattie Stepanek, a child who died from a life limiting neuro-muscular illness, had this to say about paediatric palliative care:
“Palliative care no longer means helping children die well, it means helping children and their families to live well and then, when the time is certain, to help them die gently”.
Palliative care focuses on a child’s quality of life and support for the whole family, including siblings and grandparents. Such care not only addresses the child’s illness but also their overall well-being – physical, emotional, cultural and spiritual.
While there are similarities in the general principles of palliative care provided to children and adults, there are also key differences. These include the types of conditions more common in children, and the need to pay special attention to the whole family, particularly the sick child’s siblings.
Why a Child May Need Palliative Care
Children are often referred to palliative care when their condition deteriorates or progresses. For children with cancer, this may be when it spreads despite chemotherapy, or returns after treatment.
A child may be referred to palliative care for reasons such as pain management, or other physical symptoms such as vomiting, difficulty managing seizures or constipation. Caring for the child’s emotions is also important. Sometimes palliative care may assist in caring for a child at home, or provide support so the child can continue to attend school.
Palliative care also provides parents with practical supports, such as equipment and “short breaks”. These can occur in the home (where a carer gives the parents a break) or in a children’s hospice. Such care can have a huge impact on the well-being of the child and their family.
Caring for Whole Family
Palliative care for children is especially concerned with not only treating the child, but the whole family. All family members may be vulnerable as they face the changes the child’s diagnosis imposes on their lives.
It is particularly important to support the siblings of the sick child. Some siblings may not share their thoughts and feelings of distress with their parents because they do not want to add to their parent’s difficulties. Siblings often have unique bonds with each other, and the illness or death of a brother or sister may represent the loss of a friend they have shared many life experiences with.
Support for siblings is particularly important given a sibling’s death will affect their future. It may cause behavioural problems, school failure, developmental regression or physical symptoms. A Swedish study found the perception a sibling did not have a peaceful death and poor communication with family, friends and health professionals increased the risk for unresolved grief in surviving siblings.
Another Swedish study showed it is possible for siblings to have positive memories about their brother’s or sister’s death. With the right support, some have expressed the feeling they grew as individuals in the process. Others experienced stagnation because of the physical and mental distress they bore throughout their sibling’s illness and death, often feeling forgotten.
Different Approach for Children
Children have evolving physical, emotional and cognitive development. So palliative care professionals and other carers must be aware of and responsive to each child’s changing levels of communication and ability to understand their illness and treatments. Decision-making on medical care is also different than with adults, as parents (or a guardian) will make decisions for their child.
Planning (or thinking) ahead is important in the context of a life-limiting condition. This is why there is increasing emphasis on developing advance care plans for children.
Such plans give children and parents the option of writing down what treatments they may or may not wish to have if their condition progresses or if there comes a time when they are unable to participate in such decisions.
Paediatric Palliative Care in South Africa
In South Africa palliative care has largely been developed out of the Hospice movement and is predominantly community based. Although hospices in South Africa have been caring for adults since the late 70’s, there are few hospices that have the confidence to treat terminally ill children, especially those with more complex conditions.
Healthcare professionals generally receive insufficient training in paediatric pain management and palliative care which means that chronically or terminally ill children’s symptoms are not managed optimally; they are hospitalised for prolonged periods; and may die in hospital rather than at home.
As a result, these children and their families experience tremendous distress and suffering that could be prevented to a large extent.
Palliative medicine uses a multidisciplinary approach to patient care, relying on input from physicians and nurses and other allied health professionals.
In the Western Cape alone, there are an estimated 91 332 children needing generalist palliative care, with 34 706 needing specialist palliative care (UNICEF 2013).
Paedspal Cape Town
Paedspal Cape Town is a public-private partnership programme that provides care and support for children living with life threatening and life limiting illnesses in the Western Cape. The name is a play on words with the ‘pal’ being a shortening of the word ‘palliative’ as well as a colloquial word for ‘friend’.
Paedspal Cape Town’s mission is to ensure the best possible quality of life for these children; to provide optimal support for their families; and to work alongside their primary care teams and their community via Clinical Services, Education, Support, Therapy, and Research.
Paedspal provides a multi-disciplinary paediatric palliative care consultative service to select public and private hospitals. The team consists of 2 paediatricians, a medical officer, counsellor, OT and an aromatherapist.
Palliative care consultations include requests for assistance with pain and symptom control, counselling support, multi-disciplinary decision making, advance and terminal care planning. They will also advise on referrals to hospices and other community based services closer to patients’ homes where these are known to the Team.
Paedspal runs a Paediatric Palliative Care Out Patient Unit (POPU) as well as a Chronic Paediatric Pain Clinic within Rondebosch Medical Centre (RMC) and sees any child from the age of 0-18 years with a life limiting or life threatening condition as well as children with chronic pain disorders. Public patients are seen pro-bono and the medical aids of private patients are billed.
POPU is not a children’s hospice and does not currently provide in-patient care; patients will be referred to hospitals or other health care facilities for in-patient care – a palliative care facility is in the works though and will hopefully open later in 2018 or in 2019.
Sarah Fox Children’s Convalescent Hospital
The Sarah Fox Children’s Convalescent Hospital is a registered non-profit organisation primarily funded by the Department of Health. Our hospital therefore works within the intermediate health care policy framework which forms part of community based health care services rendered in the Western Cape.
Sarah Fox Hospital is an in-patient facility for children aged 0 to 6 years with exceptions of wider age ranges for immobile cerebral palsy patients and/or patients with special needs.
Sarah Fox provides rehabilitative and recovery health care services to children with medical conditions needing intermediate care before re-entering his/her community.
In June 2014, a new 10-bed Paediatric Palliative Care Unit was opened within the Sarah Fox Convalescent Hospital.
The unit aims to care for children with life-limiting and life-threatening illnesses that require Pain and symptom control, Psycho-social support, Respite care, Advanced care planning, Family support, End of life and terminal care, and Bereavement support
The unit provides 24/7 nursing care and is led by a palliative care trained nurse with input from a multi-disciplinary team that includes a paediatric palliative care consultant, medical officer, social worker, occupational therapist, bereavement councillor and other professional volunteers including massage, art and music therapists
Patch South Africa
Palliative Treatment for Children (Patch) South Africa is an inclusive and compassionate network that aims to share specialised knowledge, tools and opportunities to ensure the best possible care for children with life-threatening and life-limiting illnesses, and to provide support to families and lay caregivers.
Patch SA’s mission is to mobilise and support a sustainable network of individuals, organisations, professionals and caregivers to provide holistic and culturally appropriate palliative care for children and their families from diagnosis to bereavement.
Patch community seeks to empower the broader community to support professionals and affected families through fundraising and
other practical initiatives.
When a child is diagnosed with a serious or life-threatening condition, everything changes. Parents not only have to face the difficult realization that their child is seriously ill and may be suffering, but they may also feel overwhelmed by their lack of understanding of the complex and ongoing medical care that may be required, and the impact that it will have on their current lives as they know it.
Each family is unique and everyone’s journey will be different. PatchSA hopes to ease this difficult journey through the sharing of information and the stories and experiences of other families.