The Importance of Palliative Care for Children with Cancer
Following on yesterday’s post re Childhood Cancer in Africa, in which we discussed Paediatric Supportive Care and Paediatric Palliative Care (PPC) for Children with Cancer in Africa, including in South Africa, here is some more information regarding PPC.
Palliative care focuses on preventing, managing, and relieving the symptoms of cancer and the side effects of cancer treatment. It also provides comprehensive support to people living with cancer and their family, friends, and caregivers. Anyone, regardless of age or type and stage of cancer may receive palliative care before, after, and during treatment. Talking about palliative care soon after a cancer diagnosis helps patients better understand their prognosis and goals of treatment, clarify their expectations, and maintain their quality of life.
Recent research calculates that more than 21 million children would benefit from palliative care but less than 1% of these children are able to access services.
At the side event on children’s palliative care during the 68th World Health Assembly, Joan Marston presented on the global need for children’s palliative care.
Published on May 28, 2015
At the side event on children’s palliative care held at the 68th World Health Assembly held on 25 May 2015 Joan Marston speaks about the global need for children’s palliative care.
Recent research undertaken by UNICEF and ICPCN looked at developing a methodology to identify the need for children’s palliative care, what was present in the country and the provision gaps. Using this methodology, the researchers have now looked at 59.6% of the world’s children and extrapolated the results to produce the following figures:
- Around 21 million children worldwide would benefit from palliative care
- Around 8 million children within that 21 million need more specialised palliative care provision
- The average prevalence is 44 in 10 000 children with very large variations ranging from, for example, 21 in 10 000 in Australia to 119 in 10 000 in Zimbabwe
- HIV has had a significant impact on these figures
- India has the highest need. Over 6 million children in this country would benefit from palliative care, with 1.6 needing specialised care.
- Globally less than 1% of children are having their palliative care needs met
- The biggest gaps in provision can be found in Africa, parts of Latin America, Asia and the Pacific Islands.
Listing some of the barriers that exist to the provision of services for children Joan spoke of a lack of resources in lower income countries, the fear of using opioids for children’s pain as well as minimal opportunities to receive appropriate education. A suggested solution would be to introduce children’s palliative care into all undergraduate studies for doctors, nurses, social workers, chaplains and other members of the multidisciplinary team.
Joan also spoke of the work of the ICPCN to overcome the lack of education through their E-learning modules, presently available in 8 languages with modules in Hindi and Czech in development.
Nothing we do is of any importance unless it impacts on children and their families
~ Joan Marston ~
Published on Oct 22, 2014
This patient education video offers an introduction to palliative care, which provides support and relief to any person from the symptoms of cancer or side effects of treatment, regardless of age or type and stage of disease. It is led by Dr. Michael Fisch, survivor Holly Anderson, Dr. Jennifer S. Temel, and Dr. Dorothy M.K. Keefe.
What is Palliative Care?
The World Health Organization (WHO) defined Palliative Care as care that addresses the physical, emotional, psychological, and spiritual needs of the dying in a compassionate and all-inclusive fashion.
Fortunately, sane minds prevailed and a paradigm shift has taken place as far as the definition of Palliative Care goes; we realised that Palliative Care should not only apply to those who are dying, but also to those with serious illnesses such as cancer, where fewer are dying but many are suffering.
Health care systems have begun to recognise that anyone facing a life-threatening illness deserves to have their symptoms managed (especially pain), and their non-physical needs met. Whatever the outcome, people are much more able to face illness with dignity and energy if they receive compassionate, holistic care that addresses all of these areas.
Palliative care should therefore be given as early as possible in the cancer treatment process, and continue throughout the course of the cancer. Talking about palliative care soon after a cancer diagnosis helps patients better understand their prognosis and goals of treatment, clarify their expectations, and maintain their quality of life
Palliative care for children is the active total care of the child’s body, mind and spirit, and should also provide comprehensive support to their family, friends, and caregivers. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.
For the first 22 months of his life Ayanda Khumalo* had been a normal baby and toddler, living with his mother and grandmother near Durban in KwaZulu Natal, South Africa. Around this time his mother, Thandi*, noticed an unusual swelling in his abdomen, he had a poor appetite and became listless.
From the local clinic Ayanda was referred to the district hospital where a rare cancer was diagnosed called Rhabdomyosarcoma.
Thandi describes the next twelve months as “a tiring time of long taxi rides and hospital visits” in order for Ayanda to undergo surgery and then regular sessions of chemotherapy and radiotherapy.
Initially there was hope that the treatment would work but soon after Ayanda’s 3rd birthday the cancer reoccurred and he was readmitted to hospital where they found the cancer had spread to other parts of his body. Ayanda’s parents were given the sad news that there was little more that could be done and Ayanda was discharged from the hospital. No explanation was given of what might happen next and what to do in order to help their son in the last weeks or months of his life. Bewildered, they left the hospital with a bottle of paracetamol and a very sick child.
Dr Julia Ambler, a paediatric palliative care specialist with Bigshoes describes finding Ayanda “very symptomatic and in lots of pain that was uncontrolled.” She goes on to explain that they were able to get his pain under control and when he was feeling better they could start discussing what the family wanted for him. “They were aware that he was going to die at some stage.”But for us it is about where they wanted to have that care in those last days and about Ayanda’s quality of life,” she says.
Published on Aug 21, 2012
Dr Julia Ambler, a paediatric palliative care specialist who works for an organisation called The Bigshoes Foundation to provide palliative (hospice) care to children in the greater Durban area in KwaZulu Natal (South Africa) talks about what paediatric palliative care is, why it is a human right and how it makes a difference in the lives of children and their families.
For the first time since his diagnosis, Ayanda’s parents were involved in the decision making around his care and treatment. They chose to have Ayanda die at home rather than in the hospital and were empowered to give him his pain medication. They were helped to draw up a full plan of what to do in an emergency and in any unexpected eventuality.
Dr Ambler sums up by saying: “So how palliative care made a difference … is that they firstly got to understand what was going on. Then they got to be involved in the decision making and at the end of the day they had a child that was really comfortable and who died at their own home, which was their choice.”
* Names have been changed
The Little Fighters Cancer Trust
In palliative care, no one should be invisible, yet there are MANY families in South Africa who do not receive the necessary help from the government for their Child with Cancer. Even though they may qualify for assistance at government hospitals, this help is limited to medical help and sometimes includes psychological help but does not go far enough.
Even when families are entitled to state medical and psychological help, there are really too few centres that can offer paediatric oncology services, and they are often very far away from where the patient lives. This means that the child has to travel, and a parent has to travel to whichever hospital can assist, and the parent must travel with the child – this often necessitates one parent (usually the mother) giving up their job to travel with and care for the child.
Most families who have a Child with Cancer in South Africa are suddenly faced with the following for which they receive no State help:
- A lack of knowledge around cancer, cancer treatment and basically everything that they will be faced with;
- One less income due to one parent having had to give up their job to care for the child with cancer;
- Travel costs to the hospital for the child and the parent during diagnosis and treatment;
- Accommodation, food and personal hygiene costs for the parent while the child is in hospital which is sometimes months on end;
- Additional costs for toiletries, pyjamas and other necessities for the hospital visit;
- Special food for the Child with Cancer as children with Cancer have to follow a nutritionally specific diet;
- Special medications, some of which are not provided by the hospital;
- Warm clothing and bedding for the Child with Cancer both in the hospital and when at home;
- Overall financial strain and often the inability to provide for the rest of the family, buy electricity, food or clothing;
- A huge amount of emotional and psychological stress, both for the Child with Cancer and the parents, and often for siblings as well;
Most parents of children newly diagnosed with cancer are emotional wrecks, and are so scared that they do not know where to turn. Unfortunately while some of our paediatric oncology hospitals are great, the majority of hospitals and clinics are ill-equipped to deal with a child with cancer and the staff untrained to give the required support or information.
And this is exactly where the Little Fighters Cancer Trust comes in;
The Little Fighters Cancer Trust believes in the preservation of individual dignity and pride, and therefore provides a wide range of support with a holistic approach in an effort to prevent Children with Cancer and their Families from feeling alienated and forgotten.
Each Child with Cancer and his/her Family are treated as individuals as we understand and respect the uniqueness of each situation. Support is provided on a National basis.
The Little Fighters Cancer Trust’s work is divided into two main sections:
- Advocating and promoting Childhood Cancer Awareness
- Support to Children with Cancer and their Families
Childhood Cancer Awareness
LFCT promotes and advocates National Childhood Cancer Awareness in an effort to increase the amount of diagnosed Childhood Cancer cases in South Africa as an increase in earlier diagnosis will result in a higher survival rate for Children with Cancer in South Africa.
Support to Children with Cancer and their Families
Support to Children with Cancer and their Families is divided into three main priorities, which ensures that our reach is as wide as our resources can manage:
- Support to Individual Childhood Cancer affected Families
- Support to Paediatric Oncology Hospital Wards
- Support to Children with Cancer housed in Places of Safety
Apart from offering emotional support to Children with Cancer (who we refer to as our Little Fighters) and their Families, we also supply knowledge, transport assistance, physical comforts, financial assistance where we can and where required, nutritional needs, and many other forms of individual assistance where required such as medication, special beds, mobility devices, medical devices, and whatever else we can.
LFCT also has ongoing projects which provide much-needed help throughout the year:
- BAG OF HOPE Project – Provides Children with Cancer in Hospitals and their Bedside Carers with the basics like toiletries, snacks, toys, food, personal hygiene products and more.
- Barefoot for a Day Project – Provides Children with Cancer in Hospitals and Places of Safety with new shoes
- Get Wrapped Project – Provides Children with Cancer in Hospitals and Places of Safety with new single bed blankets
- Snug as a Bug Project – Provides Children with Cancer in Hospitals and Places of Safety with clothing twice annually – at the start of Summer and again at the start of Winter
- Special Celebrations and Events – Special celebrations that the Little Fighters Cancer Trust takes special care to provide for include but are not limited to: Birthdays; Fun Outings; Mother’s Day; Christmas; Funerals
- Feeding Our Families – Children with Cancer have to follow a nutritionally specific diet, which is often impossible for families to follow due to lack of funds. The Little Fighters Cancer Trust ensures that these families have food in the home while the Child with Cancer is in and out of hospital.
- Christmas Elf Project – provides Children with Cancer and their siblings with Christmas presents which many of them would not have otherwise. Families are also gifted with a full month’s worth of groceries so that they too can share in the Festive Season without having to worry about where the next meal will come from.
- Festive Season Food Hampers – the Little Fighters Cancer Trust provides comprehensive, non-perishable food hampers for Children with Cancer housed at Places of Safety to take home, ensuring that both the Child with Cancer and the family have healthy and nutritious food over the holiday period.
The Little Fighters Cancer Trust cannot continue any of our projects without your full and continued support, and our Little Fighters only stand a fighting chance at victory with YOU in their corner.
LFCT receives NO assistance from the South African government and therefore counts on donations to continue doing what we do, so please consider donating.
Account Holder: Little Fighters Cancer Organization
Bank: FNB Paarl Mall
Account No: 62277783249
Branch code: 250057
Swift code for international donations: FIRNZAJJ
Trust Reg No: IT2817/2010
PayPal – Donations
The Little Fighters Cancer Trust is a registered NPO with PBO status. This affords private and corporate donors the taxation benefits as set out in Section 18A.
BEE score points are also accumulated.
Trust Reg No: IT2817/2010
NPO No: 089 376
PBO No: 930037657
Please contact us should you have any queries.
You can also check out our Projects Page to see what we are up to throughout the year.
Joan Marston Presentation: ehospice
Ayanda’s Story: ICPCN