Cancer Alliance Advocacy Toolkit

Palliative Care Policy – Section 3 – Cancer and Children

KNOW YOUR RIGHTS: ALL CANCER PATIENTS, IRRESPECTIVE OF WHERE YOU LIVE, HAVE A RIGHT TO PALLIATIVE CARE, STARTING AT THE TIME OF DIAGNOSIS.

Children have little access to palliative care. They are at higher risk than adults to face inadequate pain relief. For children, 98% of those needing palliative care live in low- and middle-income countries, with almost half of them living in Africa. – World Health Organisation1

Click here for a pdf copy of the slides, or here to download the text only.

What is Palliative Care?

Palliative care is aimed at improving the quality of life of patients living with a serious illness, and of their families. It prevents and relieves suffering by ensuring the treatment of pain and other concerns that arise following a cancer diagnosis, so helping people continue to live an active life with their illness.

Palliative care affirms life, but if the cancer does not respond to treatment and the patient’s condition continues to worsen, palliative care is there to continue managing their pain and keeping them comfortable. This type of care helps to secure dignity in living, but also in dying should the illness progress.

Is Palliative Care different for Children with Cancer?

The World Health Organisation says palliative care for children with cancer is special. It is about the total care of the child’s body, mind and spirit, and also involves support for the family.

It is defined as follows:

  • It starts when cancer is diagnosed, and continues regardless of whether or not the child receives treatment directed at the disease.
  • Health providers must evaluate and alleviate a child’s physical, psychological and social distress.
  • Effective palliative care for children requires a broad, multi-disciplinary approach that includes the family, and makes use of available community resources. It can be successfully implemented even where such resources are limited.
  • It can be provided in tertiary hospitals, community health clinics, and in children’s own homes.2

What are the special challenges associated with Children with Cancer?

While paediatric palliative care is similar to adult palliative care, the specific difficulties associated with caring for children with cancer means specially trained healthcare professionals must be on hand to ensure they are not treated like “small adults”, the new policy says.

Some of the barriers to children accessing palliative care include:

  • Parents’ or doctors’ misperception of palliative care, believing this means “giving up”.
  • Their age or developmental stage.
  • Legal status.
  • Dependence on parents/guardians.
  • Cultural norms.
  • Illness and disability.
  • Poverty.
  • Orphanhood or abandonment.
  • Lack of trained healthcare providers.
  • Unavailability of essential palliative care medication for children.
  • Distance from health facilities.

How will Palliative Care help your child?

Studies have shown that:

  • Getting palliative care soon after diagnosis increases patients’ coping abilities and their quality of life.3
  • Getting hospital-based palliative care resulted in patients spending less time in intensive care units, and they were less likely to be readmitted to the hospital after they went home.
  • Patients had better quality of life and experienced fewer and less severe symptoms. These included less pain, less shortness of breath and less depression following palliative care involvement and care planning.
  • Palliative care may also increase survival. Patients in a 2010 study who were given palliative care alongside best supportive cancer treatment lived nearly three months longer than those who got no palliative care.4

What does South Africa’s new National Policy Framework and Strategy on Palliative Care 2017 – 2022 mean for you as a cancer patient?

This new policy recognises palliative care as an essential pat of the continuum of healthcare delivery. This means that this vital care is no longer an option that’s available only to certain, privileged communities. The policy applies to all South Africans, regardless of income or where you live.

What does it say about children?

The policy is clear that the following is needed in respect of children specifically:

  • Comprehensive services to allow every parent, including young and poverty-stricken mothers, to support themselves and their children.
  • More facilities providing palliative care for children.
  • An end to futile treatment that sees children suffer unnecessarily due to paternalism amongst some treatment providers, especially those who struggle to accept deaths in childhood.
  • Training of a multi-disciplinary healthcare workforce in palliative care, tailored specifically to meet the unique needs of children.5

What are our ongoing concerns?

The National Policy Framework and Strategy for Palliative Care has the potential to improve the care of people living with cancer. It is however essential that the government drives the initiative, ensuring the policy remains an active document that guides provincial strategy to implement its content, so ensuring that those who need palliative care actually receive this vital care.

We also call on the government to ensure that the policy is adequately funded and that healthcare workers are trained to provide palliative care to all – adults and children.

References

  1. World Health Organisation. 10 Facts on Palliative Care. Retrieved on March 13, 2017, from http://bit.ly/PalCare10Facts
  2. World Health Organisation. WHO Definition of Palliative Care. Retrieved on March 3, 2017, from http://bit.ly/PalCareDefn
  3. Hospice and Palliative Care Association of South Africa. Palliative Care. Retrieved on March 3, 2018, from http://bit.ly/PalCareWhatis
  4. Asco Conquer Cancer Foundation. The Importance of Palliative Care for Patients and Caregivers. Retrieved on March 3, 2018, from http://bit.ly/PalGuide
  5. National Policy Framework and Strategy on Palliative Care 2017 – 2022 http://bit.ly/PalCarePol

 

Social Media

  1. All patients have the right to #PalliativeCare immediately after they get their diagnosis #LetsTalkAboutCancer #RightToHealth http://bit.ly/PalCareToolkit
  2. It is a shocking fact, but children with cancer are the least likely to have access to #PalliativeCare. Almost half of the world’s children who live with cancer are in Africa, and they are not getting the pain relief they need #LetsTalkAboutCancer #RightToHealth http://bit.ly/PalCareToolkit
  3. #PalliativeCare for children needs to focus on the body, mind and spirit, as well as providing support for the family #LetsTalkAboutCancer #RightToHealth http://bit.ly/PalCareToolkit
  4. #PalliativeCare for children demands a multi-disiplinary approach. It is also important to provide support for the patient’s peers #LetsTalkAboutCancer #RightToHealth http://bit.ly/PalCareToolkit
  5. Remember, children are not small adults! They need #PalliativeCare that is designed for their life stage #LetsTalkAboutCancer #RightToHealth http://bit.ly/PalCareToolkit
  6. #PalliativeCare for children must take the cultural norms of the family into account #LetsTalkAboutCancer #RightToHealth http://bit.ly/PalCareToolkit
  7. #PalliativeCare increases survival rates. Supportive cancer treatment has been proved to extend the life of patients even in late stage cancer #LetsTalkAboutCancer #RightToHealth http://bit.ly/PalCareToolkit
  8. South Africa’s new National Policy Framework and Strategy for #PalliativeCare calls for more facilities for children #LetsTalkAboutCancer #RightToHealth http://bit.ly/PalCareToolkit
  9. South Africa’s new National Policy Framework and Strategy for #PalliativeCare calls for an end to futile treatment that sees children suffer unnecessarily due to paternalism amongst some treatment providers, especially those who struggle to accept deaths in childhood http://bit.ly/PalCareToolkit
  10. We need a trained, mutli-disciplinary health force who are able to meet the unique needs of children with cancer #PalliativeCare #LetsTalkAboutCancer #RightToHealth http://bit.ly/PalCareToolkit

 

Return to Palliative Care Policy Toolkit.