Tuesday, January 14, 2014

What is Palliative Care for Children?

You may be wondering exactly what is palliative care for children?  The majority of people don't know what palliative care is.  Often the first or only experience that a person has with palliative care is when a family member with cancer is dying.  

Palliative care for children can be quite different.  The New Yorker published an excellent article about palliative care for children this week!  You can read the first page here:, and if you would like a copy of the whole article, please email me.


First a definition: (from the World Health Organization in 2002)

  • Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family.
  • It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.
  • Palliative care seeks to alleviate the child's physical, psychological, and social distress.
  • Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.
  • It can be provided in tertiary care facilities, in community health centres and even in children's homes.
So as you can see palliative care is really a specific type of approach to caring for someone. It sees them in the context of their whole life situation and tries to address all of their needs. This approach can be quite different from the care a patient receives in the rest of the field of medicine; care is often very focused on eradicating or controlling a particular disease.  Palliative care can be given at the same time as attempts at curative treatment.  You don't have to stop curative therapy to start palliative care.

You don't have to stop curative therapy to start palliative care.  Instead they can proceed together.  We often say that we are "hoping for the best, but planning for the worst."

Palliative care is best delivered by an inter-disciplinary team.  This team can include nurses, physicians, social workers, psychologists, child life specialists, chaplains, art/music/recreation therapists, and volunteers. The team works together to address all of the needs of the child and family.

What about the term "hospice"?  It is often used synonymously with palliative care, but the definition differs in different countries.  In Canada and Europe, hospice refers to a free standing building where patients with life limiting diseases can stay and receive palliative care.

In the USA, hospice refers to a specific Medicare (government funded) health benefit which involves receiving terminal care in the community (in the home or a hospice). The hospice program is limited to the last 6 months of a person's life.

End of life care (Terminal care) is not the same as palliative care.  End of life care refers to providing care when it is clear that a person is quite close to dying, generally in the last weeks or days of their life.

Which children need palliative care?  Children with life-threatening or life-limiting diseases will benefit from palliative care.  A life-threatening illness is a disease where cure may not be possible, most cancers are in this category.  Life-limiting illness is a disease where there is no realistic possibility of cure, and the child is not likely to life into adulthood due to the disease or its complications.  Duschenne muscular dystrophy and other genetic diseases are examples.  Most of the diseases in this category are very rare and most people are not familiar with them.

When should palliative care start?  The American Academy of Pediatrics recommends that Palliative Care start when a child is diagnosed with a life threatening or life-limiting illness, the involvement of the palliative care team will increase as the child becomes more unwell and has more symptoms.  Surveys of families whose children have died show that families prefer an early referral to the palliative care team as the feel that their child's quality of life is improved as a result.

This shows how the palliative aspects of care should increase as the child's illness progresses.

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