What IS palliative care?

I have a single purpose in this post.  That is, I would like to clarify the difference between hospice care and palliative care.  It is a very important distinction, but one that has evolved over the past several years and one that deserves clarification for healthcare providers as well as patients, families and future patients and families. 


Before we can talk about palliative care, I think we should define hospice care. I found the following definition on the NHPCO website: 
http://www.nhpco.org/i4a/pages/index.cfm?pageid=3285

The term “hospice” (from the same linguistic root as “hospitality”) can be traced back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey.  The name was first applied to specialized care for dying patients in 1967 by physician Dame Cicely Saunders.

Key to the definition of hospice, then,  is the reference to "specialized care for dying patients".  Hospice focuses on controlling symptoms in the person who is dying.  Hospice is about dying well.

Palliative care, on the other hand, is all about providing care to help seriously ill people live the kind and quality of life that they desire.  Palliative care is about living well.

Let me provide an example.

John is a 16-year-old with cystic fibrosis.  Throughout his life, John has been adherent to his medication regimen and breathing treatments.  He has played baseball, soccer and basketball throughout his schoo(l years, and has never been hospitalized - until now.  John is admitted for a CF exacerbation and pneumonia.  And, he is terrified.  He clearly states that he does not want to be in the hospital; that he is worried about falling behind in school; he misses his friends; he has a worked parttime to raise the necessary money to go on his youth group mission trip this summer.

John needs more than antibiotics and breathing treatments - he needs a variety of types of care.  He needs excellent medical care to ensure that he recovers from the pneumonia.  But John needs more than that.  He needs care that addresses his psychological, social and spiritual needs.  He needs to stay connected at school, with his friends and with his youth group.  

John needs palliative care. 

He needs support to ensure that he has the quality of life that he has had up to this point, and that he wants going into the future.  John's healthcare team and those who care for him in his natural environment  (teachers, friends, coaches, youth pastor, etc.) need to team and work together to determine how to keep the quality in his life.

That's what we do at KU Kids Healing Place.  We help keep the quality in the life of a kid.  In my next post, I will tell you how we do it.

Quality of life.... throughout illness.... for weeks, months, years.  Palliative care ....it is all about living well.