Frequently Asked Questions

Donna Armstrong
darmstrong@hospicebg.org

David Sine
midinhir@aol.com

Welcome to the section of the newsletter where our goal is to print questions we%27ve received from our readers or colleagues related to our theme.  We enjoy the opportunity to hear from you and share your questions.  Certainly if one of our colleagues has a question related to a particular topic or concern we know that many others do also.  Please send us any questions you have regarding pediatric palliative care and we%27ll be sure to respond in writing.  We are particularly interested in hearing from different members of the interdisciplinary team. Looking forward to hearing from you!

How much information should siblings be given about a dying child?
Siblings should be given developmentally appropriate information about disease progression and death.  Don%27t over explain. Simple facts in a few words can be most helpful.  Avoid euphemisms and use correct medical terms.  For example: Lucy%27s cancer has gotten worse.  She can%27t walk or eat anymore.  Her body is slowing down and she will die soon.  

Who on the team should work with the sibling?   Should it be the same person during the illness and the bereavement process? 
Hospice and palliative care programs have approached this in different ways.  Sometimes it may be the social worker or the child life specialist who works with the sibling.  Sometimes a volunteer may be assigned to act as a sibling companion.    It may even be the chaplain who develops a special bond with the sibling as the sibling has many spiritual questions. It may not matter so much whom the individual is as long as siblings feels they have their own “special “person.  As the majority of the attention is focused on the sick child it is important to address the needs of siblings and make them feel that they have someone who is there for them.  It has also been helpful to have the person who works with them during the illness be present during the bereavement process.  The grieving sibling does not need the loss compounded by the loss of their special person as well.    

What should palliative care team members do when asked to break the news of the child%27s death to the sibling?
Team members can coach the family on how to explain the death in developmentally appropriate language.  Families may request that a team member be present as they do this for support.

Who should be present when a child dies?   Should siblings, especially younger children be present?
Children should be given the opportunity to be present.   They should be prepared as to what the sick child will look like and then allow them to make that choice.  The sibling may also be offered opportunities to assist in the care of the sick child.

What length of time should bereavement follow-up be for the loss of a sibling?
Again this may vary based on the needs of individuals.  Many Hospice and Palliative care programs expand the bereavement follow-up offered to families from one year to two to three years.

How can volunteers be used with siblings?
Volunteers may be assigned to siblings as companions during the illness and during bereavement.  They cannot take the place of their parents but can be a positive adult influence in their life.