1. The Child or Adolescent with Life Threatening Illness: Caring for the Whole Family Paula K. Rauch MD Chief, Child Psychiatry Consultation Service Massachusetts General Hospital Boston, MA USA prauch@partners.org

2. Setting the Stage Every family has a story leading up to diagnosis that can help guide care Every family has a story leading up to diagnosis that can help guide care Recent? Sudden? Straight forward diagnosis? Recent? Sudden? Straight forward diagnosis? Your initial meeting is only a snapshot Your initial meeting is only a snapshot Every illness has its own natural history Every illness has its own natural history Cystic fibrosis Cystic fibrosis Osteogenic sarcoma Osteogenic sarcoma Diabetes Diabetes

3. The Family Every family member has a perspective Every family member has a perspective Parents Parents Parenting style Parenting style Couple relationship Couple relationship Siblings Siblings Age, stage, temperament Age, stage, temperament Health status Health status Affected child Affected child

4. Taking a History What is the hardest part right now? What is the hardest part right now? What is the hardest part for you personally? What is the hardest part for you personally? What is hard for others not living this experience to understand? What is hard for others not living this experience to understand? Who are you most worried about and why? Who are you most worried about and why? What has been talked about and with whom? What has been talked about and with whom? What words did you and others use? What words did you and others use?

5. Parent and Patient Expectations What are you hoping could happen today What are you hoping could happen today What hopes do you have for beyond today What hopes do you have for beyond today Who has been helpful so far Who has been helpful so far Who has really missed the mark Who has really missed the mark Self assessment: Self assessment: How do you (caregiver) assess your success How do you (caregiver) assess your success Are you realistic about your own limits Are you realistic about your own limits

6. Talking about Uncertainty Uncertainty is incredibly difficult Uncertainty is incredibly difficult Highlight the things that are known Highlight the things that are known Times of tests Times of tests Times when doctor will definitely not be present Times when doctor will definitely not be present Honest and hopeful Honest and hopeful Time when death is not yet expected Time when death is not yet expected Plan to make new plans as new data emerges Plan to make new plans as new data emerges What is being hoped for often evolves What is being hoped for often evolves Sometimes clinicians are ahead of families Sometimes clinicians are ahead of families

7. Making a Support Plan Bucket of ice story Bucket of ice story How can you be reached How can you be reached When should you be called When should you be called Be specific Be specific Our Thank you note experience Our Thank you note experience You answered when I called You answered when I called You saw me or my family member as a real person You saw me or my family member as a real person

8. Ways to Deepen a Conversation Switch the expected roles Switch the expected roles Ask a well person to talk about his/her end of life wishes Ask a well person to talk about his/her end of life wishes Ask what a doctor should be doing or saying Ask what a doctor should be doing or saying Ask what has been noticed Ask what has been noticed Starting a conversation about a bad prognosis can feel like hurting the child or parent Starting a conversation about a bad prognosis can feel like hurting the child or parent Picking up on what has been noticed already is easier Picking up on what has been noticed already is easier Begin by talking about others to create context Begin by talking about others to create context Virtual group: Some people do X and some prefer Y Virtual group: Some people do X and some prefer Y Talk about what makes this patient/family lucky Talk about what makes this patient/family lucky

9. Sharing Bad News Try to give difficult news in person Try to give difficult news in person Try to have the person receiving the news not be alone Try to have the person receiving the news not be alone Review what was known prior to this upcoming news and then what is known now Review what was known prior to this upcoming news and then what is known now Present the new plan and why Present the new plan and why The plan may be to take time to think The plan may be to take time to think No treatment does not mean no plan No treatment does not mean no plan

10. When You are Sharing Bad News Normalize that it is hard to think after hearing upsetting news Normalize that it is hard to think after hearing upsetting news Wait a few minutes for questions to be generated Wait a few minutes for questions to be generated Let the patent/family know that you expect they will have more questions later Let the patent/family know that you expect they will have more questions later Indicate how you can be reached and when youll be back Indicate how you can be reached and when youll be back Plan a call back or visit several hours later Plan a call back or visit several hours later

11. Sharing Bad News with Children Depending on the childs age, parents often hear first Depending on the childs age, parents often hear first Does the parent want to share the news with the clinician present Does the parent want to share the news with the clinician present Does the parent want the clinician to share the news with the parent present Does the parent want the clinician to share the news with the parent present Ask parents to share their worst fears about the telling and what they do NOT want to say Ask parents to share their worst fears about the telling and what they do NOT want to say

12. New Normal There may be a long time from learning about the diagnosis and prognosis until death There may be a long time from learning about the diagnosis and prognosis until death It is surprising how well so many families manage under these difficult circumstances It is surprising how well so many families manage under these difficult circumstances Model attention to the needs of each family member including the well siblings Model attention to the needs of each family member including the well siblings Talk about the challenge of making these children feel as well loved as the sick child Talk about the challenge of making these children feel as well loved as the sick child

13. Talk About Common Challenges Explain magical thinking and worries Explain magical thinking and worries Normalize having mixed feelings Normalize having mixed feelings Ask and talk with children: It is an error of kindness to think excluding children from conversations is protective Ask and talk with children: It is an error of kindness to think excluding children from conversations is protective Underscore for the patient and family that it takes time to adjust and readjust Underscore for the patient and family that it takes time to adjust and readjust Feelings often come in waves: jump with the waves Feelings often come in waves: jump with the waves

14. Individualized Communication Plans Who is talking to whom Who is talking to whom Often helpful to have an inside the family and outside the family person identified for each family member to talk with as needed Often helpful to have an inside the family and outside the family person identified for each family member to talk with as needed Family members are often protecting each other and this interferes with sharing all their thoughts and worries Family members are often protecting each other and this interferes with sharing all their thoughts and worries

15. Communication Beyond the Family Information shared cannot be taken back Information shared cannot be taken back Respect the ill childs wishes where possible Respect the ill childs wishes where possible Be sure the siblings know before their friends or cousins do Be sure the siblings know before their friends or cousins do Talk with school professionals Talk with school professionals Pay attention to the needs of well siblings Pay attention to the needs of well siblings Be cautious about well wishers who over-share Be cautious about well wishers who over-share

16. Specific Stories: Dying Child Worries Worries How will my parents recognize me without my body How will my parents recognize me without my body My mother will be too sad My mother will be too sad Disappointments Disappointments Disney rides: I was too short Disney rides: I was too short I wanted to own many cars I wanted to own many cars Legacy Legacy CDs, Websites, etc CDs, Websites, etc

17. Parent Stories: Dying Child Worries Worries How will I be able to love my other children How will I be able to love my other children My spouse and I cope so differently My spouse and I cope so differently Scandinavian data: Talking about death Scandinavian data: Talking about death Painful moments Painful moments Today my child has been dead as long as alive Today my child has been dead as long as alive Resentment about accusations of false hope Resentment about accusations of false hope Traumatic loss: Every year is the same Traumatic loss: Every year is the same Legacy Legacy Touched so many lives Touched so many lives

18. Sibling Stories Bone marrow transplant: I thought my parents decided it was my turn to give my marrow to my sister and likely die Bone marrow transplant: I thought my parents decided it was my turn to give my marrow to my sister and likely die My sisters CF was so much worse than mine that I felt guilty asking for any attention My sisters CF was so much worse than mine that I felt guilty asking for any attention I never really forgave my sister for not being around when my brother got really sick. He was so mad at her. They both had CF and I do not. I never really forgave my sister for not being around when my brother got really sick. He was so mad at her. They both had CF and I do not. My brother was the really good kid. I was sure my parents wished it were me who died My brother was the really good kid. I was sure my parents wished it were me who died

19. Funerals and Memorial Services Presence of medical professionals important Presence of medical professionals important Having a policy and plan can be helpful Having a policy and plan can be helpful Bereavement rounds for the clinicians Bereavement rounds for the clinicians Cards or visits as follow up with the family Cards or visits as follow up with the family Some memorial requests may be difficult to fulfill Some memorial requests may be difficult to fulfill Surviving clinic/inpatient friends will hear and react Surviving clinic/inpatient friends will hear and react

20. Lessons Learned Recognize the different experiences and perspectives in the family Recognize the different experiences and perspectives in the family Make clear plans about your availability Make clear plans about your availability Facilitate communications within the family and with key others Facilitate communications within the family and with key others Model that it is normal to have mixed feelings Model that it is normal to have mixed feelings Support and normalize different coping styles Support and normalize different coping styles Be aware of your own emotions Be aware of your own emotions

21. Final Thoughts Legacy Legacy No one wants their legacy to be destructive to their family: Use this to heal ruptures No one wants their legacy to be destructive to their family: Use this to heal ruptures No parent wants their surviving children to feel unloved: Hardest challenge No parent wants their surviving children to feel unloved: Hardest challenge Definition of Psychological Health Definition of Psychological Health