The Child or Adolescent with Life Threatening Illness: Caring for the Whole Family

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 • Recent? Sudden? Straight forward diagnosis? • Your initial meeting is only a “snapshot” • Every illness has its own natural history • Cystic fibrosis • Osteogenic sarcoma • Diabetes

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

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

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

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

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

8. Ways to Deepen a Conversation • Switch the expected roles • Ask a well person to talk about his/her end of life wishes • Ask what a doctor should be doing or saying • Ask what has been noticed • 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 • Begin by talking about others to create context • Virtual group: Some people do X and some prefer Y • Talk about what makes this patient/family lucky

9. Sharing Bad News • Try to give difficult news in person • 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 • Present the new plan and why • The plan may be to take time to think • 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 • Wait a few minutes for questions to be generated • Let the patent/family know that you expect they will have more questions later • Indicate how you can be reached and when you’ll be back • Plan a call back or visit several hours later

11. Sharing Bad News with Children • Depending on the child’s age, parents often hear first • 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 • 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 • 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 • 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 • Normalize having mixed feelings • 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 • Feelings often come in waves: jump with the waves

14. Individualized Communication Plans • 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 • 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 • Respect the ill child’s wishes where possible • Be sure the siblings know before their friends or cousins do • Talk with school professionals • Pay attention to the needs of well siblings • Be cautious about well wishers who “over-share”

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

17. Parent Stories: Dying Child • Worries • How will I be able to love my other children • My spouse and I cope so differently • Scandinavian data: Talking about death • Painful moments • Today my child has been dead as long as alive • Resentment about accusations of “false” hope • Traumatic loss: Every year is the same • Legacy • 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 • My sister’s 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. • 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 • Having a policy and plan can be helpful • Bereavement rounds for the clinicians • Cards or visits as follow up with the family • Some memorial requests may be difficult to fulfill • Surviving clinic/inpatient friends will hear and react

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

21. Final Thoughts • Legacy • 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 • Definition of Psychological Health