1. End of Life Care for Pediatric Residents During PICU Rotation: Emphasis on Improving Competence in Communication Skills : Session II

2. Handouts End-of-Life Interview Guidelines End-of-Life Interview Guidelines End-of-Life Family Interview- Six Step Protocol End-of-Life Family Interview- Six Step Protocol

3. Conceal most things from the patient while you are attending to him. Give necessary orders with cheerfulness and serenity…revealing nothing of the patient’s future or present condition. For many patients…have taken a turn for the worst…by forecast of what is to come. Conceal most things from the patient while you are attending to him. Give necessary orders with cheerfulness and serenity…revealing nothing of the patient’s future or present condition. For many patients…have taken a turn for the worst…by forecast of what is to come.Hippocrates Historyof Paternalism / Protecting the Patient History of Paternalism / Protecting the Patient

4. It is clear from research conducted with family members that there is more at stake here than the addition of behavioral skills to the practitioner’s repertoire. There are times when children and family members need a sense from their professional caregivers that their suffering is acknowledged and, at moments, shared. At other times, they need from their practitioners the capacity to step out of a narrowly defined professional role to reveal a more “human” side. It is clear from research conducted with family members that there is more at stake here than the addition of behavioral skills to the practitioner’s repertoire. There are times when children and family members need a sense from their professional caregivers that their suffering is acknowledged and, at moments, shared. At other times, they need from their practitioners the capacity to step out of a narrowly defined professional role to reveal a more “human” side. Browning, 2003 Browning, 2003 Showing Humanness

5. ABCDE Communication Model A = Advance preparation A = Advance preparation B = Build a therapeutic environment and relationship B = Build a therapeutic environment and relationship C = Communicate well C = Communicate well D = Deal with patient and family reactions D = Deal with patient and family reactions E = Encourage and validate emotions E = Encourage and validate emotions Rabow and McPhee, 1999 Rabow and McPhee, 1999

6. Buckman’s 6-Step Protocol Start off well Start off well Find out how much the patient knows Find out how much the patient knows Find out how much the patient wants to know Find out how much the patient wants to know Share the information (aligning and educating) Share the information (aligning and educating) Respond to the patient’s feelings Respond to the patient’s feelings Planning and follow through Planning and follow through Buckman, 1992 Buckman, 1992

7. Experts in End-of-Life Care... Spend nearly twice as much time with patients Spend nearly twice as much time with patients Less verbally “dominant” Less verbally “dominant” Less treatment and biomedical issues discussed Less treatment and biomedical issues discussed More psychosocial and lifestyle discussion More psychosocial and lifestyle discussion Roter et al., 2000 Roter et al., 2000

8. Transitioning to Palliative Care Possibility of death should be addressed at diagnosis with goal of cure in most cases Possibility of death should be addressed at diagnosis with goal of cure in most cases As the treatment goal becomes palliative care the focus of hope changes As the treatment goal becomes palliative care the focus of hope changes Curative Focus Bereavement Palliative Focus

9. Acknowledging Parental Anguish Acknowledge with statements such as: “This must be very difficult for you.” “This must be very difficult for you.” “This must be a parent’s worst nightmare.” “This must be a parent’s worst nightmare.” “I can see that your hearts are broken.” “I can see that your hearts are broken.” Avoid statements such as: “I know how you feel.” “I know how you feel.”

10. “Is it okay to show my emotions?” Most families view a clinician’s show of emotion in a positive light Most families view a clinician’s show of emotion in a positive light Clinician emotions are often interpreted as a sign of caring by families Clinician emotions are often interpreted as a sign of caring by families The doctors and nurses who allowed themselves to show their genuine emotions helped me the most. The doctors and nurses who allowed themselves to show their genuine emotions helped me the most. - Parent of child in the ICU, Meyer et al., 2002 Monitor and pace yourself Monitor and pace yourself Seek opportunities to process and understand your own emotions Seek opportunities to process and understand your own emotions

11. “People who acknowledge their helplessness become helpful!” Don’t be afraid to acknowledge your helplessness to the dying person or family members. Don’t be afraid to acknowledge your helplessness to the dying person or family members. It is okay to do/say nothing. It is okay to do/say nothing. “Be slow to speak and swift to hear!” “Be slow to speak and swift to hear!” Alan D. Wolfelt, Ph.D.

12. Hoping for the best, while preparing for the worst Although it may seem contradictory, hoping for the best while at the same time preparing for the worst is a useful strategy....By acknowledging all possible outcomes, patients and their physicians can expand their medical focus to include disease-modifying and symptomatic treatments and attend to underlying psychological, spiritual, and existential issues. Back et al., 2003

13. Making time available, finding a quiet place to talk, maintaining eye contact, sitting instead of standing, learning to be empathic. All of these are important tools in the complicated and challenging endeavor of communicating well with children and families at the end of a child’s life. But our tools will only do their job well if we understand and embrace the relational context in which we use them. Making time available, finding a quiet place to talk, maintaining eye contact, sitting instead of standing, learning to be empathic. All of these are important tools in the complicated and challenging endeavor of communicating well with children and families at the end of a child’s life. But our tools will only do their job well if we understand and embrace the relational context in which we use them. Browning, 2003 Browning, 2003 The Relational Context

14. Adopting a collaborative relational stance Clinical practice in pediatric palliative care is fundamentally relational. Clinical practice in pediatric palliative care is fundamentally relational. It involves a “two-way” rather than “one-way” relationship with child and family. It involves a “two-way” rather than “one-way” relationship with child and family. Engaged practitioners must be capable of moving fluidly between the position of “expert” and the position of “learner.” Engaged practitioners must be capable of moving fluidly between the position of “expert” and the position of “learner.” Children and families are regarded as experts in regard to their own experience. Children and families are regarded as experts in regard to their own experience.

15. “What does all of this really mean?” Can the caregiver make sense of the medical info they are given enough to translate it into relative terms? (Persistent vegetative state means they will never walk, talk or play but they could breathe on their own.) Can the caregiver make sense of the medical info they are given enough to translate it into relative terms? (Persistent vegetative state means they will never walk, talk or play but they could breathe on their own.) Ask the family to define their meaning of “better” Ask the family to define their meaning of “better”

16. Enter into what someone thinks and feels without trying to change what they think and feel! Alan D. Wolfelt, Ph.D.

17. Summary of the Healthcare Provider’s Role We are a vital link in the chain to a family’s ability to understand and cope We are a vital link in the chain to a family’s ability to understand and cope We need to first understand what our feelings are We need to first understand what our feelings are – then get a feel for where the family is in the grieving process and what their needs are –maximize all available resources –respect cultural and socio-economic differences –allow them to go through all stages of grieving –be supportive, not judgmental

18. Goals of Medicine TO CURE TO HEAL DISEASEInvestigationDiagnosisTreatmentPERSON Restore wholeness Relief of Suffering Improve Quality of Life

19. Parental Reactions 1. Type of reaction (typical/atypical) 2. Our Automatic Thoughts 3. Possible Reasons for Reaction 4. Our Responses to Reaction

20. Palliative Medicine: Bridging the Gap Palliative Care MEDICINE SCIENCEART Spirituality (RELIGION)

21. Withdrawal of Support The parents need to be reassured that The parents need to be reassured that –they have made the right decision (support) –their child will remain comfortable –the family is allowed adequate time with the patient –the staff help facilitate “letting go” –being present is important if they want that

22. Withdrawal of Support Allow the family the option to be present (or not) during and/or after the withdrawal process Allow the family the option to be present (or not) during and/or after the withdrawal process It is sometimes difficult to be supportive and non-judgmental It is sometimes difficult to be supportive and non-judgmental Be an active listener to get a sense of what their needs are Be an active listener to get a sense of what their needs are –If you’re not sure, it is appropriate to ask

23. Goals of Difficult Conversations The goal is not to convince a family of what we believe should be done, but to align, educate and support their decision, knowing that they have all of the information needed in order to make the right decision for the patient and themselves. The goal is not to convince a family of what we believe should be done, but to align, educate and support their decision, knowing that they have all of the information needed in order to make the right decision for the patient and themselves. Our role becomes that of an advocate; and when we offer options of care (DNR, comfort care, etc.), we need to respect whichever choice the family makes and support it without judgment. Our role becomes that of an advocate; and when we offer options of care (DNR, comfort care, etc.), we need to respect whichever choice the family makes and support it without judgment.

24. Good End-of –Life Care You can say your patient was given good end-of-life care if: You can say your patient was given good end-of-life care if: –The patient was kept pain-free and adequately sedated –The patient was allowed to die in comfort and with dignity –The family feels confident that they received clear and accurate prognoses

25. “Find joy in the experience.” experience.” Javier R. Kane, MD