“It’ll Take a Miracle!” The role of the palliative care provider when engaging with a family’s hope for a miracle

Rachel Rusch, MSW, MA Division of Comfort and Palliative Care

Disclosures

I have no relationships with any industry pertaining to this presentation.

Objectives

Identify perceived challenges to working with a patient or family who are hoping for a miracle at end of life.

Appreciate the role of ‘hoping for a miracle’ throughout the disease

trajectory within familial and cultural systems. Describe strategies for engaging with families hoping for a miracle,

supporting medical decisions and optimal care while mitigating provider moral distress.

What is a miracle?

1 : an extraordinary event manifesting divine intervention in human affairs 2 : an extremely outstanding or unusual event, thing, or accomplishment 3 : a divinely natural phenomenon experienced humanly as the fulfillment of spiritual law

An event which must be extremely unusual or historically unprecedented from the perspective of

empirical scientific knowledge

Sulmasy, D. P. (2007). What Is a Miracle? Southern Medical Journal,100(12), 1223-1228.

Must evoke widespread wonder

Sulmasy, D. P. (2007). What Is a Miracle? Southern Medical Journal,100(12), 1223-1228.

Sulmasy, D. P. (2007). What Is a Miracle? Southern Medical Journal,100(12), 1223-1228.

Must be something freely given by God and not conjured

So what gives us pause...

Do they “get it?” We likely cannot provide what they are hoping for Are we preparing them well enough? Does hope for a miracle interfere with optimal care?

Why is this relevant for palliative care?

PC role is to understand the values and goals of the patient and family, and therefore help guide complex Medical Decision Making

Aid in defusing conflict with staff and

engage non-PC providers around such dialogue

Ferrell, B., Wittenberg, E., Battista, V., & Walker, G. (2016). Exploring the spiritual needs of families with seriously ill children. International Journal of Palliative Nursing,22(8), 388-394.

What makes kids different...

It can feel unnatural to consider a child at end-of-life Patient vs. family centered care Where does “best interests of the child” come into play and by whom?

The hope for a miracle when short term and long term prognosis is unclear

Meet babyboy “J”

Five-day-old baby boy prematurely born at 30 weeks complex internal anatomy Event in OR s/p to complications of hydrocephalus, large hemorrhage, PC consulted as no neurosurgical interventions were available.

Meet babyboy “J”

Five-day-old baby boy prematurely born at 30 weeks complex internal anatomy Event in OR s/p to complications of hydrocephalus, large hemorrhage, PC consulted as no neurosurgical interventions were available Family hoping for a miracle - Do they “get it”? Do they understand what might come when J is extubated?

Conversation tool

Affirm I hear your loving hopes for your child.

Meet

We are hoping with you.

Educate And I also want to talk with you about some of our worries for your child.

No matter what

Our team will walk this path with you.

Cooper, R. S., Ferguson, A., Bodurtha, J. N., & Smith, T. J. (2014). AMEN in Challenging Conversations: Bridging the Gap Between Faith, Hope, and Medicine. Journal of Oncology Practice,10(4).

Harbinger of Denial vs.

Prognostic Awareness

Role of Spiritual Care

Chaplain colleagues are expert in honoring journeys of faith and unique spiritual needs

Illuminate our own understanding of a case through their specialized

perspective Support providers in aiming to be spiritual generalists

Babyboy J Continued

The family had excellent prognostic awareness, sought guidance for possible funeral planning

Family was also hoping for a miracle - their child’s life was in God’s hands

Babyboy J Continued

The family had excellent prognostic awareness, sought guidance for possible funeral planning

Family was also hoping for a miracle - their child’s life was in God’s hands J was extubated and able to breathe on his own PC continued as an extra layer of support for future decision making, as J

has unknown neurologic impairment

Hope for a miracle at End-of-Life

Meet Babygirl D Two-month-old girl born at 26 weeks with chronic lung disease, renal failure,

and severe brain abnormalities Intubated since birth on high settings Rapid clinical decompensation including hemorrhage, perforated bowel,

gram negative bacteremia requiring pressor support

Meet Babygirl D Two-month-old girl born at 26 weeks with chronic lung disease, renal failure,

and severe brain abnormalities Intubated since birth on high settings. Rapid clinical decompensation including hemorrhage, perforated bowel,

gram negative bacteremia requiring pressor support PC consulted for goals of care and aid in decision making “This is going on too long”

Babygirl D Continued

Parents wanted to continue all interventions including mechanical ventilation on the oscillator and pressor support

Praying for a miracle after the loss of their first pregnancy at 16 weeks

gestation - holding distrust in the medical system They would “take her in whatever state she was in” and shared “we will

never unplug our child”

Staff moral distress

Time and high levels of medical support in situations that may seem therapeutically ineffective can cause moral distress

Does hoping for a miracle = suffering at end of life? Does prolonged time in navigating medical decisions = staff distress? Recognize the role of the consultant vs. bedside providers Hamric, A. B., & Blackhall, L. J. (2007). Nurse-physician perspectives on the care of dying patients in intensive care

units: Collaboration, moral distress, and ethical climate*. Critical Care Medicine,35(2), 422-429.

How can we mitigate distress?

Aim to be transparent in communication, especially over time Remain in communication with nursing and floor staff Support staff in exploring their own stress and concerns

Hamric, A. B., & Blackhall, L. J. (2007). Nurse-physician perspectives on the care of dying patients in intensive care units: Collaboration, moral distress, and ethical climate*. Critical Care Medicine,35(2), 422-429.

Things to avoid

Potential pitfalls

Trying to change the family’s mind by presenting more medical facts about how sick the patient is

Reflecting that miracles are rare Engaging in theological debate and leading prayer Reframing the miracle in a way that ignores the original sentiment

Some language we can use

“What would a miracle look like to you and your family?” “What I hear you saying is that you are worried for your child’s future while

also wanting to be able to hold your hope for their survival.” “Hope and worry can exist side by side.” “What else do you hope for?” “We hope too. And we are worried…”

Lo, B. et al (2002). Discussing Religious and Spiritual Issues at the End of Life: A Practical Guide for Physicians. Jama,287(6), 749.

What we did

Sat with the family, joined with them in their hope - reflected their hopes while expressing worry daily

Discussed the family’s fear that D was suffering Supported the staff who experienced significant moral distress around

performing chest compressions Contacted local clergy for support along with Spiritual Care

What we did

Sat with the family, joined with them in their hope - reflected their hopes while expressing worry daily

Discussed the family’s fear that D was suffering Supported the staff who experienced significant moral distress around

performing chest compressions Contacted local clergy for support along with Spiritual Care 20 days later the parents endorsed limits to resuscitation including DNR.

Pressors were discontinued and intubation maintained- D died in parents arms soon after

Final considerations

Parent and family perspective

Hope for cure is not associated with long-term traumatic grief or depression Faith and hope can be useful in creating meaning, providing comfort, and

aiding in decision making Giving accurate and honest information does not diminish hope Cultural iterations of this hope must be explored

Mack, J. W., & Smith, T. J. (2012). Reasons Why Physicians Do Not Have Discussions About Poor Prognosis, Why It Matters, and What Can Be Improved. Journal of Clinical Oncology,30(22), 2715-2717.

Bereavement

Engaging with a family’s hope for a miracle creates language for bereavement

Hope for a miracle can affect members in bereaved family systems

differently Early PC involvement can help create

longitudinal support

Hope for a miracle and prognostic awareness are not necessarily mutually exclusive

Using empathic communication, patience, and assessing understanding

can illuminate ways to support patients, families, and staff Familial and cultural hopes for a miracle vary as well as their role throughout

the disease trajectory and into bereavement

In summary

Acknowledgements

Julia McBee, CPNP Marsha Joselow, LICSW Nicholas Purol, LICSW Spiritual Care Team, BCH, CHLA

Comfort and Palliative Care Team, Children’s Hospital Los Angeles Pediatric Advanced Care Team, Boston Children’s Hospital

(and Pete)

References Brierley, J., Linthicum, J., & Petros, A. (2012). Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children? Journal of Medical Ethics,39(9), 573-577. Cooper, R. S., Ferguson, A., Bodurtha, J. N., & Smith, T. J. (2014). AMEN in Challenging Conversations: Bridging the Gaps Between Faith, Hope, and Medicine. Journal of Oncology Practice,10(4). Delisser, H. M. (2009). A Practical Approach to the Family That Expects a Miracle. Chest,135(6), 1643-1647. Duffin, J. (2015, September 5). Pondering Miracles, Medical and Religious. The New York Times . Retrieved from https://www.nytimes.com/2016/09/06/opinion/pondering-miracles-medical-and-religious.html?_r=0 Ferrell, B., Wittenberg, E., Battista, V., & Walker, G. (2016). Exploring the spiritual needs of families with seriously ill children. International Journal of Palliative Nursing,22(8), 388-394. Hamric, A. B., & Blackhall, L. J. (2007). Nurse-physician perspectives on the care of dying patients in intensive care units: Collaboration, moral distress, and ethical climate*. Critical Care Medicine,35(2), 422-429. Lo, B. et al (2002). Discussing Religious and Spiritual Issues at the End of Life: A Practical Guide for Physicians. Jama,287(6), 749.

References Mack, J. W., & Smith, T. J. (2012). Reasons Why Physicians Do Not Have Discussions About Poor Prognosis, Why It Matters, and What Can Be Improved. Journal of Clinical Oncology,30(22), 2715-2717. Orr, R. D. (2007). Responding to Patient Beliefs in Miracles. Southern Medical Journal,100(12), 1263-1267. Shirado, A., Morita, T., Akazawa, T., Miyashita, M., Sato, K., Tsuneto, S., & Shima, Y. (2013). Both Maintaining Hope and Preparing for Death: Effects of Physicians' and Nurses' Behaviors From Bereaved Family Members' Perspectives. Journal of Pain and Symptom Management,45(5), 848-858. Sulmasy, D. P. (2007). Distinguishing Denial From Authentic Faith in Miracles: A Clinical-Pastoral Approach. Southern Medical Journal,100(12), 1268-1272. Sulmasy, D. P. (2007). What Is a Miracle? Southern Medical Journal,100(12), 1223-1228. Van Der Geest, I. M., Van Den Heuvel-Eibrink, M. M., Falkenburg, N., Michiels, E. M., Van Vliet, L., Pieters, R., & Darlington, A. E. (2015). Parents' Faith and Hope during the Pediatric Palliative Phase and the Association with Long-Term Parental Adjustment. Journal of Palliative Medicine,18(5), 402-407. Zitter , J. (2015, October 21). Miracles Don't Come Cheap . The New York Times . Retrieved from https://opinionator.blogs.nytimes.com/2015/10/21/miracles-dont-come-cheap/?login=email

Thoughts? Questions? Discussion?

Thank you!