Responding to Requests

for Miracles

September 16, 2016

8:15-9:15 am

Anna Lee Hisey Pierson, Karen Pugliese, Nancy Waite

The miracle is not

that we do this work,

but that we are happy to do it.

Mother Teresa

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OBJECTIVES

Following this session, learners will be able to:

1. Recognize the feelings that are evoked for them when

palliative care patients and/or their families express

religiously-based requests for continued curative care

2. Use the AMEN protocol to engage effectively with

palliative care patients and/or their families who

express religiously-based requests for continued

curative care

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OUTLINE

1. Introduction

2. Role Play: “You just keep taking care of her….

God will heal her”

3. Review of AMEN Protocol

4. Reprise Role Play

5. Q & A

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Doctor, you just keep doing everything

for her….. God will heal her.

We believe a miracle will happen.

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QUESTION

What emotions arise for you when a patient/family refuses

comfort care; when you know the treatment is futile?

What emotions arise when a family remarks:

"We will get a miracle.”

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ROLE PLAY

“You just keep taking care of her…

God will heal her.”

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The Case of Mrs. A

The patient, Mrs. A, is 70 years old. She has suffered a

massive stroke, likely due to being anticoagulated secondary

to a recent pulmonary embolism, which in turn was likely

due to her widely metastatic ovarian cancer.

A family meeting has been called.

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Present at the meeting are:

the patient’s husband (Mr. A)

two grown daughters (T and J)

the Palliative Care Physician (Dr. B)

the Palliative Care Advanced Practice Nurse/APN (G)

Dr. B wants to recommend that Mrs. A be transitioned to

comfort care, with a compassionate extubation. Mrs. A’s

family is resistant to this recommendation however, stating

that they believe that God will provide a miracle and heal her.

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The following is the largest part of the interaction

between Mrs. A’s family and the medical team:

Dr. B: Based on the severity of Mrs. A’s condition, we’re

recommending that your wife and mother transition now to

comfort care, with compassionate extubation.

Mr. A: We appreciate everything you’ve been doing, but we

are people of faith and we know that God will heal her.

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Dr. B: How do you define healing?

T: She will walk out of here healed of her cancer

and back to the person God wants her to be.

Dr. B: What can you tell me about her medical problems?

J: We know what you all think, but you are not God!

You just keep taking care of her, don’t you stop a thing.

God will heal her.

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Dr. B: I want to explain again how sick she is and that,

despite all our efforts, she has not improved.

Mr. A: We know she’s very sick, but God has stronger

healing powers. As doctors, you can only give us your human

perspective, but with God all things are possible. He will

answer our prayers and work a miracle.

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G: It is very important for us to explain that the severity of Mrs. A’s medical condition will prevent her from leaving the ICU, and therefore, the hospital. We think you need to consider what her quality of life will look like in this instance.

J: What do you mean by quality of life? What will her quality of life look like when you take her off the machines and she’s dead?

Dr. B: From our experience, we haven’t seen anyone make a meaningful recovery after being in this critical condition. We strongly urge you to face the reality of this situation.

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At this point Mrs. A’s family members glare at the physician

and the APN but they say nothing.

Dr. B: Maybe the miracle is not Mrs. A’s recovery but instead

that she be with her God, the God she believes in.

T: We’re asking that you do everything for our mother,

don’t stop a thing. God is going to heal her.

G: We can see that your faith is very important to you.

Would you like to see our chaplain?

Mr. A: We have our own pastor, and he believes like we

believe, so we don’t need any more support.

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AMEN PROTOCOL

AMEN in Challenging Conversations:

Bridging the Gaps Between Faith, Hope, and Medicine

Cooper, Rhonda, M.Div., BCC, Ferguson, Anna, RN, BSN, Bodurtha, Joann, MD, MPH, Smith, Thomas, MD, FACP, FASCO, FAAHPM. AMEN in Challenging Conversations: Bridging the Gaps Between Faith, Hope, and Medicine. Journal of Oncology Practice, July 2014 vol.10, no.4, p. 191-198

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AMEN PROTOCOL

PURPOSE

Help providers remain engaged during challenging conversations

involving religious beliefs, particularly when the prognosis is

poor

Preserve hope, dignity, and faith while presenting medical

issues in a non-confrontational and helpful way

Assure patients/families that the Medical Team is committed to

the patient regardless of the medical outcome

Provide a “meeting place” between providers and

patients/families; between what is possible and what is

probable

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AMEN PROTOCOL

CHALLENGES

Decisions are emotional and often rooted in values, personalities,

thought processes, family dynamics, priorities and beliefs

Providers’ emotional and psychological make-up is a factor in

communication

Despite strategies to discuss alternatives, when beliefs are not

“shared” misunderstanding and resistance will likely increase

Patients/families may feel unheard, anxious, disconnected at the

level of their utmost concern (mortality and meaning)

“Buy-in” – patients/families sense manipulation and may become

more resistant

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AMEN GOAL: Continued Engagement

Not Acquiescence or Total Agreement

A = Affirm (“I am hopeful too.”)

M = Meet (“I join you in hoping [or praying] for a miracle.”)

E = Educate (“I want to speak about some medical issues.”)

N = No Matter What (“I will be with you every step of the way.”)

Providers stay within their professional Scope of Practice rather than

unintentionally placing themselves in direct competition with God.

HOPE (rather than religious belief) is the most appropriate frame

for a miracle conversation.

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AMEN: Evaluating Effectiveness

CONSIDERATIONS

The Protocol is not a “quick fix”

The Success Standard: Agreement OR Deepening trust and engagement?

Providers as Incrementalists vs Perfectionists

“God’s Role” and the Provider’s Role

“And” aligns, opens dialogue, re-frames HOPE as common ground

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REPRISE ROLE PLAY A = Affirm (“I am hopeful too.”)

Dr. B: I want to explain again how sick she is and that,

despite all our efforts, she has not improved.

M = Meet (“I join you in hoping [or praying] for a miracle.”)

G: It is very important for us to explain that the severity of

Mrs. A’s medical condition will prevent her from leaving the ICU,

and therefore, the hospital. We think you need to consider what

her quality of life will look like in this instance.

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REPRISE ROLE PLAY

E = Educate (“I want to speak about some medical issues.”)

Dr. B: From our experience, we haven’t seen anyone make a meaningful recovery after being in this critical condition. We strongly urge you to face the reality of this situation.

N = No Matter What (“I will be with you every step of the way.”)

Dr. B: Based on the severity of Mrs. A’s condition, we’re recommending that your wife and mother transition now to comfort care, with compassionate extubation.

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QUESTIONS

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