Responding to Requests for Miracles

Transcription

1 Responding to Requests for Miracles September 16, :15-9:15 am Anna Lee Hisey Pierson, Karen Pugliese, Nancy Waite

2 The miracle is not that we do this work, but that we are happy to do it. Mother Teresa 2

3 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 3

4 1. Introduction OUTLINE 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 4

5 Doctor, you just keep doing everything for her.. God will heal her. We believe a miracle will happen. 5

6 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. 6

7 ROLE PLAY You just keep taking care of her God will heal her. 7

8 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. 8

9 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. 9

10 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. 10

11 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. 11

12 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. 12

13 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. 13

14 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. 14

15 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

16 PURPOSE AMEN PROTOCOL 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 16

17 CHALLENGES AMEN PROTOCOL 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 17

18 A = Affirm M = Meet AMEN GOAL: Continued Engagement Not Acquiescence or Total Agreement ( I am hopeful too. ) ( 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. 18

19 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 19

20 A = Affirm REPRISE ROLE PLAY ( 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. 20

21 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. 21

22 QUESTIONS 22

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