Hope Never Leaves :Hope Never Leaves The Art of Good Communication, Telling Bad News, and Finding Hope in Any Situation Gary Allegretta, MD Medical Director The Jason Program


Why Should We Care? :Why Should We Care? The answer is easy, if you take it logically” --- Paul Simon


Outline :Outline The Basics of Good Communication The 4 E’s The Importance of Patients’ Expectations The “CLASS” System of Techniques Techniques for Telling Bad News Remember – Hope Never Leaves


Communication Basics - The Four E’s :Communication Basics - The Four E’s Engage the Patient Empathy Educate Enlist the Patient in His Own Care


Engaging the Patient :Engaging the Patient Purpose: Make contact; Join the patient Step 1: Find the Patient’s Agenda Let the Patient Talk Uninterrupted Beckman & Frankel, 1984 -- Doctors interrupt after 18 seconds Patients talk no more than 2 minutes Step 2: Set the Meeting Agenda


Empathy :Empathy This is the Primary Skill to Master How Does This Feel? - Empathy Video The Empathetic Response


The Empathic Response :The Empathic Response A verbal technique that acknowledges you have heard the patient’s emotional content. No requirement to feel the emotion. Steps: Identify the emotion – open-ended questions Identify its cause Respond in a way that shows you understand the connection between 1 and 2 Why is this important? Validation


Educate :Educate Why - Compliance Exists in only50% of cases (Butler & Rollnick, 1996) Patient’s perceived need is the primary factor How – Assess Understanding Assume Questions – Why? Assure Understanding – How? Create Any Useful Plan of Action


Enlist :Enlist Engage the patient in his own health care: Decision-Making Adherence to Plan Why do you think this is important? Techniques discussed in the CLASS section


Expectations :Expectations Assess & Understand Condition Treatment Outcome Educate Where Necessary Hope vs. Expectations


Techniques - The CLASS System :Techniques - The CLASS System Context (Physical Setting) Listening Skills Acknowledgement Strategy Summary


Techniques - CLASS :Techniques - CLASS CLASS System Context Listening Skills Acknowledgement Strategy Summary Context (Proxemics) Privacy Eye Level - Even Personal Space – 2’ Body Language Relaxed Eye Contact


Office Context - Bad :Office Context - Bad


Office Context - Good :Office Context - Good


Office Context - Good :Office Context - Good


Office Context – Support People :Office Context – Support People Support Person Patient


Office Context – oops! :Office Context – oops!


Bedside Context - Bad :Bedside Context - Bad


Bedside Context - Good :Bedside Context - Good


Context - Review :Context - Review Space - Ensure Privacy & Comfort Sit while talking Your eyes at patient’s eye level About 2 feet of unobstructed space Tissues Available Relatives Seated next to patient Body Language & Eye Contact Look relaxed Maintain eye contact as appropriate


Slide 21:Techniques - CLASS CLASS System Context Listening Skills Acknowledgement Strategy Summary Listening Skills Open Questions Facilitating Clarifying Time & Interruptions


Open - Ended Questions :Open - Ended Questions Questions that have many answers Closed questions have a specific answer Examples: How are you? How’s life these days? Serve as an invitation Beware – Patient may ramble awhile


Facilitating :Facilitating Sending an “I’m with you” message May encourage development of hope Simple gestures or phrases: Nodding, smiling “Tell me more” Uh-huh Pausing appropriately Repeating a keyword the patient uses


Clarifying :Clarifying Know exactly what the patient is saying Examples: “Let me see if I’ve got this straight…” “So what you’re saying is…” “Do you mean ____ or ___ ?” Use a social worker or other facilitator


Time & Interruptions :Time & Interruptions Acknowledge that the patient is primary Pages & phone calls: defer or avoid Clarify time constraints Plan a continuation of the discussion


Slide 26:Techniques - CLASS CLASS System Context Listening Skills Acknowledgement Strategy Summary Acknowledgement The Empathic Response Touch Normalize


Touch :Touch May be a very important part of your non-verbal communication skills. Helps the patient feel less isolated Two rules: Only touch a neutral area (hand or forearm) Touch briefly, and see if the patient appreciates it


Normalizing :Normalizing Tell the patient that his response is appropriate and normal Summary Example


Slide 29:Techniques - CLASS CLASS System Context Listening Skills Acknowledgement Strategy Summary Strategy The Management Plan


Principles :Principles A reasonable plan the patient will follow is better than an ideal plan the patient will ignore. Any plan is far better than no plan.


Creating the Plan :Creating the Plan Think what is best medically Assess the whole patient Propose a strategy Assess the patient’s response & modify accordingly


Slide 32:Techniques - CLASS CLASS System Context Listening Skills Acknowledgement Strategy Summary Summary Obtain closure Move forward


Summary :Summary Summarize main points Any urgent questions? Plan next contact: Time Setting


Breaking Bad News :Breaking Bad News From “How to Break Bad News”, by Robert Buckman, MD, 1992 Should we tell the truth? The Six Step Plan


Breaking Bad News :Breaking Bad News From “How to Break Bad News”, by Robert Buckman, MD, 1992 Definition Why this topic is important Should we tell the truth? The 6-Step Plan


What is “Bad News”? :What is “Bad News”? Bad news is any information whose consequences are worse than the patient’s expectations.


Why Is This Topic Important? :Why Is This Topic Important? Case History, North American, late 1970’s - Mark.L. 50 y.o. male, prostate biopsy, 2 bed room Senior surgeon arrives, stands by the door, speaking to both Mark and the patient in the bed next to him. He tells the other man that he can go home because his biopsy showed benign hypertrophy. He then turns to Mark and says, “...you can also go home, but there’s bad news as well -- the biopsy showed cancer....” The physician then leaves without further discussion. Mark later said that compared to all the subsequent difficulties, nothing left him so distraught and with so little idea of how to cope.


Should We Tell the Truth? :Should We Tell the Truth? 1672 -- Samuel de Sorbiere: Truth is a good idea that won’t catch on. 1960’s -- 90% of MDs preferred not to inform their patients of a diagnosis of cancer. Methods of deceit were published. Truth destroys hope. 1980’s --50-97% of pts want to know the truth. Now --Patients have absolute rights to their medical information. Physician practices have changed. How to tell is the debate.


The Six-Step Plan :The Six-Step Plan Getting Started Understand the Patient’s Understanding Understand What the Patient Wants to Know Sharing the Information Responding to the Patient’s Feelings Planning & Follow-Up


I: Getting Started :I: Getting Started Physical Context Not by phone Who should be there Teamwork Engaging the Patient Listen Avoid “Medspeak”


II: Understand the Patient’s Understanding :II: Understand the Patient’s Understanding The impact of the illness on his future The emotional impact of the illness The basic biological facts


III: What Does the Patient Want to Know? :III: What Does the Patient Want to Know? Ask this question explicitly: More distress occurs by not discussing issues 75-97% of patients want to know Uncertainty is worse than knowing Do not judge the response. Finalize the plan: Either: A) Go to Step 4 (Educate the Patient) B) Arrange for follow-up


IV: Share the Information - Educate :IV: Share the Information - Educate How – Assess Understanding Assume Questions – “The elephant” Assure Understanding


V: Respond to the Patient’s Feelings - Empathy :V: Respond to the Patient’s Feelings - Empathy Steps: Identify the emotion – open-ended questions Identify its cause Respond in a way that shows you understand the connection between 1 and 2


VI: Planning :VI: Planning A reasonable plan the patient will follow is better than an ideal plan the patient will ignore. Any plan is far better than no plan.


Hope Never Leaves :Hope Never Leaves What is Hope? Why Hope is Important Helping Your Patients


Definition :Definition To look forward to with confidence or expectation Excerpted from The American Heritage® Dictionary of the English Language, Third Edition © 1996 by Houghton Mifflin Company. Electronic version licensed from INSO Corporation; further reproduction and distribution in accordance with the Copyright Law of the United States. All rights reserved. "Beware how you take away hope from another human being." Oliver Wendell Holmes


Hope: Its Spheres & Dimensions :Hope: Its Spheres & Dimensions -- Dufault, K. and Martocchio, B. NursClinNA. 1985 Particular General Affective Cognitive Behavioral Affiliative Temporal Contextual


The Neurobiology of Hope :The Neurobiology of Hope -- Gottschalk, L.A., et.al., The Cerebral Neurobiology of Hope and Hopelessness. Psychiatry, V.56, Aug 1993 Activity Regions of Hope Memory - Frontal Cortex + Language - Temporal + Perception - Parietal + Vision - Occipital + Emotions – Hippocampus + ? Psychopathology -


Importance of Hope :Importance of Hope We have discussed so far the different stages that people go through when they are faced with tragic news --…coping mechanisms to deal with extremely difficult situations. These means will last for different periods of time and will replace each other…. The one thing that usually persists through all these stages is hope. Just as children … in the concentration camp of Terezin maintained their hope years ago, although out of a total of about 15,000 children…only around 100 came out of it alive. Elisabeth Kubler-Ross, MD; On Death and Dying, 1969


Ever-Present Hope :Ever-Present Hope “…we were always impressed that even the most accepting, the most realistic patients left the possibility open for some cure….It is this glimpse of hope which maintains them through days, weeks, or months of suffering. It is the feeling that this all must have some meaning….(or) that this is just like a nightmare and not true;…It gives the terminally ill a sense of a special mission in life which helps them maintain their spirits;… for others it remains a form of temporary but needed denial.” Elisabeth Kubler-Ross, MD; On Death and Dying, 1969


Ever-Present Hope :Ever-Present Hope Everybody has it It allows them to live – Hope is required to experience life during the process of dying It has two forms: Provides meaning in illness & death Provides temporary denial


Helping Your Patients :Helping Your Patients Remember that there is no greater loss than the loss of a child Allow for Hope and Share It Importance Understand Conflicts in Hope Tell the truth (Miracles Do Exist) Hope Shifts Timing Embrace Life


Allow for Hope :Allow for Hope “…we found that all our patients maintained a little bit of it (hope) and were nourished by it in especially difficult times. The showed the greatest confidence in the doctors who allowed for such hope – realistic or not – an appreciated it when hope was offered in spite of bad news….While we maintained hope with them, we did not reinforce hope when they finally gave it up, not with despair but in a stage of final acceptance.” Elisabeth Kubler-Ross, MD; On Death and Dying, 1969 Why is this difficult? How do we actually do this?


Understand Conflicts in Hope :Understand Conflicts in Hope Two Main Sources: I “Conveyance of hopelessness either on part of the staff or family when the patient still needed hope.” Example II “The family’s inability to accept a patient’s final stage.” Example Elisabeth Kubler-Ross, MD; On Death and Dying, 1969


Tell the Truth :Tell the Truth Give appropriate information Promise always to tell the truth Live up to it Tell what you really know Statistics vs. Facts Personal Estimates vs. Facts Avenues of Support – Avoid abandonment I (We) will always be there for you Miracles Do Exist


Miracles Do Exist :Miracles Do Exist Story I: JS, 4 year old boy with stage IV neuroblastoma, considered incurable. Chemotherapy achieves a partial response. Bone marrow transplant performed, and an abdominal mass is found only three weeks later. Biopsy shows neuroblastoma. No further therapy. JS is alive and well without disease 5 years later, past his Collin’s risk period for relapse.


Miracles Do Exist :Miracles Do Exist Story II: CB, 11 year old boy with ALL. Induction therapy fails. Told he was incurable. He receives intensified, investigational treatment, which fails. Told he was incurable. Palliative steroids were given, and he enters remission, but develops a systemic aspergillos infection. Told it was incurable. Receives an investigational antifungal agent and clears the infection. He then receives a bone marrow transplant, but 6 months later relapses. Told it was incurable. He was treated with palliative therapy, and enters remission. He then relapses after 6 months of more treatment. We decided we wouldn’t tell him he was incurable, because he might think we were stupid. He lives another year with good quality of life before dying of his disease. -- Listen to the Children


Hope Shifts :Hope Shifts What We Assume Hope Only for Survival Western Medicine Life is not worth living if one is bedridden Comatose people experience nothing What Can Be Hope For Survival Alternative Medicine Miracles Comfort Peace for self & others Simple Things Baby’s Birth Wedding Hope for Hope How Can We Use This?


Timing :Timing Be aware that life is dynamic Stages of Facing Tragic News Denial and Isolation Anger Bargaining Depression Acceptance “I don’t feel like talking now…” Managing “Unrealistic” Hope


Embrace Life :Embrace Life Just Living Building Memories No Regrets Relationships – Strengthening, Creating, Mending


Take-Home Messages :Take-Home Messages Think of the 5 E’s: Engage; Empathy; Educate; Enlist; Expectations Techniques: The CLASS System Context; Listening; Acknowledgement; Strategy; Summary Telling Bad News: The 6-Step Plan Context; Understand the Patient; What Knowledge is Needed; Share the Information; respond to Feelings; Plan for Follow-up Hope Hope is required to experience life


Thanks for Listening :Thanks for Listening “Be the practitioner you would want to have if you were sick” Gary Allegretta, M.D. The Jason Program P.O. Box 336 Cumberland, Maine 04021 Phone: (207)-829-3537 Fax: (206)-338-2426 E-mail: mddiector@jasonprogram.org Web: www.jasonprogram.org


A Classic Mistake :A Classic Mistake A.A. was an energetic, athletic 16 year old girl who had recently finished 9 months of intensive therapy for Ewing’s sarcoma of her femur. Her hair began growing, and she had hopes of returning to competitive play on her school's track team. Shortly after a routine bone scan completed, a technician told her she needed to see her doctor as soon as possible. She was sent to see a nearby physician who had treated her briefly 7 months ago. He reviewed the scan, which showed multiple bony metastases. He met the patient and told her, “There were many spots. Your cancer has returned in a bad way. I’m sorry, but there is nothing we can do for you.” She drove herself, crying continuously, to our office.


Consequences :Consequences T.S. was a 17 year old girl with advanced hepatocellular carcinoma who had received several different forms of chemotherapy, all unsuccessfully. Despite her reluctance to continue with treatment, her parents convinced her to try experimental medication at a hospital distant from her home. She developed severe liver failure and bleeding from tumor growth, and ultimately this medication was discontinued. She was sent home, seriously ill, for palliative care. Shortly after arriving at our hospital, TS experienced sudden bleeding and difficulty breathing. Her parents stated they wanted full resuscitative measures taken if necessary. On route to the intensive care unit, TS became unconscious, then developed a cardiac arrest. CPR was begun. She died in the ICU.


Slide 66:Silence Beyond Words “Those who have the strength and love to sit with a dying patient in the silence that goes beyond words will know that this moment is neither frightening nor painful, but a peaceful cessation of the functioning of the body. Watching a peaceful death of a human being reminds us of a falling star; one of the million lights in a vast sky that flares up for a brief moment only to disappear into the endless night forever. To be a therapist to a dying patient makes us aware of our finiteness, our limited lifespan. Few of us live beyond our three score and ten years and yet in that brief time most of us create and live a unique biography and weave ourselves into the fabric of human history.” Elisabeth Kubler-Ross, MD; On Death and Dying, 1969


“The Elephant in the Room” :“The Elephant in the Room” Can I wear my clothes? What is a malignancy? What choices do I have? Can I trust you? Is this real? Will my child die? Tonight?