Crucial Conversations at End‐of‐Life Clare Hawkins, MD, MSc, FAAFP Regional Medical Director, Aspire Healthcare Texas Academy of Family Physicians’ Annual Session Saturday November 9, 9:45‐10:45 a.m. With Katie Gruner
Crucial Conversationsat End‐of‐Life
Clare Hawkins, MD, MSc, FAAFP Regional Medical Director, Aspire Healthcare
Texas Academy of Family Physicians’ Annual SessionSaturday November 9, 9:45‐10:45 a.m.
With Katie Gruner
Speaker Disclosure
• Dr. Hawkins has disclosed that he has no actual or potential conflict of interest in relation to this topic.
Objectives
1. Identify clinical situations where it is appropriate to have a Goals of Care conversation.
2. List the components of an effective interview for an Advanced Illness Conversation.
3. Be convinced of the importance of having a crucial conversation with patients and family with advanced illness.
Outline
1. Why (everyone dies)2. Opening the door and listening for cues (Conversation #1)3. Slow decline, “Renewing home health orders” 4. Specialist perspective and prognosis (Conversation #2)5. Seeing the future in two ways and use of silence (Conversation #3)6. The paperwork7. Spikes protocol8. Resources
1. Why have these conversations
• The Human Condition: Universal mortality rate• Physician Training: Fight disease• Most people would prefer to die at home• Most people die in hospital• Medical progress has given many people more years to live…
• But it has given others more suffering • Where is the balance• Where is the dialogue
1. More Reasons Why
• American society has developed unrealistic technological expectations
• There is difficulty for patients giving informed consent• Because, “The end of the story matters” • It usually takes a series of conversations and/or a
conversation around a seminal event
Illness Trajectories Can we predict the future?
Cancer
Heart and Lung Failure
2. Opening the Door and Listening for Cues
• What is your opening?• Physician Agenda
• Its time to have our annual review of your condition• Situation change
• Transitions of Care after hospital admission• Obvious decline• Option for a procedure
• Informed consent to patient • Informed consent to family member • “Let's step back and look at the Big Picture”
2. Opening the Door & Listening (Use of Silence, and the Pause)• Sample Phrases• “I have these conversations with all my patients” • “I think it is time for us to discuss where this is all going” • “I’m worried about you”. (After these hospitalizations or after this decline)
• “Has any of this caused you to look at your future?”
Listening for Cues • The medical encounter is busy, often preventing us
from hearing the quiet voice inside the patient and coming out• “I’m getting more tired.”• “I find it hard to go on?”• “Should I be doing this?”• “My wife (son, daughter) wants me to…”• “It doesn’t seem to be working.” • “I stopped taking the medicine.”• “I haven’t seen my specialist in a while.”
Don’t Interrupt
• Most doctors interrupt within 6 seconds! • COUNT!• Just wait… Even though you are uncomfortable• This allows mental processing for the patient• This also prevents you from ”rescuing” them from the difficult
thought‐work that they need to do
Let them talk more than 50% of the conversation
• Patient: I’m worried about dying. I’m afraid of pain. • Doctor: Tell me more. • Family: Her husband died two years ago without good comfort care. • Doctor: That must have been horrible.• Family: Yes it was very hard for our mother. We’re worried for her. • Patient: I couldn’t sleep. His passing was very difficult for me.• Doctor: I’m so sorry…• Patient: How will it end for me?
Clinical Conversation #1• Mr. Methuselah is unable to come into the office today• Bed bound with advanced dementia (Fast Score 7b)• He now has some behavioral disturbance for which you have
given an atypical antipsychotic• He can no longer do any ADLs• He is incontinent of bowel and bladder• His wife sees you for prescription refills• She has been faithfully caring for him during his decline for
many years
Review Conversation #1• Have a mental image of the illness trajectory to anticipate families’ needs
• Did you listen for cues?• What cues were made/missed?• Was there good use of silence?• Be prepared to be silent and wait for responses• Examples
• “I don’t know if I can go on” • “I am so tired” “I haven’t been getting sleep”• “People are no longer helping”• “I can’t remember when I last smiled” • “No‐one is helping”
Slow Decline: Prolonged Dwindling
3. Slow Decline “Renewing Home Health Orders” • It is a common default to renew HH orders• It is also common for patients to use HH indefinitely rather than having a meaningful conversation about the future• Placement in long term care• Provider services• The utility of ongoing home PT
• Patients and their family may have unrealistic expectations of walking again, or regaining strength
• Consider a time‐limited trial
4. The Specialist Perspective & Prognosis
• “You’re doing great!”• Some specialties have difficulty seeing death
• Feeling like a failure• Opportunities for more intervention• Have not dealt with their own mortality• Undulating course of illness and humility• Perception of the risk of being wrong• Optimism bias
Optimism Bias: The Glass is Half Full• Patient optimism was associated with increased
physician optimism• Physicians were approximately three times as likely to
overestimate the survival of patients• Estimates are often a factor of 4 longer than reality for a
PCP• Estimates are sometimes a factor of 10 longer for
specialists like Oncologists• These errors in judgment can prevent patients from
making timely decisions about their end‐of‐life care.
Christakis & Lamont. BMJ. 2000; 320:469‐472 Gramling et al. J Pain Symptom Manage. 2019 Feb;57(2):233‐240Ingersoll et al. Psycho‐Oncology. Vol 28, 6 June 2019 1286‐1292
AdobeStock license #49135811
Prognostication
How long do I have?• Five‐year survival terms which are hard for patients to understand and not immediate enough
• Our confidence in specific prognosis is weak
• Ranges: Hours to days, days to weeks, weeks to months, months to years
Strong Clues• Unexpected weight loss• Decline in performance status, especially bed‐bound
• Repeated hospitalization• Multiple diagnoses, multiple organs
• Disease specific prognosis• Karnovsky or ECOG scores
Clinical Conversation #2 Mr. Hernando Corazon• 80‐year‐old HM • DM II, MI x 2 and CABG 2009• PCI 2015 after resuscitation from cardiac arrest• Now systolic HF (HrEF) chronic peripheral edema & periodic pulmonary edema • Hospitalized 3 x this year including a protracted SNF stay• Acute on chronic Kidney failure during a recent admission and was offered
hemodialysis but refused and recovered• COPD “D” on long‐acting bronchodilators• Sopped smoking 10 years ago after 60 pack years• You are thinking that due to his decline within the past year, he may have less than
six months to live and are considering hospice. • You decide to call his cardiologist to collaborate.
Communication with a Colleague: FRAME
• Find a frame
• Reinforce respect: They need to feel respected to begin a dialogue
• Ask their opinion• Map milestones
• Endorse Effort
McInnes S, et al. J Adv Nurs. 2015
5. Seeing the future in two ways
• Physicians may be worried to give bad news• Patients often start the conversation with unrealistic
expectations• They may also say, that it is important to be positive• “Don’t tell my mother anything negative” • They are afraid
Who do I need to speak to ?
What preparations do I need to make for my loved ones?
Who will speak for me if I can’t
AdobeStock license # 292635915
Clinical Conversation #3 Lung Cancer Patient• 74‐year‐old woman with advanced Stage IV Non‐Small Cell Cancer • Radiation and chemotherapy when it was determined that the tumor
was too large for resection• Metastatic to brain with some cranial radiotherapy • Now immune therapy for the tumor• Her palliative performance score has declined from 60 to 40 due to
weakness and less ambulation. • Either the oncologist hasn’t said, or she is not clear on whether the
current treatment program is curative or palliative and how long she can continue treatment
6. The Paperwork
• Medical Power of Attorney• Default: Spouse, consensus of living children, parent• Out‐of‐Hospital DNR (OOHDNR)• Advance Directive: A more specific outline of choices • https://hhs.texas.gov/laws‐regulations/forms/advance‐
directives
7. Addendum Spikes Protocol for Giving Bad News
Setting of the interview• Arrange for some privacy• Ask who should be present• Consider including a colleague• Sit down and make eye contact
Perception of the patient• “What do you know about your illness”• “What has been going on with your health over the last year”
Spikes Protocol for Giving Bad News
Invitation from the patient• Determine what the patient wants to know• “Do you want me to explain all the details of your condition?”
Knowledge Transfer• Use simple language, and small amounts of information, checking for
understanding (allowing patients and family to talk)• Acknowledge uncertainty in prognosis giving ranges not exact numbers
Spikes Protocol for Giving Bad News
Emotions: Addressing feelings with empathy• “It is OK to feel sad”, “this must be upsetting”• “You have been going through a lot”• “You must be tired” “we can take our time”• Use silence, and short phrases to draw out understanding and feeling, “Tell me more” or “What worries you the most”
Strategy & Summation• Summarize and consider “teach back”• Make a plan for a follow‐up meeting
Summary
• Commit to having these conversations earlier• If you are uncomfortable, find someone in your practice or
another provider who can• Practice listening and use of silence• Reflect on life goals and our own mortality
8. Resources: Vital Talk APP
• Emotions• Serious News• Prognosis• Early Goals• Conflict• Colleagues• Dying• Oops
8. Resources and Annotated Biography
• Being Mortal, Atul Gawande 2014• When Breath Becomes Air, Paul Kalanithi, 2016• Emperor of all Maladies, 2010• The Best Care Possible, Ira Byock 2013• Living Well and Dying Faithfully, Swinton & Payne ed. 2009• Palliative Care Conversations, David & Robert Gramling 12 ed
2019• The Conversation, Angelo E Volandes 2016
Being Mortal, Atul Gawande, 2014• Harvard Surgeon & Writer• Personal and Family
Reflections• From the death of cells and
organ systems • To the way we care for
elderly• Ariadne Labs
• Serious Illness Conversations
When Breath Becomes AirPaul Kalanithi2016Posthumous Autobiography of an American Neurosurgeon
“The physician's duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.”
Emperor of all Maladies: A Biography of Cancer, Siddhartha Mukherjee 2010 (2011 Pulitzer Prize)
• A fascinating biography of the approach to cancer medicine through history
• Focus on the US battle on cancer • Putting in perspective the heroic interventions, technological developments
• Also the faulty logic which has captured the public imagination
The Best Care Possible Ira Byock, A physician’s quest to transform care through the end of life 2013 • How we die is a national
crisis• Most People want to die at home
• Most People die in hospitals
• Lack of informed consent and communication
• Palliative Care often allows a longer life
• Medical and Ethical reflections
John Swinton & Richard Payne ed. 2009
• Duke University & Univ of Aberdeen• Pastoral Essays and wisdom • Constructive dialogue between
theology and medicine
Palliative Care Conversations, David & Robert Gramling Applied Linguistics Vol 12 2019
• Research review of how what is effective in communication at the end of life
The Conversation: A Revolutionary Plan for End‐of Life Care. Volandes 2016
• Seven patients’ end‐of‐life experiences
• Serious Illness conversations• Reshaping a dialogue for the
patient‐doctor relationship• Ways for patients and their families
to talk about the end of life