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
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 paperwork 7. Spikes protocol 8. 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):233‐240 Ingersoll et al. Psycho‐Oncology. Vol 28, 6 June 2019 1286‐1292 AdobeStock license #49135811
Prognostication How long do I have? Strong Clues • Five‐year survival terms which • Unexpected weight loss are hard for patients to • Decline in performance status, understand and not immediate especially bed‐bound enough • Repeated hospitalization • Our confidence in specific • Multiple diagnoses, multiple prognosis is weak organs • Ranges: Hours to days, days to • Disease specific prognosis weeks, weeks to months, • Karnovsky or ECOG scores months to years
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 • F ind a frame • R einforce respect: They need to feel respected to begin a dialogue • A sk their opinion • M ap milestones • E ndorse 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”
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