Ethical Insights for Addressing Conflict between

Families and the Medical Team

Jamie Watson, Ph.D.

Laura Guidry-Grimes, Ph.D.
Assistant Professors of Medical Humanities and Bioethics
Clinical Ethicists
Disclosures

We have no conflicts of interest or disclosures to report.

The case has been deidentified.

Objectives

1. Identify at least three ways communication and

disagreement affect ethical care of patients at the end of life.

2. Describe at least three ethical challenges to effective family

meetings.

3. Explain at least three strategies for improving communication

and addressing disagreement between family members and
healthcare professionals.
The Case of Ms. T

 57 yo woman
 Liver and kidney failure
 Not capacitated, husband was decision-maker (two sons)
 Put on liver transplant list
 Deteriorated, developed seizure disorder
 Husband was notified by mail that his wife was no longer a candidate
for liver transplant (was very upset by this means of communication)

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The Case of Ms. T
 Given high dose of anti-seizure medicine to stop the seizures
 Substantial pre-seizure activity continued
 Patient was not conscious or exhibiting pain behaviors.
 Medical team was distressed
 “No hope of recovery”
 “Unnecessarily suffering”
 No pain meds because team thought patient could not perceive pain
 Recommended terminal extubation to relieve unnecessary suffering
 Husband and sons refused
 Were suspicious of prognosis
 Husband: “It is my job to protect her and fight for her.”
Common Responses to Disagreement

Informational
Overload

Pressure

Hopelessness
Reorienting Ourselves to Disagreement

 All intimate relationships face disagreement.

 People bring their backgrounds, languages, strengths, and
insecurities to the table (even HCPs).
 We can deal with it well or poorly.
Disagreement ≠ Conflict

 Disagreement can be productive or destructive.

 Some ways of dealing with disagreement are self-undermining.
 When disagreement is regarded/treated as conflict, it will be
perceived as conflict.
Ethical Problems:
When Disagreement is Destructive
 Discussion stops.
 Communication becomes one-sided (no longer shared; a puzzle to be
solved).
 Patients/families leave discussions with too little or misleading information
(lose sufficiently informed decisions).
 Trust is broken.
 Perceptions of over/understatement of prognosis, being pressured/badgered
can trigger resistance.
 Patients/families feel more powerless because they’re not sure you’re on
their side.
 The patient’s interests are pushed to the background.
 We start treating the family rather than the patient.
Ethical Challenges in Family Meetings that Can
Lead to Destructive Disagreement

Changing medical picture

 Helping patient/family understand
progression/regression of the patient's medical status
 New decisions that have to be made
 Previously offered options that are no longer options
Ethical Challenges in Family Meetings that Can
Lead to Destructive Disagreement

Uncertainty and error

 What can be known with some level of confidence vs
what cannot be known
 Need to set up concrete and realistic expectations while
still leaving room for uncertainty
 Errors or unfortunate side effects that have to be
discussed
Ethical Challenges in Family Meetings that Can
Lead to Destructive Disagreement

Clash of worldviews
 Conflicting goals for care
 Competing healthcare values
 Religious/cultural values
 Background experiences
Getting Out in Front of Conflict:
Reorienting Ourselves to Disagreement
Embrace disagreement as potentially productive.
 Don’t double-down on what you want to happen.
 Review your clinical judgment for flexibility.
 When disagreement happens, you know something more than
you did before.
 Exploring the disagreement can ultimately lead to more
nuanced and well-reasoned decisions. (Feldman, 2007;
Matheson, 2015)
Diagnosing Disagreement
What might explain the disagreement?

• Lack of understanding
• Lack of trust
• Different values
• Emotional or psychological barriers What is our responsibility?
- What is within our control?
- What would be an ethically
beneficial response?
Barriers to Understanding
 People in hospitals retain less than 50% of what they
hear.*
 Patients and families are overwhelmed by the context (white
coats, activity, bldg.).
 They are overwhelmed by the complexity (forms, payment, work,
family dynamics).
 The situation is usually emotionally compromising.
 Doctors are uncomfortable giving bad news.
 Talk too fast
 Accidentally use jargon

* Schillinger et al. (2003); McCarthy, et al. (2012)

 Barriers to Understanding
use jargon without guilt too much information
explaining
information overload
suffering
pressuring speak too quickly
delirium stress
information ordering
fear miscommunication
framing
family pressures
The Problem of Low Health Literacy

Health literacy is the ability to get, understand, and use

health information to make informed health care
decisions.
 Almost 80 million Americans have low or inadequate health
literacy. 37% of Arkansans > ntl avg.
 Low health literacy is not just about reading health information:
the ability to ask questions, the ability to assess risk and
understand numbers, the ability to process complex decisions.
 Low health literacy is a barrier to genuinely informed consent.
The Problem of Low Health Literacy

Low health literacy is correlated with:

 Unnecessary ED visits
 A higher percentage of mistakes with medication
 Poorer health outcomes
 Increased costs
Making Disagreement Productive

Manage the facts.

 Don’t presume what you can’t know just for the sake of changing someone’s
mind. Don’t change your story unless the medical picture changes.
 Present the uncertainties.
 Correct misunderstandings.
Manage the narrative.
 “We are trying to figure out what’s best together.” “We have a responsibility.”
 Keep attentive to any normal barriers to agreement.
Manage the expectations.
 “If what we think is happening is happening, here is what we expect…”
 “If we keep going like we are, here is what we expect to happen. If that does happen,
here is what we can do.”
Making Disagreement Productive

Using disagreement as a tool

 Focus on decision “paths” rather than isolated decision points.
 Take seriously their perspectives on harms and benefits to the patient
and to the rest of the family (including metaphysical harms/benefits,
even those that are not widely shared or orthodox)
 In what ways can their culture, religion, or other personal values be
accommodated and respected without compromising care?
 Always look to address misconceptions and tangential issues: “What are
you most worried about?” (This is not necessarily what is being
discussed the most.)
 Thanks to Dr. Sara Peeples for this diagram.
Exploring Decision Paths

Full, Aggressive,
Intensive Life- Non-Escalation of
Sustaining Measures Therapy Comfort Care

Time-Limited Active Withdrawal

Trial of of Life-Sustaining
Aggressive Interventions
Palliative care can benefit
patients across these paths.
Therapy
Making Disagreement Productive

Taking culture seriously

Two ways to think about culture:

1. Something “out there”; they have this “thing” called culture
2. The lens through which we see things; we all participate in
multiple cultures (family; society; professions; religion)
Making Disagreement Productive

Implications for medicine:

1. Something “out there”; they have this “thing” called culture
- Learn the specific ways people think differently than I do
so I can meet them where they are.
- Presumes privileged, neutral perspective from which to
do medicine.
Making Disagreement Productive

Implications for medicine:

2. The lens through which we see things; we all participate in
multiple cultures (family; society; professions; religion)
- Talk with patients about their past experience with health
care and ask if they have beliefs or lifestyles that might
affect what medicine can offer them; share ways that
medicine can help them achieve those goals.
- Presumes a shared decision-making approach.
What If Disagreement Cannot Be Resolved?

 Shared decision-making is not always possible, but attempting it

can reveal intractable disagreements.
 If both parties have shared their perspectives and values and learned
from each other, that process is in itself valuable, even if there is not
unanimous agreement at the end of the day.
 What kind of disagreement is tolerable?
 Even if a patient or surrogate requests something suboptimal (from the
HCPs’ standpoint), is it within the range of what is medically and ethically
reasonable? Can they be given more time?
 Make sure you and your team know your line in the sand.
 This helps prevent your and your team’s moral distress; it can ultimately
benefit the therapeutic alliance by sharing in the decisional burden and
taking on professional responsibility as a point of integrity.
Returning to Ms. T

 Husband and sons refused terminal extubation

 Were suspicious of prognosis
 Husband: “It is my job to protect her and fight for her.”
 After extensive discussions with attending, palliative care, ethics,
the husband and one son acknowledged that she would not live
through this.
 Husband was convinced that he would know when the time was right,
and that it wasn’t then.
 Husband and son had researched the pre-seizures and called out the
docs when they called them seizures.
Returning to Ms. T

 In the end:
 Ms. T’s family was well-informed.
 Ms. T’s husband made clear his values in the decision.
 The team shared their perspective, and this was acknowledged by the family.
 The attending physician disagreed and successfully pursued redirection
of care on the grounds of potentially inappropriate treatment.

 Questions to consider
 What might have fed the disagreement?
 What steps would you have taken to resolve disagreement?
 Could the disagreement have been productive?
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 Thank you!
jwatson@uams.edu  lguidrygrimes@uams.edu