Hank Puls MD Diane Plantz MD Pediatric Hospital Medicine Conference CaseBased Workshop July 29 th 2016 Disclosures We have no relevant financial relationships with the manufacturers of any commercial products andor provider of commercial services discussed in the CME activity ID: 612663
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Slide1
Everyday Ethics on the Wards
Hank Puls, MD
Diane Plantz, MD
Pediatric Hospital Medicine Conference
Case-Based Workshop
July 29
th
, 2016Slide2
Disclosures
We have no relevant financial relationships with the manufacturers of any commercial products and/or provider of commercial services discussed in the CME activity.
We do not intend to discuss an unapproved/investigative use of a commercial product/device in my presentation.Slide3
What We Can Accomplish Today
What ethics can(not) do for you?
How to identify and analyze an ethical dilemma.
Review key ethics principles and frameworks without being too
”
ethiCKY.”Slide4
Before We Start
DISCLAIMER:
This workshop may be a more enriching experience if you do
NOT
read ahead in the presentation materials.Slide5
Before We Start
A few questions…Slide6
Worse Than Death?
Would you consider a life with ventilator dependence, near-complete paralysis and dependence on caregivers, severe limitations in communication, but with normal
mentation
to be an acceptable quality of life?
Acceptable
UnacceptableSlide7
Acceptable
Unacceptable
7
Worse Than Death?Slide8
White Lies
At what age do you
always
tell the child, regardless of parental preference, the truth about their diagnosis and prognosis?
5 years
10 years13 years16 years
I am not
always
truthful about diagnosis and prognosis for anyone.Slide9
5 Years
10 Years
13 Years
16 Years
I am not
always
….
9
White LiesSlide10
What’s Best?
In general, for children who suffer
severe
neglect-related morbidity due to parent behavior, but the parents demonstrate an improved ability to care for the child, in addition to child protective services reporting:
The child should remain with the parents.
The child remains at too great of risk and should have alternative placement.Having their child taken away is not punishment enough, the parents should also be held criminally liable. Slide11
What’s Best?
Remain with parents
Alternative placement
Parents criminally liable
11Slide12
What does “Ethics” Mean to You?
“Ethics has to do with what my feelings tell me is right or wrong.”
“Ethics has to do with my religious beliefs.”
“Being ethical is doing what the law requires.”
“Ethics consists of standards of behavior our society accepts.”
“I don’t know what the word means.”Slide13
What is Ethics?
A system of moral principles.
Attempts to set standards of right and wrong that prescribe what we ought to do.
Ethics versus Morals.Slide14
The Plantz Triangle
Patient/Parental
Decision making
CHILD
Society/Law
Health care Slide15
Frustration with Ethics
No objectively true “gold standard.”
“Man must not attempt to dispel the ambiguity of his being but, on the contrary, accept the task of realizing it.” - Simone de Beauvoir,
The Ethics of Ambiguity
Does not give definite answers.
“The trouble with life isn’t that there is no answer, it’s that there are
so many answers.” Ruth BenedictSlide16
Its an Ethical Dilemma When…
There are two (or more) morally acceptable options and choosing one precludes the choosing of the other.Slide17
What Can
Ethics Do For You?
Immoral? Nefarious?
Ethical frameworks can:
Remove some emotional confoundingRemove some biasPinpoint disagreementsProvide clear choicesSlide18
What Can
Ethics Do For You?Slide19
Approach to Ethical Dilemmas
Remember, not too
”
ethiCKY
.”
Four Bioethical Principles BeneficenceNon-maleficenceJustice
AutonomySlide20
Approach to Ethical Dilemmas
Stop. Identify the issue and conflict.
Clarify goals.
Determine facts.
Adopted from the Josephson Institute
of Ethics.Slide21
Ethical Decision Making Tool
Medical Indications:
- Diagnosis (
es
)?
- Prognosis?- Treatment options?- Goals of care!!!?- Prognostic (un)certainty?
Patient Preferences:
- Patient (surrogate) values?
- Cultural influences?
- Mental and legal capacity of patients
and/or surrogate.
Quality
of Life
:
-
Prospects w/ or w/o treatment?
Return
to normal or deficits?
Biases toward
QoL
?
Contextual Features
:
Outside stakeholders?
Conflicts of interest?
Financial factors?
Allocation
of resources?
Legal
issues?
Religious
issues?
Public
health and safety?
Adopted from AR
Jonsen
, M
Siegler
, W
Winslade
,
Clinical Ethics,
7
th
Edition. McGraw-Hill, 2010.Slide22
Approach to Ethical Dilemmas
Stop. Identify the issue and conflict.
Clarify goals.
Determine facts.
Develop options.
Consider consequences and degrees of certainty. Choose!Monitor and modify.Adopted from the Josephson Institute
of Ethics.Slide23
Cases
What is the issue?
Where is the conflict?
What is the theme of the ethical dilemma?Slide24
Case 1
An 18 month old male with SMA type 1 is admitted with progressive respiratory insufficiency.
His bedside nurse mentions to the family that a
tracheostomy
may help.
You know the family well and managing his current durable medical equipment can be a challenge for them.They struggle to comprehend complex medical information, and have a chaotic home environment. You also know that they love him very much and their overall goal is to extend his life as long as possible so long as suffering is not excessive.Slide25
Tracheostomy?
Is
tracheostomy
for SMA type 1 a futile treatment?
Futile
Not futileSlide26
Tracheostomy?
Futile
Not futile
26Slide27
Tracheostomy?
What would you do?
Prohibit
tracheostomy
Discourage
tracheostomyAvoid discussion of tracheostomy
Encourage
tracheostomy
Require
tracheostomySlide28
Tracheostomy - What would you do?
28
Prohibit
Discourage
Avoid
Encourage
RequireSlide29
Tracheostomy for SMA
Prolonged survival of SMA 1 results in high incidence of co-morbidities, some painful.
2
Gregoretti
C, et al.
Pediatrics
2013.
Bach JR.
Am J Phys Med
Rehabil
2007.Slide30
Lack of Consensus
Consensus statement
1
:
“
Tracheostomy for chronic ventilation is a decision that needs to be carefully discussed if requested by parents. In nonsitters, this is controversial and an ethical dilemma.”Variations in care2:U.S. (25%) physicians are more likely to recommend tracheostomy than those from U.K. (7%)21% of physicians feel they can refuse
trach
/vent
60% of physicians feel that
trach
/vent is acceptable
Wang, et al.
J Child
Neurol
2007.
Benson, et al.
Pediatr
Pulmonol
2012.Slide31
Futility
Medical interventions that are not expected to benefit the patient are commonly referred to as futile.
Different types of futility:
Quantitative.
Qualitative.
References to futility or lethality of conditions obscure the value-based nature of these decisions.Slide32
SMA Quality of Life
Bach et al.
Am J Phys Med
Rehabil
2003
.Slide33
SMA Quality of Life
Clinicians rate the
QoL
of children with SMA lower than their parents
1
:2.85 vs 7.8 (P < 0.0001)Patients in locked-in syndrome generally (72%) report being happy.2
Bach et al.
Am J Phys Med
Rehabil
2003.
Bruno MA, et al.
BMJ Open 2011.Slide34
Physician Bias
Physicians:
Are not good at estimating subjective
QoL
domains.
1Judge disability more harshly and underestimate QoL in disabled children compared to parents.2Are more likely than parents to view severe disability as worse than death.3
Janse
et al,
Jour of
Clin
Epidem
2004.
Saigal
et al,
JAMA 1999
.
Lam et al,
Pediatrics 2009.Slide35
Physician Bias?
Benson R, et al.
Pulmonol
2012.Slide36
Providing “Balanced” Information
Wilfond
, B.
Pediatrics
2014.Slide37
Case 2
A 13 year old Hispanic Spanish-speaking only teen is admitted with back pain and leg weakness.
He is found to have an inoperable spinal mass without treatment options.
His condition is terminal.
His family wants to tell him the MRI scan cured him (culturally plausible given his level of medical understanding) and be discharged home without fully disclosing his diagnosis and/or prognosis.
They plan to return home to Mexico to be closer to family for his end-of-life care. Slide38
Veracity
Do you override parental preference and inform the child of their diagnosis and prognosis or do you acquiesce and discharge them home?
Painful Truth
DischargeSlide39
Do you override parental preference and inform the child of their diagnosis and prognosis or do you acquiesce and discharge them home?
Painful Truth
Discharge
39Slide40
Best Interest Standard
Requires value-based judgments:
-
Balance between risks and benefits.
- Quality of life.
- Impact on others.Limitations:- Subjective- When strictly interpreted, i.e. “best”
- Overly demanding.
- Prone to ethnocentrism.
- Devalues of families
.
Parents expected to work towards what’s “best” or ideal for their child.Slide41
Things to think about . . .
Development of the child
Is the child or adolescent likely to experience harm if the information is withheld?
Involving those who can help
child life, psychologist, ethics consultation
Negotiating a planHIV is a great examplePartial truth-tellingDevelopmentally appropriate disclosureSlide42
Veracity
What were some situations where your ability for truth-telling was challenged?
Is it ever
virtuous
to lie?
Lie to the patient for their benefit? At the request of the patient?Slide43
Moral Distress
Arises when one
knows
the ethically correct action but is powerless to do so.
Where do you go, what do you do?Slide44
Case 3
An 11 month old female is admitted with severe failure to thrive with associated electrolyte abnormalities, prolonged
QTc
, and probable rickets.
At 2 months of age, her parents adopted a new “spirituality” that included veganism which they also had their other children adopt.
Mom was breastfeeding but was unaware that her supply was very insufficient. They were attempting additional vegan baby food but with severe restrictions. This hospitalization is their first encounter with the medical system since she was 2 months of age. Parents refuse all formulas and demand a strict vegan diet. Your impressions of them are that they are intelligent (albeit medically naïve), true to their “spirituality”, well intentioned, loving parents.
There is disagreement within your healthcare team if a vegan diet yields too greatly to parental authority and provides “suboptimal” care.Slide45
Vegan Diet
Should you attempt to sustain the infant on a better executed vegan diet in line with the parent’s wishes or switch to a more standardized formula and age-appropriate diet?
Vegan Diet
Standard DietSlide46
Vegan Diet?
Vegan diet
Standard diet
46Slide47
Parental Authority
Health is only one aspect of well-being.
Humble awareness of the limits of medicine.
Parents are presumably in the best position to decide for their children.
Most parents care about their children.
Better situated to account for all factors. Some decisions in child’s interest may harm their family.Parents should be allowed to raise children with their own chosen values and standards.Slide48
Harm Principle
Eight conditions (all required):
Is there significant risk without treatment?
Is harm imminent?
Is the recommended intervention necessary to prevent serious harm?
Is the recommended intervention of proven efficacy?
Diekema
D.
Theo Med
2004
.Slide49
Harm Principle
Eight conditions (continued):
Do the intervention’s benefits outweigh it’s burdens?
Are there alternate options less intrusive to parental authority?
Can the state intervention be generalized to all other similar situations?
Would most parents agree that state intervention was reasonable?
Diekema
D.
Theo Med
2004
.Slide50
Satisficing Parentalism
Minimum requirements for parental obligations.
Not doing what is necessarily “best”, but rather what is “good enough.”
Not an apologist’s argument for bad parenting.
At the end of the day…aren’t we all practicing
satisficing parentalism to some degree?
Blustein
.
Theor
Med
Bioeth
2012.Slide51
Paying it Forward
Teaching ethics can be intimidating.
But, we are all moral agents.
Informal discussions of “common” ethical dilemmas benefit the majority of pediatric residents.
Teaching ethics on the wards:
Identify the “common” ethical dilemmaDescribe methods of ethical analysisAcquire knowledge of additional bioethics resourcesSlide52
We Reviewed
Ethical Principles/Frameworks:
- Parental Authority
- Best Interest Standard
- Satisficing
Parentalism- Harm Principle- VeracityMatters of Ethics & Professionalism:
- Quality of Life
- Physician Bias
- Framing of Discussions
- Moral DistressSlide53
In Closing…
“The job is to ask questions - it always was - and to ask them as inexorably as I can. And to face the absence of precise answers with a certain humility.”
Arthur MillerSlide54
References
Bach JR, Vega J, Majors J, Friedman A. Spinal muscular atrophy type 1 quality of life.
Am J Phys Med
Rehabil
2003;82:173-142.
Bach JR. Medical considerations of long-term survival of werdnig-hoffman disease. Am J Phys Med Rehabil 2007;86:349-355.Benson RC, Hardy KA, Gildengorin G, Hsia D. International survey of physician recommendation for
tracheostomy
for spinal muscular atrophy type 1.
Pediatr
Pulmonol
2012;47:606-611.
Blustein
, J. Doing the best for one’s child:
satisficing
versus optimizing
parentalism
.
Theor
Med
Bioeth
2012;33:199-205.
Bruno MA,
Bernheim
JL,
Ledoux
D, et al. A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority.
BMJ Open
2011;1:e000039.
Carr AJ, Gibson B, Robinson PG. Is quality of life determined by expectations of experience?
BMJ
2001;322:1240.
Diekema
DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention.
Theo Med
2004;25;243-264.
Gregoretti
C,
Ottonello G, Beatrice M, et al. Survival of patients with spinal muscular atrophy type 1. Pediatrics 2013;131;e1509-e1514.
54Slide55
References
Janse
AJ,
Bemke
RJBJ,
Uiterwaal CSPM, et al. Quality of life: patients and doctors don’t always agree: a meta-analysis. Jour of Clin Epidem 2004;57:653-661.Jonsen AR, Siegler M,
Winslade
W.
Clinical Ethics
, 7
th
Edition. McGraw-Hill, 2010.
The Josephson Institute.
http://josephsoninstitute.org/
. Last accessed 8/18/15.
Lam HS, Wong SPS, Liu FYB, et al. Attitudes toward neonatal intensive care treatment of preterm infants with a high risk of developing long-term disabilities.
Pediatrics
. 2009;123:1501-1508.
Saigal
S,
Stoskopf
BL,
Feeny
D, et al. Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents.
JAMA
. 199;281:1191-1197.
Thomas SM, Ford PJ, Weise KL, Worley S,
Kodish
, E. Not just little adults: a review of 102
paediatric
ethics consultations.
Acta
Paediatr
. 2015;104:529-534.
Wilfond
, B.
Tracheostomies
and assisted ventilation in children with profound disabilites: Navigating family and professional values. Pediatrics 2014;133;S44.
55Slide56
Questions? Comments?