Brian S. Carter, MD Professor of Pediatrics University of Missouri - - PowerPoint PPT Presentation

Brian S. Carter, MD Professor of Pediatrics University of Missouri at Kansas City – School of Medicine Children’s Mercy Hospital-Kansas City Bioethics Center & Division of Neonatology

1) When faced with ethical challenges,

who decides?

2) Can I treat different individual cases

differently, or must I always treat clinically similar cases the same way?

3) Withholding & withdrawing life-

sustaining interventions

How do I feel?

 Am I living up to my professional expectations?  Do I have moral angst/distress and feel that I am

doing things that I shouldn’t?

What values are in conflict when I deal

with these matters?

 Personal? Professional? Societal?

How comfortable am I communicating

these matters?

 Is my work environment one that engenders

trust?

[a] 1st layer: “individual”

Patient centered physician & mother [parents] /fetus/infant

[b] 2nd layer: Role-related

Interdisciplinary Team Extended Family

[c] 3rd layer: institutional

Hospital

[d] 4th layer: Societal

External, political

[a]

[b]

[c] [d]

Reflects societal values and norms May be dictated by certain frameworks

 Social customs  Religious dictums  Legal directives

Reflects the evolution of family-centered

care

 The presence & voice of the parent(s)

 Are there other voices?

 The process of shared decision-making  The preferences of parents

versus

 The prerogatives of providers

 Must we always do CPR?  Is ongoing care futile?

 Should we remove the ventilator from this baby, who

has a severe IVH?

 Why did this baby receive palliative care and

the last baby with this condition had surgery?

 When is it permissible to withhold a potentially beneficial

therapy?

 When is it permissible to stop [withdraw] a given

therapy?

 Technology is a gift, we have waited so long for and can

now benefit so many, how can we not use it?

 Is it ever acceptable to forego medically assisted

nutrition and hydration?

Medical technology has grown from being a tool to becoming a companion and, in some cases, the master of physicians. Examples:

 Imperative of possibility & action  Imperative of commitment  Imperative of procedure  Imperative of demand  Imperative of the unknown  Imperative of a means as ends itself  Imperative of implementation … proliferation … and of

inappropriate use.

“Under conditions of uncertainty, interpretation of and response to uncertainty depend on…

• societal norms
• personal characteristics & experience
• values, and
• by the manner in which the questions are formulated or

risks are communicated. Physicians would do well to try to get a better understanding

• f these influences. They should also seek to get a better

understanding of the decision makers before them. Only then will they be able to inform their patients and their patients’ families about risk in a way they can understand.

Haward & Lorenz. Communicating risk under conditions of uncertainty: not as simple as it may seem. Acta Paediatrica 2011; 100:651-2.

 A beneficence standard – reflecting our attempts

to evaluate competing interests – and results in a decision to pursue one course of action over another because we believe it will lead to the best “net balance” of benefits…to the child.

 Best as “most fitting” – pragmatic.  Best as most superlative – even imaginable.  Best as “in light of all things considered” or “least

worse” option.

 Knowing what is “best” for a baby is always

determined by a proxy or surrogate.

 Knowing what is considered “harmful” may be

easier to agree upon among multiple parties.

 But how certain must we be?

Diekema DS. Parental refusals of medical treatment: the harm principle as threshold for state intervention. Theor Med Bioeth 2004;25(4):243–64. Gillis & Tobin. How certain are you, doctor? Pediatr Crit Care Med 2011; 12:71–72

 What counts as ‘‘benefit’’ for the patient?  What makes a life ‘‘worth living,’’ or constitutes

an acceptable ‘‘quality of life’’?

 PEARL: Rephrase for the chronically hospitalized or

bed-bound… “quality of their days”

 Who is best situated to make decisions for

children who are unable to decide for themselves?

 What criteria should be used in making these life

& death decisions?

 To what degree should societal factors influence

• r constrain individual parental or patient

choices?

Aulisio MP , et al. Crit Care Clin 2004

Non- treatment

• bligatory

Non treatment

• ptional

Treatment

• ptional or

investigational

Treatment is

• bligatory

TREAT DON’T TREAT

Parental

ental Dete termina rmination tion Zon

• ne of
• f Uncertainty

rtainty

Burden exceeds benefit Benefit exceeds burden

Where are you on this line? What is Possible, What is Right?

Health Care Professionals:

 Question their purpose and value.

 Why am I here?  What are we doing?

 Fractures communication.

 Within the health care team, between care team & families.  Raises questions: Why can’t “they” see what is happening?

 Plants seeds of suspicion & distrust of certain

clinicians, families, and clinical scenarios… contributes to staff turnover.

 Takes away from what caring professionals bring to

the next clinical encounter.

 Contributes to stress-burnout-depression continuum.  Brings about moral angst…a manifestation of

suffering.

Patient & Family:

 The patient & family are marginalized and no longer

significant participants in future decision making.

 Worsening communication. Raises questions: Futile

for whom? Futile in relation to what?

 Suspicion & distrust… Accuracy? What is your

agenda?

 Costs of care [rationing]?  An ICU bed?  Giving up; dashing hope; not caring…abandonment.

 Disallowing, or failing to recognize the moral, social

and ritualistic value of EOL care/procedures – even CPR

Zier LS, et al. CHEST 2009;136(7): 110-117

 Narrative Ethics

 Shifts focus from what works to what fits the story of this person/family  Is attentive to liminal space/time … moving through life  May redirect goals or frame them in a different light

 Virtue Ethics

 Asks what would the competent, honest, compassionate clinician do?  What virtues matter?

 Clinical Ethics

 Honors patient [parent] preference or interest insofar as possible or feasible  Does not demand unreasonable action simply because the option (possibility

to employ it) exists

 When feeling “stuck” – not knowing/understanding

what is going on now or what comes next.

 Families (and staff?) are grappling with uncertainty.  What (who, or where) does the demand come from?

 You may need to enlist the help of an ethics consultant, chaplain,

colleague rendering a 2nd opinion, or a palliative care consultant

 Doing “Everything!” might mean imagine what its like

to be me (empathy) and bears exploring together

 You need to know their story

Kopelman AE. Mount Sinai J Med; 73(3), May 2006:580-586. Hirni & Carter. JAMA Pediatr 2015;169:423-4.

How do we help each other to help support NICU families when their baby is at the end-of-life?

 Empathy and Trust-building  Accuracy in Diagnosis  Open Communication [transparency]  Interval Assessments & Prognostication  Anticipatory Guidance  Patience & Presence  Taking the Lead  Non-abandonment

Meet Aubrey…

• Term
• Prenatal Dx of giant omphalocele
• Postnatal diagnosis of VSD
• 5 mos hospitalization before electing

life-support withdrawal when his cardiac cath. demonstrated irreversible pulmonary hypertension

• Mom lived with him at the hospital

while Dad went back & forth to home and work 200 miles away, and big brother Wesley tried to cope

Why Were They in Such a Hurry to See Her Die?

Berg, Paulsen & Carter Am J Hosp Palliat Med June 2013;30:406

 Do I think this patient will go home?

 What [and when] have I told the family?  How sure am I? What is it based upon?

 Do I know the parents, their goals, and values?

 Does the family trust us?  Are they open to hearing about redirecting care?  Do I need to overcome language that might contribute to

conflict?

 e.g. do nothing, hopeless, stopping care, lethal, futile

 How can I attend to, partner with, lead or accompany

this patient & family through liminal places and times?

 What do I foresee as next steps?  Who can help them through the next threshold?

Reynolds S, et al: Thorac Surg Clin 2005;15: 469-480.

TECHNOLOGY AND AN “ETHICAL LIMIT”

“An ethics of nonpower is

• bviously that human beings

agree not to do everything they are able to do.”

Ellul J. The Ethics of Nonpower.

In, Kranzberg M. Ethics in an Age of Pervasive Technology (1980)

 Berg SF

, Paulsen OG, Carter BS. Why Were They in Such a Hurry to See Her Die? Am J Hosp Palliat Care 2013; 30:406-8.

 Blackhall LJ. Must we always use CPR? N Engl J Med 1987;

317:1281-5.

 Carter BS, Brown JB, Brown S, Meyer EC. Four wishes for

• Aubrey. J Perinatol 2012; 32:10–14.

 Haward MF

, Lorenz JM. Communicating risk under conditions of uncertainty: not as simple as it may seem. Acta Paediatrica 2011; 100:651-2.

 Hofmann B. Is there a technological imperative in health

care? Internat J Technol Assess Health Care 2002; 18:3:675–689.

 Macdonald ME, Liben S, Carnevale FA, et al. Parental

perspectives on hospital staff members’ acts of kindness and commemoration after a child’s death. Pediatrics 2005; 116:884-90.

The following presentation is taken from the LCPC Symposium 2016: When Caring Never Stops – Meeting the Needs of Vulnerable Babies