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] 1 st layer: “individual” Patient centered physician & mother [parents] /fetus/infant [b] 2 nd layer: Role-related Interdisciplinary Team Extended Family [a] [b] [c] 3 rd layer: institutional [c] Hospital [d] [d] 4 th layer: Societal External, political

 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 of 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 or constrain individual parental or patient choices? Aulisio MP , et al. Crit Care Clin 2004

What is Possible , What is Right ? P arental ental Burden Benefit exceeds Dete termina rmination tion exceeds benefit burden Zon one of of Uncertainty rtainty Non Treatment Non- Treatment treatment optional or treatment is investigational optional obligatory obligatory DON’T TREAT TREAT Where are you on this line?

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 2 nd 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 obviously 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)