Embracing the Elephant in the Room:
Strategies for Dealing with Ethical
Issues at the End of Life
Debbie Lafond, DNP, PNP-BC, CPON, CHPPN
February 5, 2014
1
Speaker Disclosure Statement
• Debbie Lafond, DNP, PNP-BC, CPON, CHPPN is
a nurse practitioner at Children’s National Health
System in Washington, DC.
• She has no relationships to disclose and no offlabel use will be discussed.
2
Objectives
• To identify and discuss four common ethical situations
in caring for children at end of life
• To discuss decision making and apply a tool for ethical
decision making in a case study
• To describe issues of child and parental preferences in
advanced care planning and strategies to facilitate
goals of care discussions
• To identify and discuss issues of justice, conflict and
research in palliative and end of life care for children
with life-limiting illness
3
Ethics in Pediatric Palliative Care
• What ought to be
• Determining the best course of action
• Ethical issues are inevitable
– Minors/Assent
– Best interest standards
• Societal changes
4
Your Role in Addressing Ethical Issues
• Promoting family-centered care
• Respecting preferences
• Role models of clinical proficiency,
integrity and compassion
• Balancing competing objectives
5
Standards of Professional Practice
• AMA Code of Ethics
• ANA Code of Ethics
• Nurse Practice Act
• Standards for professional organizations
– AAP
– APHON
– NCHPCO
6
Issues of Decision-Making and Communication
•
•
•
•
Capacity
Consent
Assent
Confidentiality
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Decision-Making and Communication (cont.)
• Disclosure
– Previous belief in not discussing diagnosis
– Explore reasons for not disclosing
– The CHILD’S right not to know
Hinds et al., 2010
8
Common Ethical Issues in Palliative Care
• Decision making
• Transitioning goals of care
• Withholding or withdrawal of life sustaining
interventions
• Artificial fluid and nutrition
• The doctrine of double effect
• Religious or cultural objections
• Declaring death, organ donation, and autopsy
• Research
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Spectrum of approaches to influencing
health-related behavior
Prohibit
Actively
Discourage
Actively
Promote
Require
Don’t
Discuss
Financial
Disincentives
Financial
Incentives
Provide
negative
information
Provide
positive
information
Wilfond, 2014
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Wilfond, 2014
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Facilitating Ethical and Legal Practice
The 4 Box Method
Medical
Indications
Patient
Preferences
Quality
of Life
Contextual
Features
Jonsen et al., 2010
12
Medical Indications
• Indications for and against the
intervention
• Reflect the goals of care
• Common ethical dilemmas
Jonsen et al., 2010
13
Child and Family Preferences
• Principle of respect for persons
– Autonomy, privacy, veracity
• Assess child/family understanding
Jonsen et al., 2010
14
Quality of Life (QOL)
• Evaluation of prior QOL
• Expected QOL with and without
treatment
• Common ethical dilemmas addressing
QOL
Jonsen et al., 2010
15
Contextual Features
• Social, legal, economic and institutional
circumstances
• Common ethical dilemmas
Jonsen et al., 2010
16
Julie’s Story
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Case Study - Julie’s Story
• 16 year old young woman with an Anaplastic Astrocytoma diagnosed at the age of 9
years of age
• Received standard therapy with craniotomy (Gross total resection), Temozolomide
during and after focal radiation therapy
• Recurrence at age 12 – Craniotomy (Gross total resection), High dose chemotherapy
with autologous stem cell transplant
- High morbidity with lengthy hospitalizations and extended PICU stays
- Intubation and ventilation → BiPAP
• Recurrence at age 14 years – Craniotomy (Gross total resection), Re-irradiation
therapy
• Progression at age 15 – Enrolled on Phase I clinical trial → Progression after 4 months
Enrolled on 2nd Phase I clinical trial → Progression after 2 cycles
• Progression at age 16 – Julie makes decision for no further therapy
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Julie’s Case – The Ethical Issues
Julie and parents have a strained relationship that pre-dated recent recurrences
Parents insist that curative intent therapy be continued
- Parents have a deep Catholic faith and use this as a basis for decisions
Julie has two siblings:
- an older sister (Susie – age 20) and a younger brother (Jonathan – age 13)
- Susie gets along well with her parents and is Julie’s confidant
- Jonathan is a quiet and introspective young man who rarely comes to the hospital
Julie has been approached several times to discuss her wishes and goals of care
but declines to discuss
- Julie states empathically to APN that she does NOT want her parents to make
her decisions as they will do anything to keep her alive
- When pushed, Julie finally states she wants Susie to be her surrogate decision
maker
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Ethical Issue #1 – Decision Making
• Who is making the decisions?
-
Parents/Guardian
Other surrogate
Adolescent or young adult
Child
Others involved
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Ethical Issue # 2 – Goals of Care
• Prolongation of life
– Curative intent
– Acute therapeutic care
– Life sustaining treatments (LST)
– What about cases of uncertainty
• Futility
Jonsen et al., 2010; Prince-Paul & Daly, 2010
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Goals of care in Pediatric Oncology
Cure
Prolong life Prolong life
Comfort
Morbidity
High
Moderate
Mild
Minimal
Psychological
attitude
Win
Fight
Live with it
Embrace
Response
Arrest growth
None
Tumor effect
Eradicate
Hope Hope Hope Hope
Baker, 2013
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Ethical Issue # 2 – Goals of Care
•
•
•
•
Do Not Resuscitation (DNR)
Allow Natural Death (AND)
Medical Futility
Texas law – unilateral DNR decisions?
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Ethical Issue # 2 – Goals of Care
• Assisted death
• Euthanasia
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Ethical Issue # 3 – Withholding/Withdrawal
• Withholding/withdrawing of medical
interventions
– Balancing benefits and burdens
– Withdrawal of treatment is NOT withdrawal
of care
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Ethical Issue # 4 – Artificial Fluids and Nutrition
• Controversial
• Interpretations in context of parental, religious
and medical beliefs
• Decisions may be impacted by:
- awareness of hunger
- ability to tolerate enteral feeds
- opinions about prolonging the dying process
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Ethical Issue # 5 - Principle of Double Effect
• An ethically permissible effect can be
allowed, even if the ethically
undesirable one will inevitably follow.
Jonsen et al., 2010
27
Ethical Issue # 6 – Religion and Culture
•
•
•
•
•
•
Role of the spiritual leader in decision making
Balancing hope
Respecting rituals
Managing conflict
Medical obligations for treatment
Parental rights versus rights of the child who may
or may not embrace same religious or cultural
beliefs
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Ethical Issue # 7 – Death, organ donation, and autopsy
• Neurologic criteria
• Cardiac criteria
• Who should discuss organ donation?
• When to discuss autopsy?
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Issues of Justice in Palliative Care
• Provision of quality palliative care
• Costs of palliative care
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Research In Pediatric Care
• Is research appropriate?
Informed consent
• National Commission for Protection of
Human Subjects
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Authority of Parents
• Children are deemed legally capable of
consent at age 18
• Challenge of determining relevance and
weight of parental and patient
preferences
Jonsen et al., 2010
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Standard for Parental Preferences
• Parents as moral and legal agents
• Parents evaluation of treatment efficacy
or futility
• Instances of parent and physician
conflict
Jonsen et al., 2010
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Managing Disagreement
• Parent – child conflict
• Minors
• Legal issues, etc.
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Managing Disagreement (cont.)
• Parent – parent
conflict
• Parent – physician
conflict
35
Organizational Ethics & Legal Practices
• Organizational ethics
• Ethics committees and consultation
– Education
– Policy development
– Case consultation
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Back to Julie…
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Understand their Experience
• Impact of illness on patient and family life
– Perception of suffering informs decision making
– Quality of life is a greater factor in decision making as
the illness advances
– Values, fears, and hopes influence decision making
– Uncertainty about the future is a great source of
distress
• Prompt
– “How has being sick been for your child and your
family?”
– “What are the most difficult things you and your family
have had to endure during this time?”
Baker, 2013
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Understand Values
• Values
– Personal beliefs that people consider important, and to
which they are emotionally attached
– Subjective, evolve over time as a result of personal
experiences
– Give meaning to a person’s life
– May dictate care preferences
• Prompt
– “How do you define ‘Being a Good Parent’ to your child?”
– “How can we as a staff help you accomplish this?”
– “Given your understanding of this new recurrence, what is
most important for you and your family?”
Baker, 2013
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Understand Hope
• Hope
– Quality that sustains the person in the presence of uncertainty
– A response to severe distress that facilitates adaptation to a
situation that can not be controlled
– A desire of some good, accompanied with an expectation of
obtaining it, or a belief that it is obtainable
– Presupposes an accurate assessment and acknowledgment of the
reality of the situation
– May dictate care preferences
• Prompt
– “What are your hopes for your child and family?”
– “What else are you hoping for?”
Baker, 2013
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Conclusion
• Engage in a process of ethical discernment
• Apply principles of ethics
• Use ethical process to seek balance in
decision-making
• Advocate for children and families
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The Elephant in the Room
There’s an elephant in the room.
It’s large and squatting, so it’s hard to get round it.
Yet we squeeze by with, “How are you?” and “I’m fine,”
And a thousand other forms of trivial chatter.
We talk about the weather. We talk about work.
We talk about everything else, except that elephant in the room.
There’s an elephant in the room.
We all know it’s there.
We’re thinking about the elephant as we talk together.
It’s constantly on our minds. For, you see, it is a very large elephant.
It has hurt us all.
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But we don’t talk about the elephant in the room.
Oh, please say his (her) name.
Oh, please, say his (her) name again.
Oh please, talk about the elephant in the room.
For if we talk about his (her) death,
Perhaps we can talk about his (her) life.
Can I say his (her) name to you and not have you look away?
For if I cannot, then you are leaving me………
alone……..
in a room…..
With an elephant…..
Terry Kettering
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References
• Basu, RK. (2013). End-of-life care in pediatrics: ethics, controversies, and
optimizing the quality of death. Pediatric Clinics of North America. 60, 725-739.
• Clark JD & Dudzinski DM. (2013). The culture of dysthanasia: attempting CPR in
terminally ill children. Pediatrics. 131(3), 572-580.
• Field MJ, Behrman RE eds for the Institute of Medicine Committee on Palliative
and End of Life care for Children and Their Families. (2003). When children die:
improving palliative care and end of life care for children and their families.
Washington, DC: National Academies Press.
• Guedert JM & Grossman S. (2012). Ethical problems in pediatrics: what does the
setting of care and education show us? BMC Medical Ethics. 13(2), 1-9.
• Rushton, CH. (2004). Ethics and palliative care in pediatrics. American Journal of
Nursing. 104(4), 54-63.
• Sharman M, Meert KL, & Sarnaik AP. (2005). What influences parents’ decisions
to limit or withdraw life support? Pediatric Critical Care Medicine. 6(5), 513-518.
• Wainwright P & Gallagher A. (2007). Ethical aspects of withdrawing and
withholding treatment. Nursing Standard. 21(33), 46-50.
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