Allowing Natural Death

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Allowing Natural Death

• Is it To or For the Child?

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• Let us communicate with each other clearly,
  compassionately, and collaboratively, as we
  strive to improve the quality of life for
  children including, when necessary, that part of
  life that is dying. Chris Feudtner, MD

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Learning Objectives

• Understand that law and ethics both play a role
  by providing parents with greater discretion when
  prognosis and quality of life are poor.
• Understand that factors that should be consider
  when determining benefits of alternative therapy
  may include childs current and future pain,
  cognitive function, current and future
  relationships.

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Learning Objectives

• Understand that individuals caring for the same
  child may arrive at different conclusions
  regarding treatment options.
• Anticipate the chronic disease trajectory and be
  able to help guide family towards specific goals
  or objectives.
• When is it Ok to do something to a child vs.
  doing something for a child?

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Terminology

• Imply Omission or Withholding Specific Action
• Do Not Resuscitate - DNR
• Do Not Intubate - DNI
• Do Not Attempt Resuscitation - DNAR
• Not For Resuscitation - NFR

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Terminology

• Nothing Implied
• Allow Natural Death - AND

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Who Decides?

• Children and young people are individuals with
  the same rights of decision and
  confidentiality...both should be respected.
• It isnt as much who decides as it is who
  participates in the decision.
• Some states have Mature Minor Rule allows a
  sufficiently intelligent and mature child to
  consent to treatment.

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Who Decides?

• The child/young person may not be emotionally
  able to make difficult decisions, but may assent
  to lesser decisions (i.e. Which arm do you want
  blood drawn from?)
• Allowing participation in smaller decisions will
  go a long way to lessen anxiety and develop trust.

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Who Decides?

• Proxy Decision Makers make decisions when
  child/young person is unable
• Substitute knows the patient well, and promotes
  patients expressed wishes.
• Surrogate do not know what the patient would
  want, and tasked with deciding in patients best
  interest.

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Assessing Best Interest

• The views of the child/young person (if expressed
  now or previously).
• The views of parents.
• The views of others close to the child/young
  person.
• The cultural, religious, beliefs, values of
  child/parents.

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Assessing Best Interest

• The views of other healthcare team members.
• The clinicians obligation is to the child/young
  person, not society or system.
• If more than one choice, which one will be least
  restrictive to the child/young persons future
  options.

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Breaking the News

• Planning
• Schedule meeting with child/young person, all
  family members and multi-disciplinary team.
• Encourage family and child to write down any
  questions they may have.
• Reserve a room for privacy with comfortable
  seating for all.

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Breaking the News

• Planning
• Meet with multi-disciplinary team in advance to
  discuss specifics.
• If there are differences in opinion within team
  they must be resolved, or plan on presenting
  those to family if appropriate.
• Have all medical information (records, labs,
  studies) on hand.

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Breaking the News

• Beginning
• Thank you for coming.
• Introductions of all present.
• Briefly go over agenda as prepared and invite
  family and child/young person to contribute items.

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Breaking the News

• Beginning
• Inform all present that no question is
  inappropriate, and that everything on the agenda
  WILL be addressed to their satisfaction.
• Have every clinician involved give a brief
  summary of clinical status.

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Breaking the News

• Dialogue
• Invite family and child/young person to express
  feelings and/or thoughts.
• The Warning Shot The results of the test is
  back, and I am afraid that the news is not good.
• Silence IS Golden!

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Breaking the News

• Dialogue
• When communicating the news, states the facts,
  plain an simple. The leukemia has spread.
• Acknowledge your own emotion, but remember it
  isnt about you.
• Acknowledge their emotions.

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Breaking the News

• Dialogue
• Answer all questions truthfully and completely.
• It is OK to answer the question that everyone is
  afraid to ask.
• If differing treatment options among staff, give
  those individuals the opportunity to present in a
  concise manner.

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Breaking the News

• Dialogue
• Take time to list their hopes and wishes on a
  spectrum.
• This may very well be a framework that can be
  used to help make short and long term decisions.
• If indicated, define palliative and
  non-palliative on the spectrum.

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Models of Care
Conflicting
Competitive
Curative
Curative
Palliative
Palliative
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Models of CareComplementary
Patient
Palliation
Team
Diagnosis
Time
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Breaking the News

• Dialogue
• Palliative Care isnt giving up.
• Any child/young person that isnt expected to
  live beyond 18 years should have palliative care
  as an ongoing component of their plan of care.

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Breaking the News

• Dialogue
• Help family understand that equally loving
  parents may choose differently.
• At some point, a consensus will likely emerge.
• If a consensus has not been achieved, what
  additional information is needed? Or....lets all
  think about it and meet again.

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Breaking the News

• Concluding
• Review the plan of care and goals, and ensure
  that all agree.
• Review all of the items of the agenda to make
  sure all were addressed.
• If no consensus, then plan for another meeting.

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Breaking the News

• Concluding
• Say Good Bye, but do not abandon. Child and
  family should know that you or someone on the
  team is always available.
• For Team Find someone to debrief with.

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Breaking the News
Prepare
Dialogue
Follow-up
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The To-For Dilemma

• What is done To the child/young person
• The decision is usually being made based on a
  non-patient centered desire or need.
• Caregivers usually stand to gain more from action
  than from inaction.
• The child/young person will usually feel as if
  they are having things done to them.

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The To-For Dilemma

• What is done For the child/young person
• Most likely will not prolong the inevitable.
• Obligated to provide palliative care, including
  symptom control, and emotional, psychological and
  spiritual needs of child/young person and family.
• Will foster coping and open communication between
  child, family and team.

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A Dying Child

• Mother, I'm tired, and I would fain be sleeping
• Let me repose upon thy bosom sick
• But promise me that thou wilt leave off weeping,
• Because thy tears fall hot upon my cheek.
• Here it is cold the tempest raveth madly
• But in my dreams all is so wondrous bright
• I see the angel-children smiling gladly,
• When from my weary eyes I shut out light.
• Mother, one stands beside me now! and, listen!
• Dost thou not hear the music's sweet accord?
• See how his white wings beautifully glisten?
• Surely those wings were given him by the Lord!

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• Green, gold, and red, are floating all around me
• They are the flowers the angel scattereth.
• Should I have also wings while life has bound me?
• Or, mother, are they given alone in death?
• Why dost thou clasp me as if I were going?
• Why dost thou press thy cheek so unto mine?
• Thy cheek is hot, and yet thy tears are flowing!
• I will, dear mother, will be always thine!
• Do not sigh thus it marreth my reposing
• But if thou weep, then I must weep with thee!
• Ah, I am tired my weary eyes are closing
• Look, mother, look! the angel kisseth me!
• By Hans Christian Andersen

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