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Allowing Natural Death. Is it To or For the Child?. “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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Allowing natural death
Allowing Natural Death

  • Is it To or For the Child?


“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


Learning objectives
Learning Objectives compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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; child’s current and future pain, cognitive function, current and future relationships.


Learning objectives1
Learning Objectives compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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?


Terminology
Terminology compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • Imply Omission or Withholding Specific Action:

    • Do Not Resuscitate - DNR

    • Do Not Intubate - DNI

    • Do Not Attempt Resuscitation - DNAR

    • Not For Resuscitation - NFR


Terminology1
Terminology compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • Nothing Implied:

    • Allow Natural Death - AND


Who decides
Who Decides? compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • Children and young people are individuals with the same rights of decision and confidentiality...both should be respected.

  • It isn’t 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.


Who decides1
Who Decides? compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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.


Who decides2
Who Decides? compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • Proxy Decision Makers make decisions when child/young person is unable:

    • Substitute: knows the patient well, and promotes patient’s expressed wishes.

    • Surrogate: do not know what the patient would want, and tasked with deciding in patient’s best interest.


Assessing best interest
Assessing Best Interest compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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.


Assessing best interest1
Assessing Best Interest compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • The views of other healthcare team members.

  • The clinician’s 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 person’s future options.


Breaking the news
Breaking the News compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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.


Breaking the news1
Breaking the News compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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.


Breaking the news2
Breaking the News compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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.


Breaking the news3
Breaking the News compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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.


Breaking the news4
Breaking the News compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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!


Breaking the news5
Breaking the News compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • Dialogue:

    • When communicating the news, states the facts, plain an simple. “The leukemia has spread.”

    • Acknowledge your own emotion, but remember it isn’t about you.

    • Acknowledge their emotions.


Breaking the news6
Breaking the News compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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.


Breaking the news7
Breaking the News compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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.


Models of care
Models of Care compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

Conflicting

Competitive

Curative

Curative

Palliative

Palliative


Models of care complementary
Models of Care compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.” Complementary

Patient

Palliation

Team

Diagnosis

Time


Breaking the news8
Breaking the News compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • Dialogue:

    • Palliative Care isn’t giving up.

    • Any child/young person that isn’t expected to live beyond 18 years should have palliative care as an ongoing component of their plan of care.


Breaking the news9
Breaking the News compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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.


Breaking the news10
Breaking the News compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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.


Breaking the news11
Breaking the News compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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.


Breaking the news12
Breaking the News compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

Prepare

Dialogue

Follow-up


The to for dilemma
The “To-For” Dilemma compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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.


The to for dilemma1
The “To-For” Dilemma compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

  • 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.


A dying child
A Dying Child compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

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!


Green, gold, and red, are floating all around me; compassionately, and collaboratively, as we strive to improve the quality of life for children including, when necessary, that part of life that is dying.”

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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