First Person Authorization: A Both/And Proposition

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First Person AuthorizationA Both/And Proposition

• Jill M. Ellefson
• Director, Organ Donation and Transplant Service
  Line

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Questions Were Running On

• What is the background and philosophy of first
  person authorization (FPA)?
• What are the best practices for implementing FPA?
• How can I best prepare myself and my colleagues?

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Either/Orvs.Both/And
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(No Transcript)
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clearly an either/or proposition
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the philosophy of first person authorization is
abundant with both/and
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We advocate for BOTH the donor family AND those
on the waiting listWe honor BOTH the decision
of the patient AND support the donor familyWe
encourage the public to BOTH sign up on the
registry AND talk to their family
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the national data and our local experience
supports this
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Background

• Since the early days of transplant the law has
  recognized the right of individuals to control
  the use of their organs for transplantation after
  death.
• The original Uniform Anatomical Gift Act (1968)
  recognized this Section 2 (a) Any individual of
  sound mind and 18 years of age or more may give
  all or any part of his body  for any purposes
  specified in section 3, the gift to take effect
  upon death.
• This was enacted into Wisconsin law in 1971 with
  modification for family override for donating an
  entire body for scientific research as s.
  155.08(2)(a), Wis. Stat.
• Thus, the 1971 family override provision did not
  apply to transplantation or therapy.

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• The entire family override provision was removed
  when the Wisconsin Anatomical Gift law was
  amended in 1990. 1989 Wisconsin Act 298, s. 3.
• Illinois and Michigan state law follows a
  similar historical path.

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• In the early days of organ donation, it was
  common practice for transplant centers/OPOs to
  decline first person donations when the surviving
  next of kin objected.
• This was not due to any legal constraint. It was
  due to the effort to build and maintain public
  support for transplant.

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The Transition

• Public and political support for transplantation
  has grown.
• State and federal government have become active
  supporters of transplantation.
• CMS and Joint Commissions mandated requests
  were one manifestation of this support.

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• Attention has now been focused on removing
  barriers to donation.
• First person authorization is being encouraged
  through mandated inquiries at the time of driving
  license renewals, donation registries and other
  means.
• The 2008 amendments expressly prohibit family
  override of first person authorization with only
  one exception for parental override of some
  donations made by minors.

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UAGA Enactment Status
Source www.uniformelaws.org
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First Person Authorization

• If there is a valid authorization from the
  individual whose organs are being donated, no
  other consent is required.
• If the individual was an adult when making the
  donation, no one can veto the donation.
• If the individual was a minor when making the
  donation, in some circumstance a parent can veto
  the donation.

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Authorization by the Individual5 Ways to
Document

• What is required for a valid donation by the
  deceased?
• Drivers license or identification card
• Will
• Witnessed communication when terminally ill
• Donor card or record of donation
• Donor registry

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Revocation

• Regarding the registry, individuals can remove
  their name from the registry via a website, mail,
  or at the DMV.
• A reasonable effort needs to be made to
  contact the person who would be authorized to
  donate in the absence of first person
  authorization. The contacted person should be
  asked if s/he is aware of any revocation or
  amendment.

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Revocation

• If you are told that the gift is amended or
  revoked then ask for the evidence. If there is
  none, then the donation remains effective.
• Note that revocation requires some evidence
  beyond an assertion that the person changed their
  mind.

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First Person AuthorizationBest Practices

• UW OTD/tissue/eye bank personnel are authorized
  to look up individuals via a website. We will
  print a certificate from this website as
  documentation of the authorization.
• Donor hospital personnel/designated requestors
  should check with the UW OTD/tissue/eye bank to
  determine registry status prior to speaking with
  the family.

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First Person AuthorizationBest Practices

• First person authorization information can be
  sought from other states.
• Transplant/research/education authorization and
  the ability to document specific limitations
  varies by state. Ensure clarification prior to
  speaking with family.
• The only way to make this a BOTH/AND proposition
  is to know the registry status of the individual
  prior to speaking with the family.

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First Person AuthorizationBest Practices

• Conversation best practices refer to handout.
• Recognizing the key role of the DMV 96 of
  individuals that join the registry do so at the
  DMV.

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FPACASE STUDIESUW Hospital Ministry St.
Josephs Hospital
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UW Hospital FPA Case Study

• Christy Hunter, RN, BSN, CCRN
• Pamela Chambers, RN, BSN, CPTC

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History

• Early 20s male, John Doe
• Rollover trauma/crash
• Unconscious, spontaneous respirations
• UW Hospital ED via Med Flight

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Admission

• Head CT Traumatic brain injury
• Sent immediately to OR
• left hemicraniectomy, SDH evacuation, EVD
  placement
• Transferred to Neuro ICU
• Registry status unknown d/t no middle initial
• Determining eligibility to be organ donor begins

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The Following Morning

• Obtained first and last names and DOB
• Deemed non-survivable injury
• Brain death testing late afternoon
• Family open to organ donation
• OPC to determine final eligibility
• UW OTD to speak with family when appropriate

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That Same Afternoon

• No brainstem reflexes
• Mother says no to organ donation
• Received middle initial from nurse
• Patient is FPA on Wisconsin Registry
• UW OTD staff to come to UWHC

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Approach/Consent

• Huddle
• Within UW OTD
• Between UW OTD and hospital staff
• Family meeting
• Sue, Pamela, NP, RN, patients stepfather
• Mother refused to attend

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Approach/Consent (continued)

• Conversation
• How FPA aligned with patients life
• Explained not having middle initial
• Stepfathers response
• Language Coercive, scheme, persuade
• Asked that UW OTD proceed without further
  persuasion
• Wished to remain unbiased
• Family member listed for heart transplant

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Next Steps

• Huddles
• OTD staff, UW hospital staff, UW Risk Management,
  UW legal department, UW COO
• FPA to be upheld
• This isnt a legal issue its the law.

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Moving Forward

• ICU Huddle POC/Assignments
• Bedside RN to focus on patient and family support
• Nurse Manager and Charge RN to focus on donor
  management
• Charge RN and NP to speak with family
• Seek historian for med/soc interview

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Medical/Social Interview

• Father and stepmother
• Shared son wanted to be a donor before going to
  military
• Patient convinced grandmother to be donor
• Concerned about upsetting patients mother
• Uncertain about receiving aftercare

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Into the Evening

• Brain death declared overnight
• Ordered diagnostics for cardiothoracic (EKG,
  echo, bronch, O2 challenge)
• Familys distress elevated
• UW OTD foregoes further evaluation
• OR time set

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Procurement Outcome

• Kidneys
• Pancreas
• Liver
• Corneas
• Tissue

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Family Aftercare

• OPC received call from stepmother day of
  procurement for outcome
• Requested aftercare
• Attended the Governors Ceremony
• UW OTD receives letter
• Agreed for UW OTD to share their story with all
  of you today

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Learning Points

• Have patients full name (MI) and DOB when
  making referral
• Know donor eligibility before approaching family
• FPA-approaches focus on support, not decision
• Hospital and UW OTD unified team
• - Assigned roles vs. bedside RN perceived as
  bad guy

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Learning Points

1. Reconcile how patients life experiences align
   with being a donor
2. Fully honor the donors decision
3. Staffing ratio 21
4. UW Leadership supported FPA

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• A New Day, A New Way for FPA(because it
  rhymes) ?

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Ministry St. Josephs Hospital FPA Case Study

• Cindy Kolzow,
• RN, Donation Liaison
• Ministry St. Josephs Hospital - Marshfield

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Case Background

• 42 y.o. male with ruptured esophageal varicies
• Day 6 Cerebral Edema ? lost reflexes but still
  breathing over vent
• Called Statline
• Patient had FPA
• NOK/father struggling with poor prognosis
• Waiting for a miracle

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• Day 8 Approached family about eligibility to
  donate/FPA and both brain dead (BD) and donation
  after cardiac death (DCD) possible
• Relief their miracle had come!
• Patient progressed to brain death overnight
• Great physician response
• Day 9 Donated 2 kidneys

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Key Takeaways

• Because FPA was presented from the beginning,
  approach was easier
• Decision made RELIEF
• No burden on family to make/question decision
• Tangible memento to keep - Record of Gift
• If not brain dead, helpful to outline both BD and
  DCD

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What insights have you gained from this
presentation that will help you facilitate first
person authorization?
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The Response He/She Didnt Want to Be a Donor

• Recognize this statement has several possible
  meanings
• 1) The patient did make this statement, had
  thought about it in depth and had a deep
  commitment to not donating.
• 2) The patient said this in a joking way, as a
  flippant or fleeting comment as a common
  defense mechanism about ones own demise.
• 3) The patient said this on some occasion but
  had bad information, ex thinking he/she was too
  old to donate.
• 4) The patient did not say anything about not
  being a donor but that the family knows that
  saying that is the fastest way to end the
  conversation.
• 5) The voiced objection is that of the family
  and is put into the deceased patients mouth
  because the family does not want to voice their
  concern.

Verble M, Worth J. Addressing the Unintended
Consequences of First Person Consent and Donor
Registries. Progress in Transplantation. 2012
22(1)
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The Response He/She Didnt Want to Be a Donor

• He said he didnt want to be a donor.
• So he was against donation, is that correct?
• No, he wasnt against donation, he just didnt
  think it was for him.
• I dont quite understand that. Could you tell
  me a little more about his feelings?
• Guess at the underlying emotion or assumption
• So you think he was worried about the operation
  itself?
• A lot of people have that concern. I can see
  why he might worry about that. Let me tell you
  what actually happens so youll know.

Verble M, Worth J. Addressing the Unintended
Consequences of First Person Consent and Donor
Registries. Progress in Transplantation. 2012
22(1)
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A word about timing...

• Beyond the FPA scenario, the data shows a
  significant trend of no consents with the
  underlying concern being timing.
• In a true patient and family-centered care model,
  we as providers should be building our processes
  and workflows to meet the patient and family
  needs.

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Best Practices for Addressing Timing

• Recognize that timing expectations begin very
  early in the patient/family experience. When end
  of life decisions are imminent, some families are
  already thinking about next steps. The donation
  discussion may be happening too late in the
  process and/or the familys timing expectations
  for withdrawal of life-sustaining therapies has
  not been inclusive of timing for donation.
• What are your needs regarding timing? Let me
  work with our team on that and come back with the
  details.
• Ask UW OTD to speak directly with the family
  about timing and process.
• Ensure a mutually agreed upon communication plan
  between the UW OTD coordinator and nurse so
  everyone is apprised of progress during
  coordination. Proactively share updates with the
  family.
• Utilize the Phases of Donation handout as
  needed.

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Our Commitment...