Transcript First Person Authorization, Learning from Our Own

First Person Authorization:
A Both/And Proposition
Jill M. Ellefson
Director, Organ Donation and Transplant Service Line
Questions We’re 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?
Either/Or
vs.
Both/And
clearly an either/or
proposition…
the philosophy of first person
authorization is abundant with
both/and
We advocate for BOTH the donor family
AND those on the waiting list
We honor BOTH the decision of the patient
AND support the donor family
We encourage the public to BOTH sign up
on the registry AND talk to their family
the national data and
our local experience supports
this
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.
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.
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.
The Transition
Public and political support for
transplantation has grown.
State and federal government have
become active supporters of
transplantation.
CMS and Joint Commission’s
mandated requests were one
manifestation of this support.
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.
UAGA Enactment Status
Source:
www.uniformelaws.org
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.
Authorization by the Individual:
5 Ways to Document
What is required for a valid donation by
the deceased?
1.
2.
3.
4.
5.
Driver’s license or identification card
Will
Witnessed communication when terminally ill
Donor card or record of donation
Donor registry
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.
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.
First Person Authorization:
Best 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.
First Person Authorization:
Best 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.
First Person Authorization:
Best 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.
FPA
CASE STUDIES
UW Hospital
Ministry St. Joseph’s Hospital
UW Hospital
FPA Case Study
Christy Hunter, RN, BSN, CCRN
Pamela Chambers, RN, BSN, CPTC
History
•
•
•
•
Early 20’s male, “John Doe”
Rollover trauma/crash
Unconscious, spontaneous respirations
UW Hospital ED via Med Flight
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
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
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
Approach/Consent
• Huddle
– Within UW OTD
– Between UW OTD and hospital staff
• Family meeting
– Sue, Pamela, NP, RN, patient’s stepfather
– Mother refused to attend
Approach/Consent (continued)
• Conversation
– How FPA aligned with patient’s life
– Explained not having middle initial
• Stepfather’s response
– Language: “Coercive,” “scheme,” “persuade”
– Asked that UW OTD proceed without further
persuasion
– Wished to remain unbiased
– **Family member listed for heart transplant
Next Steps
• Huddles
– OTD staff, UW hospital staff, UW Risk
Management, UW legal department, UW
COO
• FPA to be upheld
– “This isn’t a legal issue; it’s the law.”
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
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 patient’s mother
– Uncertain about receiving aftercare
Into the Evening
• Brain death declared overnight
– Ordered diagnostics for cardiothoracic (EKG,
echo, bronch, O2 challenge)
• Family’s distress elevated
• UW OTD foregoes further evaluation
• OR time set
Procurement Outcome
•
•
•
•
•
Kidneys
Pancreas
Liver
Corneas
Tissue
Family Aftercare
• OPC received call from stepmother day of
procurement for outcome
• Requested aftercare
• Attended the Governor’s Ceremony
• UW OTD receives letter
• Agreed for UW OTD to share their story with all
of you today
Learning Points
1. Have patient’s full name (+MI) and DOB when
making referral
2. Know donor eligibility before approaching
family
3. FPA-approaches focus on support, not
decision
4. Hospital and UW OTD unified team
- Assigned roles vs. bedside RN perceived as
“bad guy”
Learning Points
5. Reconcile how patient’s life experiences align
with being a donor
6. Fully honor the donor’s decision
7. Staffing ratio 2:1
8. UW Leadership supported FPA
“A New Day, A New Way for FPA”
(because it rhymes) 
Ministry St. Joseph’s Hospital
FPA Case Study
Cindy Kolzow,
RN, Donation Liaison
Ministry St. Joseph’s Hospital - Marshfield
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”
• 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
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
What insights have you
gained from this presentation
that will help you facilitate
first person authorization?
The Response: “He/She Didn’t
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 one’s 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 patient’s 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)
The Response: “He/She Didn’t
Want to Be a Donor”
“He said he didn’t want to be a donor.”
“So he was against donation, is that correct?”
“No, he wasn’t against donation, he just didn’t think it was for
him.”
“I don’t 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
you’ll know.”
Verble M, Worth J. Addressing the Unintended Consequences of First
Person Consent and Donor Registries. Progress in Transplantation.
2012; 22(1)
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.
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 family’s
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.
Our Commitment...