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Correspondence and Direct Contact between Donor Families and Recipients (5.02)

Correspondence and Direct Contact between Donor Families and Recipients (5.02) - Policies, Administrative, UWHC, Department Specific, UW Organ and Tissue Donation

5.02



POLICY
Established Date: July 2008
Effective Date: January 2018
Title: Correspondence and Direct Contact Between
Donor Families and Recipients
Policy Number: 5.02

Electronically Approved By: Michael E. Anderson, PA-C Anthony M. D’Alessandro, M.D.
Executive Director Medical Director


Page 1 of 5
PURPOSE

The purpose of this policy is to define the correspondence program that facilitates the exchange of letters
between donor families and recipients, and the process of establishing direct contact between donor family
members and organ transplant recipients through the University of Wisconsin Organ and Tissue Donation
(UW OTD). UW OTD additionally works with external OPOs to facilitate correspondence with donor family
members and recipients from other national programs.

UW OTD donor family support services (DFSS) staff will facilitate correspondence and direct contact in
accordance with this policy, UWHC policy 4.13, and all applicable regulations.

DEFINITIONS

Designated donor family member (DFM): An individual who has been identified as a key person involved
with the donor patient and/or the donation event. This association may be as the legal next of kin and/or
the healthcare power of attorney, spouse, significant other, parent, child, sibling, caretaker, friend, etc.
The purpose of this identification is to determine participation in the DFSS program as outlined in UW OTD
policy 5.01. The same DFM identified in policy 5.01 for the DFSS program will be the DFM that will
participate in the correspondence program.

Recipient: An individual who has received a transplanted organ from a deceased organ donor.

Sender: The individual that is sending correspondence to another party.

Receiver: The individual that will receive correspondence from another party.

FORMS

UWHC Organ Procurement Organization - Transplant Recipient Consent for the Release of Information
UWHC Organ Procurement Organization - Donor Family Consent for the Release of Information

POLICY

Participation in the Correspondence Program



POLICY
Established Date: July 2008
Effective Date: January 2018
Title: Correspondence and Direct Contact Between
Donor Families and Recipients
Policy Number: 5.02

Electronically Approved By: Michael E. Anderson, PA-C Anthony M. D’Alessandro, M.D.
Executive Director Medical Director


Page 2 of 5
A. DFM for Donor in Spirit patients will not participate in the correspondence program as there are
no transplant recipients. Reference UW OTD policy 5.01 for the definition of a donor in spirit.
B. All DFM for organ donor patients that will participate in the DFSS program per UW OTD policy
5.01 will be offered the opportunity to exchange anonymous correspondence with all recipients.
1. DFM may choose to send correspondence to recipients at any time after the donation
event; there are no timeframes or time limits.
2. All DFM will be “opt-in” by default to receive all correspondence.
3. DFM may decline participation in any part of the correspondence program at any time;
“opt-out.” This may include declining to receive correspondence from all or select
recipients, or declining to send correspondence to all or select recipients.
4. If the recipient is from the UWHC Transplant program, DFSS staff will send
correspondence directly to each party.
5. If the recipient is from a different transplant program, DFSS staff will work with the OPO
associated with that transplant program to facilitate sharing correspondence.
C. UWHC Transplant recipients will be offered the opportunity to exchange anonymous
correspondence with all DFM.
1. Recipients may choose to send correspondence to DFM at any time after the transplant
event; there are no timeframes or time limits.
2. All recipients will be “opt-in” by default to receive all correspondence.
3. Recipients may decline participation in any part of the correspondence program at any
time; “opt-out.” This may include declining to receive correspondence from all or only
select DFM and/or may include declining to send correspondence to all or select DFM.
4. If the DFM is a UW OTD DFM, DFSS staff will send correspondence directly to each party.
5. If the DFM is from a different DSA / OPO, DFSS staff will work with the associated OPO to
facilitate sharing correspondence.

Sharing Correspondence
D. All correspondence will be sent to the UW OTD office. DFSS staff will facilitate sharing
correspondence with all applicable parties and will maintain confidentially between the sender
and the receiver.
1.
E. Correspondence will be processed in the order it was received based on the date received; the
oldest received date will be processed first.



POLICY
Established Date: July 2008
Effective Date: January 2018
Title: Correspondence and Direct Contact Between
Donor Families and Recipients
Policy Number: 5.02

Electronically Approved By: Michael E. Anderson, PA-C Anthony M. D’Alessandro, M.D.
Executive Director Medical Director


Page 3 of 5
F. All correspondence will be reviewed by DFSS staff for the purpose of redacting confidential
information.
All correspondence will be anonymous. To preserve this anonymity, DFSS staff will
redact all confidential information from correspondence (except direct contact consent
forms; see the direct contact section of this policy). “Confidential information” is any
protected health information and/or information that could be used to reveal the
identity of a donor, recipient, and/or the sender of the correspondence. This includes
but is not limited to: last name, address, phone number, email address, etc.

Direct Contact
G. Direct contact is the process of exchanging personal contact information such as a last name,
phone number, mailing address, email address, etc. between DFM and recipients so the two
parties can exchange correspondence, talk, meet, etc. directly with each other without the
assistance of UW OTD.
H. To participate in direct contact, the following conditions need to be met. If one of these
conditions is not met, direct contact will not be facilitated:
1. One or both of the parties will need to request direct contact,
2. Both parties have exchanged correspondence at least once with each other,
3. A consent form for the release of information will need to be completed by both parties.
I. DFM and recipients may request direct contact at any time via a request to UW OTD staff either
directly or via an associated OPO or indirectly via content provided in correspondence, i.e. a
letter stating “I’d like to meet you soon.”
J. After a request is made or identified, DFSS staff will provide all parties that have exchanged
correspondence at least once with each other a cover letter explaining the process to facilitate
direct contact and the appropriate consent for the release of information form.
K. Each party will complete the consent form which will provide permission for DFSS staff to share
personal contact information and the consent form will include the personal information that
the individual would like shared.
L. Once all parties have submitted completed consent forms and all other conditions for direct
contact have been met, DFSS staff will share the personal information from the consent forms
with the other party. At this point, the two parties are considered “in direct contact” with each
other, which means they no longer need to facilitate sharing correspondence with UW OTD.
UW OTD will continue to facilitate correspondence only if requested.



POLICY
Established Date: July 2008
Effective Date: January 2018
Title: Correspondence and Direct Contact Between
Donor Families and Recipients
Policy Number: 5.02

Electronically Approved By: Michael E. Anderson, PA-C Anthony M. D’Alessandro, M.D.
Executive Director Medical Director


Page 4 of 5
M. Each DFM and recipient will be required to complete one consent form. A separate consent
form is not required for every direct contact relationship.
1. After a consent form is completed, UW OTD will use that consent form to automatically
share direct contact information with other parties after that party has met the
conditions to participate.
N. DFM and recipients may change direct contact permission at any time by contacting UW OTD.
1. By default, all DFM and recipients that sign a consent form will be providing permission
for direct contact with all other parties that have meet the conditions to participate;
default “opt-in” to all other parties.
2. DFM and recipients may choose to restrict direct contact to select parties only, thus
declining (or “opt-out”) direct contact with all other parties, at the time the consent form
is signed. For example, a DFM may specify that direct contact will only be provided to
one recipient and not any other recipients.
3. DFM and recipients that have already signed a consent form may rescind permission for
future direct contact. This will prevent any future direct contact, but will not affect any
existing direct contact relationships.
4. If a DFM or recipient that has previously restricted or rescinded direct contact permission
would like to change this permission to allow direct contact with more parties, a new
direct contact consent form will be completed to establish or reestablish new
unrestricted direct contact relationships. DFSS staff will collect the additional consent
form.
Direct contact records, including completed consent forms, will be documented in the DFSS record.

If correspondence from a UW OTD DFM has been shared or has attempted to be shared with a
recipient from UWHC transplant and the recipient has died, DFSS staff will contact the DFM to
inform them that correspondence will no longer be shared. This will be completed only if UW OTD
is made aware of a recipient death through an update from UWHC Transplant, returned
correspondence, contact from a recipient family member, etc.

Correspondence from or for an incarcerated individual who is either a DFM or recipient will be
processed as outlined in this policy. If the incarcerated individual requests direct contact, this



POLICY
Established Date: July 2008
Effective Date: January 2018
Title: Correspondence and Direct Contact Between
Donor Families and Recipients
Policy Number: 5.02

Electronically Approved By: Michael E. Anderson, PA-C Anthony M. D’Alessandro, M.D.
Executive Director Medical Director


Page 5 of 5
individual will need to disclose his/her incarcerated status in a correspondence item before direct
contact will be offered, an additional condition of participation in direct contact.

REFERENCES

UWHC Policy 4.13
UW OTD Policy 5.01