DCD

Regulatory requirements and national best practices for the donation conversation with the legal next of kin / legal authorizing person (LNOK/LAP)

Fact-Finding Questions Hospital Leadership Should Ask

1. How closely do we collaborate and partner with our organ procurement organization (OPO) for and during the donation conversation?
2. Are we practicing team huddles with OPO and hospital patient care team members, including physicians, to make a plan for each family to communicate with and serve them the best way possible?
3. Are our hospital patient care team members skilled at transitioning the conversations with the family over to the OPO for the donation conversation?
4. Are we and the OPO conducting timely, collaborative After Action Reviews (AARs) to evaluate the donation conversation process, including instances of missed donation conversation opportunities?
5. Do we provide our hospital patient care team with education to ensure that all families receive culturally congruent care, as well as language support in their preferred language for these critical conversations?
6. Does our donation policy address the process for navigating the times when families object to the patient’s donor registry status?
7. Do we have an administrative authorization process policy for the instances when the donation decision could fall to hospital administration?
8. Do we have a diligent search policy to identify “Doe” patients? Do we have a robust documentation process to document the efforts made in a diligent search?
9. Beyond the donation of organs for transplantation, does our hospital staff appreciate the benefits of organ donation to the donor family?

Key Points Hospital Leadership Should Remember

1. Donation may be a possibility after the death of the patient; as such, it should always be considered as end-of-life (EOL) conversations occur.
2. Donation is not only of benefit to the patients in need of transplant; it provides the family with a sense of purpose, comfort, and hope in their loss. Most families express that it contributed to their healing process.
3. The Uniform Anatomical Gift Act, CMS Conditions of Participation, and accrediting bodies (The Joint Commission, Healthcare Facilities Accreditation Program, Det Norske Veritas) outline expectations with regard to the donation conversation that must be followed.
4. The donation conversation is a delicate and nuanced conversation with lasting impact for both the family and the potential recipients. Hospital and OPO collaboration and proactive planning is therefore integral to providing a timely and well-presented donation conversation.
5. Hospital and OPO staff must consider multiple factors as they plan for the donation conversation. These factors include which individuals from the hospital and OPO will be involved, the location for this sensitive conversation, preparation of verbiage to be used, how to best meet the family’s religious, cultural, and language needs, as well as each person’s role in the conversation with the family. All participants in the conversation must demonstrate compassion, active listening, and empathy.
6. In the DCD potential, it is important to assess the family’s understanding of the patient’s medical condition and grave prognosis, confirm that the family has made the decision to withdraw life-sustaining treatment (WLST),  and provide the family with the opportunity to ask questions.
7. Providing OPO and hospital support for the family throughout the donation decision is important. If the patient is a designated donor, that includes facilitating the family’s understanding of the finality of the patient’s decision and empowering the family to make decisions about things they can control.
8. Respect the family’s decision about donation in the cases where it is their decision to make.
9. The hospital administration or medical examiner/coroner could authorize donation if a patient cannot be identified or no-one in the hierarchy of decision makers is reasonably available.
10. The OPO provides ongoing support for donor families, regardless of the donation or transplantation. This support involves regular check-ins with the families, hosting events with opportunities to honor the legacy of their family members, and providing information and resources. In the rare instances in which both a recipient and donor family want to meet, the OPO will facilitate that occurrence.
11. Hospitals can honor donors through various activities, such as conducting Donate Life Rose Ceremonies, creating a Tree of Life, dedicating a Wall of Heroes, and many other ideas.

Model Elements for the Donation Conversation for DCD Potentials

The conversation that presents the family with the opportunity for donation is a crucial step in the process. The foundation for that conversation is set by the hospital patient care team as soon as the patient is admitted to the hospital. That team’s clear and active communication with the family throughout the patient’s care is instrumental in demonstrating all of the efforts that are being made to provide care. The goal is to leave the family with no doubts that their family member has received the best care possible when they are presented with the inevitable or likely futility of continued life-sustaining treatment and likely death. Once the family has accepted the death of their family member, they will be able to engage in the next steps about EOL care, which may include the possibility of donation.

It is imperative that the timing of the donation conversation is carefully planned and coordinated between the hospital patient care team and OPO staff – and that the mention of donation outside of the plan is avoided. The rationale for the need to carefully and collaboratively plan this conversation is to avoid conflicting information being given and to ensure all of the family’s questions regarding donation can be addressed. Conflicting information sometimes occurs when a patient is already a designated donor, in which case, an early mention of donation outside of the donation conversation may mislead the family into believing the decision is theirs to make when the patient has already made the decision to donate. During a time of tremendous loss for the family, this can lead to an increased sense of loss of control and anger.

Even if the patient is not a designated donor, mentioning the donation possibility too early in the grief process may lead the family to question the intention and the care that was provided to their family member. Additionally, the Uniform Anatomical Gift Act (see Essential 1), outlines a hierarchy of decision makers for donation in cases where the patient is not a designated donor. This hierarchy must be followed.

Families facing the loss of a family member are in a stressful and traumatic situation. Presenting the opportunity for donation must be done with respect and sensitivity to the family’s unique needs.¹ Factors such as a timely notification to the OPO (see Essential 2), huddles between the hospital patient care team and OPO coordinator(s), and execution of a planned donation conversation (also known as the effective request process) influence a family’s decision to donate or decline.^1,2,3 In response to the national critical shortage of organs available for transplant, regulatory and accreditation requirements, along with recommended best practices, specify elements for the donation conversation.^1,2,3,4

Regulatory and Legal Considerations

Regulatory & Accrediting Requirements for Presenting the Donation Opportunity

Hospitals must work collaboratively with the OPO to ensure “that the family of each potential door is informed of its options to donate organs, tissues, or eyes, or to decline to donate (42 CFR §482.45/42 CFR §485.63).”^5,6 Centers for Medicare and Medicaid Services (CMS) Conditions of Participation (CoPs)^5,6 as well as accreditation bodies^7,8,9 specify that the person who initiates the donation conversation with the family be the OPO representative or a trained designated requestor. Designated requestors are individuals selected by the hospital to receive formal training by the OPO to initiate the donation conversation. A study published in 2022 by the National Academies of Sciences, Engineering, and Medicines (NASEM)¹⁰ made a recommendation to CMS to eliminate the designated requestor role, due to inconsistencies in practice, and potential impact on donation rates and trust in the system. According to the CMS Interpretive Guidelines,¹¹ the hospital patient care team and the OPO coordinator or designated requestor responsible for initiating the donation conversation will collaborate together on when and how to hold the donation conversation with the family. CMS and accrediting bodies also specify that the hospital patient care team and OPO coordinator use “discretion and sensitivity with respect to the circumstances, views, and beliefs of the families of potential donors.”^5,6,7,8,9 Assumptions about a family’s decision to decline to donate should never be made with regard to a potential donor or “family’s grief, race, ethnicity, religion, or socioeconomic background.”¹¹ (See Essential 1)

State Law Requirements Regarding First Person Authorization (FPA)

When an individual designates themselves to be a donor, they are making a donation decision. This decision takes effect upon the death of the individual and is legally-binding (see Essential 1). One may wonder how the patient’s donation decision can supersede the family’s decision to donate when CMS specifies that families must be informed of their options to donate or to decline to donate.^5,6 If the patient has provided FPA for donation, gift law stipulates this decision to be legally-binding. The family in this situation no longer has an option to donate or to decline to donate.

It is important to note that FPA for donation is distinctly separate from a potential future event in which a LNOK/LAP may decide to pursue WLST. As such, it meets the ethical requirements of not making a WLST decision based on donation potential.

(Please note: This information is current as of August 2025. Click here to see each state’s UAGA laws.)

Donation Conversation Process (Effective Request Process)

A collaborative approach to the donation conversation involving both the physician and the OPO has been demonstrated to enhance authorization rates.^12,13  While CMS designates an OPO representative or a trained designated requestor as the one to initiate the request for donation to the patient’s family,^2,14 it is highly recommended that the OPO and hospital patient care team collaborate to determine the best time, best place, and best manner for introducing the donation opportunity to the family.¹

Best Practices for the Planned Donation Conversation (Effective Request Process)

• Timely Notification^1,2
  

  Timely notification to the OPO that a patient has met clinical triggers allows adequate time for the OPO to collaborate with the hospital patient care team on the timing of the donation conversation. Late notifications often result in rushed and unplanned donation conversations, and can adversely impact the family’s decision to donate – especially in situations where DCD might be a potential opportunity and the OPO is notified just prior to planned WLST. In fact, in one study, the top two concerns that prevented donation were that the LNOK/LAP had already made the decision to proceed with WLST and did not wish to reverse it; they were physically and emotionally exhausted, desiring to bring the process to a close.¹⁵ In another study, 22.6% of family declines were correlated to late notifications to the OPO.² A timely notification also allows for a well-timed donation conversation, which is less likely to lead to decision-regret by the family.¹ (See Essential 2: Identification of a Potential DCD Donor for further details on timely notifications.)

• Team Huddles^1,2
  • Description: A team huddle prior to the donation conversation is a multi-disciplinary meeting between the OPO representatives and key members of the hospital patient care team to establish the plan for holding the donation conversation with the family.
    
  • Goal: The main goal of the team huddle, which involves the OPO and the hospital patient care team, is to establish a collaborative plan for an effective and well-timed donation conversation, seamlessly transitioning from patient care to EOL care. The donation conversation must be delivered with utmost compassion, guiding the family toward a decision that aligns with the patient’s values. The delivery significantly impacts the family’s perception of the care their family member received and establishes a foundation of trust.
    
  • Participants: At a minimum, the OPO coordinator (usually a family care coordinator), primary bedside nurse, and primary care physician (or the patient’s main attending) should be included in the team huddle. Depending on the situation, other appropriate representatives may include spiritual care providers, social workers, respiratory therapists, cultural representatives, and/or language interpreters.
    
  • Huddle Discussion Points: Members of the team huddle (OPO and hospital patient care team) should discuss and determine the following prior to engaging in the donation conversation:^1,2
    • Review of the patient’s medical status and eligibility for organ donation.
    • Identification of LNOK/LAP and family members, as well as anything that might impact decisions that need to be made.
    • The family’s understanding and acceptance of poor prognosis.
    • The family’s decision for WLST.
    • The patient’s donor registry status or expressed intent to donate (if known).
    • Location and time for initiating the donation conversation.
    • The roles of OPO representatives and hospital patient care team that will be present for the conversation
    • Bridging statements to transition the donation conversation to the OPO representative or (if utilized) the designated requestor.

    • (See Example of An Team Effective Huddle Process in Appendix A)

Declaration of Death²

• In DCD cases, the donation conversation must happen before the patient’s death. In situations where the patient meets criteria for death by neurologic criteria (BD/DNC), declaration of death should occur and be communicated by the hospital patient care team to the family prior to initiating the donation conversation.

The Donation Conversation in DCD Potential²

Prior to the donation conversation with the LNOK/LAP, the OPO and hospital patient care team should conduct a team huddle to establish everyone’s role during and for the donation conversation. For example, the physician will discuss the medical details and diagnosis, then transition the conversation to the OPO coordinator, who introduces donation and helps to address donation-related questions. While the conversation may evolve organically, it must still include the previously outlined steps to ensure compliance with regulatory and legal requirements, as well as best practices. This conversation should take place in person whenever possible, as phone authorization rates are significantly lower than when at least one conversation occurred in person—54% compared to 31%.¹⁵

It is also important to clarify that authorizing donation does not equate to authorizing WLST. Ethically, the decision to pursue WLST must be made prior to and independent of any donation decision.^16,17

The timing of the donation conversation is crucial. Often, the donation conversation for DCD occurs too late in the family’s decision-making process.¹⁵ Based on feedback from families who express a desire to have learned about the donation opportunity earlier during their consideration of WLST, OPOs now evaluate family readiness cues for an early or timely integration also know as an introductory or informational donation conversation.¹⁸ This approach involves asking the hospital patient care team to assess whether the family is beginning to consider WLST. At this point, the OPO is introduced to answer questions and to potentially present donation as a possibility if WLST is pursued —but not to influence the family’s decision regarding donation or WLST. The formal donation conversation for authorization only occurs once the family has decided to proceed with WLST.

When a conflict arises between a patient’s advance healthcare directive (e.g., the patient does not wish to be kept on life-sustaining measures in the event of no meaningful chance of recovery) and there is a potential for the patient to become a donor, the Uniform Anatomical Gift Act (UAGA) specifies that such conflicts must be resolved before WLST occurs. In essence, WLST should not proceed until a donation decision has been made. (Refer to your state’s version of the UAGA.)

^{Practical Steps for Supporting Families in DCD FPA Cases}

After the donation conversation has occurred and while the case details are being coordinated, it is important that the patient’s decision to donate remains clear while the communication with the family continues to provide emotional support without any conflicting messages. The following should be goals of communication with the family while honoring FPA:^{19, 20}

Special Circumstances

Legal Next of Kin Objection to First Person Authorization

There are circumstances that could pose challenges for the hospital patient care team and the OPO. Most of the time, when families object to the patient’s FPA, it is for one of three reasons: 1) Concern about the length of the donation process; 2) Grief, which may impact their understanding or acceptance of the imminent death; 3) Their lack of support of donation and desire to revoke the patient’s decision, or an unwillingness to accept the patient had made the decision.¹⁹

According to a study with a group of four OPOs, the most common reasons they identified among their donor population for LNOK/LAP to object to a patient’s FPA are:¹⁵

1. Family disagreement with donationIn some cases, families disagree with donation regardless of the patient’s FPA or families believe the FPA is a mistake.Exploring with the family how their perspective could be so different to their family member’s decision and exploring why they would not want to honor what the patient had already decided can help to redirect the family to focus on honoring the patient’s decision instead of what they would want.
2. Extended SufferingSuffering extends both to the family and the potential donor. In many instances, the family self-identifies that they are physically and/or emotionally exhausted and want to seek closure as soon as possible.¹⁵ Concern for the loved one’s suffering may arise from a desire to prevent further pain or distress. It may also involve fears of bodily disfigurement, with some families expressing a wish for the body to remain intact.¹⁵
   
   Allow the OPO team and the hospital care team to better understand the family barriers/concerns and work with the family to adress concerns of pain/suffering, etc.Exploring the families’ barriers to FPA and donation can allow OPO staff to address misunderstandings and misconceptions.
3. Time-related concernsAs previously identified, the donation conversation often occurs too late in the decision-making process for families.¹² This could be due to late notification to the OPO by the hospital patient care team, or because the decision for WLST was made before notification occurred or before preparations for donation could be made. These factors can lead to a delayed conversation with the family, who may no longer want to postpone the process.Other time-related concerns may include delays in funeral arrangements or the need for family members to return to work or travel home if they live far away.In these situations, the OPO may consider rapid or expedited donation to meet the timeline of the family while still honoring the FPA (see Essential 6). It is crucial that the OPO and hospital patient care team work collaboratively to make every effort to meet the family’s desired timelines while still honoring the patient’s autonomous decision.^19,20

Other concerns, although less common that can be addressed by the OPO, include concern for the health of the potential donor (i.e., the patient is too unhealthy), family disunity, or hospital patient care team problems, and perceived costs to the family for donation.

Ultimately, the OPO coordinator leading the donation conversation should explore family concerns to donation to help address questions, dispel misinformation, and meet family needs in order to facilitate the FPA. The OPO’s hospital development coordinator will typically help navigate the hospital patient care team through this process.

The act of self-designation as a donor is authorization for donation, which becomes active upon death, irrespective of whether death is declared based on neurological or circulatory criteria. WLST and honoring of the donor designation do not have to be mutually exclusive. It is a matter of coordinating the timing of the withdrawal in order to honor the donor designation upon death.

Hospital Administration and Medical Examiner/Coroner (ME/C) Donation Authorization

The UAGA includes provisions for individuals to make an anatomical gift on behalf of the deceased.

If a patient’s identity and/or donation status are unknown, the provision in the UAGA stipulates conducting a diligent search for a LNOK/LAP who has the ability to authorize donation. Under circumstances – when the LNOK/LAP of a critically ill patient cannot be located, they are not willing to act within a reasonable time frame conducive for the preservation of the gift, or if the patient’s identity is unknown and the patient dies – disposition of the body falls under the jurisdiction of the ME/C and/or hospital administrator. ME/Cs or hospital administration are part of the final class in the hierarchy of decision makers according to the UAGA. Additional information, resources, and tools are available through The Alliance’s Hospital Executive Insights: Uniform Anatomical Gift Act (UAGA).

The UAGA typically includes a good-faith immunity clause, which protects all who follow the act in good faith from civil or criminal prosecution. (Refer to Essential 1 or navigate to each state’s UAGA.)

Developing an Administrative Authorization Policy

It is advisable that hospitals prepare for the possibility that the donation decision could fall to them and establish policies and procedures to help navigate such cases. Hospital policies should incorporate a comprehensive, diligent search and documentation process, as well as an administrative authorization process to authorize donation.²¹

Honoring Donors and Their Families

OPO Aftercare Programs

Every OPO has an aftercare program for donor families which provides support to the family of all authorized donors regardless of whether the donation leads to transplantation or not. While aftercare programs differ among OPOs, they typically include a donation summary letter and some form of memento to memorialize the donation gifts, as well as resources or tools (e.g., grief pamphlets, etc.). In addition, most OPOs hold an annual donor remembrance ceremony to honor donors and their families, as well as many other events throughout the year for donor families. OPOs will usually include in these events the families of the patients for whom the donation process had to be aborted.

Hospitals Honoring Donors

Many hospitals explore activities to honor donors. Such activities may include conducting Donate Life Rose Ceremonies, creating a Tree of Life, dedicating a Wall of Heroes, etc. Ideas for hospitals wishing to honor donors can be found on The Alliance website in the Community Resource Toolbox.

Honoring Donors and their Families

OPO Activities

Every OPO has an aftercare program for the donor families. Aftercare programs provide support to the families of donors, even if the donor became a donor “in spirit,” (i.e. when donation could not proceed or the organs could not be utilized for transplantation). The aftercare programs include special events for donor families where the legacy of their family member is honored. The aftercare programs are further described in Essential 8.

Hospital Activities

Many hospitals explore activities to honor donors and donors “in spirit.” Such activities may include conducting Donate Life Rose Ceremonies, creating a Tree of Life, dedicating a Wall of Heroes, etc. Ideas for hospitals wishing to honor donors can be found on The Alliance website in the Community Resource Toolbox.