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End-of-Life Conversations With Families of Potential Donors

Leading Practices in Offering the Opportunity for Organ Donation

Shemie, Sam D., MD1,2,3; Robertson, Adrian4,5; Beitel, Janice6; Chandler, Jennifer, LLM7,8; Ferre, Ed9; Evans, Janet10; Haun, Mathias11; Torrance, Sylvia12 on behalf of the EOL Conversations with Families of Potential Donors participants.

doi: 10.1097/TP.0000000000001696
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1 Division of Critical Care, Montreal Children's Hospital, Montreal, QC, Canada.

2 Department of Pediatrics, McGill University, Montreal, QC, Canada.

3 Canadian Blood Services, Ottawa, Ontario, Canada.

4 Intermediate Intensive Care, Health Sciences Centre, Winnipeg, Manitoba, Canada.

5 Manitoba Organ Donation Organization—Gift of Life, Winnipeg, Manitoba, Canada.

6 Hospital Programs, Education and Professional Practice, Trillium Gift of Life Network, Toronto, Ontario, Canada.

7 Loeb Chair and Research Consortium in Organ and Tissue Donation, Ottawa, Ontario, Canada.

8 Faculty of Law, University of Ottawa, Ottawa, Ontario, Canada.

9 Program Development and External Relations, BC Transplant, Vancouver, BC, Canada.

10 Organ and Tissue Donation Resource Nurse, Cape Breton District Health Authority, Nova Scotia, Canada.

11 Strategic Planning, Tissues, Canadian Blood Services, Ottawa, Ontario, Canada.

12 Deceased Donation and Transplantation, Canadian Blood Services, Ottawa, Ontario, Canada.

This work was funded by Canadian Blood Services through a financial contribution from Health Canada. The views expressed herein do not necessarily represent the views of the federal, provincial or territorial governments. Canadian Blood Services is a national, not-for-profit charitable organization that manages the supply of blood and blood products in all provinces and territories in Canada (with the exception of Quebec) and oversees the OneMatch Stem Cell and Marrow Network. Canadian Blood Services also received a mandate in 2008 for national activities related to organ and tissue donation and transplantation (OTDT), which includes: development of leading practices, public awareness and education, system performance measurement, and establishing transplant patient registries. Canadian Blood Services is not responsible for the management or funding of any Canadian Organ Procurement Organizations (OPOs) or Transplant Programs. Canadian Blood Services receives its funding from the provincial and territorial Ministries of Health and the federal government, through Health Canada.

Supplemental digital content (SDC) is available for this article. Direct URL citations appear in the printed text, and links to the digital files are provided in the HTML text of this article on the journal’s Web site (www.transplantjournal.com).

Correspondence: Sam D. Shemie, MD, Montreal Children's Hospital Montreal, PQ, Canada. (sam.shemie@mcgill.ca).

This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.

The Canadian public and healthcare professionals strongly support organ and tissue donation.1,2 However, Canada’s deceased donation rate is less than half of the best-performing countries, with variable family consent rates across the country.3 It is recognized that presenting the opportunity for donation to families who are in a stressful, traumatic situation is difficult and must be done with sensitivity to their unique situations, values, and beliefs. At the same time, international, national, and local leaders in this area have demonstrated that conversations with families can be done in a way that leads to improved and well-informed decision making and support and can have a positive impact on donation rates.

In February 2014, Canadian Blood Services sponsored an invitational forum in Montreal for the development of leading practices related to effective requesting in deceased donation. This event focused on adult and pediatric neurological determination of death (NDD) and donation after circulatory death (DCD) organ donors (who could also be tissue donors) and had the following objectives: review current donation discussion practices in Canada and internationally; develop a common Canadian understanding of what “effective” means; develop leading practice recommendations; initiate the development of knowledge translation tools for healthcare professionals.

At this meeting, there were 44 participants from a broad range of organizations, professions, and perspectives: critical care, organ and tissue donation, social work, legal, chaplaincy, ethics, healthcare administration, donor family and aboriginal representation and international experts (see Acknowledgments). Participants reviewed and discussed issues in a variety of areas: working with families in crisis, ethnic and cultural considerations and challenges, legal requirements, characteristics and skills of effective requesters, training programs, and relevant evidence. The conversations were set in a Canadian context and took into account variations among existing practices across the country. Group members also explored potential research topics and System-wide issues at provincial, regional, and/or national levels, reaching agreement in a number of areas. Meeting discussions were supported by a literature review as well as presentations made by national and international subject matter experts. The conclusions from these discussions are presented here as proposed national leading practice guidelines, supported by a clinical checklist (see Appendix 1). Although some of these leading practices may take time to implement because of logistical, geographical, or funding issues, the authors hope that Canadian healthcare professions and organizations involved with potential organ and tissues donors find this guidance useful in supporting families and improving donation conversations.

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Planning Process

To provide leadership and management for development of the workshop, the planning committee met regularly for 9 months before the workshop to develop the agenda, the process, the supportive background documents, and to manage the logistics. In preparation for the workshop, a comprehensive background package was provided to participants in advance and included a literature review4 and an environmental scan on practices related to effective requesting. The following core assumptions related to organ donation were agreed upon: the healthcare system should strive to fulfill a patient's stated wishes regarding events upon death; compassion and respect for patients and their families is paramount; organ and tissue donation benefit society; offering organ and tissue donation is an obligation of the system and should be presented at every appropriate opportunity; efforts to increase organ donation should not compromise public or family trust or well-being.

After expert presentations, participants were provided reference sheets (condensed summaries of existing evidence) and then were divided into groups where extensive discussions focused on challenge questions. Group results were presented in plenary sessions, with outputs being discussed and areas of consensus noted. There were also 2 “listening posts” within the meeting—small groups of designated participants who gathered and synthesized ideas on research and system implementation. The meeting results were then taken to the planning committee in the form of a draft report on proposed leading practices and subsequently finalized.

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Recommendation 1: Effective Conversations With Families

Effective conversations with families of potential donors are collaborative, compassionate, and supportive, providing meaningful information regarding donation and its value. This supports families in reaching an optimal and enduring decision that is also respectful of the wishes of the potential donor.

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Supporting Guidelines

Conversations with families of potential donors regarding organ and tissue donation could have several objectives. The goal may be to maximize donation, or it may be to support families in reaching an optimal decision for their psychological well-being. It may also be to ensure that the law is followed and that the patient's wishes regarding donation are respected. The question of the ultimate goal of offering the opportunity for donation is complicated by the fact that goals are interrelated and may overlap or conflict in some cases.

Set in a Canadian context, meeting participants agreed that an effective discussion with families:

  • Is collaborative—the shared effort of a multidisciplinary healthcare team that is involved with the patient and the family,
  • Is compassionate and supportive—in recognition of the emotional stress of the situation and a response that must be sensitive and understanding,
  • Provides meaningful information on the positive value and impact of donation so that an informed decision can be made,
  • Results in an optimal and enduring decision so that the family reaches a decision that would be comparable to one made if they were not in crisis—a decision that will not be regretted at a later date.
  • Is respectful of the donor's wishes, recognizing that those wishes are paramount and should not be disregarded by families.

Meeting participants also agreed that the term “effective requesting” was a misnomer and that the scope of the conversations with family is broader than simply a request for consent to donation. It includes the provision of family support, information, and the opportunity for donation in a positive and sensitive manner. If this conversation is appropriate, ethical, and in alignment with leading practices, the objectives of family well-being and increased consent rates are compatible and not in conflict.

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Recommendation 2: Approaching Families Regarding the Opportunity for Donation

Approach the family of every potential donor and offer the opportunity for donation.

Notify the Organ Donation Organization (ODO) as early as possible and before the initial donation conversation with the family.

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Supporting Guidelines

Existing literature identifies many factors that impact donation discussions and consent, for example, families who do not accept brain death declaration or grave prognosis, specific religions or those with specific cultural beliefs, uncertainty whether donation can be offered, or when the patient has previously documented not wanting to donate.5 However, although these factors should be addressed in preparations for discussion with families, they should not preclude providing the offer of donation in all circumstances. Identifying and referring all potential donors to the designated ODO as early as possible is key to achieving the optimal conversation regarding donation. Referral to the ODO should take place before donation conversations are initiated with families. Many ODOs have defined clinical triggers that identify when potential donors should be referred. In general, these triggers relate to patients who are mechanically ventilated, and are deeply comatose after devastating brain injury with the intention to withdraw life-sustaining treatment that is expected to result in death.6

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Recommendation 3: Elements in the Preapproach Team Planning Meeting (Team Huddle)

3a: Convene a team huddle with the ODO donor coordinator and key members of the healthcare team before discussions with families. At a minimum, include the donor coordinator, most responsible treating physician and primary bedside nurse(s) in the team huddle.

3b: To ensure a well-planned approach, include the following topics in the team huddle discussions:

  1. Review information about the patient, including medical status, eligibility and prior donor registration/expressed intent to donate, if available,
  2. Identify family members and related issues or conflicts that may impact decision making.
  3. Determine when and where the initial conversation will take place.
  4. Determine who will lead the initial conversation with the family, who else will be in the room and what their roles will be.
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Supporting Guidelines

There are a number of healthcare professionals who may be involved in end-of-life care, including the intensive care unit (ICU) attending physician, ICU trainee, ICU nursing staff, psychologist, donor coordinator, donation physician specialist, family doctor, faith representation, cultural representation, social worker, and others. Members of the multidisciplinary healthcare team who have been involved with patient care and the family should be involved in the planning of donation discussions. Conducting a team huddle before discussions with family is effective in shaping an approach that meets the family's needs. The healthcare team can provide valuable information to inform discussions. The team huddle supports communication among the team members and helps to clarify facts and roles for the ensuing family donation conversations.

At a minimum, include the following people in the team huddle:

  • Donor coordinator,
  • Primary bedside nurse(s),
  • Most responsible treating physician.

Consider involving the nurse-in-charge and physician trainee. If social workers and spiritual care representatives are already involved in family care, include them as well. Depending on the situation and where appropriate, cultural representatives, family physician, and respiratory therapist may also participate in the team huddle.

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Elements to Review in Team Huddle

  1. Patient medical status and eligibility: based on the patient’s condition, the timing of the family conversation may need to occur sooner than expected or may necessitate a discussion on suitability for DCD or NDD.
  2. Prior registration of intent‐to‐donate: as part of the discussion, inform families whether the patient has previously registered his/her consent for donation. If he/she has, and unless there are objections, the conversations with the family can focus on discussing how the patient’s wishes for donation will be carried out.
  3. There may be many family members wanting to be involved in the decisions around end-of‐life care. It is important to understand not only who can provide legal consent but also who are the family decision makers or influencers.
  4. Each patient and family has their own unique set of circumstances, personality, faith, and culture. Respecting this and personalizing the discussion to the needs of each family can be done while ensuring standard elements are addressed as required.
  5. There may not always be agreement among family members on end‐of‐life care for their loved one. It is important to be aware of potential conflicts and disagreements and to discuss how this will be handled.
  6. Appropriate timing: families who feel pressured and rushed toward a decision are less likely to consent to donation.4 The feeling of pressure may be conveyed in many ways, including through the pace and tone used by the healthcare professional talking to the family and is not necessarily linked to the amount of time given to reach a decision. It may be helpful to stage the discussion into smaller discussions, that is, “chunking,” taking into account what the family is able to absorb and decide at a given time.
  7. There is evidence that daytime discussions are preferable to discussions at night when fatigue may be worse. Practically, an optimal approach time depends on a number of factors including family availability, patient medical stability, death declaration time, staff availability, and unit logistics.
  8. Hold discussions with families in a private, comfortable, and quiet location, close to the patient but not in the same room. Choose a room that is large enough to accommodate all family members participating in the conversation. Because conversations may occur over an extended period, ensure that family members are comfortable, with no pressure to leave and with amenities, such as a phone, water, and food.
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Recommendation 4: Communication Around Death or Grave Prognosis

Communicate the determination of death or grave prognosis to the family in a conversation that is before and separate from conversations about donation.

  • In the case of NDD, ensure that the family has a clear understanding of neurological death and has accepted the death before discussing donation.
  • In the case of DCD, hold the donation discussion after the consensual decision to withdraw life‐sustaining therapies has been made. In the case of DCD, where donation conversations are conducted before death, it is essential to avoid perceived or real conflicts of interest. This can be achieved by having conversations led by personnel who are separate from the treating team responsible for withdrawal of life sustaining therapies and palliation. When this is not possible (due to logistics or other reasons), identify and be transparent about the roles and responsibilities of healthcare team members.
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Supporting Guidelines

A standard approach in donation is decoupling, that is, offering the opportunity to donate separately from (and after) the declaration of death. Although evidence is inconsistent,4 this approach appears to help in avoiding perceptions that physicians have given up on patients prematurely or that physicians have a conflict of interest. It also gives families time to adjust to the shock of the death before considering donation.

In the case of NDD, offer the opportunity to donate separate from and after the declaration of death, unless there is a compelling reason (eg, clinical complication) not to do so. Ensure that families understand and accept the fact of death. Address potential confusion and misunderstanding about brain death, taking the necessary time required with the family. It important to ensure that families are saying “no to donation” rather than “no to my loved one dying.”

In the case of DCD, the donation discussion will necessarily occur before death, but it must not occur until a decision to withdraw life-sustaining therapies has been made.

To avoid any perceived or real conflict of interest, in Canada, there is required separation between those involved in the declaration of death and those involved in donation and transplantation. At question is whether healthcare providers involved in the patient’s care should be the ones who lead the discussions on donation. The potential for conflict of interest is less of a concern for NDD where the donation discussion occurs after death has been determined. However, for DCD, where donation discussions are conducted before death, to avoid perceived or real conflict of interest, donation discussions should be led by personnel separate from the treating team responsible for withdrawal of life sustaining therapies and palliation.

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Recommendation 5: Information Provided to the Family

Provide the family with sufficient information, in clear and comprehensible language, to make an informed decision:

  • Be transparent about roles and responsibilities.
  • Describe the value of donation.
  • Review the patient’s registry information or donation intentions, if available,
  • Describe the process, medical/clinical considerations, and probability of donation,
  • Describe any impact on funeral arrangements.
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Supporting Guidelines

Provide information in clear and comprehensible language—avoid complex medical or technical terms when communicating with families. As part of the discussion, inform families whether the patient has previously registered his/her consent for donation. If he/she has, and unless there are objections, focus the discussions on how the patient’s wishes for donation will be carried out. In cases where the patient’s wishes were not previously expressed, it may be helpful to discuss the values and beliefs of the patient. For example, families sometimes refer to the fact that the loved one would have wanted to donate because he/she was a caring person committed to helping others.

Provide information about the benefits of donation and how it helps donor families and recipients. Benefits include honoring the patient’s wishes, honouring the patient’s life, helping the recipient who receives the transplant and providing some comfort in an otherwise senseless situation. Numerical facts such as donation rates, transplant rates, consent rates, deaths on waiting lists, and so on, may appear cold or coercive. Emphasize the value of donation in non-numerical terms and more specifically, focus on the rare opportunity to save a life.

Explain the following to the family:

  1. Donation process: medical-social assessment, testing requirements, logistics (movement of patient/body), timelines, impact on funeral arrangements.
  2. That donation incurs no financial cost to the family.
  3. Any additional donation-specific treatments, such as premortem interventions in DCD.
  4. That the donation process may not always result in transplantation for a number of reasons:
    1. The patient may not meet testing and assessment criteria.
    2. For DCD, the patient may not die within the required time period.
    3. Organs may not viable.
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Recommendation 5: Communicating Information to Families

When communicating with the family, demonstrate sensitive, compassionate, and caring behavior with a focus on family well-being. The use of a confident and positive approach, rather than a guarded or apologetic approach, is recommended. Do not use aggressive or coercive language or strategies that polarize families.

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Supporting Guidelines

Families considering donation are in a vulnerable and emotional crisis state during which decision-making can be difficult. As a result, problems with decision-making, attention span, concentrating, and remembering information are common. The attitude, manner, and language used by healthcare professionals involved have been shown to have a significant impact on how families experience and react to the opportunity for donation.4

The sincere demonstration of empathy with sensitive, compassionate, and caring behavior (with both family and patient) is conducive to family satisfaction, absence of later regret, and to consent for donation.4 This includes following the principles of effective communication in crisis situations, that is, appropriate eye contact and modulation of tone. Avoid impersonal or casual behavior.

A perception of an organ procurement focus should be avoided. When families perceive medical staff and donor coordinators to be focused primarily on obtaining organs rather than on care for their loved one and on the families’ well-being, they may lose trust and become less inclined to donate. Furthermore, there is evidence that when healthcare personnel are perceived to be procurement focused, the risk of psychological harm to families increases.

The attitudes of healthcare professionals towards donation also influence the consent rates achieved. A confident approach is associated with higher family consent, while nervous, guarded or apologetic approaches tend to reduce consent.4 Positive attitudes are associated with higher consent rates than neutral or negative attitudes.

Those who indicate they are legally required to ask for donation also tend to have lower consent rates. Avoid saying things like “Sorry I have to ask you about this…” or “I have to do this by law…”. While positivity is beneficial to increasing donation, excessively promotional strategies with a lack of sympathy and insensitivity to the loss can be seen as coercive and should be avoided. Unacceptable strategies include the use of guilt, shame, deception, manipulation, and omission of truth.

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Recommendation 7: Family Reluctance

Explore family reluctance to donate by sensitively discussing reasons, addressing medical, religious or cultural misinformation or misconceptions, and dispelling myths.

In cases of initial refusal, it is acceptable to re-ask for donation if the patient has previously registered intent to donate, if new information becomes available, if the family misunderstands the information or if there have been previous conversations by untrained staff (prementions) that have provided incorrect information.

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Supporting Guidelines

Not all families or family members are receptive to donation. In this situation, encourage families to elaborate on their reasons for reluctance. To the extent they are based on misinformation, it may be possible to address them. However, not all negative beliefs are likely to be easily dispelled (such as those related to mistrust). Obstacles or reasons for refusal include4:

  • The hope for recovery and difficulty in accepting brain death.
  • Reluctance to modify or desecrate the body.
  • Concern that donation will damage the relationship between the deceased and the family.
  • Concern that donation will interfere with reincarnation, resurrection or the afterlife.
  • Desire to protect the loved one from further suffering and indignity.
  • Concern that the funeral will be delayed or the patient will be unable to have an open casket.
  • Cost of donation.
  • Mistrust of the medical system,
  • Mistrust of organ allocation system, ie, it is unfair, favours the rich.
  • A belief that donation goes against what the patient would have wanted.
  • A belief that doctors will make less effort to save the life of a donor, or death will be hastened to obtain organs.
  • Belief that the patient is ineligible to donate.

Minority ethnicity is associated with reduced family consent rates. This may be related to the degree of inclusion, trust or solidarity felt with the broader society. In addition, minority ethnicities may have distinct cultural or religious traditions that are poorly understood within a medical system that reflects the majority culture. The positions of major religious traditions on organ donation are complex, and subgroups within a major tradition may be reluctant to donate for various reasons. As a result, typical statements such as “all the major world religions approve of donation” may be correct but still fail to capture a complex range of religion-based obstacles to donation.

There have been attempts in the United States to address this situation by matching the ethnicity of requester and family. Evidence from U.S. studies indicates that this may affect a small proportion of families. Others suggest that the best way to engage these groups is to identify, engage and inspire community, cultural, religious, and ethnic group leaders as part of ongoing public awareness and education.

In some cases, there may be conflict and disagreement within the family in terms of end-of-life care and/or donation decisions. This can be a difficult situation to deal with and requires training in conflict management and negotiation. If there is a disagreement about donation, it may be useful to identify key people and decision makers and enlist their assistance in coming to a decision. If available, the registered consent decision may help for proceeding with the legal next of kin. Communicating that all should work toward fulfilling the wishes of the patient may also help. Each case is individual and may require additional support from social work or spiritual advisors.

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Recommendation 8: Legal Standing on Family Override of Patient Consent

Family override of patient consent/intent to donate remains a challenging issue but of unclear quantitative impact. There was no recommendation on this issue.

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Supporting Guidelines

Occasionally, families refuse donation where the deceased has made an explicit and legal declaration to donate (eg through a registry). Some argue that, in this situation, the dominant consideration is to give effect to the deceased’s wishes, which also coincide with societal interests in increasing donation rates. Others point out countervailing concerns that the removal of organs against the wishes of grieving families will cause undue suffering to the family and also may risk a public backlash against the organ donation system. Another issue is that “informed consent” is needed for any interventions that take place before death (in the context of DCD). Prior donation registration is unlikely to constitute “informed consent” to premortem interventions and some families may refuse consent for them despite the patient’s wish to donate. Finally, the deceased may have withdrawn consent, or expressed doubts or concerns to the family that call the earlier consent into question.

Meeting participants heard from experts on the laws related to consent-to-treatment (before death) and consent to donation (after death) legislation in Canada as follows5:

  • The decision to donate is governed by tissue gift acts and provides authorization to proceed with retrieval of the organs. The term “informed consent” is used in the context of interventions with living patients, and is required under consent-to-treatment legislation. This informed consent standard is not required for post mortem donation under tissue gift acts, which provide that authorization rather than “informed consent” is sufficient to proceed with retrieval of the organs. (There are distinct considerations in DCD, where informed consent may be required for any pre-mortem donor interventions.)
  • Despite this binding authorization, healthcare professionals in Canada may still turn to next-of-kin as the authority, generally due to respect for the family and fear of consequences, media attention, or litigation. It is acknowledged that in other countries, authorization for donation is truly binding and may proceed even if families object. It was suggested that clarity on the binding nature of this authorization warrants further investigation. It may be helpful to provide legal clarity on several points for healthcare professionals, for example, the donor’s prior authorization is sufficient to proceed with donation despite family disinclination to donate, but that evidence provided by the family of a retraction of consent by the donor would need to be respected.
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Recommendation 9: Family Support

Support the family during and after donation discussions, regardless of whether they consent to donation. Provide a dedicated, trained healthcare organ donation professional who focuses on family support throughout and after the process for the duration of the family's stay at the hospital. Provide postdonation grief support/follow-up services and donor recognition.

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Supporting Guidelines

Families in the ICU experience a great deal of stress and anxiety. Stressful aspects include fear of losing a loved one, feeling lost or unsupported, confirmation of a brain death, adjusting to loss, and shock or surprise in being asked to donate. Many factors have been identified that can mitigate a family’s stress:

  • Support of family and friends.
  • Being able to spend time with the patient.
  • Receiving information and emotional support.
  • Having adequate time to understand the patient’s condition.
  • Preparation to hear the organ donation request.
  • Displays of empathy.
  • Quality of communication and care.

Donor coordinators/healthcare providers can support a family during donation discussions by:

  • Addressing whatever is most important to the family in that moment, even if it is not directly related to donation.
  • Showing compassion, listening actively, advocating for the family.
  • Giving them as much time as is possible to make a decision.
  • Sharing information and bridging the gaps between the family and the clinical care team—families greatly appreciate ongoing, timely, and consistent information about the patient’s status and prognosis.

After the decision has been made for or against donation, continue with empathetic attention both as a matter of good care to ensure family well-being, and also to avoid leaving the impression that families matter only for the purpose of organ procurement. There is also a need for follow-up communication with families, who may be left with unanswered questions about the death and the donation. Many families also express a need for psychological support and counselling in the early phases of bereavement, and this may be advisable for both refusing and donating families in order to avoid the psychological risks of decision regret. Many families wish to know about the transplantation outcome, although news of an unsuccessful outcome may be very disappointing to them.

To address the requirements of the family, some organizations in the United States are introducing a “companion” role.4 This is a trained healthcare organ donation professional who focuses on family support throughout and after the process. For postdonation support, most ODOs have programs for postdonation family support and recognition. These programs vary according to jurisdiction but may include: grief support, condolence cards, letters from the recipient families, annual follow-up, memory boxes, a spiritual ceremony, referral for counseling, and donor recognition services.

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Recommendation 10: Skills and Individual Characteristics Essential to Donation Discussions

Formal structured training and competency assessment should be provided for individuals leading donation conversations, regardless of background, profession, or specialty.

The following skills and traits are essential in leading donation conversations with families:

  1. A good communicator, listener, and facilitator with high emotional and cultural intelligence.
  2. Open, honest, collaborative, and patient.
  3. Self-aware, nonjudgmental.
  4. Comfortable in dealing with families in crisis.
  5. Trained and experienced in dealing with conflict.
  6. Compassionate.
  7. Passionate and knowledgeable about organ donation.
  8. Confident in their ability to be successful.
  9. Able to work well with a variety of personalities.
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Supporting Guidelines

There is considerable debate on who should approach families, and more specifically whether the offer should be made by a member of the healthcare team, by a dedicated organ donation expert or in partnership.4 There is considerable variation in approach among countries and organizations. Evidence varies on whether consent rates are higher when healthcare personnel request donation versus when organ donation coordinator personnel do so. It appears that the job title is less critical than the personality, training and skills of the person leading the discussion. Regardless of whether the individual is with the ODO or the hospital, the collaborative involvement of the healthcare team and ODO donor coordinator in all cases should be routine and established during the pre-approach team huddle.

Although some of the required personality traits are innate, others are amenable to training, which appears to positively affect the knowledge, confidence and self-efficacy and donation-related attitudes of those offering donation. Training should include theoretical and practical content as well as experiential learning opportunities such as role playing and feedback.

The system should evolve to a model where only trained and competent personnel lead donation discussions. The development of a certification program would add credibility in the healthcare world and with the public.

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Recommendation 11: Relationship Between the Hospital and ODO

A strong and trusting relationship should be developed between the ODO and the donation hospital to establish an effective donation environment and culture. Donation should be viewed as an integral part of quality end-of-life care, where not providing the option to donate is considered a medical error.

Engagement of emergency departments as well as intensive care units is required to make early referral the norm. Healthcare professionals should be provided with continuing education. Implementation of existing evidence-based policies for donation should be ensured at the hospital.

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Supporting Guidelines

Multiple studies suggest that a family’s satisfaction with the care received by their loved one is associated with increased consent.4 The whole context of care provided to the patient and to the family throughout their hospital encounter affects family perception and willingness to donate. As a result, the trust built with the healthcare team through caring and competent medical treatment, as well as the sensitivity and compassion shown to the patient and the family are important in inclining families to consent.

A climate of continuous quality improvement should be created in which ODOs and hospital staff work together to develop and maintain strong, positive hospital-ODO relationships. Hospital leadership should visibly support organ donation and related activities and integrate donation into the hospital culture. Hospital staff should demonstrate positive attitudes to donation and be familiar with donation procedures, including how to identify potential donors, and when and how to contact the ODO.

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Recommendation 12: Metrics to Measure Effective Donation Conversations

The consent rate, as defined by the percentage of number of consents over the number of family approaches, should be used as a metric for measuring the effectiveness of donation discussions with families. Recognizing the limitations of the consent rate as a measure of family satisfaction and well-being, a survey index should be developed to assess the impact of support provided to the family.

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Supporting Guidelines

Measures provide a mechanism for monitoring progress within an organization. Standardized measures are also useful in comparative studies across organizations, to determine which strategies are most effective and should be adopted more broadly. Consent rate is a measure that is currently being used by most ODOs. It is relatively easy to determine and makes a useful standard for comparative studies.

There are a number of potential measures of the effectiveness of the donation conversation with families. These include:

  • Proportion of families approached who agreed to donation (number of consents/number of approached).
  • Proportion of families approached who agreed to donation in response to a trained vs. untrained healthcare professional.
  • Proportion of families who override the patient’s wishes regarding donation.
  • Proportion of families who, 6 to 12 months later, regret the donation decision they made.
  • Donor rate per million.
  • Donor rate per million adjusted by age and cause-specific mortality.

Given that the goal of an effective discussion is also to support families and enable an enduring decision, it is recommended that a measure be developed to rate family satisfaction, both at the time of donation and at a later date, while recognizing that this may be difficult data to collect.

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Research Agenda

The following ideas were generated during the workshop as potential research activities that would further knowledge and address information gaps in this area.

  1. How does the framing of the request (offer versus request) affects the comfort of the requester?
  2. How should family well-being and satisfaction be measured?
  3. What is the value-add for certain types of investment in the organ donation system in Canada? Should there be focused public outreach campaigns for certain groups?
  4. In which Canadian jurisdictions would it be worthwhile to adopt an approach of matching demographic characteristics of requester and family?
  5. Should Canadian legislation adopt the term “authorization” in organ donation legislation rather than consent?
  6. Should Canada move to a more aggressive first person authorization approach to limit family override, and what legislative changes (if any) would be needed for this? Does this registration to donate provide authorization to DCD as well as NDD?
  7. What grounds are sufficient to override a prior registered wish to donate (ie when are advance directives appropriately disregarded or overridden)?
  8. Does the public really overwhelmingly support donation when it applies to themselves and their families rather than as a remote hypothetical possibility? Why is the public support not reflected in the donation rate?
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System Initiatives

The following were generated during the workshop as areas with potential system impacts, at national, provincial/territorial, or regional levels and that warrant further investigation and consideration.

  1. Training:
    1. Identification of skills and knowledge that can be taught to improve donation conversations (eg, neuroscience, behavioral science, communication skills, and so on).
    2. Development of training programs and tools.
    3. Methods for evaluation of competence.
    4. Staff development planning.
    5. Exploration and evaluation of multiple approaches to donation conversations with families, that is, donor coordinators, intensivists, hybrid approach.
    6. Measurement of consent rates and trends.
    7. Measurement of family experience and satisfaction during and after donation.
  2. Hospital Culture.
    1. Methods to increase hospital buy-in and partnership in donation process.
    2. Incorporate donation as part of quality end-of-life care.
    3. Increased training and awareness for hospital staff.
    4. Missed donation opportunities should be seen as a medical error.
  3. Public Awareness.
    1. Development of tools to address cultural perceptions and perceived barriers to donation.
    2. Demographic mapping—identification of ethnic populations and leaders within those communities.
    3. Improvement in registries and websites.
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ACKNOWLEDGMENTS

The authors gratefully acknowledge the expert speakers and meeting participants for developing these recommendations. The authors acknowledge the representation of the Canadian Critical Care Society, Canadian Association of Critical Care Nurses and Provincial Organ Donation Organizations. The authors would like to especially thank the process consultation by Strachan-Tomlinson and Associates.

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Planning Committee, Expert Speakers and Participants

Planning Committee

Dr. Adrian Robertson (Chair): Medical Director, Intermediate Intensive Care

Health Sciences Centre, Winnipeg; Medical Director, Manitoba Organ Donation

Organization‐Gift of Life; Medical Director, Clinical Ethics Consult Service

Health Sciences Centre, Winnipeg

Dr. Sam Shemie (CoChair): Division of Critical Care, Montreal Children's

Hospital; Professor of Pediatrics, McGill University; Medical Advisor (Donation), Canadian Blood Services

Ms. Janice Beitel: Director, Hospital Programs, Education and Professional Practice, Trillium Gift of Life Network (ON)

Ms. Jennifer Chandler: Loeb Chair and Research Consortium in Organ and Tissue Donation; Associate Professor, Faculty of Law, University of Ottawa

Ms. Janet Evans: Organ and Tissue Donation Resource Nurse, Cape Breton District Health Authority (NS)

Mr. Ed Ferre: Director, Program Development and External Relations, BC Transplant

Ms. Sophie Gravel: Program Manager, Deceased Donation and Transplantation, Canadian Blood Services

Mr. Mathias Haun: Director, Strategic Planning, Tissues, Canadian Blood Services

Ms. Dorothy Strachan: Process Consultant, Strachan‐Tomlinson Inc.

Ms. Sylvia Torrance: Associate Director, Deceased Donation and Transplantation, Canadian Blood Services

Expert Speakers

Mr. Timothy Caulfield Professor, Canada Research Chair in Health Law & Policy

Health Senior Scholar, Alberta Heritage Foundation for Medical Research, Research Director, Health Law Institute

Mr. Richard Hasz Vice President of Clinical Services for Gift of Life Donor Program

Gift of Life Institute (Pennsylvania)

Mr. Tom Mone Chief Executive Officer, OneLegacy (California)

Mr. Marcel Pincince Manager, Donor Family and Advocate Services, Donor Network of Arizona

Ms. Heather Traino Assistant Professor, Department of Social & Behavioral Health School of Medicine, Virginia Commonwealth University (Virginia)

Ms. Kimberly Young Director, Donation & Transplantation, Canadian Blood Services

Participants

Dr. Stephen Beed: Medical Director, Critical Care Organ Donation Program, Capital District Health Authority (NS)

Mr. Matthew Connors: Law Student, Faculty of Law, University of Ottawa

Ms. Theresa Daly: Director, Gift of Life Institute (Pennsylvania)

Dr. Saneef (Sonny)Dhanani: Chief Medical Officer, Trillium Gift of Life Network

Medical Lead, Pediatric Cardiac Intensive Care Children’s Hospital of Eastern Ontario

Mr. Eugene Dufour: Bereavement and Trauma Specialist, Hospice Palliative Care Consultant, STAR Family Health Team (ON)

Ms. Christine Echegaray‐Benites: Critical Care Nurse Clinician, McGill University Health Centre, Co‐ President of the Montreal Chapter‐ Canadian Association of Critical Care Nurses

Ms. Mary Gatien: Director, Horizon Health Network (NB)

Father Paul Geraghty: Spiritual Leader, Professional Coordinator, The Montreal Children's Hospital, McGill University Health Center

Ms. Julie Gratton: Renal Transplant Coordinator, Transplant Manitoba

Mr. Rob Hadley: Donor Coordinator: Hope Program, Transplant Services, Alberta Health Services

Dr. Jennifer Hancock: Associate Professor, Critical Care Medicine, Assistant Program Director of Dalhousie’s Royal College Training Program in Adult Critical Care Medicine (NS)

Ms. Fjola Hart: Wasekeesikaw: Executive Director, Aboriginal Nurses Association of Canada

Dr. George Isac: Clinical Assistant Professor Anesthesia, Program Director, Critical Care Medicine, University of British Columbia, Attending Anesthesiologist, Vancouver Coastal Health (BC)

Dr. Constantine (Dean) Karvellas: Assistant Professor of Medicine Intensivist and Hepatologist, Division of Gastroenterology (Liver Unit), Division of Critical Care Medicine, University of Alberta

Ms. Denice Klavano: Patient Advocate (NS)

Dr. Andreas Kramer: Medical Lead, Southern Alberta Organ Donation Program

Clinical Assistant Professor, Foothills Medical Center, Departments of Critical Care Medicine & Clinical Neurosciences (AB)

Dr. Jean‐ François Lizé: Assistant Medical Director, Transplant Québec, Director, Intensive Care, Notre Dame Hospital, Centre hospitalier de l’université de Montréal (QC)

Dr. Shavaun MacDonald Emergency Medicine and Adult Critical Care, University of Alberta

Ms. Susan Manitowabi Assistant Professor, School of Native Human Services, Laurentian University (ON)

Ms. Rhianna Matschke‐Neufeld: Living Donor Coordinator, Saskatchewan Transplant Program

Ms. Tami Murphy: Critical Care Organ Donation Coordinator, Legacy of Life (NS)

Dr. Mary O'Brien Adult Intensivist, Eastern Health, Organ Procurement and Exchange (NL)

Ms. Vasuki Paramalingam: Organ and Tissue Donation Coordinator, Trillium Gift of Life Network (ON)

Ms. Kim Parsons: Nurse Coordinator, NL Provincial Organ/Tissue Donor Program

Mr. Craig Schmidt Living Donor/Organ Donor Coordinator, Saskatchewan Transplant Program

Ms. Tina Shaver: Donor Coordinator/Instructor, Southern Alberta Organ & Tissue Donation Program

Mr. Hugues Villeneuve Manager: Hospital Program Development and Education, Transplant Québec

Ms. Rachel Ward: Law Student, Legal Division, Canadian Blood Services

Ms. Kim Werestiuk Manager: GD4/Transplant Clinic/Adult Kidney Transplant Program

Gift of Life, Transplant Manitoba

Ms. Linda Wright: Director of Bioethics and Director of Palliative Care, Assistant Professor in the Department of Surgery, Faculty of Medicine, University Health Network (ON)

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REFERENCES

1. Reid I. Canadian Blood Services OTDT professional survey. http://www.organsandtissues.ca/s/wp-content/uploads/2011/11/OTDT-Professional-Survey-Final-Report.pdf. Published February 7, 2011. Accessed September 27, 2015.
2. Reid I. Canadian Blood Service Views Toward Organ and Tissue Donation and Transplantation (Public Survey). http://www.organsandtissues.ca/s/wp-content/uploads/2011/11/Views-Toward-OTDT-Final-Report-2010-07-221.pdf. Published July 20, 2010. Accessed September 27, 2015.
3. International Registry on Organ Donation and Transplantation. http://www.irodat.org/?p=database#data. Accessed September 27, 2015.
4. Chandler JA, Connors M, Holland G, Shemie SD. Effective requesting: a scoping review of the literature on asking families to consent to organ and tissue donation. Transplantation. 2017;101(5S-1):S1–S16.
5. CNTRP. Canadian National Transplant Research Program: Fast facts on consent. http://media.wix.com/ugd/5a805e_abb9fbc5acb9425ba094574d4d59bdcf.pdf. Updated November 1, 2013. Accessed September 27, 2015.
6. National Institute for Health and Clinical Excellence. Organ Donation for Transplantation: Improving Donor Identification and Consent Rates for Deceased Organ Donation. https://www.nice.org.uk/guidance/cg135/evidence/organ-donation-full-guideline-184994893. Published December 2011. Accessed September 27, 2015.
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Appendix 1: Checklist for End-of-Life Conversations with Families of Potential Donors

Principles:

  1. The family of every potential donor should be approached and offered the opportunity for donation.
  2. Effective conversations with families of potential donors:
    • a. are collaborative, compassionate and supportive
    • b. lead by healthcare providers with experience and training in donation discussions
    • c. provide meaningful information regarding donation and its value
    • a. support families in reaching an optimal and enduring decision that they will not regret later
    • b. respect the wishes of the potential donor.

Potential NDD donor criteria: The absence of capacity for consciousness, brainstem reflexes and the ability to breathe. There must be a clear and proximate etiology and absence of reversible or confounding conditions. Often first signaled by unresponsive coma and fixed/dilated pupils. No predetermined age limits.

Potential DCD donor criteria: A non-recoverable injury or illness with dependence on life-sustaining therapy and consideration and/or agreement to withdraw life-sustaining therapy but prior to any action to withdraw life-sustaining therapies. No predetermined age limits.

PRIOR to Initial Donation Conversation

  1. The provincial Organ Donation Organization has been notified
    • Yes □ No □
  2. Patient condition: currently fulfills the criteria for:
    • NDD □ DCD □
  3. If NDD, family has an understanding of, and accepts NDD
    • Yes □ No □
  4. If DCD, family has consented to withdrawal of life sustaining treatments
    • Yes □ No □
  5. Pre-conversation Team Huddle: date________time________donor coordinator□ Primary bedside nurse(s)□ Most responsible treating physician/delegate□ Social work□ Chaplaincy□ Other □ _______________(please specify)
  6. Patient medically eligible for organ and/or tissue donation?
    • Yes □ No □
  7. Has the patient registered or indicated intent-to-donate?
    • Yes □ No □
  8. Team has identified and discussed:
    1. Family members, issues /conflicts that may impact decision-making
      • Yes □ No □
    2. Legal surrogate decision maker
      • Yes □ No □
    3. Distinct cultural, religious or language considerations
      • Yes □ No □
    4. When and where initial family conversation will take place
      • Yes □ No □
    5. Who will lead the initial conversation with the family
      • Yes □ No □
    6. Other healthcare professionals’ roles in donation conversation
      • Yes □ No □

DURING Initial Donation Conversation: date: _________time: _________

  1. Family aware of patient’s prior donor registration/expressed intent-to-donate
    • Yes □ No □
  2. Has the family provided consent to donation?
    • Organs: Yes □ No □; Tissues: Yes □ No □
      1. If yes, family understands the process, medical considerations and probability for donation
        • Yes □ No □
      2. If no, what are the reasons for family reluctance?___________________
      3. Are there conditions that would justify a re-ask after initial refusal?
        • i. the patient has previously registered intent to donate
          • Yes □ No □
        • ii. new information becomes available
          • Yes □ No □
        • iii. family misunderstands the information provided
          • Yes □ No □
        • iv. family has been provided incorrect information
          • Yes □ No □
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