End-of-Life Conversations With Families of Potential Donors

Abstract

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. 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. 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. 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. 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. 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 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: Review information about the patient, including medical status, eligibility and prior donor registration/expressed intent to donate, if available, Identify family members and related issues or conflicts that may impact decision making. Determine when and where the initial conversation will take place. Determine who will lead the initial conversation with the family, who else will be in the room and what their roles will be. 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. Elements to Review in Team Huddle 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. Prior registration of intent‐to‐donate: as part of the inform families whether the patient has previously consent for donation. 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