How to deliver bad news to a relative in the context of brain death and organ donation?

Delivering Bad News in the Context of Brain Death and Organ Donation

Begin end-of-life care planning at the time of admission with frank, open discussion about the high likelihood of death, and critically, decouple the conversation about brain death from the organ donation request—families must first accept the futility of continued support before any mention of donation. 1

Timing and Sequence: The Critical Framework

Initial Communication Must Start Early

• Initiate end-of-life discussions immediately upon ED or ICU admission, not when withdrawal of life-sustaining treatment (WLST) is being considered 1
• Present the reality directly: discuss both the high likelihood of death AND the possibility of survival with severe disability 1
• This early approach allows time for families to process devastating information before any decisions are required 1

The Mandatory Separation of Conversations

• Never approach families about organ donation until they have fully accepted the futility of continued organ support and the inevitability of death 1
• For brain death cases: wait until after confirmation of death using neurological criteria before discussing donation 1
• Decoupling these conversations is considered good practice and actually improves consent rates while maintaining ethical integrity 1

The Shared Decision-Making Approach

Avoid Two Extremes

• Adopt a shared decision-making model that avoids both paternalistic approaches and placing the burden entirely on families to make difficult decisions during extreme stress 1
• This approach is mandated by the Mental Capacity Act and recommended by international critical care societies 1

Explore Patient Values and Preferences

• Conduct interviews with relatives to explore the patient's own values and preferences 1
• Incorporate these values into a bespoke end-of-life care plan 1
• At least part of the evaluation should occur without the intended recipient or other family members present to ensure voluntariness 2

The Organ Donation Discussion: A Structured Approach

Who Should Be Present

• Involve a specialist nurse in organ donation early when deterioration continues or brain death criteria are likely to be met 1
• A planned, collaborative approach between the ICU team and the specialist donation nurse is routine best practice 1
• The donor transplant coordinator may be present during WLST if the family finds it helpful, but the retrieval team should not meet the family except at the family's explicit request 1

Essential Information to Provide

When discussing non-heart-beating donation specifically, families must understand 1:

• Death may occur quickly after treatment withdrawal, leaving little time with their loved one if donation is to proceed
• Death may not occur quickly—if the dying process is prolonged, organ donation may not be possible (though tissue donation remains an option)
• The coroner or procurator fiscal may refuse permission
• Transplantation may not be possible even after organ retrieval if perfusion fails
• They will have an opportunity to see their relative after organ retrieval
• They can stop the donation process at any stage without providing a reason 1

The Process Details Matter

• Explain the cannulation and perfusion procedures that will occur after death in detail 1
• Describe how death will be certified: absence of cardiac output and respiration, lack of response to supraorbital pressure, and absence of pupillary and corneal reflexes, confirmed after a minimum of 5 minutes 1
• Clarify that no interventions to facilitate donation (such as heparin administration) will occur until after death is certified 1

Communication Principles Throughout

The Environment and Manner

• Provide direct, nontechnical explanations with compassion and kindness 3
• Allow time for families to talk, express feelings, and ask questions 3
• Ensure families have emotional support, empathy, and compassion from an expert team 4

Addressing Cognitive Challenges

• Recognize that families are often in shock when brain death is declared, which profoundly affects their ability to assimilate and understand information 5
• Families frequently have difficulty understanding the concept of brain death itself 5
• Continuing information after consent is given appears necessary—the initial conversation is not sufficient 6

Follow-Up Is Mandatory

• Arrange follow-up according to individual needs to help families process their loss 6
• Healthcare professionals who have insight into the hospital stay and donation process should be available to answer questions afterwards 5
• Families need recognition of the increased strain they experienced and understanding of the organ donation process to achieve reconciliation with their decision 6

Common Pitfalls to Avoid

Timing Errors

• Never discuss organ donation before families have accepted the inevitability of death—this is both ethically problematic and reduces consent rates 1
• Don't delay initial prognostic discussions until WLST is being considered; start at admission 1

Communication Failures

• Avoid technical jargon when explaining brain death and the donation process 3
• Don't assume one conversation is sufficient—families need ongoing information and support 6
• Never allow the transplant team to be involved in the decision to withdraw treatment, as this creates conflicts of interest 1

Process Violations

• Treatment withdrawal protocols must not differ when organ donation is being considered—the dying patient's dignity and comfort remain paramount 1
• Don't escalate treatment or add new therapies (inotropes, heparin, hormone replacement) to improve organ viability before death 1

The Role of Palliative Care

• Incorporate palliative care specialists as part of end-of-life care in ICU to improve quality of care 1
• Focus on preventing and relieving suffering through early identification, assessment, and treatment of pain and other physical, psychosocial, and spiritual problems 1
• Ensure core competencies in palliative care are demonstrated by those caring for potential donors, including the ability to communicate openly, withdraw life-sustaining therapies without precipitating distress, manage symptoms, and provide emotional and spiritual support 1

Consent and Legal Considerations

• Obtain consensus among family members—explore this sensitively 1
• Most potential organ donors fall under coroner's jurisdiction; obtain permission for organ recovery 1
• While donor cards indicate willingness, verify consent with the family in practice 1
• Reassure families that no additional medical costs will be incurred and that the body will not be disfigured 1