7 | Discussing donation with the family

Discussing organ and tissue donation is best done by someone with knowledge, skill, confidence and empathy. Organ donation should not be discussed until the family has understood that death is inevitable. This discussion should not be done prematurely. This usually requires several family meetings. The ODNZ medical specialist is available for advice and support.

Sometimes the family raises organ donation before the prognosis is clear. This should be acknowledged sensitively and documented in the clinical record. The family should be told the immediate treatment plan and that the treating team will take responsibility for discussing organ and tissue donation with them in the future, should it become appropriate.

How are these meetings the same as any family meetings?

Family meetings can be difficult, emotionally challenging and unpredictable for everyone involved.

It is usual to experience a range of emotions including apprehension, sadness, guilt, fear of causing distress etc.

Family meetings should always involve an ICU doctor and the nurse caring for the patient and family.

Ensure that all key family members are present before starting the meeting. The family will decide which family members should be present. A chaplain, cultural leader, social worker or others might also be present.

Some families will require a translator. Use a professional translator and not a family member. A professional translator is fluent in both languages and has some medical knowledge. The role of the translator is to accurately translate what is said and not to “soften” or “interpret” the communications.

A planning meeting should be held with all staff including the translator prior to the family meeting. Topics to be discussed include:

• offer of a karakia or prayer and who will do this
• staff members’ roles
• who will introduce the family and staff
• family relationships and the family’s current understanding
• topics to be discussed
• potential problems
• cultural sensitivity.

Family meetings should not be rushed.

Meetings should take place somewhere that is private, comfortable and quiet, and not at the bedside.

Meetings should be protected from interruptions by people and mobile phones.

It is important that the ICU staff aim to develop mutual respect and trust with the family.

Following introductions, the ICU doctor should use everyday language to:

• explain the sequence of events that have occurred up to this point and ascertain if this is what the family have understood from previous meetings
• explain the patient’s current condition
• discuss realistic potential outcomes and tell the family if death is a possibility
• find out what is important to the patient and ascertain the family’s views
• outline the immediate plans.

During the meeting:

• allow time for silence to support active listening, give the family time to absorb complex and confronting information, and gather their thoughts
• provide an opportunity for the family to have their questions answered
• ensure that there is mutual understanding and a consensus on the way forward
• schedule a time for the next meeting.

How are these meetings different from other family meetings?

The discussions about organ and tissue donation should not occur at the first family meeting except in circumstances where the patient is being admitted solely to explore donation.

Prior to the meeting where organ donation will be raised, the family will have been told either that brain death was suspected (and would be tested for) or that continued intensive therapies might not be in the patient’s best interests.

Organ donation should not be discussed until the family has understood that death is inevitable.

The discussion about organ donation is typically more straightforward than previous discussions, eg about the likelihood of death and about withdrawing intensive therapies.

It is not necessary to try to cover everything at one time and several meetings about donation are sometimes required.

The role of health professionals in these meetings is to provide the family with information on organ and tissue donation and support them while they make their decision. Health professionals should view their own performance on the basis of how well they have done this role and not on the donation decision.

What is the purpose of this discussion?

• To offer the option of organ and tissue donation in a professional and sensitive manner.
• To provide the family with information about donation and answer their questions.
• To support the family to come to a decision about donation that is right for them.

The roles of ICU staff

The roles of the ICU staff need to be allocated at the planning meeting.

• The ICU doctor’s role is to ensure the family understand the prognosis.
• Discussing donation should be done by an intensivist or an ICU Link Nurse.
• The bedside nurse’s role is to support the family.

It is important that the bad news role is separated from the support role. Following the family meeting, the bedside nurse should continue to support the family, ensuring their understanding is accurate. If the family needs further clarification this should be communicated to the ICU doctor or the ICU Link Nurse.

An outline of the meeting(s) should be documented in the clinical notes.

Preparing for the meeting

These conversations are uncommon for everyone and it is normal to feel anxious about using the right words.

Prior to the meeting, consider what you are going to say and the words you will use. Use plain, simple English and no medical jargon.

It is helpful to have a planning meeting with the staff who will be present. See section 7.1.

Be confident, calm and free of other commitments.

Some health professionals are concerned that raising donation will cause additional distress to the family. When donation is raised in a compassionate and sensitive manner, families are usually grateful for the opportunity to consider donation.

Your role is to provide the family with information on organ and tissue donation and support them while they make their decision. Your role is not to persuade or discourage the family from donating.

Do not presume that you know what the family will decide as this could modify the way you approach the meeting.

The family need to come to a decision that is right for them. One decision is not morally superior to another.

When should donation be mentioned to the family?

Donation should only be discussed after the family have understood and accepted the inevitability of death. Families should not be offered the option of donation while they still think that the patient might recover.

The “right time” to discuss donation will depend on the family. The key family members should decide who needs to be involved in the discussion about donation.

It is recommended that the discussion about donation takes place at a separate meeting from the one where the inevitability of death is discussed. Only a short break may be required between these two meetings.

There is no rush to discuss organ donation. If donation is discussed prematurely, before the family has had time to understand that death is inevitable, this might compromise their ability to consider organ donation.

In the context of brain death, ODNZ recommends that discussion about organ donation should take place after the determination of brain death (the 2nd clinical assessment). Ensure the family understands what brain death is and that death has occurred, before donation is raised.

In the context of DCD, organ donation has to be discussed with the family before death has occurred, but only after a consensus decision has been made that intensive care therapies will be withdrawn as they are no longer in the patient’s best interests. Ensure the family understands that when therapies are withdrawn death will almost inevitably follow soon after.

ODNZ recommends that DCD be discussed with ODNZ before it is discussed with the family.

In some instances, the discussion about donation will take place before there is certainty about whether the donation will be DBD or DCD and both options should be discussed with the family.

If the family raises organ and tissue donation when the outcome is uncertain, this should be acknowledged sensitively and documented in the clinical record and that the ICU team will take responsibility for discussing donation with them in the future, should it become appropriate.

How should donation be discussed?

Speak slowly, clearly and compassionately. Look at the family and assess the effect of what you are saying. If you feel that you have said something poorly, pause, acknowledge this and try saying it another way.

Allow time for pauses, opportunities for silence and time for the family to speak.

When you are certain that the family has understood that death is inevitable or has already occurred and are ready to discuss what happens next, organ donation can be introduced.

We recommend a short simple open-ended form of words as an introduction to donation:

 “This is a situation where organ donation is possible.” 

This makes it clear that donation is now appropriate to consider but it does not convey an expectation or an obligation to donate. Pause after your introduction and take your cue from the family as to what you might say next.

If the response is an immediate “No”, it is reasonable to explore this further to ensure this decision is not based on misinformation and that everyone’s views are heard. Accurate information can then be provided.

Other exploratory phrases can then follow:

“I will explain to you what that would involve,” or “It is possible he/she could donate organs to other people and I will discuss this with you”.

In order for the family to make an informed decision ODNZ recommends that they are told:

• transplantation is a successful treatment for patients with a variety of diseases
• the process of donation is carried out respectfully
• the ICU staff can discuss any issue or answer any questions the family raises before making their decision.

Families differ in the amount of information they require. Do not assume every family will require the same information.

Be prepared to discuss many issues, including the details of the organ and tissue donation process and that donation will involve a delay of a number of hours from when the family agree to donate.

It is all right to say “I don’t know, but I will find that out for you”. ODNZ can provide further information about all aspects of the organ and tissue donation process and the follow-up support available for the family.

Allow the family plenty of time for questions and discussion, including time alone if they wish. Don’t push for an immediate decision about donation.

Periods of silence are often an important part of decision-making and do not necessarily signal the end of the meeting or that the decision about donation has been made.

This process may involve more than one meeting.

ODNZ recommends that everyone involved in deceased donation continue to refer to the person by their name and never use the words:

• cadaver
• corpse
• remains
• body
• harvest
• donor (can be used by health professionals but never when talking to the family).

These words are sometimes used inappropriately in the context of organ donation by pathologists, the police, morticians and transplant professionals. This is not acceptable. We recommend that you correct them to use words which are sensitive to the family and respectful to the patient.

Use unbiased, family-focused words such as:

• discussing organ donation
• offering the option of donation
• family agreement to donate
• declining the option of donation.

Do not use organ-focused terms such as:

• seeking consent
• obtaining consent
• requesting organs
• asking for organs
• denying consent
• refusing donation.

ODNZ recommends that during conversations with the family, the process of surgical removal of organs should be referred to as:

• <Patient’s name> donor operation or donor surgery.

It is acceptable to use the following terms in conversations between health professionals:

• donor surgery
• organ removal
• organ retrieval
• organ procurement
• organ donation.

It is never acceptable to use the term organ harvest.

ODNZ recommends that ventilation be described as:

• mechanical ventilation
• mechanical ventilatory support or
• breathing machine

Avoid using:

• breathing
• life-support.

While it is true that the brain dead patient’s chest rises and falls with the ventilator cycle, this is not “breathing”. Ventilating a brain dead person is not “supporting life”.

Sometimes a family might ask a question you are unable to answer. Acknowledge this and tell the family you will find an answer. Contact ODNZ who will assist you with this.

The views of the patient

The patient’s views about donation, if they are known, should be discussed.

If the patient’s views have never been expressed to the family, some families may find it difficult to make a decision. It can sometimes help the family to talk in general terms about their family member including their values and what was important to them. This may enable the family to decide without knowing for certain what their relative would have wanted.

ODNZ recommends that health professionals do not suggest looking at the driver licence to aid with this decision. If the question of the driver licence information is raised by the family, please refer to Section 8.6. This information will be provided by ODNZ only if requested by the family.

The views of family members

Families often discuss their own views about donation, both for themselves and for their family member.

Some view donation as a way of “honouring” or “celebrating” the life or character of the patient.

Health professionals should not suggest to families that donation will help them in their grief. Some who do choose to donate come later to see donation as having “helped them in their grief”. There is no objective evidence of either benefit or harm resulting from the donation process when it is done well.

Health professionals however should not say to families that they should donate so that something “positive could come from the tragedy”, although some families express the view that donation is “something positive”.

Family consent

The Human Tissue Act 2008 requires both informed consent and a lack of informed objection before donation can occur. However, it does not describe what constitutes “informed consent” in the context of donation. The Act states explicitly that the driver licence information does not constitute informed consent or objection.

The accepted consent process, whereby the “family” comes to a consensus decision about donation, meets the requirements of the Human Tissue Act.

Not all family members wish to participate in decision-making. Some view themselves as being there to support others rather than express their own opinions. This may mean that the family accepts a minority view in either direction.

A family member and a health professional will be required to sign an Authority for Organ and Tissue Removal Form.

Where verbal consent has been given, the form must be signed both by a health professional and a witness to the informed consent.

If there are no family members 16 years of age or older, consent must be discussed with ODNZ.

What is involved in the organ donation process?

The donor coordinator organises all aspects of the organ and tissue donation, which includes collecting a large amount of information from many sources and discussion with a number of teams and services, including at times in Australia.

The donor coordinator is responsible for setting the time for the donor surgery. ODNZ works to minimise the time from family agreement to donation until commencement of the donor surgery. This is to minimise additional stress for the donor family and to minimise the impact on the ICU and other services at the donor hospital.

It typically takes 12 hours or more from family agreement to donation (in both DBD and DCD) before donor surgery commences.

The donor coordinator travels with the donor surgical team(s) to the hospital and will usually meet the family prior to the donor surgery. The donor coordinator can provide further information about the donation or transplantation processes, answer any other questions that the family may have and explain the follow-up that can be provided.

The family can be with their family member before and after the donor surgery if they wish.

The removal of organs is performed by experienced surgeons and can take 3–6 hours depending on the organs being donated. The surgical incision is closed and covered with a dressing.

Any organs or tissues that are unable to be transplanted after they have been removed will be returned to the deceased person, if that is the wish of the family. The ICU nurse or donor coordinator will discuss tissue return with the family and the donor coordinator will facilitate this.

Organs and tissues that can be donated

The donor coordinator will inform the ICU of the organs and tissues that can be donated.

With DBD, heart or heart valves, lungs, liver, kidneys, pancreas, skin and eye tissues can potentially be donated.

With DCD, lungs, liver, kidneys, heart valves, skin and eye tissues can potentially be donated.

Donor blood samples are always taken for testing for transmissible infectious diseases including HBV, HCV and HIV. These are tested only after family agreement to donation. If any of these results have implications for the family, ODNZ will ensure that appropriate follow-up is provided. Positive test results do not preclude donation.

Additional investigations (eg echocardiogram, CT chest or abdomen, coronary angiography or bronchoscopy) might be needed to determine if specific organs can be donated.

Sometimes organs are only found to be unsuitable when they are inspected during the donor surgery or following the results of biopsies taken during the surgery. Occasionally no organs are able to be donated but tissues are able to be donated for transplantation and research.

Eye donation involves removal of the eyes and not just the corneas. Following the donation, a shield is placed under the eyelid to ensure the appearance is not altered. The corneas and sclerae are transplanted.

Heart valve donation involves removal of the heart and the valves are then removed. If the family wishes, the remaining heart tissue is returned to the deceased person.

For skin donation, a very thin layer of skin is removed from the fronts and backs of the legs.

Funeral arrangements

Organ and tissue donation does not usually delay funeral arrangements or affect the choice of burial or cremation. It does not prevent having the family member at home or having an open casket.

Confidentiality

The identities of the donor, the donor family and the recipients are kept confidential. ODNZ requires that all professionals involved in donation and transplantation maintain this confidentiality.

Breaching confidentiality potentially allows recipients to identify their donor. It may lead to unwelcome communication, unwanted media attention and can adversely affect both the donor family and the recipients.

The donor coordinator provides the donor family with some anonymous information about the outcome of the donation, including recipient outcomes if the family wish to receive this.

Increasingly families are posting on social media about their relative’s death and the donation. This often includes personal details of the donor and the date of donation.

Social media posts are frequently used by journalists to contact families. This may be distressing for families. Once personal details are made public they can be widely shared and are permanently available online.

ODNZ recommends that ICU staff inform families about the consequences of posting such details.

Who are the recipients?

The allocation of the organs is the responsibility of the transplant services.

Recipients are selected on the basis of their need for transplantation and their ability to benefit from it. They must also be able and willing to commit to life-long treatment and medical supervision required following transplantation.

Recipients are not selected on the basis of “moral worth” or their financial or social status. Organs from younger donors are not necessarily allocated to young recipients and young recipients can receive organs from older donors.

Recipients and their families are grateful for the opportunity to receive a transplant.

Directed donation

If the family raises the subject of “directed donation”, ie a wish that organs be directed to (or not to) specific people, this should be discussed with the donor coordinator. There are very specific circumstances in which directed donation might be possible. ODNZ has a detailed protocol which addresses the complex issues involved.