Commentary: Dealing with the difficult issue of organ donation when a loved one passes on
We need to move from a culture of silence to one of active expression where individuals voice support for organ donation, say NUS’s Voo Teck Chuan and Shahla Siddiqui.
SINGAPORE: One way to make group meetings more productive is to adopt the ground rule that silence means agreement with decisions.
Similarly, the Human Organ Transplant Act (HOTA), which aims to make organ donation more efficient to save lives, presumes that silence – not registering an objection – means tacit consent to organ donation at death.
A recent CNA story revealed that families often harbour doubt that their deceased loved ones would have wanted their organs donated. Reeling from the shock of the death of a loved one, families may be uncertain of their loved one’s wish, “feel that their loved one would not have wanted to”, or that she or he had not been informed of the HOTA.
READ: 'Are you sure he is dead?': Doctors struggle with families’ lack of understanding of HOTA
Such reasons are not valid objections to organ removal under the Act, which has been in force since 1987, and is regularly communicated to the public through multiple channels.
RAISING AWARENESS, REDUCING OBJECTION
Despite this, awareness remains painfully low. In a survey conducted by one of us with 60 over intensive care physicians in Singapore who are involved in referring ICU patients for brain death certification, almost nine in 10 highlighted lack of awareness and acceptance of the HOTA among family members.
Healthcare professionals are put in a difficult position. If a certified brain dead person had not opted out, it is not unlawful to authorise organ removal against the objection of families.
So it is no surprise almost eight in 10 surveyed recommended the need for increasing public awareness of the HOTA. “(We need) to create a societal culture of willingness to donate organs, ” one said.
READ: Timely to review our opt-out organ donation policy, a commentary
Still, a culture of willingness to donate is insufficient if it remains in one’s own mind, as a mental attitude as families’ doubts about a deceased person’s consent for donation under the HOTA will likely remain common and strong.
In Wales where deceased persons will be deemed to have consented to organ donation unless they have expressed a decision in life since 2015, a study on the short-term impact on consent rates and donation numbers found significantly more family support for previously expressed wishes to donate (about 26 per cent) – whether this is a registered or a verbally communicated opt-in decision – than for deemed consent.
It is clear that many family members have yet to accept “doing nothing” (deemed consent) as a positive decision in support of organ donation.
Consistent with previous studies on family support for deceased organ donation, this suggests that families of those who had expressed a prior decision to donate are more likely to agree to donation than those with no prior expressions, notwithstanding families may also oppose donation even if their deceased loved ones had expressed a decision to donate.
EXPRESSED WISHES AND POSITIVE FAMILY EXPERIENCES
Knowledge of prior wishes of donors may take the issue out of the hands of family members at an emotionally tumultuous time and make the experience of donation less distressing.
When a 23-year-old man in England died from brain injuries caused by multiple strokes in 2017, his family agreed to donation of his organs upon knowing that his son had opted in. His father said:
What he did, by joining the Organ Donor Register, was take the pressure off. He had made the decision.
Sometimes all it needs is a conversation, not necessarily the creation of a formal opt-in system.
Despite his sudden death from brain haemorrhage, and the (initial) objection of her in-laws, the wife of a 49-year-old man in Singapore supported donation under the HOTA. They had discussed their mutual willingness to donate in their event of their death and she knew her husband had not opted out.
In both of these cases, family members said they were “very proud” of what their loved one had done. This is a common narrative thread for families of deceased organ donors who had expressed a positive decision.
The families of those who had passed on without expressing a decision to donate may not inevitably object to the presumption of consent and donation under the HOTA framework. They may support for many reasons, because they know and agree with the law, or sense that donation is consistent with their loved one’s past deeds and character.
And they may also find meaning and comfort in their bereavement in knowing that parts of their loved ones live on in others.
But families are more likely to be supportive and have a positive experience of donation under the HOTA if the deceased person had expressed, or, better still, document a decision to donate while alive.
TOWARDS A CULTURE OF VOICE
There are two ways to make a deceased person’s wish for organ donation clearer to their families.
First, for people to opt in under the Medical (Therapy, Education and Research) Act (MTERA), which covers the donation of all organs and tissues for the purposes of transplantation, education and research, evidence of a deceased person’s consent for organ donation should be clear and strong to a family if in addition to tacit consent under the HOTA, she or he had expressed it under the MTERA.
Consent for the donation of kidneys, livers, hearts and corneas (covered by HOTA for people 21 and above) under the MTERA is typically performed by families of minors or foreign deceased persons.
Given that the minimum age for becoming an organ pledger under the MTERA is 18, one way to promote MTERA donation of transplant organs among Singaporean citizens and permanent residents is to prompt individuals to consider it during driving license registration, or during NRIC re-registration.
Second, to encourage people to share their wish to donate with their families. This is already actively promoted by the Ministry of Health. A website Live On, which carries out organ donation outreach in Singapore, has a section on true stories of patients who have benefited from organ transplants.
Posting stories of families of donors who have benefited from the donation, in knowledge of their loved one’s positive wishes, could encourage such sharing.
Informing one’s family of one’s decision to donate may be challenging for some because of the taboo over a discussion of death.
Social media campaigns could encourage people to publicly profess their support for organ donation, by way of a note or a symbol like the cancer ribbon, to help start the conversation with one’s family, or be shown to them when one becomes a viable donor under the HOTA.
What we need to promote is a culture of voice, a culture of expressed willingness for organ donation to make it clear to our families that our choice and our body have not been sacrificed in becoming a gift of life to others.
Voo Teck Chuan is an Assistant Professor at the Centre for Biomedical Ethics at the NUS Yong Loo Lin School of Medicine. Dr Shahla Siddiqui is Adjunct Assistant Professor at NUS, and Senior Consultant in the department of Anaesthesiology at Khoo Teck Puat Hospital.