Table 4.

Harms of unsuccessful DCD as reported by donor families

Harm	Representative quotes from family members
Waste Inability to use life-providing organs to benefit someone else Loss of high quality organs Inefficient use of hospital resources	People could have been saved…potentially there was people that died, because his organs weren’t able to be donated. And all the other people that could have had a quality of life. It’s even harder, I look at, my husband was thirty-eight when he passed, so his heart was strong, you know?…those are organs you would want. It was just like, this amazing wonderful thing that was going to happen, which never happened. So then, it was, we felt like we let down everybody that came, like it was a wasted trip for them [transplant team].
Inability to honor the donor Failure to fulfill the donor’s wishes Missed opportunity to validate their loved one’s admirable characteristics	I didn’t want to wait until things started to fail and that we were past the point where he would actually be able to donate his organs, because it was, basically, my last chance of giving his last wish or upholding that. …the one thing he [donor] wanted to do most with his life – and it would’ve been something that I know [donor] would love to have done, because, like I said, he had a pretty tough life. And this was the final thing that I think would’ve made him happy.
Struggle to find meaning Inability to find a silver lining Donor does not “live on”	You would have felt like she kind of died with a purpose. …being able to say, ‘but look at the people he helped’ or maybe hearing their stories, or seeing that they’ve lived, and moved on, and they have that quality of life, and hearing from the family just how it helped them, I think that almost lessens your pain, and lessens your grief, when you realize, OK, you’re going through this, but there was that silver lining…So I think that, because he wasn’t able to donate, I think it’s harder for my children and I, and it will be. In my heart he would’ve lived on, because part of him is keeping somebody else alive. So therefore he’s not completely, totally gone. He’s still – because he’s keeping someone else alive, therefore, he’s still alive.
Disrupted bereavement Agony of waiting for loved one to die Prolonged closure due to uncertainty of donation outcome Doubt regarding decision to withdraw life-supporting treatments	So everything just kind of prolonged the agony of this whole situation. Because we knew it was hopeless yet we waited and waited and waited. For me, if someone were to say, ‘OK, we’re going to do the surgery and then we’re going to be done. [Donor] will die’ That I didn’t have to sit there and watch her die. I could have just kissed her. I could have said goodbye. I could have walked out and they could have harvested her organs and it would have been over. He didn’t pass within those three hours, and it was actually another three hours after that before he did pass and I’m going…did we take that life support off when it wasn’t his time to go?
Loss for the recipient	I was thinking that this person is going to be very fortunate. This person is waiting. Waiting in anticipation of, you know – their life can be made whole, or they can go on with their life. And it was a match. I find out they said it was a match and I guess that was part of the let-down, because now this person just didn’t get it. Now, you picture yourself – you’re waiting for something, and this is life-threatening. You’re waiting for something and it didn’t happen. …it’s not just the person who needs the organ, it’s the family. They’re probably on a roller coaster up, and now ‘Oh he’s getting it again. Oh, he’s not. Yeah he is, no he’s not.’ And it’s just, they don’t need to go through that.