This Conversation Will Happen if You're on Life Support

Organ liaisons—while compassionate—have to stick to the script.

|
Jul 12 2017, 2:00pm

Miquel Llonch / Stocksy

By the time my grandmother died, she was too old to be an organ donor. Dementia had long set in, her kidneys stopped functioning, and human waste was literally poisoning her. I sat by her bedside as she lay wild-eyed and scared; she'd already lost the ability to speak. When she slipped into a coma, a woman came in to speak to my family. She had pamphlets about hospice care and wanted to discuss my grandmother's last wishes.

Though I'm sure this chick was full of compassion and earnestness, I wanted to punch her in the face. After she gave pamphlets to my mother, she placed a red carnation on my grandmother's bed, just inches away from her feet. I don't know what her thought process was, but I'll never forget the rage that bubbled up. By putting flowers at my grandma's feet, she made it clear to my grandmother was not a person anymore—she was already a corpse.

Though that woman couldn't take my grandmother's organs, it's my go-to memory when I think about what it must be like for grieving families to deal with organ donation. The truth, for better or worse, is both more compassionate and more complicated.

Right now, a person is only eligible to become a donor when they are declared brain dead or they've gone into cardiac arrest. When a hospital thinks that there might be a viable candidate for organ donation, they contact a third-party organ bank or organ procurement association. In fact, federal law mandates that health care providers who administered care to a patient are not allowed to approach families about donations. Organ donation liaisons who work for the organ banks have the really difficult job of asking families (sometimes within 24 hours) to make an anatomical gift.

"The first thing out of our mouths when approaching families is not 'Hi, do you want your loved one to be a donor?'" says Natalie Benavides, vice president of external affairs at Live On NY, a New York-based organization dedicated to conveying the "duality and positivity of organ and tissue donation." advocating for the interests of the elderly.

Benavides, who has worked as a liaison and currently manages a team of 20 organ liaisons, says that there's a script to be followed and that the entire process varies from one family to the next.
"The most important thing that we ask [the family] is, "What are you most worried about right now?" she says. "And the response to that question is really telling."


More From Tonic:


Over the phone, Benavides is warm and attentive, her voice indicative of how seriously she takes her team's responsibility. Quite the opposite of the grim reaper stereotype many of us imagine.

"We really hope the providers that have been working with the families have been very clear along the way about how unlikely that this patient will survive," Benavides says. "It's not ideal to walk into a room and speak to a family and have them completely not understand or not accept the death had occurred."

I think back to my experience with my grandmother, and wonder if the liaison who came to her hospital room was insensitive to place the carnation by her feet, or if I was just in denial. When I ask Benavides how often doctors fail to communicate effectively, she says it's hard to give a concrete answer. Medical jargon is difficult for almost anyone to understand, plus the mental anguish a family is experiencing might be more of a factor than a doctor with a shitty communication skills.

"Every single family displays grief differently," she says. "They're not just one unit feeling grief in the same way. So maybe sister really gets it, but mom is just still not comprehending. The one thing that is never within our control are the dynamics of the family, and we want families to be unified around donation decisions."

Despite whether or not the doctors have given great explanations, Benavides says two things that surprise me. The first is that, despite trying to get her to spill stories of Jerry Springer-style donation drama, most families are genuinely happy to talk about donating organs for their loved ones. The second surprising fact is that the process is not quick and in most cases, organ liaisons spend several days with families.

Even when they decide organ donation isn't right for them, Benavides says most families end up with a better understanding of what has happened. For those who do decide to donate, Benavides believes that going through the process can—even for a brief moment—help provide families with a sense of relief. There's research that suggests many families who have consented to donation feel like they found comfort in the idea that something positive could come from the loss.

"[These family members] just want to be reminded of how special their loved one was, and what a wonderfully heroic thing and courageous thing that they did and their loved one's did," Benavides says.

In the United States, there are laws in place to uphold the wishes of any registered donor who decided they wanted to donate their organs. Families cannot override their wishes, but about 20 people die waiting for organs each day. The main factor of America is getting more people registered to donate. In New York State, Benavides says over 80 percent of people die without any direction on whether or not they'd like to be organ donors.

"It's a gift to talk to your loved ones about what you want at the end of life. And that's everything—that means tell your loved ones if you want to remain on the ventilator, and tell your loved ones what you want in terms of donation," she says. "So that when they're grieving your loss, they are free to grieve and not worry about interpreting your decisions."

Correction: A previous version of this article describes Live On NY as an organization advocating for the interests of the elderly, but it is actually an organization promoting the decision to donate and organ.

Read This Next: Four Ways We Can Shorten the Organ Donor Waitlist