Nova Scotian with ALS getting medically assisted death, donating organs

From a hospital bed set up in his kitchen in his Lunenburg, N.S., home, 71-year-old Dr. Brian Davis is excited about his future, even though it includes his imminent death.

On Thursday, the former dentist and Lunenburg town councillor will be transported in an ambulance to the QEII Health Sciences Centre in Halifax and will be the first Nova Scotian with ALS (amyotrophic lateral sclerosis) to be a multiple organ donor following a medically assisted death.

“We’ve been through a lot of hurdles,” Davis said.

But one thing that has not weakened is his determination to be an organ donor.

Davis was diagnosed with ALS, which is also known as Lou Gehrig’s disease, in the fall of 2017.

He’s spent the last few weeks of his life working with his palliative care team, his family and the Nova Scotia Health Authority to make being an organ donor happen.

“With this difficult diagnosis that a person gets, it’s like there’s no good news, but now that I’ve inquired about being an organ donor, I think it’s great news,” he said.

“Wouldn’t you love to be leaving this beautiful world, but then sharing a life with a half a dozen people?

“I mean a double lung, a heart, two kidneys and a liver — when you think that you could share life with potentially several other people, that’s exciting.”

Unchartered waters

Davis, a former Marblehead sailor, found out was he was in uncharted waters because of his ALS and his age.

Usually 65 is a cutoff for organ donations, but each case is considered on an individual basis. Davis, 71, who ran the Boston Marathon in 2014, is confident his heart and lungs are strong.

All the tests he’s taken in the last two weeks have shown he’s an excellent donor candidate.

Dr. Stephen Beed, the medical director of Nova Scotia’s Legacy of Life and critical care organ donation program, said Davis’s situation is unusual.

“Organ donation after medical assistance in dying is very uncommon. It’s becoming more common as people in that situation recognize the opportunity,” Beed said.

Davis hopes to inspire others

Beed said people considering medically assisted death usually have health conditions that would exclude them from being donors. But in Davis’s case, that wouldn’t be the situation.

“We want to do our best to respect his wishes and make it happen,” Beed said.

Davis hopes his decision inspires others to become organ donors, especially people with ALS.

“I want to let every ALS society across Canada to know what people with ALS can potentially do and I think it will make their journey a lot easier,” Davis said.

“Up until now, the only thing that kept us going was the hope there would be a cure discovered before we go.

“But now to know there is something so positive that you could do, I think people will take it on when you think of the joy it would bring you to help others.”

‘The least we can do is to make it happen’

Now that he’s been cleared to donate, Thursday is the day his organs will be harvested.

Davis does not see his decision as heroic or selfless, but others do.

“It’s remarkable that in the midst of his health crises, he is being generous and he and his family are thinking that in his death other people can live,” Beed said.

“And that is huge. For him to be thinking of other people at this time in his life is pretty amazing.  And if he is going to think that way, then the least we can do is to make it happen.”

Sitting on their front porch in Lunenburg with his wife, Susan Atkinson, and stepdaughters, Alison and Becky Keen, they all marvel at his desire to give back right until the end.

“From a family’s perspective, it’s such a deep lesson. Pride doesn’t even do it. The lesson we are learning from this is that you can be so selfless, as Brian is being in this,” said Becky Keen.

“That is a gift I will carry, that my children will carry and we will all carry it. That’s huge.”

Davis hopes others in need of an organ will carry a part of him too.

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