An Ontario man chose a medically assisted death at home. In a world first, he was able to donate his lungs

Mike Neill spent his final night alive with a small group of friends at his Burlington townhouse. It was the culmination of a week of meals out at favourite restaurants, phone calls with former colleagues and people stopping in for a last chat and hug goodbye.

The 48-year-old with Huntington's disease would soon have a medically assisted death, relieving his fear of being trapped in a deteriorating body and bringing an end to the debilitating pain caused by the fatal condition that had earlier killed his father.

Days before, during a celebration of life, more than 200 people cheered as Neill received an honorary promotion to sergeant at Peel Regional Police. With tears in their eyes, friends hugged Neill tight.

Illness is part of life; so is the end," Neill said in a video recorded several days before his death, involuntary movements related to Huntington's making his head swing back and forth. I'm looking forward to the end."

Then, with a flash of his trademark wide grin, The big checkout."

This is more than a story about Neill and why he chose medical assistance in dying.

This is a story of how health-care leaders went to extraordinary lengths, pushing medical boundaries and overcoming ethical hurdles, to help Neill fulfil his end-of-life wishes, making him the first person in the world to have a medically assisted death at home and donate his organs for transplant.

Until that winter day in 2020, people who chose medical assistance in dying, known as MAiD, and who wanted to donate their organs had to die in hospital. For some, this meant making a heart-wrenching choice between being an organ donor and having the death they wanted at home.

But medical advances, pioneered in Toronto-area hospitals, had laid the groundwork for this world first. And leaders in organ donation and transplant believed they had the experience to move ahead with Neill donating his lungs after his medically assisted death at home.

So far, lungs are the only internal organ that can be retrieved from a donor who dies outside of hospital. As of March 1, 63 people were on the provincial wait list for the organ; about 20 per cent will die while waiting for new lungs.

Each opportunity for a new organ donor, that's another life saved," said Dr. Andrew Healey, chief medical officer of donation at the Trillium Gift of Life Network (TGLN), the province's organ donation agency. But what drives our work in donation is honouring the wishes of somebody at the end of their life.

In this case, we helped a person be an organ donor without him having to compromise anything about his vision of what the end of his life would be.

That's a very powerful message in organ donation."

Those involved in Neill's case say it is among the most rewarding experiences of their career and believe it will inspire further innovation in organ donation and transplant.

His friends are not surprised his death has touched so many. They say the way he died is the way he lived: Helping someone with a smile on his face.

Neill had long known he would not live to be an old man.

After his father was diagnosed with Huntington's disease, Neill had a test to determine whether he carried the gene for the condition. A child of a parent who has Huntington's has a 50/50 chance of getting the disease themselves; that it can cascade through generations is one of the condition's many cruelties.

Neill found out he carried the gene in 2004 at the age of 33.

At the time, he was a constable with Peel Regional Police and an Ontario Hockey Association referee. Friends say the qualities that made Neill a good police officer - cool-headed, whip-smart, compassionate, even under pressure - also made him an excellent hockey official who constantly encouraged young players.

I always said, he's the guy you'd want to show up to help your mom," said Joe Paolini, Neill's close friend of 22 years and colleague at both Peel police and the OHA.

For the first few years, Neill kept his diagnosis largely to himself. He knew he would eventually decline like his father, John, who retired after 30 years with the Toronto Police Service and was finding it increasingly difficult to walk, talk and eat on his own. But Neill hoped he wouldn't face the stark reality of the disease until later in life.

Then, around 2010, the first signs of Huntington's emerged: a slight unevenness in his gait, occasional uncontrolled tremors in his hands, lapses in short-term memory.

Neill managed to work through the early symptoms, finding ways to cope with each new difficulty. Still, his tenacity wasn't enough.

By 2012 Neill struggled to make quick-fire decisions while officiating the OHA's fast-paced game.

Looking back, I remember a few times when Mike would put up his hand to call a penalty and I could tell that he had forgotten the player's number," Paolini said. After a few games like that, I think that's when he realized that it was time to step away."

Neill officiated his last OHA game in December 2012. Photos taken during the Friday game at Oakville's Sixteen Mile Sports Complex show Neill smiling with friends and family who came to mark the end of his 20-year officiating career.

There were more people in the rink than I could have ever imagined," Neill told a reporter from the Oakville Beaver about the event that raised $1,500 for the Huntington Society of Canada. You turn a bad situation into something good, and I hope that's what we've done tonight."

Friends say this was Neill's typical outlook; relentless optimism even as his disease stripped away the things he loved most.

Already that year, Neill had given up front-line police work and stepped into an administration role. Huntington symptoms meant he could no longer carry a gun or drive. He had also taken himself out of the running for promotion to sergeant, a position his colleagues say he desperately wanted and deserved.

He wanted to be in that role of supervisor, to be in charge of a platoon, to help mentor the officers coming up," Paolini said, noting Neill's many successes as an officer, including his work in Peel's Special Victims Unit. He was all about helping people. But he knew he couldn't take on being a sergeant with his condition so he stepped aside so someone else could have the chance."

Neill had two long-term relationships. Friends say both ended, in part, due to Huntington's disease. Neill did not want to have children.

He consciously made that decision because of how the disease can destroy families," said Philip Yates, Neill's childhood friend of 40 years. He always said the disease would stop with him."

With his symptoms worsening, he talked more and more about medical assistance in dying.

His grandfather had died of Huntington's disease and Neill had watched his dad's slow and painful decline. In his final years, John Neill could no longer speak and needed full-time care in a nursing home, eating meals through a straw.

Mike could have lived until he was 65 or 70 but he'd have no life," Yates said. He didn't want that. He didn't want to be a burden and get to the point where his dad was. He wanted to die before he became incapacitated.

He was very clear about this."

One year after Neill was told he carried the gene for Huntington's disease, Dr. Marcelo Cypel arrived at Toronto General Hospital to help develop a device allowing human lungs to live outside the body.

It was 2005 and Cypel, along with thoracic surgeon Dr. Shaf Keshavjee, now surgeon-in-chief at University Health Network (UHN), saw the immense promise in creating the Toronto Ex Vivo Lung Perfusion System.

The device, which keeps lungs at body temperature and pumps oxygen and a specially designed fluid through the fragile organ, is now routinely used to evaluate donor lungs and to repair those previously unsuitable for transplant.

Cypel, surgical director at the Ajmera Family Transplant Centre at UHN, says it has saved many lives.

Typically, organ donation happens after someone dies but is still on life support, which keeps the organs alive and gives the surgical team time to co-ordinate a recipient and retrieve the organs in a controlled way.

With the help of the Ex Vivo system, lungs can now be retrieved from donors who have died unexpectedly, such as from cardiac arrest, and who had not been placed on life support.

The strategy, called Non-Perfused Organ Donation (NPOD) and developed with Healey and teams at TGLN and William Osler Health System, has allowed more people to be lung donors. Cypel says it can help expand the donor pool even more, including after medically assisted death at home.

Compared to other organs, lungs can survive longer without blood circulating through them after someone dies. But they need to be full of air.

The NPOD protocol works by re-inflating the lungs of people who have legally died, buying about three hours before the organ needs to be retrieved for transplant. Cypel and Healey knew this would be enough time to co-ordinate lung donation after medically assisted death at home.

Since Canada legalized MAiD in 2016, more than 6,800 people in Ontario have chosen a medically assisted death. Of those, 48 per cent died at home and 42 per cent died in hospital, with the remainder dying at a retirement home or long-term-care home, according to the most recent January report by Ontario's Office of the Chief Coroner.

Many people - about 60 per cent - choose MAiD due to cancer-related illness, making most ineligible for organ donation. But for those with underlying conditions that don't affect major organs, including neurodegenerative diseases, such as Huntington's, donation is largely possible.

So far, 53 people in Ontario have donated organs after a medically assisted death, according to data collected by TGLN.

But doctors and nurse practitioners who provide MAiD say more people would be donors if they didn't have to die in hospital, their wish to donate outweighed by their deeper desire to die at home. Healey says helping more people have the deaths they envision will likely become even more pressing as the federal government looks to expand access to MAiD in the coming months.

By the fall of 2019, Healey and Cypel thought it was time to proceed with lung donation after medically assisted death at home, something nobody in the world had yet tried. All they needed was the right donor.

That November, Dr. Helen Pyle, a family physician in Halton and registered MAiD provider, told Healey about Neill, who she had recently assessed and approved for a medically assisted death. She believed Neill was an ideal candidate for the world first: A former police officer who would only die at home but felt strongly about being an organ donor, saying he wanted to save another person's life after seeing so many traumatic deaths on the job.

He struck me as a man who was always a giver, a caring person," said Pyle, who has provided MAiD to more than 250 people.

Quickly, Healey, Cypel and other health-care leaders, including those at Ornge, Ontario's air ambulance service, worked out the details. It helped that Neill lived near a Burlington hospital, which would allow surgeons to retrieve his lungs shortly after his death. That he was so clear and upfront about his end-of-life wishes helped assuage any ethical concerns.

Some physicians and ethicists worry there is a chance a person's desire to be an organ donor will lead them to prematurely choose a medically assisted death. But Healey says in Canada, which requires a capable patient to give first-person consent, organ donation is only raised after a person has been approved for MAiD.

People who choose to die by medical assistance have made the most powerful decision anyone can make," he said. They know exactly what they want at the end of their lives; nothing is going to change that. We need to respect their choices."

The night before Neill died, a nurse came to check on him and insert two IV ports - one near each wrist - so he would be ready for the procedure that would end his life. She assured Neill that he could eat and drink whatever he liked, including a beer or two with his friends.

Mike kept asking; he didn't want to do anything that would put the organ donation in jeopardy," said Jay Watson, a sergeant with Peel Regional Police and Neill's friend since 1997.

By midnight, Neill and three friends were lounging on his basement couch, eating chips and reminiscing while Police Academy" movies played on his big-screen TV.

Mike wanted to pull an all-nighter," said Yates. The funny thing was that most of us passed out for an hour or two. But Mike went all night; he outlasted all of us."

In the morning, more people came to see Neill, gathering in his kitchen and tiny living room. Though his friends recall being nervous, they say Neill was at ease.

It was the happiest I had seen him in months," Watson said. It was like this big worry had lifted from his shoulders."

When Pyle arrived, she saw Neill sitting on the couch in black athletic pants and a brown fleece. She recalls being deeply moved by the number of people who wanted to be with him when he died.

Just after 10 a.m., Watson told Neill to step outside.

A dozen police cars filled the parking lot, many with red lights flashing and sirens blaring. Twenty officers stood in line facing Neill's house, some wearing their dress uniforms and all standing as if honouring a head of state.

He went down the line, hugging every one of them," said Yates. You could tell it meant the world to him."

Hank Crawley, a Peel constable who organized the honour guard, was last in line. During the embrace, Neill leaned forward and kissed him on the cheek.

What do you say to a man who is going to walk back into his house and die?" Crawley recalled, his voice catching. I told him to say hello to my dad; he had died about a month and a half prior. And Mike threw his arm around me and said: I will.' "

After a final wave, Neill returned to his living room. His death was scheduled for 11 a.m.

When it was time, Mike went around the room and everyone said their last goodbye," Yates said. Then he sat down on the sofa - he was laughing; he really was happy - and he said: Is everyone good? Because I'm good.' "

The tightly orchestrated steps for his lung donation started the moment his heart stopped beating.

Justin Smith sat in the back of the ambulance with his partner, Rob Teranishi, counting down the minutes until they would collect Neill's body.

The two critical-care flight paramedics with Ornge had volunteered for this medical first, practising the protocol in a Toronto ambulance bay, rehearsing each step.

Arriving in Burlington early, they had test-driven the route from Neill's house to Joseph Brant Hospital, where surgeons would later retrieve his lungs.

Now, in the back of the ambulance, the stretcher beside them ready for Neill's body, they were quiet.

It was all I could do to keep myself together," said Smith. I remember looking at the clock and feeling my eyes well up. And I could see Rob doing the same thing.

We were thinking about the people inside and the conversations they were having and knowing there would be this very precise moment when it would be over."

Just after 11 a.m., a knock on the ambulance door let them know it was time to go inside.

The room was still when Smith and Teranishi entered. Carefully, they moved Neill's body, still upright on the couch, to the stretcher and gently covered it with blankets, part of the transplant protocol.

Once in the back of the ambulance, Smith and Teranishi attached a cardiac monitor to Neill's body to ensure his heart had stopped beating. After five minutes, Pyle and a second physician declared Neill dead, as required by law for organ donation after a medically assisted death.

Then the paramedics intubated Neill's body, so they could inflate his lungs. Next, they inserted a tube into his stomach to empty its contents, before placing him on his stomach. After 10 minutes passed, and confirming his heart was still stopped, Smith turned on the machine that would push air into Neill's lungs to keep them healthy for transplant. Again, the pair waited to ensure Neill's heart did not restart.

The oddity of this situation was the worst-case scenario was the resumption of life," Smith said. That was the outcome we absolutely did not want - and not what the patient wanted, most importantly."

Neill's colleagues provided the ambulance with a police escort for the short drive to the hospital. An operating room was ready with a surgical team standing by to retrieve Neill's lungs.

Dr. Ian Preyra, the hospital's chief of staff, felt a pang of emotion when he saw Neill's body. He had spent weeks working with the teams from TGLN, Ornge and Toronto General on the multi-step protocol. This part had to go as smoothly as planned.

There was this urgency; the sooner we could get the lungs to Toronto, the greater the chance the transplant would be successful."

In the operating room, the surgical team stood silently for a few moments to honour Neill. Preyra was there, as were Smith and Teranishi, who had asked to remain until the surgery started. Later they learned how quickly it all went; the time between Neil's death on his couch to when his lungs were removed and packed for transport to Toronto General was just 62 minutes.

Driving home after his shift, Smith thought of Neill, of how he died at home, knowing his body would soon save another's life, and was grateful to have helped fulfil his final wish. In his 10-year career, Smith has seen too many people die without friends or family at their side.

You're meant to be surrounded by people who love you at the end. He had that, and not enough people get that chance."

Dr. Jonathan Yeung knew at first glance Neill's lungs were close to perfect.

They were beautiful; white and light, like little pillows."

The lungs, hooked up to the Ex Vivo system, lay within its clear dome, the device pumping oxygen and special fluids into the organ, which had arrived at Toronto General on ice less than three hours earlier.

Yeung, a thoracic surgeon at Toronto General, watched the lungs, warmed to normal body temperature, slowly move in and out. Monitors tracking the health of the organ confirmed they were ideal for transplant.

In a nearby operating room, the recipient - a woman in her 60s with end-stage lung disease - was being prepped for surgery. Yeung had watched her condition deteriorate in recent months and was glad she was getting Neill's lungs. The Star has not identified the recipient or included dates of Neill's death to protect her anonymity.

Fifteen hours and 29 minutes after Neill's lungs were removed from his body, Yeung finished sewing them into the recipient, her blood turning them a light pink.

Just eight hours after leaving the operating room, the recipient no longer required a ventilator to breathe. One month later, she was home, recovering. She continues to do well.

Yeung hopes this world first - the case report published in August 2020 in the American Journal of Transplantation - encourages other transplant programs to offer lung donation after medically assisted death at home.

Though it won't yet be routine in Ontario - the multi-step protocol is complex, time-consuming to co-ordinate and depends on people living near major hospitals - Yeung says it makes a difference.

Even if we get five lungs, that's five lives saved," he said. Or what if it was 10 additional lungs a year? The more we push and open up opportunities for organ donation, the more lives we can save."

Along with his lungs, Neill donated his skin, bones and eyes. Friends say he was incredibly proud to be a donor. So far, one other person has donated their lungs after a medically assisted death at home; Cypel says the pandemic has made it that much more difficult a procedure.

Neill was also proud his name would be attached to an annual award for Peel Regional Police's 12 Division in Mississauga, the place he had worked for about 10 years. The first recipient of the Mike Neill Officer of the Year Award was Const. Hank Crawly, the man who organized Neill's honour guard.

Beyond opening the door to further donations, the case has had an effect on the doctors and medical leaders involved, some of whom were moved to tears talking about Neill.

We do lots of things in medicine that preserve life," said Preyra, who stood in silence by Neill's body in the Burlington operating room. We do it all the time, every day. Very rarely do we get a chance to celebrate life."

Megan Ogilvie is a Toronto-based health reporter for the Star. Follow her on Twitter: @megan_ogilvie