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Family shares the struggle of late father’s assisted-dying wish

By PETE FISHER, Northumberland Today

GRAFTON - 

As the debate about assisted-dying continues, one family has shared their story of their struggle to give their father his last wish: the opportunity to die with dignity.

Austin (Archie) Thomas died peacefully in March in his 90th year with his family by his side.

His wife Anna Marie had previously died on December 19, 2006, their four children were grown and had families of their own.

With his health deteriorating, it was a decision Archie chose to make.

His daughter said the family agreed to tell their story as their father was one of the first people in Northumberland County to have the procedure done locally since the federal government’s Bill C-14 received royal assent on June 17, 2016. Archie’s children Randy, Brad, Roger and Debra all agreed to share the story of the family’s struggle to give their father his last wish.

Debra Westbrook said “what is manageable or acceptable to one person is intolerable for another. We should have the right to choose, the power to control our own lives and our own happiness.”

Many people are opposed to the idea, but Westbrook said there are rigorous safeguards to fully and carefully protect those who cannot decide for themselves.

Archie had a fall in his home in April 2015. It resulted in a blood clot on the brain and hospitalization.

Previous to that, Archie loved the outdoors and being outdoors – hunting, fishing but most of all gardening. Everything from grapes to roses. He had taught himself to be a stone mason. He was a true outdoorsman.

Westbrook said Archie recovered as best he could from that fall and was released from the hospital in late May 2015, “but the quality of his life was compromised.”

His son Roger Thomas helped with the physical things and Westbrook ran the errands.

“By the time he had his 89th birthday his body was just failing, generally speaking,” Westbrook said. “We did notice that he was getting weaker and weaker and we were concerned.”

The family tried unsuccessfully to get him to move onto one floor of his split level home west of Grafton to reduce the demands on his body and simplify his life.

Archie had at least one other fall and the family was concerned he wasn’t telling them everything that was happening.

They were concerned for his safety living in his house alone. He did have a fall alert necklace, but would periodically take it off.

“He just didn’t want to go and die in a hospital,” Westbrook said. “One day we were at the house three times and the ambulance was there twice. The next morning he fell getting up.”

On Sept. 29, 2016, Archie suffered a bad cut to his head and another clot formed on the other side of his brain from the one in 2015.

Being in his 90th year, having an operation to relieve the pressure to his brain was out of the question.

Archie was admitted to Northumberland Hills Hospital once again. Rehabilitation wasn’t working very well. He had completely lost his sense of balance.

“It was determined he could not go home and live alone and certainly not in his house,” Westbrook said.

His wish was to die surrounded by family in his home.

“He became very despondent. He had not made any arrangements for a long-term care home because he was adamant he was going to die in his home,” Westbrook said.

There seemed to be no way, though, Archie would be leaving the hospital.

“We knew at the beginning of November he was never going home,” Westbrook said.

Archie had a meeting with his doctor and brought up the topic of an assisted death.

“He didn’t want to go on with life stating he would never do anything again that was important to him,” Westbrook said, remembering her father at the meeting “I’ve done it all, I have no regrets.”

Archie mentioned at the meeting he was taking up a hospital bed that someone else could be using along with taking the time of the doctors and nurses, his daughter said.

At the time he was in the rehab unit of the hospital because the palliative care section was full.

“I was in favour of it,” Westbrook said.

Her brother Roger, however, wasn’t. He was the closest of the siblings to their father, having shared many trips, hunting and fishing over the years.

“We didn’t have a family consensus,” Westbrook said. “He was closest to dad of all of us. They had a very deep connection,” she added. “Roger struggled mightily with the fact that dad would no longer be in our lives.”

Adding to the complication was Archie’s physician, who seemed to personally struggle with the assisted death procedure.

Archie was declared that he could not make his own medical decisions.

In November things got worse and Archie got pneumonia.

Westbrook said “it was awful” as her dad was delirious, belligerent and had to be restrained.

“When he recovered, Roger as the Power of Attorney withdrew all his medication in an attempt to shorten his life. We were trying to do what we could with what we had.”

With the medications stopped, their father seemed to get better.

Roger took him home for Christmas for the day, but slowly their father’s health was again deteriorating.

“Every time we saw him he would say, “I don’t want to live anymore, can’t we do something about this?” Westbrook said.

Archie lost the ability to read, his hands weren’t steady enough to use his tablet and he couldn’t concentrate enough to watch television.

Westbrook said there was just nothing for him to wake up for in the morning. “He would look out the window and knew that world was lost to him,” she said. “This is when he started talking about how you have no idea what it’s like to wake up every morning without hope.”

It was on Feb. 4 this year when the family was together and held a meeting.

“My other two brother’s were in favour of an assisted death. I could see Roger was upset, but he agreed,” Westbrook said.

The family adamantly states their father could have made medical decisions for himself once the pneumonia and delirium cleared. But since a doctor had declared he couldn’t, they began looking into turning his pacemaker off.

Again, the family was met with roadblocks.

Westbrook was appointed by the family to initiate things, but because she wasn’t the Power of Attorney and because their father was supposedly mentally incompetent, “it was a huge runaround,” she said.

“We couldn’t get dad’s family doctor to comply with our wishes. He wouldn’t return Roger’s calls. Roger went to his office and still (the doctor) wouldn’t talk to him.”

Through Northumberland Hills Hospital, the doctor finally communicated with the family.

The pacemaker is a “medical treatment” just like a blood transfusion and the patient has a right to not have it at any time.

There was a problem.

“We couldn’t get a cardiologist to turn it off,” Westbrook said.

And even if they did, the outcome was uncertain. The family was informed the patient could go into a type of coma.

Even though the family was willing to sign waivers, the worry was the doctor who did the surgery could be liable for ending their father’s life by removing the pacemaker.

So when all seemed hopeless, a woman who works in the rehabilitation unit informed the family about a possible way.

“She very discretely said there is a thing called the Health Care Consent Act and I think you should read it, especially the section on capacity,” Westbrook said.

No medical professional, nurse, nurse practitioner, or doctor is allowed to bring the subject of assisted death to your attention.

This section of the Act dealt with a person regaining their mental competence, which would again open up the assisted death option.

Once the family was told that, the brother and sister contacted MAID (Medical Assistance In Dying) in Peterborough, but they said they couldn’t help without a doctor’s referral.

“So we thought we were back to square one,” Westbrook said.

For days Roger tried to get their father’s doctor to give the referral.

“So finally (the doctor) with much disgust gave the referral and said he divested himself of the situation,” Westbrook said.

The family soon found out Dr. Essak was now officially in charge of their father’s case and things moved quickly.

“He examined dad and said he was mentally competent. Dad made a verbal request for the assisted death and then made it in writing,” Westbrook said.

There is a standard set of questions that are asked to anyone requesting an assisted death and when Dr. Essak was finished, he said their father qualified for the assisted death.

A different doctor had to corroborate Dr. Essak’s assessment and that meeting was set up within the next few days.

The questions revolved around: have you considered alternatives to an assisted death, what about palliative care, what do you look forward to when you wake up in the morning, what’s important to you in life?

“When the second doctor recommended him for the procedure, “my dad just broke down and cried,” Westbrook said. “Tears just poured down his face. He was so relieved. It was such a build up and he was so happy it was going to be over for everyone. He knew how long and hard we had advocated for this for him.

“Both Roger and I cried, too,” she continued. “Happy for him that he finally had what he wanted and sad for us he wouldn’t be here anymore.”

People have mixed feelings on both sides about assisted death.

“The doctor said I didn’t go to medical school to do this,” Westbrook said. “She said, but you went to medical school to end people’s suffering. That’s exactly what you have done at this moment. What greater gift could have you have given to another human being?”

There yet was another hurdle for the family that was dealing with so many emotions.

The liaison for the Northumberland Hills Hospital said under no circumstances would the procedure be done at the hospital.

It had to be done off property, and the person from the hospital who was dealing with the family actually recommended the morgue in Peterborough.

Needless to say, the family was shocked at the response from the hospital who seemed to have no understanding of the procedure and what it entails.

The procedure was scheduled be done at Roger’s house at 6 p.m. on March 29.

Six months to the day he was admitted to hospital. The doctor who did the second assessment would perform the procedure.

The family started planning for something they never envisioned.

“Who plans a death?” Westbrook said. “It wasn’t weird like we thought it would be. We knew we couldn’t have it done at the hospital and it wasn’t what dad wanted.”

Archie’s wishes were that he would like to see his home and his property one more time. He was growing apples in the small orchard behind his house and wanted to see them one last time.

Then the family would take him out to his Roger’s house to have the procedure done.

“Roger and I started looking after the logistics and the doctor started looking after getting a registered nurse to come the day of the procedure,” Westbrook said.

Other members of the family were notified the procedure was given the go-ahead and the date and time. The family used this time to visit more and to say those important things some families never get the chance to say.

“Dad picked out the clothes he wanted to wear,” Westbrook said. “For him, it was just like planning a vacation.”

Two IV’s were inserted at the hospital before he left. There was a mixture of reaction from the nurses at the hospital when they heard.

“I had one nurse stop me in the hallway and tell me how appalling it was,” Westbrook said. “I couldn’t believe how people thought how awful we were,” she added, noting one nurse said “you’re killing your dad.

“Northumberland Hills is really dragging its feet about getting a policy in place for assisted death. You can have it done in Peterborough, you can have it done in hospitals all over Ontario, but not here. It became law in June 2016 and over a year later they do not have a policy, they had not provided training to their staff at the time we were pursuing this - nothing.”

An e-mail sent to Northumberland Hills Hospital officials asking if they do have a policy was not returned.

To Westbrook’s surprise, her father was ready and waiting by the nurse’s station with the biggest smile on his face when she went to the hospital at 9 a.m. on March 29.

“There was one nurse who was in favour, one who was fence sitting and one who completely ignored us,” she said.

The nurse who wasn’t in favour of it said, “you can change your mind up until the last minute” to her father before they left. With a smile on his face, Archie very firmly said “no thanks.”

The 89-year-old had tried two starvation diets looking for a way to end his suffering.

Neither worked because he would get delirious, he’d forget and they would bring in his food and feed him.

“The staff at the hospital had never had to deal with this,” Westbrook said. “We thought palliative care people would be supportive of it. He was on end-of-life care.”

For Archie’s last meal, it was no surprise he wanted squirrel and pickerel.

“Roger had squirrel in the freezer and he managed to get pickerel. Dad loved my mom’s Boston baked beans and I made those,” Westbrook said. “I made butter tarts as they were his favourite dessert. All the family made sure they were available. His dog, Tina, was there with him.”

At the time, the family didn’t tell close friends because they weren’t sure of the reaction they would receive.

“On March 29, Roger drove him out to his house, drove around the property, then went up to the orchard and looked at all of those things,” Westbrook said.

After going on to Roger’s place, Archie had a nap in an easy chair in the living room overlooking the surrounding properties. There was a number of birds feeding just outside the picture window.

It was a beautiful Spring day, Westbrook said.

“We all supported each other,” she said.

Archie’s children and their spouses were there among other family members.

When he woke up, people took turns going in and talking to him.

Around 5 p.m. he asked why the medical people hadn’t arrived yet and shortly after the registered nurse arrived followed by the doctor.

“The doctor was right on time and dad said, “am I happy to see you,” Westbrook said.

“It was really remarkable.”

The family had already called the funeral home in preparation.

One final time, the doctor went over what would happen. They would give him a sedative to put him to sleep, then they put him in a medical coma, then the final medication would stop his heart.

“They asked dad for his final consent, he said yes and he gave a thumbs up. So did all of us, so he knew we were all on board with him,” Westbrook said. “They gave him the first injection and my dad says, “am I supposed to feel anything?” The doctor said, no. A few seconds later he asked, “are you sure this is working?”

Those were his last words.

The doctor said “just relax Archie,” Westbrook recalled. “He did, and we could see his eyelids getting heavy and he closed his eyes. The doctor waited a little longer and then administered the other syringes including the medication to stop his heart.

“He slipped gently into eternal peace in the loving arms of his family. They pronounced him and there were more tears. He never wavered from his first verbal request to his family to his final consent to the doctor.”

Archie finally got his last wish. The entire process took less than 15 minutes with the administering of the medications taking approximately five minutes.

Westbrook said the family has heard disturbing stories about what takes place, “but this was peaceful, painless and civilized.

“There was nothing negative about that day in any way,” she said. “We were all thinking, my dad’s going to be dead at the end of the day and we were all carrying on like it’s an ordinary day.

“You don’t know for sure how you’re going to react. But it was humane and compassionate. It’s just like he had died in his sleep. He closed his eyes for the last time. His body did not move, he made no sound.

“My dad had zero quality of life. He was dying by millimetres every day.”

The reason for the Thomas family coming forward and sharing their story with the public is to provide some balance to the negative things they believe are being said about assisted death and the questions that people would like to ask, but feel are inappropriate.

“Death is not the enemy. Suffering is the enemy,” Westbrook said. “You can’t leave the humanity out of medicine. All the things they were treating him with weren’t doing anything.

“He died at home with all his family present. There was nothing traumatic about my dad’s death. Bill C-14 does not sacrifice the life of the old, ill and disabled or deem their life not worth living.

“It gives people the right to choose.”

pfisher@postmedia.com