THURSDAY: Palliative Care Above the Clouds

BY CONNIE SUITE

Copyright is held by the author.

MY NURSING career is resplendent with special moments, including a few years as nurse-manager for the Baffin Regional Health Board. During that time I was privileged to travel to and from, what is now, the Territory of Nunavut. Those were challenging times in which I met many charming and outstanding personalities that etched a permanent memory in my heart and mind. The Inuit are very talented and warm-hearted peoples nestled in Canada’s Arctic tundra. They have developed complex and ingenious survival skills in dealing with a harsh and unforgiving climate. Despite the distance and unique lifestyles these people are also afflicted with the ravages of disease and disabilities affecting all cultures around the world. When they are in need of specialized care they are referred to city hospitals including in Montreal. They must then travel long distances (by air) at the expense of the Federal Government. This hardly compensates for the fear and sometimes terror of going so far from home.

They also share a firm belief that the quality of life is more important than the quantity. When confronted with the decision of accepting on-going chemotherapy or radiation treatments in Montreal the adults most often choose to ignore the treatment regime and return home despite the disease or the prognosis.

When residents of the Arctic were referred to Montreal area hospitals and medical centres for diagnosis and on going care, it was my duty to see that their needs were understood and their wishes respected by the relevant caregivers. The challenges of managing historically nomadic people in a bilingual city cannot be imagined or surpassed. At home, they demonstrate the ultimate patience when out hunting, waiting for the weather to change or an aircraft to arrive — but absolutely no patience sitting in a hospital waiting room in the city.

Lyta was among the most unforgettable children referred to Montreal from the Baffin Region for diagnosis and on-going care. He was small for his age and appeared undernourished. He was soon diagnosed with cancer and a regime of chemotherapy and radiation was established and accepted by his mother and family physician in Iqaluit.

My most compassionate encounter with Lyta came when he was about five years old. He was accompanied by his mother and she was advised that there was nothing more that could be done for Lyta and they should return to their home in Iqaluit for the last time.

Lyta had a mature understanding of his condition having suffered with cancer for almost all of his young life He learned English from the nurses at the Montreal Children’s Hospital since he spent most of his life there. The plan of care was that he return home, and to the hospital in Iqaluit as often as possible for on-going palliative care. While in Montreal, when he was well enough to go out in the community, the nurses would take him on a city bus for ice cream. Lyta loved ice cream and the city bus. In between his chemotherapy treatments he would also be escorted on occasion to the Mall (across the street) to see the decorations and the sights and sounds of city life.

Soon after Lyta’s final trip home to Iqaluit he became gravely ill. It was an Easter weekend and he was obviously near death. The nurses in Iqaluit panicked and medivac-ed him to Montreal. The doctors and nurses in Montreal also panicked as they had nothing more to offer this child and had hoped that he would be left to die at home with his mother, sister and his beloved cat. Evidently now he would die alone and in the city and they called me to discuss their dilemma. I offered to accompany Lyta home again on the morning flight. They cautioned me that he will likely not survive the journey. Death was imminent. The options were few and I offered to escort Lyta home on the next available flight.

I requested a ticket for the two of us. It would require five adult one-way fares for Lyta as he had to be transported in his special bed that his family had made for him and a same day return airfare for me. The homemade bed was made to measure. The frame was made of rough lumber surrounding a sheet of plywood. There were no nails or screws in this bed. All the pieces were put in place laced with rope or sinew as if they were building a kamitik to travel over the ice. This was a very special version of the real kamitik that would withstand any bumps or jolts. The mattress was handmade from flannelette and stuffed with goose down with two matching pillows and a duvet to cover him. His fragile body was ideally equipped for the outdoors.

For my journey, I packed fruit, a sandwich, juice, a children’s story and my knitting. Leaving my children asleep and comfortable, I took a taxi to the hospital. During the
quiet ride I silently prayed that my decision to take Lyta home would be a successful adventure. The flight time from Montreal to Iqaluit is approximately three and a half hours and therefore it would take a significant part of the day to reach my destination.

His mother did not accompany Lyta to Montreal this time as she was no longer emotionally prepared for the inevitable. Over the years she developed faith and trust in the nursing staff in Montreal. She had other children, other responsibilities and was suffering greatly from the fatigue of travel. It was a journey of faith and hope that I accepted on behalf of her and her son.

It was a very tearful send-off at the Children’s Hospital as I boarded the ambulance with my dying child and headed for the airport. It was early Saturday morning and the city was dark and somber. Although I felt numb, I was certain that I was doing the right thing. Easter Sunday was tomorrow and I would be back to spend the day with my own children.

On arrival on the tarmac at the Dorval Airport the crew gently pre-boarded Lyta and me from the ambulance onto the jet before they taxied to the gate for the rest of the passengers. The beautiful sunrise, gently caressing the scene assured me that it would be a successful and worthwhile journey.

While the other passengers were boarding Lyta and I were comfortably settled in a small screened off portion of the cabin. I advised the captain and the crew that this child would not likely survive the trip and they were obviously heartbroken and paid close attention to my every word and action. Lyta was conscious and coherent throughout the trip but obviously deteriorating. He sipped water from a spoon occasionally and I gave him regular updates as the time elapsed and how far (in time) we had left to arrive in Iqaluit. Although we were in flight, time seemed to stand still. The view from the small window of the aircraft was so appropriate. As we sailed in the clear blue sky above the white billowing clouds I had visions that I was doing little more than escorting Lyta to Heaven. The art of palliative care had been taken to new heights.

His eyes began to bleed, his ears were bleeding but he continued to ask if he was going to make it home. I assured him that getting him home to die with his family and his cat was my plan and very likely God’s plan.

All his family in Iqaluit and I, so desperately, wanted him to be there with them and alive. I reminded the pilot to radio the ground crew in Iqaluit and make sure that the ambulance was waiting and ready to take him home.

The first hour in flight was peaceful. We spoke in short sentences (to assure consciousness) and help to pass the time. I pondered my knitting project from time to time but decided to save it for the return. Lyta would have my entire attention until he was removed from the aircraft.

On arrival in Iqaluit, Lyta was escorted from the aircraft ever so gently — then taken into the awaiting ambulance for transportation home. The paramedics welcomed him home as if he was a hero and indeed he was a genuine hero. I said my farewell on the tarmac then slowly walked through the gate into the airport lounge. I found a comfortable seat to wait until it was time to re-board the return flight from Resolute Bay en route to Montreal a few hours later. As usual, I expected that this flight would be all male passengers returning to Montreal from Resolute Bay and the mine in Nanisivik. I would be able to avoid them all by concentrating on my knitting. I have always tried to avoid discussing my professional adventures with strangers.

I felt content to be alone with my thoughts and my knitting.

Lyta and I would never see one another again. The agent called me soon after I sat down to tell me that Lyta made it home and indeed died very soon afterwards. My job was successful but my heart felt heavy. On hearing the news, I longed to reach out and hug my own children but they were hundreds of miles away. I felt so alone now. The airport was nearly empty.

I took out my knitting and began to work on my current project. No one paid much attention to me as I sat alone and grieved the loss of a very courageous child. The knitting was a most remarkable distraction from the environment and allowed me to digest the events of the day.

When it was time to board the southbound aircraft (from Resolute Bay) I was told that I would have to put my knitting in cargo. I refused. They insisted. I refused. I offered to stay at the airport until the next day when my knitting project would be completed and then I would sleep all the way home on tomorrow’s flight. That idea was not well received as they insisted that the airport be closed after the flight departed. The idea was less than serious on my part, as I had left two young teenage children of my own at home alone in Montreal.

In any event I would not leave without my knitting. The airport was most comfortable, and I still had a lunch and there were bathroom facilities nearby…

The RCMP was called and they consulted with the agents prior to questioning me. I insisted that I had come from Montreal with my knitting in the cabin on this same aircraft and saw no reason why it should be taken from me half way through my flight. They eventually agreed.

As I boarded the aircraft with my knitting securely in hand, the on-board crew greeted me with warm hugs and compassionate handshakes. They welcomed me back like I was some VIP, offering me food and drink — obviously unaware of my encounter only moments before with the RCMP (for misbehaviour!) They wanted news of Lyta and I shared the news that he had died at home. There were significant tears on that flight home as many of the crew had children of their own and appreciated the effort we had all made to repatriate Lyta.

My knitting helped me to recover and relax and enjoy the flight home.

It is at times like this that one is deeply grateful for healthy children and the opportunity to assist another child in need. I believe that I have always had a guardian angel to guide me, especially in my professional life and that is why our heaven bound journey together was a success — palliative care above the clouds!

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3 comments

  1. Connie Cook

    My name is also Connie, and like you I’m an RN. For me it’s been 40 years. You’ve written a great poignant story that respects Lyta’s wishes and ensures he’s at home with his family when he dies. Thanks to people like you, for enabling that. I’m sure you have many more stories to tell. Write On!

  2. John Davies

    Connie, I am volunteer with the Canadian Museum of Nature in Ottawa and I read your lovely article. I have also read your “In Remembrance” piece in the Fall/Winter RNANT/NU Newsletter about your friend Cora L. Scott.

    Cora donated her collection of watercolours and pressed flowers to our museum. We are planning a small exhibit of her work as part of our focus on the Artcic. However, other than your article, we have little to no information about Cora, her life, her work, her interest in botany and art. Anything you could share with us would be greatly appreciated.

    Best regards,
    johndavies@rogers.com

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