The story of my brother's death

I've always done my best thinking through writing, and the death of my younger brother Chris has given me a lot to think about. The thing is, his life had meaning, and so did his death. I write this to share just a few reflections on that meaning.

For those who don't know the background, Chris was diagnosed three years ago with Amyotrophic Lateral Sclerosis, also known as ALS. This disease involves the death of the motor neurons of the nervous system, leading to gradual paralysis. It is 100% fatal. We did not know how many years Chris would have when the diagnosis came in. Turns out, it was almost three.

Chris decided early on that he wanted some good to come from his illness, so he signed up for every medical study he was eligible for. He also decided that while he might die from ALS, it was not going to define his life. Even as his legs began to give out, he made a trip to Germany to see our family there. As his fingers and voice gave out, he communicated with us via his tablet, and a tracking device that let him type via his eyes. Even as his breath started to give out, he could still nod, and smile, and speak volumes just with his eyebrows.

I remember speaking with my sister Miriam just a few months ago, and telling her how amazed I was of our brother who just kept on going, courageously. She summed it up in one sentence: "Chris has a lot to live for." Keep in mind that, at this point, our brother was stuck in a wheelchair, being fed through a tube. And yet, he had a lot to live for. His greatest joy was being with people, especially his family and friends. They were what he lived for.

Still, Chris knew death was a certainty. We all know it, of course, but it is quite another thing to be able to name the cause of our death and to have a time frame for the outcome. Early on, Chris made sure everyone knew that he had no intention of asking for euthanasia, an option which is allowed in society but which our Catholic faith rejects. People generally choose euthanasia as a way to avoid the suffering associated with serious illness, and ALS was one of the diseases most commonly invoked when Canada was considering allowing this possibility. In the case of my brother this suffering was more theoretical at first, but as time went on it became more and more real. I'm proud of my brother's courage in sticking to his guns, but I can also now see what that courage costs. There is no room for triumphalism here, just great compassion for those who make a choice consistent with Catholic ethics – and for those who, in the face of suffering they may find meaningless, choose otherwise.

The progression of the illness was slowly affecting Chris' breathing. The weakness of his diaphragm meant that he eventually needed a BiPAP machine to help him sleep, and later pretty much all the time. His inability to cough properly also meant that crap would eventually start to accumulate in his lungs. Poor Chris would have coughing fits that would last for hours and hours. These could be calmed with morphine, but the underlying problem would not go away.

Eventually Chris had to go on a morphine pump, which administered a fairly regular dose. The morphine allowed him to rest, but of course also made him drowsy. I also knew from my time as a palliative care chaplain years ago that morphine also has side effects that can shorten life. Some might wonder if that was in itself a kind of euthanasia, but it isn't. In Catholic ethics we call this the principle of double effect, which basically means that you can do an action that is in itself morally good (or at least morally neutral) that might have a negative side effect as long as your intention is the good part of the action, not the negative part, and that the good outweighs the negative. In the case of Chris, the action was giving him medicine (morphine). The benefit was the relief of suffering, and the negative was the shortening of life – but probably only by days or even hours. So the good outweighed the negative, and of course we definitely were not trying to shorten life, just to palliate the suffering.

Chris' decline over the next few days was marked. His breathing was shallower, and his heart rate began to increase. He was with us less and less, and we could see the struggle on his face as he tried to breathe, even with the BiPAP mask on. On the day he died, his heart was beating so fast he was in danger of cardiac arrest. It was time to say goodbye.

I remember an episode when I was a hospital chaplain, where I entered a room just as a doctor was trying to explain to a woman about the critical condition of her husband. I heard him say, "I'm sorry, there is nothing more we can do." He then looked at me, and turned back to her saying, "Now it's his turn." That was what we were facing now: a shift from the immediacy of medical care to the spiritual care of my brother and his family.

Chris had always wanted to remain at home, and so he had. The family now gathered there: his wife and three daughters along with our mother, our sister and myself. A couple of boyfriends of the girls were also present for moral support. We began by giving everyone a chance to have some one-on-one time with Chris. There was no set formula: we each had permission to say that we wanted to say, or to say nothing at all. We could go individually, or accompanied. There was also no special order: we went when we felt ready.

This very human process took about an hour. In that time the doctors arrived, and the nurse prepared extra sedatives so that Chris would be comfortable. We then gathered for a time of prayer, medical personnel included. I gave Chris the anointing of the sick, and prayed the Apostolic Pardon. For those unfamiliar with these rituals, they are meant to strengthen the soul of the sick person and to remove any lingering effects of sin, so that they can pass from death to eternal life completely unhindered, bypassing purgatory and heading straight to heaven. I found the words of the Apostolic Pardon especially poignant:

Through the holy mysteries of our redemption, may almighty God release you from all punishments in this life and in the life to come. May He open to you the gates of paradise and welcome you to everlasting joy.

By the authority which the Apostolic See has given me, I grant you a full pardon and the remission of all your sins in the name of the Father, and of the Son, and of the Holy Spirit.

With these prayers concluded after about 10 minutes, the doctors removed the mask Chris used to breathe. Death was now inevitable. Again, some people might wonder if this new step was, in fact, an act of euthanasia. In our Catholic understanding, however, it is not. The body is designed to keep itself alive via our own human powers. Technology can extend those powers, but if they are removed then it is simply nature taking its course. Chris, who had been so opposed to euthanasia, had also said that he was okay with us going this route when it was time. He knew the difference.

I had explained to my family that the first set of prayers we had just prayed were for him as a living man, to strengthen him and prepare him for his final journey. We were now in a shared sacred space. I then switched to the prayers known as the commendation of the dying, which, as I explained to my family, were our way of accompanying Chris on this final stage of his journey. The prayers consist of a number of Bible passages in a kind of poetic arrangement, along with a few other prayers. I did most of the talking, reading the words aloud, although I will admit I stumbled when I came to this prayer:

I commend you, my dear brother,
to almighty God,
and entrust you to your Creator.
May you return to him
who formed you from the dust of the earth.
May holy Mary, the angels, and all the saints
come to meet you as you go forth from this life.
May Christ who was crucified for you
bring you freedom and peace.
May Christ who died for you
admit you into his garden of paradise.
May Christ, the true Shepherd,
acknowledge you as one of his flock.
May you see the Redeemer face to face,
and enjoy the vision of God for ever.
R. Amen.

It was the opening words, "I commend you, my dear brother", that threw me. In our Catholic prayers we call each other brother and sister all this time... but in this case, I was saying it for my actual brother. It caught me by surprise, and I needed a bit of a break. My niece Maya took over, reciting one of the psalms. And why not? These prayers are open to anyone to pray.

The commendation of the dying continued for about 15-20 minutes, like a lullaby for him as he fell asleep into eternity. The Bible, in fact, describes Christian death as a "falling asleep", and we could see it with our eyes. Chris continued to breathe for some minutes after the machine was removed, gently and without struggle. Eventually it slowed down to something imperceptible, and not long after the doctor listened for his heartbeat. Death took place around 5:15 p.m. Or should I say, the entrance into eternal life took place at that time.

We started the process of calling people to let them know, and we kept vigil with Chris' body until the funeral home arrived. I made the sign of the cross on his forehead at one point. It was my way of honouring his body, which had been a temple of the Holy Spirit for 48 years.

There will be more to come of course. We will receive people in a time of visitation at the funeral home, and at the church for the funeral mass. We will also gather at the cemetery, where Chris will be buried in the family plot next to our father. We know as well that many people are praying for us, and having masses offered for the repose of Chris' soul. To be honest, though, I find myself marvelling at what we have already received. "Chris had a lot to live for," as my sister once said, and not just that: his death, too, was full of meaning. I see my family now, a few days later, and I see that we are still sad, but also consoled.

I share this story because I know that not everyone is so blessed as to live and die in this way. We had a chance to say goodbye, and to accompany Chris on his final journey. Yes, we are blessed. Thank you, Lord, for this blessing, hard as it is. Look after Chris, please, and all of us. May we greet him again in your kingdom.