The devotion of a health care advocate
Personal Stories | December 1, 2023 | Linda McLean
- The terms “dying with dignity” and “medical assistance in dying” are often used interchangeably, but they are not the same thing. The concept of dying with dignity – and of dignity in general – is highly personal; it differs from one person to the next. A dignified death does not exclusively refer to a medically assisted death. Rather, it can include access to quality palliative care, or any other number of dignified options.
- Faither did not access medical assistance in dying but his end-of-life wishes were communicated and he was able to die in a way that aligned with his wishes. We are so grateful that Linda and the rest of Faither’s family respected his choices.
- Linda and Faither’s story highlights the importance of Advance Care Planning, and communicating your values, beliefs, and preferences with loved ones to ensure your wishes are known.
“Faither” was a wonderful man, with dancing cornflower blue eyes, silver hair and a wicked sense of humour. He had never known either of his parents. His father died in the trenches of World War 1, and his mother died giving birth to him. He spent his formative years in Dr. Barnardo’s Children’s Home, where he learnt the importance of education.
He was also taught his place.
As an orphan, he was told he belonged in the lower echelons of society, and he should not expect to be able to rise through the ranks. Talented, well read, and an enormous giver, he had remained a bus driver all his days. He had worked: he had married and provided for his wife and two sons: he was respected by his passengers. He had served to the best of his ability. He believed that he was truly blessed.
Once, I asked him if he would not think of buying a new winter coat, as the one he was wearing had seen better days.
He looked at me quizzically. “Do you not think,” he began slowly, “that I would look rather strange with one coat on my back and another over my arm?”
Having discovered the magic of “enough,” he was the world’s most contented man.
Now, approaching death, he gave consideration to achieving a good ending.
Such a simple thing
“Do you mind if I talk to you, lass?” Faither asked me one night, as we watched the television together. “I want to know if you’ll help me. I need to know if I can count on you.”
I speechlessly nodded my assent. He had oesophageal cancer, and he had been staying with us – his younger son and me, his daughter-in-law – for the last few months, so that we could support both him and his wife. Now, as he embarked on his last few weeks of life, he wanted to explain simply what mattered to him.
Quietly and deliberately, he began:
“I have three requests.”
I waited expectantly.
“Firstly, I want to die here, in your home, with you looking after me.”
I nodded at this. It caused no problem, and I was pleased that my care was of value to him.
“Secondly, I do not want to go into hospital again: I know that they have done their best, but I want no further treatment.”
Again, I understood – everything that could have been tried was tried. He was now tired of it all.
“I shall certainly make your wishes known, and advocate on your behalf.” I responded. “But are you are saying that you do not want any treatment, whatever the cause?”
“That is correct,” he answered, clearly. “I’m satisfied that everything that can be done has been done. I want to be able to choose my end.”
I said that I would attempt to meet his specifications, but that I could not guarantee it.
He took a deep breath before continuing with his last request.
“Thirdly, and more than important than anything, I want you to call Time. Can you do that for me? I know I am asking a lot.”
I swallowed hard. Thoughts raced through my mind. What could I say to this man who meant so much to me?
“When the time comes, you may not be lucid enough to express these wishes? Is that what you mean?” I fudged.
“I trust you, lass,” he responded. “If I am unable to say “I’ve had enough!” will you say it for me?” he appealed.
“That’s a whole bundle of trust. Are you sure?” I asked, now overwhelmed by the burden of responsibility.
“I couldn’t be more positive. I’ve watched you caring for others. You won’t get it wrong. I will be much more confident that I’ll not be required to suffer any humiliation or distress if you agree.”
“So you are asking me to call Time?”
He insisted that this was his wish.
I was honoured, yet terrified that on this I would fail.
I did not see how it would be possible. I expressed these reservations to him.
“Can we call it something, then?” he asked.
“What did you have in mind?”
“I would like to call it ‘Dying with Dignity.'”
Dying with Dignity
I set out to do my best, although I could not see how naming it would solve anything.
However, what I did not know was, that once he had my agreement in principle, he set about informing all his friends and relatives.
The phone calls went up and down the country, and the objective of Dying with Dignity was swiftly accepted and embraced by family and friends. Everyone was informed that I ‘was doing Dying with Dignity’ for him. It was happening in Edinburgh. If they wanted to come and say goodbye, they would be welcome.
All family and friends welcomed the fact that death could be discussed openly. With this openness and an aim in view, relatives from far and near came to say a relaxed goodbye. I offered them as much time as they wanted or needed: it did not need to be rushed. There were no hushed voices or whispered conversations: it was pure enjoyment.
Friends and relatives arrived in ones or twos, for either a few hours or a couple of days, over a period of 3-4 weeks.
My home rapidly turned into a sardine tin.
It was indeed fortunate that I worked in the hospital on night duty and that we had two spare bedrooms and a bed settee. It was challenging, coping with the occupants of this ever-changing house. But it was company for my mother-in-law and took the intensity out of her concern. Faither was happier than I had ever seen him, his positive attitude affecting the visitors, and it was wonderful when the house rang with his laughter at the shared memories his visitors revitalised. Emotionally and physically, he was almost transformed: he was distracted from his pain and discomfort, and his wife was sufficiently occupied as to suffer far less anxiety.
One morning, as my shift was finishing at the hospital, my husband phoned me. Faither had had a dreadful night. Should he stay off work?
“No, just go…..I’ll stay up with him,” I responded.
Hearing the silence at the other end, I added:
“Don’t worry, I’ll give you plenty notice!”
I was alone as I sat with Faither, when I got home. He occupied our waterbed, which he found very comforting, warm, and less hard than conventional beds.
His breathing had become laboured, and he made no effort to speak. He was only able to take sips of melted ice from a teaspoon. Perhaps half an hour passed by, while I assessed, watched and waited.
Refusal to accept treatment was key
It came upon me with utter clarity: I realized that we were approaching The End. When I was certain “Time” should be called, I invited my GP, a tremendously caring character, to pay a house call. He arrived in minutes.
“Och, that’s some case of pneumonia you’ve got there, lass” he said, “We’d better get him to hospital.” He drew out his writing implements.
“No,” I said, firmly. “He doesn’t want or need any more drips or antibiotics. I am aware that would make him temporarily better, but then he’ll start going downhill again. The man is done. What he needs now is rest.”
Our friendly, family doctor looked at me, startled.
“You mean you don’t want me to treat him?” he asked
“You’ve got it in one,” I replied.
“Are you sure about this?” he asked.
This question jarred terribly, and I had to leave the room to regain my composure. His wife came after me, begging me to convey my remit. As I struggled with my feelings, the doctor joined us in the kitchen. I explained how he had been completely explicit about wishing no more treatment: about how he had phoned his friends to tell them that I was doing Dying with Dignity. I realized that he had provided witnesses for me to call upon.
“Well, you appear to be united.” he said, after I had explained, and he had observed my mother-in-law nodding her head enthusiastically. “I’ll have to get the chemist to order some Morphine for me.”
I knew that the stall on the Morphine was to give everyone time to consider – probably including himself. He read my look, and was quick to reassure.
“Don’t worry; I’ll be back at 11 a.m.”
“I don’t mind giving it,” I offered.
“NO. I’ll give it. It is my responsibility,” he answered. So saying, he departed.
I phoned and told my husband to be home by 11 a.m. He arrived, and we gathered in the bedroom. At the arranged time, the doctor returned, and Dignity was duly delivered.
Relief swept over me: I had accomplished my task. I would have hated to let this man down.
Then, there was a most peculiar short term effect, which I had never seen before.
Faither seemed to recognize that a bridge had been crossed. He appeared, briefly, much more alert and aware. Simultaneously, contentment settled on him. He said his first words in hours.
“I think I’ll have a cigarette now” he announced, importantly.
“Och, you know you shouldn’t.” said my mother-in law “It’s bad for you!”
I smiled gently at her, and lit it for him. After two puffs, and a few ironic remarks, he handed it back to me.
“That’s enough, lass,” he said.
I took it to stub it out.
“NO! Nip it” he instructed – meaning he may come back for it later.
I nipped it.
Satisfied that he had been obeyed to the last, he lay back against the pillows.
“I think I’ll have a wee sleep now, lass,” he said.
“You’ve earned it!” I responded.
I made him comfortable, and he gave me a kiss.
There were no more words.
A few minutes later, he was gone.
All his wishes, stated simply, fulfilled.
We asked Linda for a photo of her father-in-law, this was her response:
It was a while ago now, and I have moved house several times. I don’t remember having a particularly good photograph. I just remember a man, who was unfailingly kind, seldom got cross, and had the knack of using humour when irritated.
He was humble; grateful, in a way we don’t see today….for the small things.
For having a home.
For having a wife, and sons who did very well. One went to Canada.
For being given a chance to be heard.
A real human being!