J: Hey man, I’m sorry for your loss. Do you have a few minutes brother?
X: Yeah.
J: Let’s go in there again. [Points to the right] You asked me why your Dad would only talk about it in your presence. I think he knew you would be able to handle it.
X: [Nod]
J: The family meeting the other afternoon was tough. Your Dad told everyone how he felt and what he wanted but the family weren’t able to listen, especially Aunty.
X: [Nod]
J: Even with all the voices raised, I heard what you said, how you advocated strongly on your Dad’s behalf. He heard it as well. You had his back, that’s why he said it in front of you first. You were really there for your him when he needed support the most, that’s something to be proud of. That impressed me, you’re a good man.
X: Thanks Doc.
J: Dad didn’t get exactly what he wanted but the gods heard his cry for help and responded.
When I first met him he was still trying to be as independent as possible. He could’ve rung the bell and asked for water but instead, he walked to the family kitchen area to get the water himself. He refused to use the walker deigning to use only a simple cane. It took him 20 minutes to walk outside for cigarettes but the nicotine and his willpower continued to push him along. This was despite severe pain which was worsened by movement. He was determined to do things his way, the way he had always done things. Why should he change just because he had a terminal illness? He knew he was unwell and time might be short, he wanted to continue fighting as long as he could. He knew he might die but he would try his best not to. He was more worried about his partner. He had been trying to persuade her to see the counsellors but she was reluctant and wanted to concentrate on work. He was worried that she wasn’t aware of how unwell he was. He was still trying to look after her and wanted to prepare her for all possible outcomes, even the ones where he wasn’t around.
When I next reviewed him, two days later, he looked terrible. His pain had worsened, he had developed a bad headache, he was having fevers and couldn’t catch his breath. I was worried about him and I wasn’t sure if he would recover from this major deterioration. There seemed to be too much going on at once. Everything pointed towards worsened progressive disease. I talked about my concerns and that I would treat all of his symptoms aggressively. I told him that I would try my best to reverse things as much as possible but no matter what happened I would aim to make him comfortable. I offered to talk to his partner and I needed her to come in.
When she arrived I talked about what had led to his admission into hospice and updated her on his worsening situation. “Things keep on changing, the illness continues to worsen. I will try to reverse what is going on but I am worried that things might not improve. If things continue to deteriorate there might only be days to weeks left for him to live. We always work on a no surprises policy here.” He reached out his hands as he looked into her eyes and said, “I’m sorry love.” They hugged each other and the tears flowed.
I was asked back later when their closest family members came in. I met each of their siblings and their siblings-in-law. Their core support team throughout his whole illness. I shared the bad news with all six of them together. They asked about the rest of the family, some of whom were overseas. They asked, “Should we get them to come back as soon as possible?” I replied, “I’d rather people come and see you too early rather than too late. Working in hospice I see too late far too often.” They said they would make some calls.
After the death of her younger relative, she did not expect to be in the hospice again. She had been impressed by the care provided for the family. She was surprised to be there one month later. This time she was admitted as a patient for end-of-life care. She accepted this with no fear, she had been unwell for three years with her heart and lung issues. A previous gut issue had recurred and could not be overcome. She knew that she was dying and in some ways, it was an escape from her years of struggle and further suffering.
Returning to the same hospice, with the same family members less one member. Not the same as the last time she had been there. The perspective on the other side of the bed was different. She accepted her situation, she had been expecting that something like this would happen soon. In some ways, she had already prepared herself. Her world had been shrinking for some months because of her physical frailty. She was glad she had deteriorated whilst she was still visiting and staying with her family. If this had happened at her own home, she would have been alone, and far away from her support network. Instead, she had spent weeks with her favourite and most loved family members.
The lunch she was served was the best thing she had eaten all month. The hospital food and service just couldn’t compare. She asked if some of her family could stay with her overnight. This would be no problem at all. She fully intended to enjoy the next few days recounting family stories and looking through photos together. A chance to say goodbye before the inevitable happened. She was going to make the most of it.
Her first experience of the hospice was when she came to visit a younger family member. Someone important enough to travel over 1000km to see, despite her poor health. Her life had become a struggle over the last three years. Her lung failure had caused heart failure. Shortness of breath made even walking difficult. Leg swelling caused leg heaviness which made walking torturous at times. Over the years she had collected health problems but managed to continue with her life. Her relative had only been unwell once, and the illness was taking her life away. A sad time for the entire family, especially the elders. It is against the natural order of life for a child to die before a parent, but when you are elderly already it must be so much worse.
A few days before discharge he told us he wanted to go back to his hometown, many thousands of kilometres away. He wanted to see his relatives and friends one last time. He said that if he didn’t do this he would die with everlasting regret. A final visit to where he had grown up, a chance to taste his favourite foods again, in his favourite eating places. We thought he had a window of opportunity to successfully make the trip back home. We estimated that in the next months, he would become too unwell to travel. We encouraged him to make travel plans as soon as possible and offered to talk to his son. He declined our offer and wanted to discuss it with his son personally.
He said he would have to convince his son. His son wanted him to have further treatment as soon as possible. Our patient wasn’t convinced that the therapy would be effective, but he had tried for the sake of his family. The treatments had been hard to handle, with lots of side effects. If it was up to him, he wouldn’t want any further treatments, but his son still needed his support after a relationship break-up.
Over the next months, our patient didn’t go home but had more cycles of treatment. As his overall condition worsened he still talked about making his big trip home. Eventually, long-distance travel stopped being an option. The window of opportunity had slammed shut and even car trips around the country seemed too risky.
We received the news that our patient had been on a trip to another city when he suddenly deteriorated. He ended up dying in the local hospital, far from home. Making the return trip back of hundreds of kilometres would not have been easy for his family.
He loved to work. He said it made him happy. He said it took his mind away from what he was going through with his illness. The doctor had given him bad news. Time was going to be short, possibly only weeks left to live. He still wanted to work, he had asked his boss to bring in a laptop, and other work equipment. He said he wouldn’t do too much work, and that if he was too tired he would stop.
His wife looked doubtful and talked about trying to spend all her time with him, but he chose to work even when she was there. This was something that she couldn’t bear to watch. It had happened too often. She wanted me to tell him to stop working. I couldn’t tell this dying man not to do something that would make him happy. I tried to negotiate a compromise between them.
“I’m not here to tell you what to do. You’ve been told you might only have weeks left to live. How you use your time is up to you. I can’t make those decisions for you. You need to think about how you want to spend whatever time and energy you have left. I’m here to take away whatever stress I can. I don’t want you two arguing at this stage of your relationship. Why don’t we try to balance things out more? Your wife needs to take a break, maybe go home for a few hours a day. Why don’t you work when she has gone out? When she comes back, then it’s time to stop working. Do you both think that will work? My staff and I will keep an eye on you, we don’t want you overdoing it, and if it looks like you are exhausting yourself we will tell you to work less. Thank you both for agreeing to try this out. I will be checking in with you both, to see how much breaks/work you both have/do.”
I wasn’t sure how well it would go. It is hard not to be yourself after a lifetime of being in the role. People stay true to themselves right to the end. That being said just in the past days he had agreed to be baptised into his wife’s life-long religion. A huge change for a man who had been an atheist over his adulthood. I would try to keep an open mind and see what happened next.
No need to apologise for the colours. My wife has always loved bright colours. When she couldn’t walk around anymore I planted extra plants to brighten up her views. From our bed, she could see all the different flowers that I had planted outside the window. She liked to sit in our living room and from her wheelchair, she could see all of the flowering winter plants I had planted for her. The colours of your scrubs are very welcome here.
How did we first meet? After university, I went to work for a large steel company. All the company workers and their families lived in the company complex. It was like a city, 50,000 people lived there. In this area, there were 45km of railway lines. I lived in one of the buildings for single males, in a serviced apartment. We were well looked after. We didn’t have to cook, all meals were provided in the company dining halls. I liked to play the card game Bridge and I joined the company tournament. During one of the first matches, I beat my opponent by 25-0. If you know Bridge that is the highest score possible. I must have impressed her with my Bridge skills or maybe it was my long hair. Whatever the reason, my future wife started to ask me out.
My wife’s family worked for a subsidiary of the company. She was born in the city, went to the company school, through university and then was employed by the company as well. We had good times working there, but we wanted something different for our children, which is why we moved to New Zealand.
My wife is amazing, she’s so strong and has lived with her cancer for over seven years. She’s had so many treatments and some of them were so hard to go through but she was so determined to stay with us. Things have been tough at times but we have been happy. During these years our eldest child was married and now is a parent of our three beautiful grandchildren. Last night I missed out on a party. The family were singing my wife’s favourite songs. They were using a banana and a hairbrush as microphones. They had a good time and were all laughing so much.
Thank you for your time as well, and it was a pleasure for me to share our story. Good memories.
Yes, my hair is naturally wavy. I decided to grow it long again, while I still can, just like it was when we first met each other.
Thanks again for all your help and care. See you later.
This afternoon I lectured on Resilient Leadership at a university executive MBA course. I spoke for 50 minutes on the leadership journey I had been on over the past nine years since becoming Medical Director. I talked about the ups and downs I have had to work through and the importance of leadership and resilience. I shared several stories as real-life examples of doing the right thing. Not the easy thing, but the right thing can be very hard at times. Declaring that you are patient-centred cannot just be a fashionable but tokenistic slogan, you have to mean it. You have to prove that you support patients’ right to choose, not just in terms of assisted dying, but other treatments and procedures, which may be invasive or have burdensome side effects. Patients and their families may need our advocacy, and support with decision making.
I allowed for 10 minutes of question time at the end and some thoughtful questions were asked. As I was wrapping up the hour-long session one of the audience members waved and caught my attention. I thought he wanted to ask a question. He didn’t have a question but instead wanted to thank our hospice for providing end-of-life care for his late brother. He said that his mother was especially grateful for the care received. A humbling moment and a reminder that the world can be a small place in which a lot of people are connected in various, often unexpected, ways.
So ends Work Day 20. I think I’ll take the day off tomorrow.
I would find it too morally distressing to send one of my dying patients out of my hospice to the other side of the city to have their assisted death. I wonder if other hospice and palliative care team members share similar feelings. I know definitely that some members of other teams have no qualms about discharging their patients home for assisted death. What about patients who don’t have a home of their own, or who are unable to be home for their assisted death? Where can they go? Unfortunately, the answer from other hospice teams has been, “Anywhere but here.” This is a situation known as a forced transfer, something I have encountered many times in the past almost three years since assisted dying became legal in New Zealand, and we started hosting assisted deaths.
Some of these team members also have no qualms about sending a patient, known to be in their last hours of life before an assisted death, into rush hour traffic. Maybe the same team members have made it clear to the patient and family what their personal views are about the choice the patient has made. The dying person on the receiving end may feel judged and even more vulnerable. What happened to the care part of palliative care? Everyone is entitled to their opinions but when you are at work patients deserve to be met with staff members’ best professional selves, not their strongest personal opinions. For some team members even talking about assisted dying makes them feel uncomfortable, and they share this discomfort with the patients they are supposed to be caring for. Do the staff feel uncomfortable? What about the person who is dying? Can we please treat people with compassion and humanity? How would you feel if you were on the other side of the bed?
With advances in medical technology and treatments, there may be a lot of management options available. Whether any treatment is the right thing to do for the individual patient in front of you needs to be carefully considered. It may be easier to do something, rather than explaining why not doing something is the better option. It is best if a person can take part in the decision making but they don’t always have the opportunity as they may be too unwell.
He’d had many procedures and treatments over the past months. Some had been beneficial, others not so much, all of them painful. He was becoming better at saying, “No.” If it would improve his quality of life he might consider it, but if not he couldn’t see the point. He was already in a lot of pain. He couldn’t keep down his food let alone any medications. They didn’t work anyway. Maybe he had been too subtle with the doctors. They all seemed willing to help and had consulted other colleagues in the hospital to access further investigations. He wasn’t sure if he wanted them. There had been so many this year, and each of the results had indicated that everything was getting worse. He didn’t need it to be confirmed in a written report, he felt it in his bones, the deep fatigue that gnawed at him. Reducing him more each day.
Maybe tomorrow he would tell them how he truly felt. If he could get a word in…
palliverse.com 