The physical and emotional roller-coaster ride continued for our patient and their family. Close to death one week, then an incomplete recovery. No longer imminently dying, but far from sustainably living. A plateau in the journey, like being stuck in transit with no clear plan of when the next part of the trip would continue. He still wanted to start his journey up to heaven, but his flight had not been called yet. He improved a bit more to the point that he was slightly better than when he first arrived. This was disappointing for him as he felt he was heading in the direction opposite to where he wanted to go. He maintained his faith and stayed calm. His Lego showcase continued to fill the room. Extra shelf space had to be organized. He was worried that he was taking up a bed that could be utilised by someone with greater needs than him.
Nothing changes when nothing changes. Sometimes a small nudge is required for situations to change. We decided to start discharge planning again as he was holding his own. We didn’t want to make him anxious as we had with the previous discharge plan so we talked to his family about it and not to him. He continued to do well, more Lego assembling occurred over the next weeks while his family found him a suitable place. He remained active around our ward, walking around slowly between Lego sessions. A new skin infection appeared but it wasn’t too painful for him. We had promised him again that we would not start any antibiotics and we stuck to our word.
Our patient was dying, earlier in the day his wife had asked how long he had left to live. I had told her I wasn’t sure, but it was likely he only had hours to short days left to live. It usually is hard to tell but in his case it was even harder as our team were surprised that he was still alive. We had expected him to die two days ago. He was a strong young man who didn’t want to die. He continued to hold on. I talked about no matter how much time was left that we would try our best to keep him calm, to keep him comfortable. We’re going to get you through this.
His daughter was just outside of the room. She was cutting out pictures from magazines and she was assembling a collage. There was a picture of a beach. Someone had a straw hat on and holding a fishing rod. There was some pictures of indoor furniture. I think there might’ve been a fluffy toy bunny in another picture. She had a glue stick in her other hand and she was rearranging the images on the blank sheet of paper in front of her. She had seen her father become more unwell over the past month, increasingly so in the past week.
It’s not standard practice for us to provide meals to family members but we do make exceptions at times. We arranged for meals for both of his children and their mother, catered for by our hospice kitchen. The children were given the choice of ordering either the fish and chips, or the chicken nuggets and chips. This was extra exciting for them, they would have their own tray of food, including dessert. What a treat. They could eat together with their mother who had her own tray. Father had been too unwell to swallow anything for the past week, and had slept most of the last three days.
A happy half hour that they shared together doing something normal. There had been too little of that in recent weeks. Long days and nights in hospital had been stressful. The children didn’t get much time with their parents together. The time was precious for them, and hopefully it allowed for a nicer memory to be formed.
Our patient died peacefully later on that same night. The room became crowded as many other family members came in to pay their respects.
The next day his wife asked us how much the bill was. When the interpreter told her that there was no charge, she burst into tears.
We had to remind ourselves every day when driving down the hospice driveway to be careful when entering the car park. The pickup truck was always parked in the first parking space. A long vehicle anyway but the driver would always have it parked so the back part of the truck would be sticking out into the main thoroughfare. Everyone else who wanted to park in the hospice car park would have to make sure that they didn’t hit the back of the pickup truck. It had gotten to the point that local authorities were considering installing a specific traffic light to warn other drivers of the potential danger. No matter what time of the day or night it was the pickup truck was always there, for months on end. It was an almost constant presence that we could tell time by the shadows cast by the sun shining on it – a Japanese assembly-line manufactured sundial weighing over a tonne. Local mosses tried to grow on it with limited success. If you looked up the hospice campus on Google Maps the truck would appear on the provided image. It was always there, for months.
The truck belonged to the father of one of our younger patients. A shy young man who was very private and did not want anyone but his father to help him with showering. A devoted father who doted on his ailing son. He had attended every specialist appointment with his son. He wanted to be involved in every treatment discussion and decision. He tried to do his best to keep his son alive, and it worked to some extent. He was ever vigilant on behalf of his boy, as at the start of the son’s illness it had taken a while for him to be diagnosed. The son’s plight was reflective of the health disparities that affect some members of our population. The reality of institutional racism throughout our health system meant that the son’s story about abdominal pain and weight loss was discounted for six months. By the time his terminal cancer diagnosis was finally made, the cancer had spread to many parts of his body, causing a lot of pain.
The father and son had both been scared of hospice when they were first referred. Their oncologist had to persuade them to give us a go. Our staff assessed his pain control which was poor and asked him to consider admission into our inpatient unit for pain control. It took many conversations and for the pain to become unbearable before they were admitted. Everything needed to be discussed with the father, he couldn’t trust the healthcare system because of the way they had treated his son in the past. Given New Zealand’s track record, I couldn’t blame him for his lack of trust. On the first admission, we were able to bring the pain under control quickly, and days later he went home.
Over the next months, our patient would be re-admitted several times. His father would be there with him most days, and hence the pickup truck became part of our car park again. Our patient’s health slowly deteriorated over many weeks. The father and son who had been so wary in regards to coming into hospice were now too scared to leave. They felt safer in our place than in their place. In the last weeks of his stay, there were several times when we thought our patient was about to die, that he was parked too close to the edge of the clifftop and was falling over. Somehow he would reverse his way back to the edge again. Less than a week later it looked like this was it, half of the chassis was over the cliff edge. Some incredible inner strength would pull him back again. The doctors stopped trying to prognosticate, we kept getting it wrong. Anyone else would have died weeks or months ago.
It came as a shock to all of us when we didn’t have to take a wider berth when navigating our car park. The pickup truck which had been there for almost half a year was gone. The father did not need to stay in the hospice any more. His son had been taken away in another long vehicle by another exit for his final journey. After many months together with them, most of us didn’t get the chance to say goodbye, to the son or the father. That’s the way it goes sometimes, we don’t always get a chance to partake in the closure that we need. Goodbye. We wish you safe travels, both of you.
The family were trying to protect our patient. They knew that his time would be short, that he would die soon. They didn’t want him to know this as the last time he had been given such bad news he had reacted poorly. They said he had been in tears for two days after the hospital doctors had told him bluntly that he could die at any time. They didn’t want a repeat of what had happened. If he only had a short time left they wanted him to enjoy it as much as possible. This was what his life partner wanted, the person who knew him better than anyone else. The love of his life.
Did he know what was going on? Probably. He had said he thought things were bad. We had not denied this. He was the one feeling every single discomfort. He was the one who was exhausted from lying in bed doing nothing. He was the one whose body continued deteriorating on an almost daily basis. He was the one who had asked to be admitted. He was worried about how his family were coping with looking after him at home. He had been told weeks prior to this admission that he possibly only had days left to live. When we asked him if there was anything he still needed to do, any unfinished business, the reply was,” No. I’ve done everything I can. I’ve done well. I have no regrets. I have a good family. We raised our children well.”
Our duty of care is to our patients. “First do no harm“ is the first principle we follow. Would telling him what he probably already knew be of benefit or would it cause harm? It was unclear as we didn’t know him well enough. For some people knowing they might only have a few days left could provide relief. They might be thankful that their suffering would not go on for much longer. For others, the short time left would provoke anxiety and distress. They would be upset by the thought of having to leave their family for the final time. If he were to directly ask us, we could not lie to him. But if he never asked we would not raise the question ourselves. His partner had made the decision. The survivors of his death had to be given the opportunity to do what was right for their family. No matter what would happen, we promised that we would try our best to keep him comfortable in what time remained.
Some lives are difficult, relationships do not always go smoothly. Every person has problems, every couple has problems. Some couples have more problems than others. People are not always at their best and might have limited support available. Many people cope by self-medicating with drugs and alcohol. The use of substances worsened their relationship over the years. Her family had never approved of him, and let him know it.
Everything changed when she became unwell. When she really needed his support and love he showed up. He stopped using substances, and the large poultry was cooled rapidly. He was there for her at the clinic appointments. He was there during the hospital admissions. He was there for her for her hospice admission. They were surprised, given the circumstances, that they were so happy. They had privacy, they could spend time together, just the two of them.
She told us that their time spent in hospice had been the best weeks of their entire marriage.
The blood tests were all deranged and matched what I had found on examination. She was dying. I maintain a no surprises policy. I don’t want my patient or their loved ones to be surprised by sudden deteriorations which could lead to death. They needed to know. I had to tell my patient and her gathered family what I feared was happening.
“I’m worried that everything is getting worse. If this continues I think there might not be much time left, maybe only days. I’m sorry to have to discuss this. I think you are dying. I’m going to try my best to keep you comfortable. We haven’t tried the steroid treatment before. I’m hoping that it will help you feel more comfortable.”
My patient was too weak to talk, her face was covered by a towel. Her family said they understood and thanked me for telling them what was happening.
“I’m sorry this is happening, I wish I could stop it.”
I was surprised when my patient reached her hand out to grasp mine.
She said, “It’s okay. Thank you for helping me.”
I swallowed hard and promised I would keep on trying to make her comfortable.
As soon as I left the room the family made arrangements for her child to come in from school. They had to prepare him for what would happen.
I’m very sorry for your loss. If I had known how little time she had left I would’ve told you. We operate on a ‘No Surprises’ policy. We want people to know what is going on as they might have important stuff they need to do. That’s why we kept on bringing up heading South. We were worried that time was becoming shorter, but we didn’t think it would be this short.
The Oncologist had said that with treatment she might live for two years, maybe five to ten years, and some people have lived for 20 years. It was a shock this morning when you told us she might only have weeks to months left to live. We cried together this afternoon, then we were both so tired and fell asleep. Dinner had come and she was still asleep. I tried to wake her up but her breathing was strange. It sounded like how my mother’s breathing sounded before she died. That’s when I panicked and called the nurses. They came in to see her and stopped the medication pumps. A few minutes later and she was gone.
I’m so sorry. We always try to warn people when the end is near, but sometimes we don’t get any warning. We were still trying to get her comfortable so that she could travel down South as soon as possible. I’m not sure exactly what caused her death. I think it was her cancer getting much worse. The medication side effects might have had something to do with it, but likely only a small part. The only way we can find out for sure is to arrange for an autopsy, that would tell us what happened. We can make a request if that is something you and the family would want.
No, we don’t want anything more to happen to her. We didn’t know the cancer was so strong.
Yes it was too aggressive. It caused too much pain and distress. It was too much for anyone to handle. She kept on fighting it but it was too much. No more suffering, she was exhausted.
Thank you for looking after her. She really loved it here. She trusted you guys.
I wish we could’ve done more for her. We wanted to get her back down South.
Yes, it could actually be much shorter if she deteriorates faster.
Thanks. We have things we need to prepare.
No matter how long she has got left we will do our best to keep her comfortable.
Thank you.
She’s been an important part of you and your children’s lives.
Yes. It’s hard, it’s the first time we’ve been through something like this.
We’re going to get your mother through this, we’re going to get you all through this. If you have any worries or concerns please share them with us. Our job is to take as much stress out of this situation as possible. Please let us know if there is anything we can help you with.
Thank you. We brought you some cakes.
You brought three cakes, that’s very generous of you.
Yes, one for each of the nursing shifts.
That’s nice of you to think of each of the shifts.
The staff have looked after us all well. Thank you.
That’s what we are here for. We’ll see you later, try and get some rest when you can. Thanks again for the cakes.
Yesterday afternoon she told her story well. She recounted her recent bouts of illness which had culminated in her last hospital admission. She was keen to go home as soon as possible. The way she looked it appeared she had a good chance of making it there. The plan was to optimise her symptom control and then discharge home would be considered. She was in good spirits and was glad to have arrived in our inpatient unit.
The first night was disturbed by worsened pain, agitation and confusion. When we reviewed her the following morning, she was very unwell. This once talkative lady was unable to respond to voice. We diagnosed that she was dying. Generations of the family were asked to gather together to say goodbye to our patient as her time appeared to have shortened. Her medications were adjusted to maintain comfort.
I was surprised when her son told me that his mother had woken up and was talking to her family again. This was in time for the visit by her grandchildren. She enjoyed seeing them, hugging them and talking to them during a nice afternoon. By the evening she was exhausted and drifted off into another restless sleep. She never woke up again.
My science couldn’t explain how this dying lady had gathered what remained of her limited energy in order to be there for her visiting grandchildren. The last hurrah or the final rally is something I have witnessed too many times in palliative care settings. It really is a thing. A person can wake up from a coma to provide a final gift to their loved ones. Yet another mystery we often encounter at the end of life.
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