He wanted to go home. It wasn’t going to be easy, but that’s what he wanted most of all. To go back to where it had all begun. Back to his ancestral home. He was at risk of dying on the way but it was important that he at least try. It wouldn’t be easy for his family. There was much less formal support available in the small town he was born in. He would have to rely on his family members to look after him.
The practicalities needed to be sorted out. Who could provide equipment and home support? These things can be hard enough to arrange urgently in metropolitan areas let alone in rural New Zealand. The postcode lottery of our health system continues to provide a stark reality check. Healthcare provision levels depend on where you live. If you live in the city, you will likely be well-supported. Outside of our big cities, the local support networks are much more limited. The country mouse and the city mouse have very different quality of living, and also quality of dying.
An exceptional case called for a lot of networking to make the trip home as smooth as possible. What medications would be needed? Where would he get his medications from? What was going to happen overnight? What would happen when he died? Who would fill out the required certificates? We didn’t have all the answers and we needed to make our plans up as we went along.
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.
What do I need to know about you to be able to look after you better?
Nothing much. I just want to be able to go out for a smoke. I asked them about it in the hospital but no one wanted to help. They didn’t want to listen to me. I didn’t even miss the smoking so much. I just wanted to go outside.
It’s important for me to listen to you, isn’t it?
Yeah, it means a lot to me that you guys will listen to me.
I feel more comfortable today. I don’t remember everything about yesterday but I was feeling bad. The pain was bad.
I’d like to work on your pain some more and try to get you comfortable.
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.
We thought she still had weeks left to live. We didn’t know it would only be hours. She died suddenly and the family asked the nurses to perform CPR – cardiopulmonary resuscitation. The nurses calmly and gently refused. They knew it wouldn’t work, she had been too unwell. It would only cause her further harm with no possibility of benefit. Her distraught family’s tears flowed freely.
When we were informed of the sudden death we were surprised but not shocked. We knew she was dying but had not thought it would be so fast. There was nothing more we could do for our patient. She had died. The care package needed to be directed towards the survivors, her family members. We came in to talk to them, to try to explain what we thought had happened. We wanted to try to calm their distress, to try to prevent complicated grief.
We expressed how sorry we were for their loss. We told them we didn’t know exactly what had happened. We thought it was due to overwhelming disease. Nature could not be controlled by us mere humans. It was too much for even the strongest of women to handle, even with the greatest level of loving family support. She had tried her best to hold on to life, but it was not to be. The family accepted our explanations and uncertainty. They did not want her to have any further investigations. There had been too many over the last months.
They said she had loved it in our inpatient unit. She had felt well looked after. She knew we were all trying our best to help her out, and the family too. They laughed when they recounted a story about their loved one’s ultra direct communication style. They hugged us as they thanked us for the care provided. We wished we could’ve done more.
They asked if they could all stay with her overnight. They needed to look after her as per their cultural traditions. They needed to look after each other as a family. It had likely been a long time since the siblings had all stayed the night together with their mother. It was their last chance to all be together as a complete family, as tomorrow she would rest in her final bed. We made a compassionate exception as the family needed to do their duty. They also needed to start their healing process. Bedding and more space were prepared by our staff, as if by magic.
It can never be perfect in palliative care, if it was perfect she wouldn’t have been sick, she wouldn’t have died. Had we done enough? We were trying to do our best to make her comfortable before she died, and we were never going to stop trying. We had listened to her and her family regarding what she wanted and didn’t want. She had died suddenly but peacefully. The family were sad, but they were not destroyed. Life would go on. We had done what we could. We had done good enough.
What went wrong doctor? We went out for coffee just that morning. He was okay when I left him. The next day he was raving mad.
The afternoon he arrived when he talked to us, we thought he was joking when he said he thought people were keeping things from him. Later in the night he became confused. The next morning he was agitated. The urine test showed that he had an infection and we started antibiotics. Since then he’s become more unwell with his heart failure and lung disease. We think he’s dying. He’s been very distressed and we need to calm him down.
I’ve told him off because of some of the things he’s been saying.
He can’t help himself. His body has become too unwell and that has made his mind confused. It’s not him saying those things, it’s the illness. If he knew what had been going on he would hate it. We need to calm things down for him, he exhausted but he can’t relax enough to fall asleep. We want to make him more comfortable.
Is he going to recover from this?
No, I don’t think so. It will get worse. We’re not going to hold back when it comes to controlling his symptoms. He will likely become more sleepy if we can make him more relaxed.
Okay, we need to go out and arrange things for the next stage. Can you keep him alive until we come back?
I’m not sure if we can do that but we will make him comfortable no matter what happens.
She stooped as she kissed him on his forehead. “See you soon darling, you keep an eye on everyone while we are out.”
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.
Sometimes when situations feel stuck a nudge may be required. A change in mindset or plans may be necessary to escape limbo. Patients who may have been in relative stability might be prepared for discharge. Things cannot continue as they are. Normality can only be paused for so long. Children continue to grow up. School holidays start and finish. Jobs have to be worked. Life has to go on.
We had expected her to deteriorate within days. No one could have predicted she would be alive for weeks let alone enjoying some form of quality of life. She had outlived all prognostication attempts by many weeks and almost months. How? Fantastic support from family and friends. Good palliative care was directed by her wishes. We had promised to listen, to allow her to be the driver. We had kept the promise. To continue her steroid medication while she still enjoyed quality of life, as defined by her. We would wean the medication off if it wasn’t working any more if intolerable suffering occurred, if she was dying.
She made the most of each day. Eating food, drinking her husband’s coffee, and having visits from friends. Visits home for family meals and her favourite drinks including world-famous beers and gins. The four-legged family members had missed their mother so much. She enjoyed time in our garden and often caught some rays in the courtyard. Solid plans were being made for longer, overnight leaves at home. Her husband had been trained to deal with problems that might crop up at home. Everything was being prepared for more time at home.
We had stopped being surprised by her long lack of deterioration. When the final deterioration occurred it came as a shock. A slight cough turned into a likely chest infection. Her swallowing ability had fluctuated markedly over the past weeks. A mis-swallow had allowed food or drink to be breathed into her lungs. This aspiration led to pneumonia. We offered antibiotics and hospital admission. They knew she didn’t want to go back to a hospital, a place of great stress for all of them. No antibiotics, thank you.
When it was clear she was dying they wanted to take her home. They were willing to accept the risk of dying en route as they knew she wanted to die at home. Mission accomplished. She spent her final hours with her family, furry ones included. Mixed in with the many tears of sadness were some scant droplets of relief. She was here until she wasn’t.
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