I think therefore I am? – Live Q+A

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After presenting my first lecture the other morning I fielded some live questions from the audience. The last question asked what had happened to hospice. “You started off well, were highly active and looked after patients well. Nowadays it’s as if hospice has lost its way. What’s going on?”

What’s going on? A question I had been asking myself about the hospice sector at least since 2016. Our founding mother Dame Cecily Saunders was a change agent, she was a disruptor. She identified a population with great need, cancer patients for who all treatment avenues had been exhausted. In the 1950s these patients would often die with great suffering. Dr Saunders would not let this happen on her watch and did something about it. This was an act of activism which led to the modern hospice movement spreading across the whole world, as the needs of patients are present globally. Lots of actions were taken by passionate people who wanted to bring relief to the suffering.

In recent years I think the hospice movement has ground to a halt. They have become protectors not just of the status quo but of the stasis quo not wanting anything to change. If they had their way we’d still be in the 1950s, doing what we could with the small number of skills and knowledge that were present in those times. It is now 2023 and a lot has changed. The Covid-19 Pandemic we are coming out of was a stark reminder. The current Global Financial Strain 2023 that we are going through makes for tough times. We can’t just sit still on our throne as if we were King Canute trying to turn back the tide.

What would Dame Cecily think if she was still alive? I think she would be shocked that some organisations which call themselves hospices are not practising patient-centred care. Instead, they are providing staff-centric care or organisation-centric care to the detriment of individual patients and their families. They cling to the seven most dangerous words in the English language as if it was their holy mantra to be repeated if there is even the slightest hint of change. “That’s the way we’ve always done it.” As if intoning the phrase provides them absolution from all sins, including the sin of neglect. Dame Cecily would be disgusted that hospice staff are putting their own needs in front of those of patients and their families.

I often say to my patients that when it comes to what may be their final journey, I am not the driver, they are. I am their GPS, I am there to guide them, there to identify what obstacles may lie ahead. To warn them of dangers and of any possible detours. My job is to try to make their journey as smooth as possible. I am not here to judge the for the choices they make. They might want to pursue treatments that I think would make their tenuous situations worse. They have to do the right thing for themselves and their family. We need to show them we still care because in some instances it’s not clear to the patient or their family. We can do better than that. It’s time for us to grow up and show up. It’s time for us to get over ourselves and become activists again. The 1950s were good in their day but that was over 70 years ago.

Palace of Care – It’s hard enough just breathing

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“The last thing I remember was waking up early to watch the Rugby Sevens, after that I woke up in hospital,” was what he wrote using a green erasable marker pen. In between sentences he would wipe his mouth with tissue paper. A combination of stroke loss of function and rapidly growing mouth cancer led to him not being able to close his mouth fully. Saliva would pool in the lower left corner of the mouth before gravity would send a small waterfall running down his jawline. He was quite conscious of this and had already tucked three extra tissues under his chin to catch the drool.

The next sentence he wrote said, “my sister didn’t know that I did not want to be resuscitated if I became unwell again.”

“Do you mean you wish they hadn’t treated you the last time you were in hospital?”


“Since leaving hospital you’ve stopped most of your medications. If you were to get another pneumonia would you want to be treated?”

Head shake.

“If your heart or lungs were to stop working, would you want us to try to start them again?”

Crosses his hands in front of his face, and shakes his head with vigour.

“You’ve had enough haven’t you.”

Nods his head three times.

“There’s too much going on. Your lungs aren’t working, your heart isn’t working, and you’ve had a bad stroke. Then you got a nasty mouth cancer on top of all that. Isn’t that a bit greedy of you?

Shrugs shoulders while smiling with the right side of his mouth.

“I know you are in a lot of pain from cancer and you’ve had bad nausea. Are you still wanting to have the tube feeds?”

He wrote, “It’s hard enough just breathing.”

“You don’t have to have anything that you don’t want to. Your body is so unwell that it can’t process the food, that’s why you’ve been vomiting and have had loose poos. You are struggling. I’d like to try to calm down your breathing with some medication.”

Thumbs up.

“Your family are coming to see you soon?”

Nod and half-smile.

“I’d like to start some medications for you through a syringe driver.
I’d like to calm down your symptoms over the next couple of days. Please let us know if there is anything you need. We’re going to get you through this.”

“Thank you.”

“Thank you for building our hospice.”

Palace of Care – Goosebumps

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What’s in the bowl on the table?

That’s sand and a shell from his favourite beach.


Yeah, and in the bottle is seawater from the beach. He spent a lot of time on that beach and in that water during his life.

Wow, I’m getting goosebumps just hearing about it. Oh hello, Aunty, how are you?

I’m good. Just let me play him something on my phone.

Oh, what are you playing?

Sounds of waves hitting a beach.

From his favourite beach?

No, but most beaches sound pretty similar, right?

Oh right. That’s a really nice thing to do.

The beach and water are where he is heading. He’s going to see his Uncle and they will go sailing together again.

Just like when he was a kid.

Yeah, that’s when his lifelong love of sailing began. He told us today that he’s ready to go. Do you think he will die today?

He might do, but that’s what I said six days ago. I’m not sure, he’s stronger than most humans. But he may have finally let go. No matter what happens we will keep him comfortable.

Thank you.

I think therefore I am? – Chosen One

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There’s usually one person in the family who is the go-to person when it comes to anything to do with death and dying. They are the one that everyone else relies upon when times get tough. They are the one who is called when a life is at risk. They are the one that everyone else counts on to get them through tough situations. They are there to liaise with the medical teams. They will drop everything to attend to the needs of the unwell person, even if it means their own needs do not get attended to for some time. They are the one who copes on behalf of everyone else. They will translate the bad news into more acceptable language.

They didn’t get a choice in these matters. Everyone else just turns towards them. They end up being a key conduit of information, from the family to the healthcare team. They will also relay information from the healthcare team to the rest of the family. The bad news may be broken to them in the first instance and they will broadcast the message in a way that their family will understand.

It’s difficult being that person. You are so busy taking care of everyone else, that you don’t leave much in the tank for yourself. You keep on doing your assigned roles. Someone has to do it. When everyone else is busy grieving and crying, someone has to call the Funeral Director. Someone has to organise the service, the funeral booklets, what songs to play, and what speeches are to be presented. No time to grieve when there is so much to do. That can wait until everyone else is taken care of.

Sound familiar?

Palace of Care – A Good Death?

Can a death of a person under the age of 30 ever be good?

I’m not so sure. It just doesn’t seem right. It is against the natural order of life. Children are not supposed to die before their parents. Grandchildren are not supposed to die before their grandparents. With the advent of modern medicine, three little kids are not supposed to grow up without one of their parents. Unfortunately despite all the advances we have made in healthcare, some people will still die young.

We might not be able to achieve a good death, but we can make death much less bad. We can’t take away all the sadness of a situation but we can prevent absolute devastation. We operate with a ‘no surprise’ policy, we don’t want anyone to not be aware of what is happening, especially if it is happening to them. We didn’t want their partner who has limited English to not know what was going on. One of our colleagues helped us to interpret the bad news. We could see by the tears running down his face that the message had been successfully passed on. People need to be gently made aware that their time with their loved one has become short, and extra precious.They may have important things they have not completed. It could be legal matters or relationship matters. Saying goodbye to people who have been important in their lives. Spending time with their friends and family, while they still can. Facing a difficult situation together

She spoke her last words to her mother. Her dying wish was for us to help her husband and children find a better long-term housing option. We would certainly try. We can never achieve perfection in palliative care. If it was perfect our services would not be needed at all. The person would not be dying and could go on living, that would be more like perfect.

They prayed for a miracle and did get one, but it was not the one they were expecting. Immigration services quickly processed the visa allowing her mother to spend the last days with her. They had missed each other so much, the tears ran freely down their cheeks
The little children will likely not remember their mother for years to come. Her memory will be vague but they will know that they were loved by her. They will never be able to learn the things that she was so keen to teach them. She never had the chance and other female figures in their life will have to fill in the gaps.

We all felt sadness. We all felt powerlessness. Did we do a good enough job? Yes, and some. We managed to keep things calm and comfortable. The family were left sad, but they were not destroyed. Life will go on.

Though people in the room were sad, they were calm. They looked after each other in a loving manner.

They stayed in the room for the rest of the day until the funeral director arrived to uplift the body. The family accompanied her to the hearse and said their goodbyes. Smartphones made video calls to allow overseas relatives to be present virtually. One family spread over thousands of miles shed tears for one taken far too young.

Her four-year-old played with a slinky.
Her three-year-old cried and wanted her mummy.
Her two-year-old didn’t know what was going on.

Her husband wiped his eyes dry and then shook my hand. We hugged as he said, “Thank you, Doctor.

Palace of Care – The Contrast.

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The portrait was the first thing that caught my eye when I entered the room. A strongly built olive-skinned young man with a confident smile. His eyes had a mischievous glint as if he was just about to share a joke. Dressed in a well-fitted suit oozing simple elegance. A man in his prime who was enjoying life. He looked like someone with a bright future ahead of him. Happiness personified.

I looked around the room but did not find the man in the picture. On the hospital bed was a small unwell-looking man. His teak-coloured skin was an adverse effect of the many treatments he had received over months. His cheekbones were too obvious, stark evidence of massive weight loss. With great effort, he turned slowly towards me when I introduced myself. The result of too many sleepless nights and what may have felt to him prolonged incarceration in the hospital. The hospital gown was draped around his slender body. A quantity of life-saving infusion ran into a line embedded in his chest. He was lying in bed with suffering etched across his prematurely aged face. Defeat personified.

I was keen to help. I wanted to admit him to my hospice. I outlined a brief escape plan for him. I wanted to help him get home. He kept on breaking eye contact. Was it just shyness or had he heard it all before? His eyes were dull and the only glimpse of a slight spark was seen when I talked about trying to reunite him with his dog. I wanted to make it happen as soon as possible. I thought that his time was running out, that he might only have mere weeks left to live. I wanted to act fast before his condition worsened. I asked him directly, “If you only had a few days left to live, where would you want to be?” “At home.” Home-sickness personified.

Our teams began making arrangements for the transfer. Special training was required for the infusions he was having. We were keen to make it happen.

Palace of Care – Fathers and Sons 3

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Generations of his family came together to join the bedside vigil. Grandchildren who were out of town came home to see the beloved ol’ fella. His cheeky smile was still there to greet them all but with each day his energy levels decreased. He needed to sleep more. His appetite dropped off steadily.

They knew time was short. At the start of the admission, over a week ago, they had been told there might only be days left. Dad kept on proving them wrong. He would still rouse to their voices but had become too weak to talk.

The son came in every day and saw his father melting away. Intellectually he was prepared for the loss of a parent. The scenario had played out in his mind ever since the diagnosis was confirmed. The emotional organs always took much longer to catch up with the thoughts.

How much longer could he go on? He had always been strong, but nobody expected him to still be alive. The hospice staff were just as surprised.

“I’m not sure how long he’s got left. If it was anyone else they probably would’ve died last week. I’m not even going to try to guess. He is getting closer, his breathing is changing, and he has become more agitated. It could be hours to days, but that’s what I told you two days ago. He’s going to do things at his own pace, in his own way, just like he always has.”

The son was on the other side of town when the call came through. He raced back in his powerful car as fast as he could, but he was too late. A lifetime of memories washed over him as tears tracked down his cheeks. He had to put his grief on hold as his assigned role in the family took precedence. Someone had to find a funeral director, organize the memorial service and look after everyone else. Again. He took a deep breath in, sighed, and started making phone calls.

Palace of Care – Fathers and Sons 2

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It had been almost two months since the treatments had stopped. It was the right thing to do as the treatments could not be given in a safe manner. It was deemed too dangerous to continue, thus they were finished. The blood test results were all highlighted in the abnormal hue of red. The organs had stopped working long ago, the treatment had been trying to replace the organ function. It had worked until other more important organs started to dysfunction. The family was informed of this change, his son knew exactly what this would mean. Time was going to be short, no one could say exactly how short, but he expected his father would die soon.

Almost two months later and Dad was still doing okay. He had continued to live his life the way he wanted to, as always on his own terms. He had worked almost twenty years longer than most people would have. A physical job that exhausted men decades younger than him, but one he had done until less than two years ago. He’d beaten the odds once again. How long could he go on like this? In the past few days, it seemed like life had caught up with Dad. It was subtle to start with, with more fatigue than usual, and a smaller appetite. At times Dad didn’t know where he was, but he could soon be reorientated. Then he almost fell over a few times. It was more of a slow-motion slide to the ground. Gravity had seemed to slow down around him, and he slid joint by joint to the floor. Although he had lost a lot of weight he was too heavy for his partner to lift off the floor. This had started happening more and more times. A call for help was made, and a team came to see him at home.

I was told that apart from the near falls, the nurse couldn’t find anything else needing attention. They thought he might only have weeks left to live. They recommended that he go into residential care as he would be harder to look after as he became more unwell. I had a different opinion. I had seen this play out too many times before. When people start falling it is a sign that the end is drawing closer. I thought further deteriorations were about to occur, that there would soon be a crisis. I arranged an admission into our inpatient unit.

On arrival, he was still pretty good. Able to walk in and converse with our staff. There was no discomfort, he was relaxed and happy. He and his partner settled in quickly. Over the weekend the family arrived and spent time with him. His son was glad that Dad had been admitted, and that the family’s distress had been relieved. The doctors said they’d see what happened over the next few days.

Two days later and Dad needed help to get out of bed. His arms and legs had lost their strength overnight. A further deterioration on top of those that had occurred already. Dad was starting to slip off the edge of the cliff. If he continued to descend at that rate, he might only have days left to live. The son came in again to have an important conversation with him. To find out what he knew about his condition.

“It’s pretty shit. I don’t have much time left.”

“Is there anything you still need to do, to sort out?”

“No. I’d like to see my siblings and our family.”

“Okay Dad, I’ll make some arrangements.”

A steady stream of visitors came over the course of the next week. Every day his son would check in with him. Every day Dad looked a tad smaller. His happy smile was still there but he became less able to follow conversations. Every day he slipped a bit more cognitively.

A steady stream of visitors came over the course of the next week. Every day his son would check in with him. Every day Dad looked a tad smaller. His happy smile was still there but he became less able to follow conversations. Every day he slipped a bit more cognitively.

Palace of Care – Fathers and Sons 1

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I always say that people can hear us even if they are in a coma. I believe they can hear us even when they appear to be dying. The family in the room wanted him to hold on. His son was on his way from overseas. Due to arrive that evening. I’m not sure how long it had been since they had seen each other. Likely it had been a while as COVID flight restrictions had meant that many families had been separated for much longer than usual. He wanted to see his son. His son was already on the plane somewhere over the Pacific Ocean. Thousands of miles away, 33000 feet up in the air. Everyone was willing the plane to arrive faster.

I wasn’t sure if the son would make it in time to see his father. My patient was in his bed, not able to respond to any of the voices in the room. I counted the pauses in his breathing. 10 seconds, 11 seconds, 12 seconds, Gassssp. The longer the pauses the closer a person is to dying. My best-educated guess was that he only had hours left to live. I knew that his son was still at least seven hours distance away. I didn’t want to scare them but they needed to know of my concerns. No surprises.

“I’m not sure if your Dad can hold on for much longer, I think he might only have hours to go before he dies. He might not be able to see your brother. He will try and hold on for as long as he can, but his body is too weak. He knows that his son is on the way to see him, and he’ll try his very best, but he might not be able to keep on going for so long. There’s nothing I can do to keep him alive. It’s up to a higher power than us humans.”

I spent the next seven hours attending to work tasks. Seeing other patients. Discussing other patients. Writing emails to organize things for patients. Phone calls related to patients. I wondered if my patient would be able to hold on for much longer. I knew he would be trying his best, but he had no reserves left. The cancer had taken away his precious energy. It was removing both quantity and quality of life. It was beyond the control of sheer willpower, no matter how strong the person was. I couldn’t extend his life, no one in the world could, no matter how much money they had. They wouldn’t be able to buy him extra lifetime. I could try to make him more comfortable. I would try to reduce the pain that had been gnawing at his leg for so long. I would try to calm the distress revealed by his furrowed brow. To ease the worries of his gathered family members. I would try my best to make him more comfortable. To look after his family. That’s what I could do. To give him the best chance of seeing his son, or at least to be seen by him again.

Palace of Care – Staying Alive

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Doctor yesterday afternoon when my brother arrived Dad woke up. They were able to talk to each other overnight.

Wow. I was not expecting him to wake up again. I was very worried about him yesterday.

Yes, we were too. We’re happy that he has come back to us again.

That’s good. He was troubled by pain again overnight. I need to increase his pain relief again.

We’ve been keeping his mouth moist, and he has swallowed some coconut water. Is that okay?

That’s okay but make sure that he is fully alert, otherwise, he may choke.

Okay, see this is how we have been giving him the fluid.

Hmm, he is swallowing okay. You can keep going.

Good, we were worried that he was starving. We want to give him more fluids. Could we give him an IV line and glucose?

It’s best to give him fluids by mouth, any IV infusions would still be too much for his body to handle.

They’ll cause uncomfortable swelling?

Yes, that’s right, and it might make his breathing worse. Is there anything else you need?

Could you write a letter to support our relatives coming over?

Yes, I will write the letter after I prescribe the medications.

Thanks doctor.

You’re welcome. Let’s take things one day at a time. Please let us know if you need anything.