I think therefore I am? – Why Should They Trust Us?

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The patient arrived and looked as unwell as she had sounded on paper. Advanced end-stage illness, worse for wear after many weeks in hospital. Poor sleep night after night. Recurrent bad news relayed, unclear if understanding had been checked on or not. The standard restaurant question, “how’s your meal going?” is not asked in most clinical settings. I was told they appeared wary and slightly suspicious of what we had to offer. They had just met our team, they did not know us, we did not know them. They were assessing us as much as we were assessing them. We were not there to be opponents or combatants. We needed to connect in order to work together on the same team. If it wasn’t for the patient, none of us would be in the same room as each other. We were strangers who needed to try to collaborate with each other.

First impressions count. I relaxed my control of my Kiwi accent and let my inner hometown boy speak. I slipped in as many indigenous words as I knew to make it clear that their culture and traditions were welcome here in our hospice. I mentioned that a Chinese dude would be leading the singing practice the following morning, songs written in their language. “Please join me, I need all the help I can get. I’m tone deaf, I don’t understand what musical keys are, but I am loud. I once had singing lessons, but my wife asked me to ask the teacher for a refund.” The sound of our shared laughter was the background music to our rapport building project.

“We’re going to take things one day a time. We’ll get to know you. You’ll get to know us. We’ll all work together to get our patient/family member more comfortable.”

Trust has to be earned, one interaction at a time. We may only get one chance to connect. Give it your best shot.

Palace of Care – Good Enough?

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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.

Palace of Care – No Warning

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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.

Palace of Care – What Went Wrong?

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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.”

Palace of Care – Days?!

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How much time has she got left doctor?

She likely only has days left to live.


Yes, probably just days.


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.

You’re welcome, see you later.

Palace of Care – Before You Go

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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.

Palace of Care – And Then There Was One

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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.

Rest in peace dear lady.

Palace of Care – Waiting For?

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Was he waiting for his brother to come and visit him?

Despite trying his best he couldn’t come as his visa was not granted. The best they could do was to arrange a goodbye via video call. Not in any way a replacement but better than no contact at all. The too common experience of extra suffering caused by geographical distance. The brutal trade-off that all immigrants have to face when they leave home. They move in pursuit of a better life for themselves and their families. The costs of separation might have been considered but do not sink in until tragic events occur. An ocean away can feel like a galaxy away. The unfulfilled wish of being there in a time of need. Reunions depend on the whim of bureaucrats who, at times, are felt to be heartless, lacking in empathy and disconnected from the human race.

What was different in the past week? How did he hold on? Why?

During his dying phase, he had spent more time with his ex-wife and daughters, than he had in many years. One of his biggest regrets was not spending more time with them before he had become unwell. The events preceding the divorce had stuffed it all up. During his final admission, there was always someone staying with him, 24 hours a day. A sensible roster had been set up between his wife and daughters as they held their combined vigil. Was he trying to extend his precious time with his ladies for as long as possible through sheer willpower? Maybe. He was beyond asking. We could never know for sure.

He died last night, in the presence of his family. He had outlived our prognostication by many days.

Rest in Peace Sir.

Palace of Care – Healing in the Hospice

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I’ve had relatives who’ve come in before but they never made it out, they died after a couple of weeks. When he was asked to come in we were pretty nervous, we didn’t quite know what to expect. Yeah, we were scared. We had to do something though. His tummy pain was real bad, but it was his anxiety and panic attacks that were the worst. He’d freak out and I didn’t know what to do. I’d freak out too. His pain was controlled after a couple of days in hospice, then his panic attacks settled down. This was despite having received the worst news ever, that he had cancer.

We didn’t know they were looking for cancer during the last three months. We thought they were trying to find out why he was constipated. We didn’t know why he had lost 30kg of weight. He had always loved food but then he had no appetite. The poos kept on changing, sometimes hard, sometimes soft, sometimes with blood. They stuck a tube up his bum to have a look but they had to stop because the sedation they gave him almost killed him. It was a shock when the hospice doctors told us that the other doctors thought he had cancer.

The other great thing about being here in the hospice is that it is neutral ground. It was safe for him and his ‘niece’ to meet up here. You allowed us to have some space and they were able to start talking. Yesterday they ended up just going to a cafe together and they sorted out the issue between them that had kept them apart for decades. He’d done some stuff in the past. He’d done his time. Coming here to hospice allowed them to heal. Deep healing of the spirit happened yesterday. He came back a changed man. A father and daughter were able to connect with each other, to start to build a relationship that had been broken for years. It was good for the grandchildren to see this happen. It’s good for the whole family. We couldn’t have done it without what you have provided us here. It means so much to us. Thank you so much.

Palace of Care – Breaking the Circle

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I felt that the hospital doctors wouldn’t give me a straight answer. They kept on going in circles. I had to pin one of them down and asked him how much time I had left. I needed to know as I have important stuff I need to sort out.

What did the doctor tell you?

He said I had two weeks left to live.

How long ago was that?

Two weeks ago. Now I don’t know what’s going on or how much time I have left. I just want people to be honest and direct with me. I can handle it. That’s nothing compared to the pain I’m putting up with in my leg.

I’m not sure how much time you have left, it could be only weeks, but…it could be much shorter if things get worse quicker. I’m worried about you. You have two separate cancers which have put great strain on your body. Your kidneys haven’t been doing well. All of this has made it hard for your body to heal. That’s why your leg wound has been getting worse.

It leaks so much. It just soaks through the pads. We have to keep changing them. I have to position my leg so the liquid will drip away from me. If I don’t my clothes and everything else would get wet.

There’s a risk that your leg could develop an infection which would put you in danger of dying. If this was to happen would you want to go back to hospital for treatment?

What’s the point? Would they be able to do anything for me?

Probably not and I think they wouldn’t be able to take care of your pain as well. I know they’ve tried lots of different medications over the last weeks. Have any of them worked?

Not really, the pain builds up until I can’t handle it. I end up grabbing the arms of the chair while I grimace. The hospital doctor saw me during an episode and she didn’t know how I could handle the pain.

Sounds awful. We made some changes yesterday afternoon, did you notice any difference to your pain?

To be honest, no I don’t think so.

I think your pain will be hard to control. We will keep on trying and will use bigger doses. There is a chance that the medications might make you more sleepy. Would that be okay with you?

If you can control the pain that would be better, I haven’t been able to sleep because the pain has been too bad during the night.

There’s a chance that we might not be able to control your pain no matter what we try. If we can’t control your pain then I would give you stuff to make you less aware of the pain. It would make you sleep. I would only use that as a last resort if everything else failed. If I can’t control the pain I won’t let you suffer.


Do you have anything else that you still need to take care of?

I’ve already planned my funeral. I have funeral insurance which will pay for it. There are only a few small things I need to sort out with my lawyer.

Better get onto these things. I’d rather you do it too early than too late.

Do you have any questions?

No, you’ve covered everything.

I’m going to start slamming your pain hard because I want to try to bring it down as fast as I can.

Thank you.

You’re welcome. See you later.