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

Photo by Nikola Johnny Mirkovic on Unsplash

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?

Photo by Nik on Unsplash

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

Photo by specphotops on Unsplash

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?

Photo by Taylor Deas-Melesh on Unsplash

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?!

Photo by Slashio Photography on Unsplash

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 – Breaking the Circle

Photo by Todd Quackenbush on Unsplash

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.

Palace of Care – Low Affinity

Photo by David Clode on Unsplash

Anything you eat or drink might come back up again.

No, it has been coming back up already. What’s going on?

You’ve got a blockage in your bowel. It acts like a roadblock. If it can’t get through the roadblock things go back up. We can try to loosen up the roadblock with bigger doses of the steroid medication that was started at the weekend. It may or may not work but there may be side effects.


You might see the psychedelic lights that you saw the other day. That was scary for you. The steroids will worsen your immune system, making it harder for you to recover from the pneumonia which has come back.

Why is this all happening? I don’t feel well, no energy at all. Is the cancer progressing?

Yes, the cancer is getting worse and causing new problems. A bowel blockage and pneumonia at the same time is a serious and dangerous situation. I’m not sure if you’ll recover. We can try increasing your medications to see if they will help. Would you like that?

Yes. Do I need to get another scan?

No, we know what is going on already. A scan might confirm that but it wouldn’t change our management. We’d only do tests if the results would change what we do, otherwise, it wouldn’t be a good use of your time.

So all I can do is sit here and wait?

You can do whatever you feel up to doing, but I don’t want you putting up with pain.

I don’t have any pain.

Or discomfort.

I don’t have any discomfort.

Apart from your back and tummy. You also feel exhausted.

Well, yes but it’s not too bad.

Okay, we’ll work on making you more comfortable, we’re going to adjust your medications now.

The nurse said she’d take me out to the garden.

That’s a good idea, it would be good for you to get some fresh air and sunshine.

Palace of Care – Checking In

Photo by Nick Fewings on Unsplash

How’s your pain today?

It’s not bothering me. It’s my tummy that is uncomfortable. I feel like I need to poo but it won’t come out.

Okay, it’s good that your pain is better controlled. We’ll have to work on your poos today. What else is troubling you?

I’m just so tired. Don’t have energy to do anything. I can’t even get out of bed.

Yeah, they told me you hadn’t been out of bed for a while.

That’s all I want to do, to get better so I can get out of bed and walk around a bit.

Okay, we’ll keep on trying to make you more comfortable.

Should I go for the radiation treatment?

How did it go the last time you had it? Did it help your pain?

Yes it did. Do you think it will help me this time?

Maybe it would, if you’re feeling up to it you might as well get it. It might help your pain more.

Okay, thanks Doc.

You’re welcome. Do you have any questions?

When can I go home?

If you keep on improving like you have, maybe after your radiation treatments. Give you something to aim for.

Okay. You’ll remember to help me with my constipation right?

Sure will.

Palace of Care – The Last Dance

Photo by Jusdevoyage on Unsplash

Thank you for taking him home, that would’ve made him really happy.

As soon as he got home he wanted to go back to hospice. He really likes it here. When he was last here he was dancing with the nurses and singing as well.

How did it go at home?

It was hard. He didn’t know what he wanted. Things kept on changing quickly. We couldn’t cope with him at home. He was very confused at times and demanding and angry.

Unfortunately, the people you are closest to can be treated the most harshly when people are very unwell.

Is he in a coma?


But he’s still able to move at times, and he opens his eyes but doesn’t really interact.

Yes, that can happen. He is deeply unconscious but may still be able to move. At other times he might be more wakeful, with lots of ups and downs. This is normal for dying people. He might have only days left to live, but it could be much shorter. No matter how much time is left we will try to make it as comfortable as possible.

Thank you.

Palace of Care – Time Is Short

Photo by Emanuel Ekström on Unsplash

I don’t think she has much time left.

I think you’re right. She has deteriorated a lot, even overnight.

She tried to talk to us around 4 am, she recognised us but went back to sleep. I think she can still hear us.

I think so too. She will be comforted by hearing your voices. To know that you are looking after each other. Otherwise, she will worry.

That’s my sister, always worried about everyone else. She was starting to get confused in the last two days.

That can happen when you are really unwell, we see it all the time. We’re going to make some changes to her medications to calm everything down. I want to keep her calm and peaceful like she is now.

Good, that’s all we want.

We’re going to get her through this. We’re going to get you both through this as well.

Thank you.

That’s why we wanted to give her some more time here. She’s in the right place, we are going to look after her. You two need to be the family members now, let us do the caregiving.


Please get some rest when you can and let us know if you need anything.