Palace of Care – Late referrals to palliative care are still common

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We had only received the referral the day before. Our nurse went out to see the patient and found him to be likely dying, suffering from pain and great distress. His wife who had been a registered nurse for almost 30 years was still talking about taking him into hospital for further treatments. They were persuaded to come into the hospice by ambulance.

The junior staff had seen him and asked for me to see the family as well, as they just couldn’t get the point across. They thought that he was actively dying, but his wife and daughter were still talking about going into hospital for active treatments, whatever was available.

I walked carefully into the tension of the room and noticed that the patient was breathing heavily, was not able to respond, but otherwise looked comfortable. His daughter was breathing heavily, unable to respond because she was crying, and looked uncomfortable. His wife was breathing quickly, responded slowly to questions, and her discomfort showed on her face.

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Bedside Lessons – 19. Let him cry

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He had asked to talk to us away from the hospice room where his wife was sleeping.

The trainee specialist and I led him to the patient lounge room down the corridor.

We all sat down.

We talked about how his wife was dying, how he was actively supporting everyone else in their life. Especially their three teenaged children, who were barely coping with the pending loss of their mother. He said that he had to be strong, that he would get them all through it…

The floodgate of his face broke, he curled up in pain, and the torrent of tears was released. The trainee reached for the box of tissues, and for his shoulder, and started to speak.

I subtly raised my hand to stop her from saying anything.

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Palace of Care – Traffic Conditions

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Metastatic cancer deposits in the abdomen can act like speed bumps on a road, slowing down the traffic of the gut, that’s why there is a greater tendency towards constipation. As these cancer deposits grow they can make things worse and if they are big enough can cause a roadblock, a bowel obstruction. The gut traffic will try to push through the roadblock but cannot do so, this can be painful, and will lead to reversal of the traffic flow, vomiting.

One of our treatments involves loosening up the roadblock with corticosteroids, they sometimes can decrease the swelling and inflammation surrounding the cancer deposits.

We have medications which we use to try to push harder through the roadblock – pro-kinetics which increase gut traffic.

The gut’s job is to digest food, and it produces around 2-3 L of digestive juices every day. We have anti-secretory medications which can reduce this production, helping symptoms by decreasing the volume of gut traffic.

There is a physical treatment which can be considered but which is more uncomfortable and invasive – the nasogastric tube. A tube inserted through the nose, goes down the throat and into the stomach, providing an alternative route for the vomit to leave the stomach – A detour.

Sometimes the roadblock/obstruction can be overcome, but a lot depends on the driving conditions as well, the overall health of the countryside – the person’s general health status.

If only there was a traffic forecasting system or GPS system that could help us to tell how the journey ahead will be. This does not yet exist with the current state of medicine and technology.

Despite the destination being the same, each individual trip may be completely different, and we can still modify try to modify the quality of the experience.

Please drive carefully if you are journeying on the roads during the holiday season.

Palace of Care – Final Common Pathway

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She keeps on saying that she wants to go home, but we couldn’t cope with her at home.

She’s too unwell to go anywhere, I think that she could die at any time. I fully support your decision to keep her here in our inpatient unit. We’re going to get you all through this. She can’t go home for Christmas but maybe we could bring more of home in to this room?

Yes, we’ve put up the first of the Christmas decorations.

Please bring in more.

There’s something else that we need to talk about.

Okay.

We previously had a conversation with our Oncologist about ACP (Advance Care Planning,) and we talked about resuscitation, CPR. It was a bit tense as our Oncologist felt that it would not be in her best interests. We did not agree, and wrote in the ACP that we wanted full resuscitation.

Right.

Things are different now, and we’d like to reverse the decision.

You want her to be not for resuscitation?

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Bedside Lessons – 18a. A troubled young man Part 1

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A young man had been discharged home to an uncertain fate. His home was a converted garage, he had no family to support him, they were all located an eight hour flight away. He was reported to be in severe pain, due to his end-stage leukaemia. As he was 26 years old they had tried every treatment available but nothing worked. He refused to be admitted into the local hospital as he had been banned from there after previously assaulting a security guard during an admission. The referral said that he was under the ongoing care of a psychologist as he had “many issues” to deal with, including borderline personality traits, anxiety and anger control issues. We admitted him for symptom control, and possible end of life care.

From what we read we expected trouble, what arrived was a sick young man who looked as if he was about to die. Doubled over in pain from a grossly swollen spleen, he could barely speak to us, but was polite when he did so. We increased his pain medications generously and started high dose steroids to try to decrease his spleen swelling.

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Bedside Lessons – 17. The Carver

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How you doing?

Okay, I’m feeling better than yesterday.

They told me you had a lot of pain overnight. Pain can make you really tired.

Yeah, I haven’t been the same since I was in hospital.

When did the mouth get bad?

Since hospital.

And your skin, when did it start getting bad?

Hospital too.

Was that when they started the steroids? Have they helped?

I don’t know, I don’t feel any better.

Anything else wrong?

Heh, my arse is really sore too.

What do you think is going on?

Not much, I’m just really tired.

Your lungs haven’t been so good since you were a kid, then they got worse with the COPD. That wasn’t enough for you? Then you got heart failure and then cancer. That’s a bit greedy isn’t it?

Heh, yeah I guess so.

What did the doctors tell you about your cancer?

It started in my lung, has gone to my tummy, here, here and here. Also gone to my back.

That’s pretty serious, it’s made you lose weight eh?

Yeah, heaps, I just don’t feel like eating anymore.

Anyone else got cancer in your family?

Yeah my parents both died of it, and two of my sisters have it too.

That sucks.

Yeah it does.

Could you try using some more pain relief?

Okay, I’ll try.

Are you a spiritual person?

Yeah, nah, not really.

What’s the most important thing to you in the world.

My whanau/family.

What do you like doing, what keeps you going?

I like to draw, and I’m a carver, I carve bone and wood. My son is a carver too.

Heh, I can carve too…Ham on the bone, leg of lamb, roast of beef. I’ll bring my friend’s wood carving over to show you later.

Sounds good, thanks.

Bedside Lessons – 16. Summer Flies By

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I opened the curtains this morning and there was a little fly. These have become ubiquitous in the past weeks as we have entered New Zealand’s summer. This fly was doing it’s thing near my bedroom windows and despite still being bleary eyed I tried to catch it with my bare hands. Using my whole hand did not work, the fly was able to weave it’s way between my fingers. After a few flailed attempts, I decided to change my strategy. I would try and catch it between the index finger and thumb of my preferred right hand. I went to grab it, and made contact. The fly was stunned and landed on the window sill, I promptly threw it out the window. Little did I know that this series of events would lead to a communications breakthrough later in the morning.

There was a tension in the room as we walked in. The patient was having suctioning done, but from the sounds of her breathing the fluid that needed to be cleared was deep in her main airways. As people near the end of their lives they are less able to cough, and so a tiny amount of fluid can pool, and these can result in a rattley sounds produced on breathing out. Just like when you are drinking something through a straw, at the end of a drink, a tiny bit of fluid can make a lot noise. The same occurs at the end of a life, a bit of fluid vibrating in a deep airway can be noisy, it probably doesn’t bother the patient so much but can be a source of distress to their family members, and even clinical staff.

The adult children, all of whom were parents themselves, were attentive but all looked scared with deep concern etched on their faces. Their beloved mother had been well up until only three weeks ago. Then a large brain bleed had come out of nowhere, rendering mother unconscious. Off to hospital, with many invasive procedures completed but no significant improvement obtained. The doctors and nurses had tried everything they could, but the patient remained unresponsive.

The family were told that their mother/grandmother was dying, but it took a while to sink in. It is usually hard enough to visit sick loved ones in the hospital, let alone during strict Covid-19 lockdown conditions. A very distressing time for the patient and her family. Their mother who had brought them up well, who was the beloved grandmother to their collected 7 children, was not going to be alive much longer. They hated to see her in such extreme distress, and were trying to help, but really did not know what to do.

Communication was crucial but to begin with the emotional temperature in the room was icy cold. An icebreaker was required as it was difficult to establish any rapport with the patient’s children. The patient herself had not been able to speak or respond for some weeks. Even using our mutual second-language, Mandarin Chinese, I had trouble connecting with the distressed family.

Something must have noticed and sent along a little helper, through the window. A fly was flitting around the patient and we tried to swot it away, but it was persistently dodging all attempts. I readied my special index finger and thumb technique that had served me well this morning, I was primed and ready to strike when the air in the room was disturbed by a whooshing sound.

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Bedside Lessons – 15. The Elite Soldier Part 1

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If he had been a veteran of another war he probably would’ve received The Commonwealth countries’ highest military honour for bravery – The Victoria Cross. He had carried his severely injured comrade over his shoulders and had run at double pace in order to ensure that “no man was left behind.” Any other war he would’ve come home a hero, but on his return he was called many names; murderer, child-killer, Imperialist Puppet. He hadn’t served for fame or glory, he had done his job, he had served his country, and had followed orders. He and his fellow soldiers were shunned and he had to hide the specialness of his training, and he learnt how not to talk about sensitive subjects.

It was difficult fitting into a peace-loving society when you had been trained to channel your propensity for violence into your bread and butter work. The aggression still needed an outlet and society was not too receptive of this. He rediscovered football and was able to divert his rage into victorious feats of gallantry. He became a trusted team-mate and was able to translate this into a successful coaching career, allowing his leadership skills to flourish.

His teams did well, and he won many accolades, but the hurt inside continued to need suppressing. He swallowed it deeper and deeper, until he had almost forgotten it, almost. Life had its ups and downs, success on the field, was not always reflected in his significant relationships off the field.

He had received the worst news just prior to being admitted into hospice. As with all the other bad news, he took it like a man. Face to face, without flinching or reacting, there would be time for that later in private. In public he had to represent his team, his unit, he had to be the hardest of weapons. They had told him that he only had three days left to live.

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Palace of Care – Flirting at the end of life

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Good morning we’re two of the hospice doctors, the pharmacist and of course you know your nurse.

I can tell that you are very clever people.

You are a very charming lady to be able to tell that, as your eyes are closed and you can’t hear us apart from when we shout in your ear.

My hearing aid is broken, I close my eyes so that I can listen more intently.

That’s what I’m doing too.

I felt more comfortable and at peace as soon as I arrived in this room. So I’m not sure if I have any pain or discomfort.

The male doctor looked puzzled as the patient moved her hands, grabbing onto his shoulders.

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Bedside Lessons – 14. Stuck in a moment

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By the time of his admission he’d been on the steroids for six months, to counter swelling caused by brain metastases. His wife had stopped nursing at the GP practice in order to care for him.

He had been deteriorating in recent weeks and could no longer be reasoned with.

We couldn’t talk to him, he just stared at us blankly when we asked him questions, his wife had to answer for him.

She described him sitting on the bed eating mandarins spitting the seeds out onto the carpet.
She said that he would be horrified if he knew what he had been doing, as he was the tidiest person she knew and he had always been house proud.

The worst thing that had happened was after he had urinated on the bedroom floor having mistaken it for the toilet. He then slipped on his own urine and fell to the floor, luckily he did not hurt himself badly.

I asked if he had any seizures. She said that at times she had seen his arm going rigid, and then he seemed to be even less responsive. She had thought of seizures, but there was no jerking. She had mentioned it to the Oncologists but they had not looked into it any further.

I was intrigued by this. Could it be non-convulsive status epilepticus – repeated ongoing seizures without convulsions leading to decreased consciousness? His wife agreed to a trial of anti-seizure medication. If the medication didn’t make any difference we would stop it.

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