Palace of Care – Final Common Pathway

Photo by Josh Boot on Unsplash

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?

Continue reading

I think therefore I am? – A toast to absent friends and family

Photo by krakenimages on Unsplash

Periods such as Christmas may be a stressful time for a lot of folks and this year things have once again been magnified by COVID.

There will be some people missing from Christmas Lunch/Dinner tables this year.

Unfortunately over the past 13 years my own family table has become increasingly spacious.

That’s the harsh reality of death and dying, it doesn’t take into account public holidays or religious occasions. Death’s calendar is not an Advent calendar and the countdown to the final day is not so clear-cut or accurate. We say to the families we work with in our inpatient units,  if your loved one can’t go home for Christmas please feel free to bring a bit of home into our hospice for Christmas.

For some people it will mean that Christmas,  New Years and other important milestones, might have to be brought forward as they may not be able to make it to the actual date, even though it is only a day away.

No presents can replace actual presence, but sometimes virtual is the best that we can do given the COVID-normal global situation we are living in.

Please take a moment to reflect on why we do, what we do in the practice of palliative care. It’s in order to help our fellow human beings. Decreasing suffering in all of its forms, not just physically, but emotionally, spiritually and familially/socially. That is what it is all about. We are here to support patients and their families through what may be some of their toughest times.

A continued work in progress.

Thank you all for reading.

Wishing y’all all the best for the festive season and a better 2022.

Bedside Lessons – 18b. A troubled young man Part 2

Photo by krakenimages on Unsplash

His blood test results came back and were unusually good, the blast cells were reduced in numbers compared to on admission. Bloods were repeated weekly, and they continued to improve, to the point that there were no longer blast cells present at all. The Haematologist was contacted about this unexpected finding. She was surprised as his blood tests hinted at something that they had never been able to achieve before. Was this a remission?

A bone marrow biopsy was urgently organised, and revealed a pre-Christmas miracle – remission was confirmed. Somehow his disease had been controlled, by what we all did not know. Plans were hastily made for our patient to undergo a bone marrow transplant, with everyone’s hopes raised that it would lead to longer term control.

Our patient had mixed emotions, since he had become sick this was the first time that he had received good news, and he didn’t know how to handle it. He didn’t celebrate his remission as much as his family and clinicians did, as he couldn’t totally believe it. He was discharged home to his family’s rented home for Christmas together, with everyone hoping that a better year lay ahead.

Continue reading

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

Photo by Towfiqu barbhuiya on Unsplash

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.

Continue reading

Bedside Lessons – 17. The Carver

Photo by adrian krajcar on Unsplash

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

Photo by Max Griss on Unsplash

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.

Continue reading

Bedside Lessons – 15. The Elite Soldier Part 1

Photo by Rob Pumphrey on Unsplash

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.

Continue reading

Palace of Care – Flirting at the end of life

Photo by Jackson David on Unsplash

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.

Continue reading

Bedside Lessons – 14. Stuck in a moment

Photo by Karsten Winegeart on Unsplash

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.

Continue reading

Bedside Lessons – 13. Waddya waiting for?

Photo by Vadim Bogulov on Unsplash

He was well respected and had many visitors. He had sponsored most of his family to come over to New Zealand. He had enabled his brothers and parents to come over in order for them to have a better life. He was the reason that the children’s generation grew up speaking English and Chinese. He ran his businesses successfully with the help of his siblings.

It was unfortunate that he became unwell with cancer, but he was well-supported by his family. He had always been there for them so when he was unwell they were there for him. He was able to purchase the best care that money could buy, and his Private Oncologist tried everything that was available, but it did not work.

He went back to China in order to access other treatments but they did not work either and meant that he had to spend time away form his family which he did not like. Family was the most important thing to him in the world. That was the whole reason that he had worked so hard in order to make things better for his family, so that they could enjoy their time together.

He started to deteriorate more quickly and he was admitted for symptom control but ended up requiring end of life care. There was always a family member present. When he started having trouble swallowing, the family asked about tube feeding. We knew that back in China if you could afford to pay for it you could access almost any treatment you wanted. It was explained that we did not think that artificial feeding and hydration would be beneficial. He became sleepier and less clear in his thinking. Eventually he became comatose.

His family continued their vigil, even though he was unresponsive. They asked how long he had left, and we couldn’t give them a adequate answer. They rightfully pointed out to us that he had not had anything to eat or drink food about two weeks. How could he keep on staying alive? I had trouble explaining it with all of my medical training, our science could not explain what was going on.

Continue reading