I think therefore I am? – Milestones

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There is something about the human spirit, some amazing inner strength that people have that allows them to hold on for special occasions. Two major milestones for people are Christmas Day and New Year’s Day. Out of the past ten years I have worked 8/10 of the New Year’s holidays. What usually happened was that no matter what spiritual belief people had they would likely hold on for Christmas Day, and possibly for New Year’s Day and then we would see a large number of people dying once they had achieved their milestone(s.)

Sometimes it can be living through their wedding anniversary, or beyond a loved one’s birthday.
People often will try not to die on a significant other’s birthday, so that the birthday will not be spoiled from thence on.

How does a comatose person even know the date let alone know what the time is? Somewhere deep inside ticks a very accurate body clock? People may be holding on for special occasions such as the wedding of their child, or grandchild. Or it might be the birth of the newest family member.

In Aotearoa New Zealand a lot depends on the national religion. People will hold on for the Rugby World Cup – the Rubgy League World Cup, not so much.

How can a person sense their environment when they physiologically have been made insensate?

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

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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

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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.

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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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Palace of Care – Middle-Earth Misgivings

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He had moved over to New Zealand because of the Lord of the Rings Trilogy. He had loved the scenery in those movies and had wanted his son to grow up in the country that the films had been made. They’d moved over six years ago, and had worked hard since arrival, building a better life for themselves.

He and his wife were high school sweethearts, they were also University classmates and after graduation they had married. Their son was now 10 years old. They had settled in Auckland and devoted a lot of time into growing their own demolition business.

Their idyll was smashed by the wrecking ball of illness when he suddenly had a seizure. He couldn’t remember what happened but it had been frightening for his wife and son. He regained consciousness in hospital and bad news was related to them. He had a mass in his brain. A scan of his body revealed a lung cancer. He didn’t smoke, and had no family history of cancer. Bad luck had brought cancer into his life, and it had spread aggressively to his liver, to the other lung, and into his brain causing the seizure. It ignored his behest, “You shall not pass!”

He talked about his regrets. He had moved thousands of miles away from his family in Asia, all the way to this country with the beautiful scenery. They had worked so hard that they never had time to leave Auckland, he had barely crossed the Auckland Harbour Bridge. He had never seen in person the spectacular vistas that had drawn him and his family over. He wished he had spent more time with his only son. He knew that he would be leaving his wife soon and she would have to raise their boy alone, that nothing could stop him from dying.

Agonised tears flowed like the waters of the Tawhai Falls, where Gollum was filmed catching a fish, another place he never had a chance to visit. His desolation much worse than any a dragon could’ve wrought.

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.