Palliverse’s Greatest Hits from Oct 2014 – #getjakbak revisited – Part 1

Photo by Rob Wicks on Unsplash

What a disaster I thought, as I listened to the referral. A 44 year old man had become unwell in the Pacific Islands and had been urgently transferred to New Zealand for assessment and treatment. He had an abdominal mass lesion which was extremely painful after having had massive weight loss over the previous two months. He had been a great orator and had been destined to be a future leader of his church. He was married without children.

He and his wife had come over two months ago and things had not been good at all.
He had been diagnosed with a large abdominal mass found to be cancer with spinal cord compression and lung metastases. The impression was that there was nothing that could be done medically for him, and that he should try to return back to the Islands as soon as possible as his condition would likely deteriorate quickly.

Travel arrangements were made for him and his wife to return back home in the following week, but he became acutely unwell before he could finish arranging his journey. A difficult situation, thousands of miles from home, with little in the way of family members or support locally. Displaced, stuck, and also critically unwell.

Continue reading

I think therefore I am? – Milestones

Photo by Towfiqu barbhuiya on Unsplash

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?

Continue reading

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

Photo by Aron Visuals on Unsplash

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.

Continue reading

Bedside Lessons – 19. Let him cry

Photo by Tom Pumford on Unsplash

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.

Continue reading

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

Palace of Care – Middle-Earth Misgivings

Photo of Tawhai Falls by Luca Calderone on Unsplash

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.

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