Tag Archives: dying

Palace of Care – Love Changes Everything Part 2

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Photo by Jackie Tan on Unsplash

The new normal had been in practice for some months. Receiving chemotherapy, recovering from the treatment, then a short break before the cycle started all over again. It was the short breaks that she looked forward to the most, when they could be free from feeling really unwell, almost normal again. Apart from the changed taste buds, and unrecovered appetite. At least they could enjoy each other’s company and smoke their favourite cigarettes together. Although they came from vastly different backgrounds and family origins, they had been amazed that they had so much in common. “In sickness and in health,” they had said as a part of their wedding vows, and he had certainly fulfilled his part. The doting husband, always there to help, he had never missed any of the appointments. He would text or call her from work during the day. She really needed him during the weeks after chemotherapy, these were her low periods when she had never felt more unwell. At times she almost didn’t want to start the next cycle, but he managed to convince her each time. That this was something that they would be going through together. His devotion had kept her going throughout the tough days and nights. Even in the midst of illness she felt blessed as he was standing by his woman.

It was the week after cycle four, they were just about to enter the recovery phase, and had planned to take a small trip to their favourite beach. They hadn’t been since last summer, things had been too hectic. This would be their chance to get away from the city, and their problems. He had gone to work as usual, he had prepared her breakfast before leaving, allowing her to sleep in. It was getting close to lunch-time and she was looking forward to saying good morning to him, he’d usually call her during his lunch break. No call came. Strange. She texted him but there was no reply. She noticed that there was a message on their answerphone. She listened to the message, it was his boss. Asking her to call him. What’s going on? What’s happened?

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Palace of Care – Mum’s Little Star

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Photo by Sven Scheuermeier on Unsplash

As a little boy his mum would always sing his favourite nursery rhyme to him, as part of his bedtime routine. He was her little star.

We had admitted him only the day before, and we thought that he only had days left to live. End-stage disease had wreaked havoc on his body, and was starting to impinge on his mind. What was important to him? Family above all, his children, his siblings, his parents was whom he spoke about. He was uncomfortable and needed extra medications to control his various symptoms. He told us that he knew his time was short and that his family would be trying to spend as much time as possible with him.

Following the weekend there were less family members around. His mother had become acutely unwell, and the hospital had also found end-stage disease. They made a referral to see if we could admit her as well. The family had to split themselves, with one half holding their vigil in hospital, and the other half holding their vigil at the hospice.  Never the twain shall meet?

A no-brainer from my point of view. Let’s reunite the family, dying son could then see dying mother. A really sad situation, but at least the whole family could be together for both dying family members. Quick logistical arrangements were made and the son was shifted to our largest room. This would allow both beds to be in the same room as each other at times. So that they could all be surrounded by their family members.

No-one could lessen the tragedy of the life event, but at least the family didn’t have to split themselves in two, trying to hold a vigil at two places at once. The overall stress was relieved a small amount as they accompanied their loved ones in their final days.

The son set after two more twilights, and his mother would only experience three more sunrises before her light dimmed for the last time. The family planned to hold a combined funeral service in which many stories would be highlighted, and the warm glow of love would be shared.

Twinkle twinkle little star
How I wonder what you are

Palliverse’s Greatest Hits from Oct 2014 – #getjakbak revisited – Part 2

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Photo by Jonathan Kemper on Unsplash

At 3pm on Friday afternoon, 18 hours before our departure time, I received bad news. The promised community raised funds had not come through. Was the trip to be cancelled because of a deficit of $3320?

I finished the phone call and took a quick walk around our inpatient unit, and talked to some of the staff about the funding problem. One of the nurses asked me what I was going to do. I really had no idea but for some unknown reason I replied to her, “Magic.”

I had 120 minutes to come up with $3320, at a rate of $27.67/min. What to do? What could I do? What was on the line was a dying man’s wish to return home to see his family. This was his final chance to try to get home, he had been trying to get home ever since he had arrived here months ago.

Who could help? Maybe a virtually community of practice? I went online and decided to launch my first ever crowd-funding campaign, asking people to pledge money towards the trip deficit. The original post can be read here. I emailed a link to it to everyone that I knew.

17 minutes later the first pledge came in, then another, then another. Drip by drip the pledges came in. $20, $40, $100, $200. Palliative Care people were keen to help including healthcare staff, administration staff. People from around New Zealand and Australia came to our aid. One of the other patients on the ward caught wind of what was happening and pledged $200 to help his fellow patient get home.

With only five minutes to spare we reached our goal, the trip was going to happen! I went to see our patient and his wife and told them that I would be seeing them early tomorrow morning for our trip back to the Islands.

Island-Man: Far From Home

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

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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.

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I think therefore I am? – Milestones

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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?

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

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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.

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Palace of Care – Middle-Earth Misgivings

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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.

Bedside Lessons – 13. Waddya waiting for?

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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.

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I think therefore I am? – In-between

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Photo by Rohan Reddy on Unsplash

Palliative Care lies in between the usual medical culture of active treatment and the culture of death and dying. Was that what attracted me to Palliative Care, having lived as an in-betweener for most of my life? Growing up between two cultures; Chinese at home and mostly Eurocentric outside of home. This continued for me in University being part of the local Chinese Group but also being part of the newer Asian immigrant group. A bridge is needed between the two groups as the two different cultures can be different in many ways, and may think that they have little in common.

Standard healthcare is directed at saving life, curing disease, fixing things which are broken. Death is looked upon as the great enemy, something to be fought against, railed against until the dying of the light. People have to go to battle against their diseases, go to war, but when it comes to your own bodies the collateral damage may be too much too handle.

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Bedside Lessons – 10. Freedom to Choose

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Photo by Deleece Cook on Unsplash

Working in the community palliative care team I don’t meet in person most of the patients that are under our team’s care. I often have to provide advice for people that I have never met and have to count on my staff members’ assessments as the basis of knowledge of each patient. This is how our specialist support is provided from a distance, this allows me to have about 380 patients under my consultant remote control supervision at any time. Often I will provide advice which will be conveyed to the patient and their family doctor to be actioned.

This is the story of someone I never actually met but whom I provided advice on, an elderly Jewish lady who was a Holocaust survivor. I never found out which concentration camp she had lived through but somehow she had stayed alive when many had not. When she was young all control of her life had been taken away from her. Separated from her family whom she never saw again, made to endure hellish conditions, tattooed and emotionally scarred for life, she some how made it through her ordeal. She moved to New Zealand, married a local man, had children and grand-children and a rich and rewarding family life.

Recently her health had taken a turn for the worse and she was diagnosed with metastatic cancer with spread to her brain, causing headaches, and seizures. Despite having had radiotherapy treatment and high dose corticosteroid treatment her symptoms worsened. She was still clear in her thinking but was at risk of this deteriorating soon.

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