Tag Archives: dying

I think therefore I am? – If You Had A Choice

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Photo by Vladislav Babienko on Unsplash

At a palliative care conference years ago the audience was asked to choose between two options. Would you rather die instantly without warning or would you rather know about it and die more gradually? We were instructed to think through both options for a few minutes before a show of hands was counted for each option.

Dying instantly, for example from a cardiac arrest, would mean less suffering for the dying person. It’s possible it wouldn’t be so bad for the person going through it. No fear of what was about to happen to them would be generated as they would be taken by surprise.

Ignorance may well be blissful but would have drawbacks as well. Total loss of control, and inability to finish important business. You’d be robbed of the chance to say goodbye to those important to you. You wouldn’t be able to leave your intended legacy. Death is associated with loss and sudden death is associated with its own set of losses. Those left behind would also lose the opportunity to say goodbye to you, to obtain at least some sense of closure. Survivor’s guilt, “If I had known he was about to die I would never have left them alone at home.” There may be more suffering for your loved ones, so many things they will never be able to say to you again.

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Palace of Care – White With No Sugar

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Photo by Brian Patrick Tagalog on Unsplash

It all started over a cup of tea, that was when they first met. They were at the local dance hall almost 60 years ago. Introductions were made over tea and biscuits and then they danced together for the rest of the evening. He was a gentleman and delivered her safely to her parents’ home. That was the start of their courtship and four years later they were man and wife. They moved overseas and enjoyed the big city life for several years. They toured the whole country and had adventures in many places, even visiting a famous underground city. They made their way home and settled down once the first child was on its way. Followed soon by number two.

They bought a house with a garden in which she planted her favourite camellias. All sorts of colours and she tended the plants with care. Nourishing them with her efforts over many years. The children started school and she could start work again. She worked as a secretary making sure everything ran smoothly in the office, putting her natural organization skills to good work. He organized his workshop well, he liked things to be well planned out. Their strong organizational abilities were another thing they had in common, their children were never late for anything.

English tea was her preferred beverage. There was nothing like a nice hot cuppa to warm you up in Winter. It had always been her favourite drink right from childhood. She wasn’t surprised to find out that tea plants were a type of camellia. She had always wanted to visit a tea plantation to see for herself how similar the plants would be to her camellias, but life was too busy. Everything went according to their plan, their children grew up and left home. Then the grandchildren arrived and the good life improved even more.

The organized couple’s plan worked out well, retirement plans had been worked out long in advance and many days were to be spent in their beloved gardens. The camellias never looked better and responded well to her increased presence. What they hadn’t planned for was for cancer to disrupt their well-considered plans. She became unwell and lost a lot of weight. She needed more help with the gardening as her energy had left her.

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Palace of Care – A Father’s Grief

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I went to see the new patient who had just arrived by ambulance. A Chinese man in his 30s who was drowsy and confused. He wasn’t able to move out of bed, and needed full assistance with all cares. He was accompanied by his wife and his father. Our patient’s English was reported as good but he wasn’t alert enough to answer many questions.

“Where are you sore?”

Hands pointed to his abdomen as he grimaced.

His father said, “He’s always considered other people before himself. That’s how he’s been since he was a young boy.”

I made some adjustments to the patient’s medication to try to ease the suffering.

His father came to speak to me, and I ushered him into a small meeting room.

He was angry and devastated. He spoke to me in Cantonese which I have some understanding of, thanks to a childhood of watching Hong Kong TV series on VHS video tapes. My usual slow process with Cantonese, is to convert it into Mandarin and then into English. I have trouble when trying to go back the other way, so don’t speak Cantonese.

He recounted the clinic appointment they had attended yesterday. They had driven from home to the Oncology Centre. His son required a wheelchair as he could not walk the long distances. The Oncology registrar that met them was Chinese and spoke Cantonese. He asked if his son could lie on the bed as he was tired from sitting up for hours to get to clinic. The registrar answered no, that the clinic was too busy today. This surprised the father who said, “Couldn’t they see how unwell he was? Then they told us bluntly, there was nothing they could do for my son. That he was dying. I was so angry that I wanted to complain, but my son wouldn’t let me, he told me to leave it, and that he wanted to go home.” I listened to him for 45 minutes and talked to him in Mandarin which was our shared second language. He had calmed down and was able to head back into his son’s room.

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Palace of Care – Prognostication Scanner

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Photo by National Cancer Institute on Unsplash

One of the prognostication tools that I use in my day to day palliative care practice is a new form of medical imaging. We don’t have to worry about radiation exposure no X-rays are involved. You can keep all of your earrings and piercing jewellery on as there are no magnetic fields involved. It doesn’t rely on ultrasound technology either, in fact it doesn’t even need a power source. No it isn’t the latest version of Google Glass, or the latest VR/AR technology from Meta. My patients don’t need to be referred anywhere and the scan can occur on site, with no waiting list. We don’t even need anyone to review the imaging and interpret the findings. 

Not every healthcare institution is lucky enough to be as well resourced as we are. We have a special scanner which can indicate to us which patient is the most unwell in the hospice inpatient unit. A handy second opinion as prognostication is usually difficult to get right, at best it is an educated guess. We have a mobile PET scanner which makes it easier for us to assess how unwell a person is. We just need to provide it food and water, and occasional access to the local veterinarian. Yes our little CAT scanner has four legs and a tail and is named Charlie.

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Palace of Care – What’s in a word?

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It was his second admission. He had been beautifully cared for by his family over many months, but the last week had been terrible. He was agitated, restless, and did not know what to do with himself. His wife wanted him to come back into hospice for end of life care.

On arrival he was semi-conscious, agitated and not able to talk clearly. His body was so unwell that his mind was no longer able to be lucid. Although he tried so hard to be there, it looked as if he was in-between two worlds. His family reported that he had seen dead ancestors.

I didn’t want there to be any surprises: I spoke in a quiet voice and tried to be as clear to them as possible, using simple English.

He is so unwell, so exhausted. He is dying.

I purposefully used the word dying at least five times during the 15 minutes of my visit.

When someone is dying everything inside can become all messed up, like he’s in a storm. He doesn’t know which way is up or down, and it might be really scary for him.

End of life delirium/terminal restlessness.

When someone is dying, they become less clear in their thinking, and sleepier. That is Nature or a higher power’s [palms open being raised towards the ceiling] way of protecting the dying person from having to have the full 3D/HD experience of dying.

He could see that his own distress was causing distress to his family, which caused him further distress.

I will change his medications to relax him. We’re going to calm it all down, and we are going to get him through this. We’re going to get you all through this.

I was caught off guard when he suddenly opened his eyes and reached out to shake my hand in both of his. He thanked me for what I had done for him.

Nek minnit – [I was being hugged and I hugged him back.]

Palace of Care – Charm Person

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Photo by Clint Bustrillos on Unsplash

I have only ever played the computerised version of Dungeons and Dragons, the fantasy role-playing game, and the version I played was more of a battle simulator. You went on quests with your band of characters, exploring different places, constantly running into trouble. Fights would involve cold hard steel, and mysterious magical spells. Some spells had obvious intended effects, e.g. Stinking Cloud (now that’s magic that I have understood since I discovered baked beans as a kid,) Hold person. A favourite spell of mine was Charm Person, casting this spell on an enemy could instantly change them into a team-mate.

As I started practising medicine as a junior doctor I often fancifully wished that some of the Dungeons and Dragons spells would work in real life. Over the past 22 years I have searched for Heal Person, Cure wounds, Revivify and have been caught short. If only life was that easy. I often wish that I had a magic wand that could change my patients condition for the better, I really do. Or magic pills or potions that would lead to a cure. Sometimes the best magic I can offer is to soothe suffering, provide comfort, offer support. On occasions I have had to use Charm Person, and sometimes even Charm Monster.

Illness can bring out the worst in people, but some people might not have been all that easy to get along with even when they were physically well. There are no difficult people or patients but at times communicating with humans can prove to be a difficult endeavour.

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Palace of Care – You Are All On My Side

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Photo by Sorin Gheorghita on Unsplash

The hospital palliative care nurse called me to refer a lady in her late 80s who prior to admission had lived independently until she started falling over. It was minor slips with minor injuries, then moderate trips with moderate injuries. In the past week she had a major fall, resulting in life-threatening injuries. Hospital tests showed that her chemical balances were all out, that a lot of bones and organ tissue had been replaced by cancer. The reason that she had lost her physical balance was that the cancer had invaded her spine, crushing the spinal cord and rendering her lower body weaker and then paralysed. She could no longer move her legs, but unfortunately could feel pain, and in fact her legs had become hypersensitive to pain. The bundle of nerves that make up the spinal cord do not like being pushed on, and scream out in protest.

During her week in hospital she had almost died twice. Each time, somehow she had recovered. Each time she was left devastated that she had recovered. From being fully independent, she had become fully dependent, a situation that she found impossible to tolerate. She had some stern conversations with The Almighty, she was not happy with what he had chosen for her. Her beloved husband had died over 30 years ago and there wasn’t a day that she didn’t think about him. She wished to be at his side again.

She asked the nice hospital palliative care nurse about the assisted dying service that she had heard about. Printed information was provided which was read and digested, with some difficulty as the pain in her legs and bottom still bothered her despite the pain relief she was given. She thought that she would qualify for assisted dying, having met all of the eligibility criteria and still maintaining her decision making capacity. The palliative care nurse said that no-one in the hospital provided the service, but that a referral could be made to the Ministry of Health in order for them to assign a practitioner to her. A process that would usually take two to six weeks to complete. Her ward team made the referral to the national service.

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Guest Post – Naomi’s Notes – Making Friends

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Photo by Jason Pofahl on Unsplash

The sound of the skipping rope whirring as it hit the ground meant their father was up.  He used to skip every day before he went to work.  

He taught his children resilience, to never give up when learning something new no matter how difficult it was. “You just gotta make friends with it”, he used to say.  

He loved his children and would try and spoil them when he could.   

He fancied himself as a mechanic and would often diagnose the car trouble as needing new spark plugs.  When asked if he had fixed the car he nodded and said  it didn’t need the key to start it, you just had to stand at the front step and clap your hands and it would come.

He was of that generation where you didn’t tell your kids you loved them but you showed them.  When his children told him they loved him it was met by an embarrassed silence.

The removal of his gall bladder heralded the start of his decline. He became increasingly ill and grumpy and as the days moved on he became less communicative.  He was always very direct in his communication. When his children spoke to him on the phone he never said hello or goodbye. He said their name and at the end just hung up.

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Palace of Care – Second Languages Part 2

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Photo by Jaddy Liu on Unsplash

I had been on call for the hospital when the little old Chinese man had first presented to hospital. They had discussed his situation, a large stomach cancer which kept on bleeding, and that his Hb level was only 41. My opinion was that he was dying from recurrent bleeding that could not be stopped. My advice was that the hospital team have a discussion with the patient and family about the fact that his bleeding would be a life-ending event, that further transfusions would not be able to keep up with the amount of bleeding that was happening.

Some of my advice was taken, but not everything. It was as if the hospital doctors had spoken to me in a second language, one that didn’t lead to mutual understanding. They did end up having a conversation with the patient and his daughter about no further transfusions, but this was after transfusing one more unit of blood. The hospital doctor could speak Mandarin with the patient and family. He told them that the last unit of blood was an, “especially strong unit of blood, and would give him an extra boost.” Following this final transfusion the patient was sent across to the hospice.

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Palace of Care – PI – Palliative Investigator

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She was one of our community patients, a lady in her early forties who had been deteriorating over the past week. We were able to control her physical symptoms well but there was a deep underlying sadness deep inside. She was able to accept that she was dying, that she would be leaving behind her 18 year old daughter and her husband. That was not the cause of her upset, our counsellor went to see her at home to see if she could find out what was going on.

What was causing our patient so much anguish? She was well supported by her husband and daughter, and other family members were helping too but as our patient became less conscious her agitation and distress worsened. Was it an end of life delirium or was there something more going on? Her husband said that she was still looking for Mary.

Mary? Who is Mary?

Our daughter.

But your daughter is not called Mary.

Our older daughter.

Oh we didn’t know you had another daughter.

She was stillborn when we had her 20 years ago. We were young and didn’t have enough money to properly bury her. We only had a few hours with her before they took her away. We never found out where she was buried. We looked for the first two years but our English wasn’t as good back then, we had just moved over from the Islands. We never found her, but we’ve always missed her. Especially my wife.

There was a mystery to be solved, I had to find out where baby Mary was buried, with only her full name and date of death. I had no idea how to start the search, so I asked around my colleagues. Thanks to everyone who suggested that I contact the local council. A quick search of their website found a section where you can search for burial locations online yourself. This did not yield any results, but led me to another section of the website that allowed me to send a query email.

A few days later a real human answered, and suggested that I email someone else. Two days later I was sent a reply with a picture of a map of the cemetery with a highlighted area within which the baby had been buried. I printed out the map and our counsellor rushed out to deliver the information package to the couple. Time was of the essence as our patient was deteriorating rapidly and was in danger of losing consciousness and clarity.

Two days later our patient died peacefully at home with her gathered family, her distress had settled down once she was told that Mary had been found. The bereaved husband’s were red and swollen, but he smiled when he told us that his wife knew where to find their long-lost baby and could pick her up on their way to heaven.