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.

Guest Post – Naomi’s Notes – Appreciation

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They were a big Samoan family who supported their mother’s decision to not undergo dialysis for her kidneys. She had no appetite for her favourite foods and the level of care was entering into an unknown realm.   In the distant past the caregiver had done some volunteer work for Hospice and thought this might be the answer to the problem.  

A family meeting was called and Hospice intervention was discussed.  The siblings were unanimous in their decision.  No Hospice, they viewed it as a betrayal and a failure on their part that their mother would be under the care of strangers instead of within her own family.  The siblings were having difficulty accepting the stage that their mother was at.   

Christmas came and she was very ill, she tried to make an effort to enjoy the day for her children.  Her grandchildren carried her outside into the Marquee for Christmas dinner. 

She didn’t want to spoil the day for her children.  They took her back to bed after a couple of hours.   She was too exhausted to sit up any longer.

Two days later she was in hospital, unable to communicate.  She sat and stared into space.  In the morning she woke up and pleaded to go home.  

Without consulting anyone her caregiver made the decision to request palliative care through Hospice.  By the time the discharge from hospital was completed, the hospital bed had already been delivered to her home.  Pain relief had been organised to ensure there was no breakthrough pain.

The family  had been standing alone with care of their mother and initially viewed Hospice as a  “us or them” situation. The siblings  quickly realised it was more  of a “we are on the same team” situation with a wonderful wrap around service.

The experienced nurses provided kind compassionate loving care. The family wanted  the best care for their mother and thanks to Hospice they got it.

Palace of Care – Smiley

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I had finally completed my examinations and could start my specialist training. I had been drawn to both Medical Oncology and Palliative Medicine from a relatively young age and I could try working in each speciality for six months before deciding which one I wanted to pursue in the long-term.

One morning during my six months working in Medical Oncology I was in clinic with an Oncologist who I considered to be my mentor. Standard practice was for me to see the patient first, then present the case to my mentor, who would then come and see the patient.

A big friendly smile in the form of a slim 26 year old man walked in with his pregnant partner of similar age. They were accompanied by his cousin who was in his 40s. Smiley’s story was a sad one and had begun eight weeks prior to his clinic appointment. Life was good, he had a steady income from a job he enjoyed. In the weekends he loved playing rugby in the local team. He and his partner had been together for five years and were going to take the next step. Baby was on the way, and was due in five months’ time. Everything was going well until it wasn’t.

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Palace of Care – Race Against Time

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I gently knocked on the door and then poked my head around the corner. I paused briefly before walking in and saw him sitting there holding his wife’s hand. He bent down and talked gently into her ear. They had only been married for 62 years, and had been together as a couple much longer. She had looked after him well according to his daughter, he had always been treated like a king. In recent years Dementia had meant that he had needed more care than ever. His queen kept him in line but as her health deteriorated she could not keep up with him.

She had lived with her daughter, son-in-law and had practically raised their children. The grandchildren were emotionally close to her and had spent six to eight weeks with her over the Christmas break before heading back to their overseas-based lives. Since her cancer diagnosis seven months ago, she had been cared for by her youngest daughter. She had to keep a close eye on her husband, as he was a flight risk. At times he didn’t even recognise her as she had recently lost a lot of weight. He would ask, “Who is the nice old lady?” With a few prompts he could be reorientated to the love of his life.

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Palace of Care – Two of a kind

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He was never alone when he was young, his sister would always be with him. They started off their friendship in the womb but didn’t really see each other for the first time until they came out into the light. Ah, that’s what you look like, quite similar to me, but different. I’m the oldest out of us two, even if it is only five minutes between us. The eldest is entitled to greater respect. Their siblings suddenly had two more siblings to make up the family, a little boy and a little girl.

They went to the same schools all the way through primary, intermediate and high schools, and it was only in university that their paths diverged. Ending up in different careers and then meeting their partners, always maintaining the bond of their twin-ship even across thousands of miles of ocean. The next generation would also have multiple births, he and his wife had a set of twins but unfortunately their little youngest did not survive. One of their biggest tragedies, the death of a child, so against the natural order of life. Life had to move on, they had the rest of their children to bring up. Life was busy with work, family was always emphasised as being the most important.

Children grow up so fast, and theirs became useful additions to society, good people that he had guided to adulthood. He was proud of them all, and then the grandchildren arrived to make a good life even better. Lovely young kids that enjoyed hanging out with Grandpa and Grandma, also lovely that at the end of the day they could be given back to their parents. Grandparents are there to provide good fun, but not to be the unpaid caregivers was their policy. It had worked so far. Their overseas daughter video-called them, they hadn’t seen her in person due to the effects of Covid over the past two years. She couldn’t contain her smile, she glowed when they talked to her. “Mum, dad I’m pregnant, it’s going to be twins!” Continuing the family tradition into the next generation. Things were really good.

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Guest Post – Naomi’s Notes – Precious

Part 1

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At school two little six year olds had an argument.  They were both very upset when I called them over to talk to me.

I asked the first one what the problem was.

Pointing at the other girl with a quivering finger she said, amongst sobs, “she called me a F F F FAT BANANA. Why are you laughing?”

“Well,” I said, “are you a banana?”

“No.”

“Are you fat?”

“No.”

“Is it true?”

“No?”

Softly I said to her, “so darling if it were true it would be serious, but it’s not true so it’s funny isn’t it?”

I asked the other girl, “why did you say that?”

“I wanted her to be my friend but she didn’t want to,  so I called her a FAT BANANA…  Naomi,  I really love bananas.”

I smiled and said to her, “darling if you want someone to be your friend, that’s not the way to do it. First you  have to  help them if they need help, be kind to them and laugh at their jokes.   Then they will want to be your friend because they can see that you are a kind and caring  person.” 

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Palace of Care – Opportunity Cost

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In my misspent youth I studied Economics during high school and into my first year of university. Opportunity Cost is the cost that you incur when you make a choice. Because you have chosen A, you miss out on B, or vice versa.

The New Zealand school ball is an important event in a young lady’s life it is a coming of age event. The proud parents will see their daughter off for her first school ball. This can be a big deal especially for the father. The ball was scheduled to take place in a week’s time. Our patient had his blood tests done as he was looking pale, was fatigued, and slightly short of breath. Symptoms and signs of anaemia, low red blood cells in his body. His counts were dangerously low, and if we didn’t do something about it, he was at risk of dying before the day of the school ball. He really wanted to be there for his daughter, it was his only chance at providing the whole family with this milestone memory. He agreed to our plan of transfusion, a top up to give him the best chance of being there for his daughter.

In the days after the transfusion he was able to walk further without losing his breath, his thinking had sharpened, almost as good as normal. Looking in the mirror his skin tone no longer reminded him of the vampires from the Twilight series that his daughter and her friends all loved. He would make it to the ball, and the whole family was excited about it again. They could proceed with the pre-ball party at home, he would go home for a few hours of leave. A nice dose of normal family life to break up his cancer story if only for a brief respite.

After the weekend the pre-ball photos were shared with us, and they were lovely. The only clue to his illness was that Dad was thin, and looked tired in the photos, otherwise a beautiful New Zealand family celebrating a special night together at home. A snapshot frozen in time, if only the image would stay like that, no changes occurring, no one deteriorating, no brightness fading from their eyes. But that is still life, real life is about the changes that occur with each passing minute, hour, day, week.

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Palace of Care – No Surprises

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Is it the medication making him drowsy, there’s been a big increase in the medications since yesterday, I want them cut back down again.

I’m really worried about your Dad. I don’t think it’s just the medications changes causing him to change. His pain and nausea have worsened a lot over the past three days. It’s a shame as he was doing so well the other day.

It’s not right, he should be getting better, not going backwards. You know he was an alcoholic, I’m worried that he’s become addicted to the pain killers. He hates being confused, that’s what he was like when he drank, he really doesn’t want to go there.

I don’t think that addiction is the problem here, his pain and nausea are worse, I think it’s the cancer causing this. If I decreased his medications now, he would become much more uncomfortable. I don’t want him to suffer.

What about his radiotherapy appointment, that will give him a boost right?

He’ll get the side effect right away, but the benefit might not occur for some weeks. I’m really not sure if he has weeks left to live. I’m worried that if he keeps on deteriorating at the same rate, that he might only have days left to live. We usually say if you are changing over months, you might have months left, same applies to weeks and days.

Really, you think he might only have days left?

Yeah, so I’m not sure that he will be well enough for radiotherapy. I know he wanted it and so do all of you, but I’m not sure that he will be well enough to make the appointment.

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Palace of Care – Father and Son

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Covid 19 the gift that keeps on giving. Why does it have to be so generous? It has affected everyone and everything in the world, and the hospice is no different. We have had to impose visiting restrictions on our patients and their families in order to limit spread of the virus. Covid restrictions and quarantine requirements have led to some of the most upsetting situations that I have witnessed during my career.

When someone is dying, it is natural to want to be with them, to support them in their moment of need. They were there for you when you needed them the most, and you want to reciprocate if you can. Even before Covid it could be difficult to travel back home thousands of miles, trying your best to make it before your loved one dies. During Covid it has been that much worse.

My patient came in because of severe pain, a common reason for admission for many of my patients. His wife accompanied him, and they both looked exhausted. His pain had been poorly controlled over the weekend, and the nights had been especially long. The medications did not seem to work for long, they gave him a brief period of respite before the pain would come right back. It was almost cruel to be granted that small packet of relief, and then it would be roughly dragged out of his grasp again. This cycle repeated itself over what felt like a long two days. By Monday they needed help and he was admitted into hospice.

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Palace of Care – Welcome to Hospice – Part 2

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She had spent her whole life looking like her sister. They were always compared to each other. The older one is taller, the younger one can sing better, the older one can run faster, the younger one is better at Math. Despite all of the comparisons the two sisters had always gotten along fine. Their relationship had started nine months before they were born, they hadn’t just been room-mates growing up, they had actually been womb-mates right from the start. Identical twins who looked the same on the outside but were actually different people. Their life paths had followed each other closely before wildly diverging at the age of 26. The older one became unwell two years ago, the younger one carried on with her life.

The family had been scared of hospice, they didn’t really know what it was all about, but most people associated it with death and dying. Not something that is usually discussed in the Island culture. They resisted the hospital palliative care nurse’s attempts to send them over. What changed the older one’s mind was another patient on the same ward. A Maori lady who had been in hospice before. She had told the family what it was like, that it wasn’t a scary place at all, that on a previous admission, that they had been kind and were willing to do things in the traditional way. This lady was actually going to be heading over to the hospice that afternoon. She convinced the older one and the family that going to hospice to control symptoms would be a good thing.

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