Palace of Care – Requested Letter

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This was a first for me in my 23 year medical career. My patient’s family requested we write a letter to be read out at the funeral.

To our dear patient and their lovely family,

Thank you for allowing us the privilege of looking after you.

We know to start with you were scared of hospice and were not keen to be under our care.

You changed your mind once you met us. Our whole team enjoyed getting to know you and your caring family.

We are glad we could help you feel more comfortable, as we could see you had suffered a lot, as had your family who witnessed your suffering.

Your family had looked after you so well at home and that’s why you were able to make it to your 80th birthday. It was a testament to the loving care they provided to you.

Thank you for allowing us to look after you in your final days.

You were so unwell but we were so glad to share smiles and laughter with you and your family during your time in our inpatient unit.

Your friends and family will miss talking with you and hearing you sing, but everyone is glad you do not have to suffer any longer.

It was our pleasure to look after you and your family. That’s why hospice is here, to look after people just like you and me in the community.

We wish you and your family a fond farewell.

Kind regards,

Dr James Jap on behalf of the Hospice Team

Palace of Care – Doting Children

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“The Oncologist told us they would only live for another three weeks.”

“When was that?”

“Three months ago.”

“The good care you and your sibling provided kept them going. Now they are tired, and their body can’t handle the cancer anymore.”

“We are at breaking point ourselves. We can’t sleep well, and the tears keep coming.”

“You are both very close to your parent, you have looked after them well.”

“The last months had been hard, but the last weeks have been terrible. We have had to help with everything.”

“They are exhausted. Yesterday they told me they thought their time was short, that death would happen soon. I agree with them. We will get them through this, and get you and your sibling through this too.”

“The phlegm is causing them distress, and the breathing. They couldn’t relax last night. The medications helped briefly but then they couldn’t lie still. I kept awake too. They keep on asking for water, but it will go into the lung. Their swallowing is getting worse.”

“If it will make them feel better they can have some water. It won’t make things much worse but might bring them some comfort. If they developed an infection I wouldn’t treat it, as it might be gentler to die of the infection rather than dying of cancer. We’ll change the medications to make them more comfortable.”

“Please do, make them comfortable. Too much suffering already. They were always proud of their appearance but in the last weeks, no energy to do anything.”

“They’ve hated not being able to do what they want?”

“Yes, they even asked about assisted dying. They’ve always been so independent, not being able to do anything for themselves has been awful.”

“Natural death is going to happen soon, they wouldn’t make it through the assisted dying assessment process. They’re likely going to fall asleep soon. We’ll keep them comfortable.”

“Thank you doctor, can we stay here in the hospice.”

“Of course, you all need to stay here, we’ll look after you all.”

Palace of Care – Respect

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The first clinical task of the morning was to take care of the patient who had died overnight. The family had been holding their vigil for the previous days. There had always been someone there at all times. They didn’t want our patient to be alone. Having the family staying had helped to make our patient more comfortable.

The patient had died three hours ago. Their skin was cold to touch. Pulses were absent. There were no heart or breath sounds during one minute of listening. The pupils did not react to light. Confirmation of death would be followed by certification of the death.

Cause of death was recorded on the death certificate, in as simple terms as possible. Our patient had died of metastatic cancer.

A letter was written to the general practitioner as we didn’t want there to be any surprises.

The dead person needed to be treated with as much respect as the living.

Their family needed to finish their vigil, and to move on.

The funeral director was called and they came to collect the body.

Rest in peace.

Guest Post – Naomi’s Notes – Making Friends

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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 – I’ve got a question Doc

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I need to ask you a question about Dad.

Sure, go for it.

You know that Dad missed my wedding last weekend because he was too unwell?

Yeah.

Well, we had planned to have our honeymoon right after the wedding. We’re supposed to take off tomorrow.

How long will you be away for?

Five days, we are due back Wednesday. I’m not sure what to do.

I’m worried about your Dad, and I’m unsure if he will still be alive on Wednesday.

I can postpone my honeymoon, my wife and I can go at some other time, but this is my last chance to be with my Dad.

You’ve made the right choice, we’re going to get your Dad through this and the rest of your family too.

Thanks Doc.

Hey that’s what we’re here for, please take care.

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.

Guest Post – Naomi’s Notes – Grelly

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She called him Grelly when she was young because she couldn’t say Grandad.

He used to pick her up every day from Kindy.  Always the same routine when she got to her Mama’s house. She would sit next to Grelly and he would let her dunk her biscuits into his cup of tea.  He didn’t mind if her biscuit fell in.

She entertained them by reciting the poems and songs she had learned.  She loved it when they joined in and sang with her.  Grelly would let her be the boss of the TV remote and watch her programmes with her.   She didn’t mind that he didn’t know the words to Spongebob Squarepants because he made up for it by dancing with her when Bananas in Pyjamas came on.   When she was sick he would phone her and tell her he and Mama were missing her. 

When he became sick, she would rush in to see to see him. She would kiss them both and show them her drawings and tell him what she had done at Kindy.

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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 – 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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