Palace of Care – Hospice Sounds

Photo by Dan Cook on Unsplash

They hadn’t had much to be happy about over the past year. A progressive disease, no longer curable given how far it had spread throughout the body. They were determined to continue their chemotherapy despite the demoralising side effects. Most people would’ve given up after two cycles let alone completing 12 cycles.

A strong-willed person with too much to live for. It was the uncertainty that troubled them the most. They knew death was coming and had tried their best to prepare for it. The loss of control troubled them deeply. They found the advance care planning handbook to be useful in covering the practicalities of this part of life. Funeral arrangements were pre-planned, their will was finalised.

They’d been offered an inpatient admission months ago but they were not ready for it.

“Not yet doctor.”

Some months later they’d become more unwell, wracked with pain and distress in the hospital. They were glad to be admitted to our inpatient unit, and we worked with them to bring their pain under control and they were able to return home.

Over the next month, the rate of deterioration worsened. As per their request, we tried to keep them at home with their partner and their children. They came for an outpatient clinic appointment and ended up needing to stay in as an inpatient.

“How long have I got left?”

“I’m not sure, could be as short as weeks. Could be longer, most people don’t have the level of inner strength you do.”

Once comfortable they were able to relax and even smile. They were on the receiving end of input from the local Dad Joke specialist. Laughter was heard coming out of the room that last week had only witnessed tears. Their laughter was one of my best achievements of the past week.

Palace of Care – Family Reunion

Photo by Laura Fuhrman on Unsplash

His sister and nieces pushed him in via wheelchair. His skin was a yellowish grey colour. According to his family it had been a huge change from when he had arrived in town last week. Then he had been well and was able to dance with his nieces. Now he couldn’t walk without assistance as he was too weak and fatigued.

He’d been diagnosed with end-stage cancer only months ago, and arrangements had been made for him to go into residential care. As he deteriorated, his elder sister and her daughters wanted to look after him. They picked him up from his residential care facility and moved him into his elder sister’s house in Auckland.

Over the course of his first week with his family he became more unwell. Nerve related pain from his cancer worsened and led to his hospice admission. His medications were adjusted to make him more comfortable. The family arranged for a reunion. His elder sister came down to see him.

All he wanted to do was sleep. He had no appetite.

He enjoyed the family reunion, it had been years since he and his siblings had been in the same room together.

On his final day he became comatose. His older brothers came to see him in the morning, after travelling two hours by car. They talked about when they had all been young. I explained that he was critically unwell and could die at anytime.

His sisters came back to see him, and within minutes he had taken his final breath.

Rest in peace family man.

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.

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*Updated* 13/05/16 – Palace of Care/I think therefore I am?: #pallanz Mercy mission #getjnrbak

 

 

Hi everyone,

Situation:  

Poppa is my patient. Grandson “Junior” in Sydney unable to fly back to Auckland because of eye injury. Tearful conversation via internet this morning. Two men heartbroken at the thought that they will never be able to hug each other again.

Background:

Poppa very unwell and worsening rapidly, admitted this morning for hospice care.

Family have tried Cruise lines, Courier companies, travel agents to no avail so far.

Assessment:

Re-uniting Poppa with Junior would provide the greatest comfort.

Recommendation:

Spread the word through all available palliative care networks to see if we can #getjnrbak!

It might have to be via sea because of Junior’s eye injury.

Thanks in advance for your help.

Let’s see if we can provide another example of a real world translation from our Palliative Care virtual community of practice.

Cheers,

James


UPDATE 11/05/16 1700 NZT:

Junior’s medical details were obtained with his permission.

Sean Coleman from Air Ambulance NZ has been very helpful, again – Shipping companies contacted – minimum of 4 day trip by ship.

Freighter Travel company contacted.

Suggestions:  Make-a-Wish foundation could be approached?

Anyone know any super-rich people with a spare super-yacht?


UPDATE 12/05/16 1100 NZT:

Cruise ship company contacted.

No commercial flight options available. Low cabin pressure private jet would cost at least $30000+ one way.

The search continues, people have been leaving suggestions in the comments section, thanks.


UPDATE 12/05/16 1700 NZT:

I made contact with P&O Cruises and they did not have anything available this year.

Junior’s family are also exploring freighter ship options apparently there is a Brisbane to Auckland ship sailing next week. Hamish from Freighter Travel also told me about the same possibility, he was very helpful.

Poppa remains very unwell.

Fingers crossed.


UPDATE 13/05/16 1400 NZT:

No news on the travel front, but Poppa woke up and was comfortable today!

Fingers double crossed that its the start of a trend.