Palace of Care – Hold On

Photo by Hu Chen on Unsplash

We’d been trying to admit her for weeks, but she had not been keen. We had her on the admission list for a whole week but she said that she had to sort out something for her children and couldn’t come in. I thought that it might be an excuse, as a lot of people are still scared of hospice. Most people have not had anything to do with hospice but they may have some pre-conceived idea of what hospice might be. Often this is inaccurate, and can generate a lot of fear.

It took some convincing by the hospital palliative care team before she would finally agree to coming in to hospice. She was still nervous but her favourite cousin had promised that she would go in with her. They had grown up together and they were best friends, but this had been taken to a completely different level once the cancer diagnosis had been made five months ago. Something was wrong as she had lost a lot of weight, without trying to. Life had been busy for many years with her five children, and her partner could not always be counted upon. It was her cousin who had attended all the Oncology appointments with her. Her cousin had been there for all the chemotherapy sessions. Having her cousin accompany her to hospice was comforting and if there was anything scary, she would be there for her.

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Palace of Care – Father and Son

Photo by Vinicius “amnx” Amano on Unsplash

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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Bedside Lessons – 20 – Crossing the Line – Part 1

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I was working on the liaison psychiatry team in my final year of medical school. I went to meet a patient that had self-referred, which was unusual. Psych liaison provides psychiatric input for patients who also have medical issues that have brought them into hospital. I went with the nurse specialist to see the patient, an Englishman in his mid-thirties.

Work had brought him and his Latin American wife across the world. He was a nature documentary maker and had been based in the lower South Island filming the local wildlife. Just before Christmas he became unwell with a severe nosebleed, which required hospital intervention. Simple blood tests revealed grossly abnormal results. Acute Myelocytic Leukaemia (AM bloody helL) was the shocking diagnosis which destroyed their plans for Christmas and life in general. An urgent admission was arranged to our hospital’s Haematology department, which served the entire region. Harsh chemotherapy needed to be started otherwise our patient would’ve only had days left to live.

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Guest Post – Naomi’s Notes – Mamma Mia

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It was getting harder to manage working full time during the day and caring for my mother.  The routine was I would wash her in the morning and give her breakfast and her medication then leave her a drink in a thermos cup with something for morning tea.  

My sister would call in to see her before she went to work at 10 am. My other brothers and sisters were supposed to phone her during the day when I was at work.   I would come home for lunch, give her lunch I prepared the night before, give her medication and a drink and leave something for afternoon tea before heading back to work.  I finished at 5pm but sometimes couldn’t get away till 5.30pm as I worked at the District Court and sometimes the Court sat late.

The routine worked for a while but as she started to decline I noticed little things.   I would come home for lunch and her morning tea hadn’t been touched.  When I asked her why she hadn’t eaten the orange I left her, she was embarrassed and replied, “I tried and tried but I couldn’t peel it” and she couldn’t unscrew the lid of the drink.  I felt terrible that she wasn’t able to access it.  It coincided with her telling me she was lonely when I went to work, it was a long day for her.   I looked at her beautiful face and I knew she was not one to complain but this was important to her.    Something had to change. 

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Palliverse’s Greatest Hits from Oct 2014 – #getjakbak revisited – Part 6

Photo by Ave Calvar on Unsplash

Over the years I have noticed that when it comes to reunions of significant others that there can be a number of different outcomes. If someone has had to hang on, having reached the reunion might be akin to mission accomplished, and the person can deteriorate quickly after the meeting. Or else the person may receive a boost from the reunion and somehow it provides energy for them to carry on living, much longer than is to be expected.

The latter was the case with our patient, I knew that he was a strong man, with an unshakeable faith and strong willpower. I was surprised to learn from my Island contact that after the arduous journey our patient only stayed one night at the hospital, and was discharged the next day to his family’s home. What is it about the human spirit that can make it so resilient? The science can’t explain it, it is one of the mysteries of life. The importance of human connection, can keep you going, or bring you to a complete stop.

His prognosis had always been limited as he was very unwell throughout. The joy of reuniting with his siblings and their children really gave him a boost. 27 days he lasted before he died, which was impressive, and also fortunate as we could only provide him with 30 days’ worth of medications. He died just before he would’ve run out of his crucial medications.

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Bedside Lessons – 13. Waddya waiting for?

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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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Palace of Care – In his arms

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Photo by Mayur Gala on Unsplash

It had been a great game of football, they had managed to successfully complete a number of moves that they had been practising for weeks. He was proud of the fact that the ball was always safe, in his arms.

The post-match party was a happy and raucous affair, a swirl of colours and noise, but everything seemed to stop, when she walked into the room.

Their eyes met across the crowded space, everyone else became invisible and they instantly fell in love. Soon she was, in his arms.

Fast-forward 23 years to an admission into our family room. Again a swirl of colours and noise as they settled into the room with their seven children, and their children’s children.

Early on in their relationship they had reflected on their own upbringing, having being raised by their grandparents, they made a pact that they would raise their own kids themselves.

And they did so over the next 22 years which were filled with joy.

She had become unwell over the past year, needing many trips to clinics and hospital for many treatments and even more disappointments. Always supported by their family  who stayed strong around them.

It had taken a lot of convincing to allow Hospice into their lives – he was scared of them – but the fears were soon allayed by the visiting staff.

Barely three weeks ago she had organised a family trip up North, just them and their four youngest children. “She knew that her time was short, and that was her preparing me.”

During the weekend, he had shared, “Thank you for providing this large room for us, it has allowed me to be the husband again, and the father to my kids, we can be ourselves again.”

There were many visitors over the weekend and into the new week.

On the very last night the couple were together, peacefully in bed, surrounded by the love from all their kids sleeping on the floor around them.

Coming back from the bathroom on the final morning, held up in his arms, “I think it’s my time to go.”

Gently back to bed, still in his arms.

Feeling safe, surrounded by the best things in the world, their kids and grand-kids.

She leaned back, in his arms, and then quietly left the room.

“She was looking after us all, right until the very end, giving us the strength to carry on walking tall.”

I think therefore I am? – A definition of Grace

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http://www.flickr.com/photos/144232185@N03/30117339256″>PARMIGIANINO,1534-35 – Deux Canéphores se donnant la Main (Louvre INV6466)

In healthcare it is important to set clear boundaries in order to care for yourself and your patients in a sustainable fashion. In the practice of palliative care, boundary setting is even more important, as the therapeutic relationship can be very intense and intimate at times. We have to keep in mind that this relationship will likely end soon, with the death of our patient. It can be a difficult balancing act; using your humanity to make important connections with another human being; while at the same time keeping professional distance to protect the both of you.

That being said, it is inevitable that there will be some cases which will hit you harder than others. When a deeper connection has been made, you will feel the loss and grief much more strongly. Informal reflection with your team members and professional supervision have an important role to play in keeping us palliative care providers safe to continue doing the important job that we have to do. We need to remind ourselves that this is a job that not everyone in healthcare can handle. That those of us who chose to work in palliative care, owe it to ourselves and our patients to look after ourselves. We are a precious resource and if we do not take care of ourselves, we will deny our patients and their families the difference that we can make in their lives, and deaths.

After almost ten years of working exclusively in full-time palliative care practice I would like to share a case that reminded me of just how human I am, and how much value I obtain from professional supervision and from sharing with my team members.

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Palace of Care – Living every moment

Living every moment when you’re dying

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In New Zealand last week we celebrated Hospice Awareness Weak and to tell you the truth I’m not sure how impactful the week actually was. Continue reading

Palace of Care – Que sera, sera

Whatever will be, will be.

He tells me, with a tear in his eye, “She’s my sweetheart.”

She smiles weakly, and her eyes brighten.

He gently kisses her hand in a loving manner.

“No, I am ready.”

“Are you scared?”

“I think I’m dying.”

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