Palace of Care – Fade to Yellow

Photo by Tristan Gassert on Unsplash

In the last days of her life, she was visited by close friends and family members. She conversed with them and still shared her sense of humour with them. To some of her oldest friends, she said her final goodbyes.

One of her best friends asked me if it would be okay for her to have some champagne. I said I would allow it but she wasn’t allowed to drink alone. He went off to buy some. It had to be Tattinger Champagne, nothing else would do. I said she could eat whatever she felt like. A question was asked about cigarettes and again I had no objections. She was dying and she could do whatever she liked that would bring her some pleasure and normality.

“How can you tell that time is short?”

“She’s been deteriorating every day. She has become unclear in her thinking and is needing to sleep more. These are all signs that death is coming soon.”

“How long do you think she has got left?”

“A few days ago we thought she might only have days to weeks left to live. Now I think she only has hours to days left. She could die at any time.”

“Who do you think can come and visit her.”

“I’d recommend only immediate family only and her closest friends. Whomever she wants to see.”

“Will you let our brother know?”

“Sure, we’ll make contact with him.”

The next day four members of the hospice clinical team painted their nails yellow and orange to match their patient’s fingernails. When she woke up she was shown the photos and she was able to enjoy the yellow-clad doctor’s finger and toenails which were all highlighted in bright yellow. The nails gave her and the family something to smile and laugh about in between the tears.

The next morning the Polish team, who were not from Poland, were about to go into the room when the nurse came out to ask the family to come in urgently.

“She’s about to take her last breath.”

The clinicians made way for the family.

She died with the voices of her family telling her how much they loved her.

Palace of Care – Yella Fella

I’ve never had my fingernails painted before. Today was full of new experiences. I didn’t plan the beauty session well. While my fingernails were drying, I took off my shoes and socks. I then painted my toenails. Two coats were applied as I tried my best to colour within the lines. I hadn’t brought any open-toed footwear and I didn’t want to walk around barefoot in our inpatient unit. I thought up an inelegant solution involving the desk chair on wheels I was seated on. If I planted my feet on the lower supports and then if I shifted my body forward I could slowly propel myself at a top speed of 1 cm per second. This could make for a long morning ward round.

My colleague took matters into his own hands and wheeled me down the corridor to see our patients. I wore my yellow scrubs with a yellow mask. My finger and toenails were painted yellow. If I was a soft drink I would be called Mello Yello. If I was a dog I would respond to Ol’ Yeller. My colleagues had joined in the fun and had painted their fingernails mostly yellow as well. Another colleague had worn yellow shoes. All of us travelling down the corridor briskly reminded me of the Yellow River. Our patient who had barely been conscious the other day expressed concern as to what our spouses would think of our coloured nails.

We toured the ward in a formation reminiscent of a ribbon around an old oak tree. As we reached the end of our jaundiced journey we knocked on the door of our inspirational patient’s room. Her family members were impressed by the shiny brightness of our polished nails. Smiles and laughter made their way through the room. Smartphone cameras clicked and the noise did not disturb the sleep of our patient at all. She was fast asleep and we were not able to wake her. The family took photos to show her later.

I was called back in later in the morning once our patient had woken up. As my toenails had finally dried I walked over myself. I showed off my yellow banana socks as I took them off to reveal my matching toe and fingernails to my patient. She smiled and laughed. Mission Accomplished.

She received some visitors from her workplace later in the day. I was told that her male colleagues had also painted their nails in solidarity with our patient and were going back to the office to solidify the support campaign.

Better stock up on the yellow nail polish, as there is about to be a worldwide shortage.

Palace of Care – Yellow Fever

Photo by Vanessa Bucceri on Unsplash

She had told her family about my promise to paint my fingernails to match hers. She had painted her nails to match my bright yellow scrubs. When I examined her fingers the nails were of many different colours. Some were yellow, others were black, pink, and red, all of them nicely painted. She showed her nails and she made us all laugh. This included both staff and her own family. I joked about needing help with nail-painting supplies, as I didn’t usually paint my nails. If I was going to do so then I might as well do my toenails. I shared with our audience that my yellow nails would go down well at the Brazilian Jiu-Jitsu club I belong to. We all shared some more laughs before we came to the serious part of the family meeting.

I provided a recap of what had happened since our patient was admitted. She arrived with terrible pain, nausea and constipation. These symptoms were controlled with adjustments in medication doses over the first week. Well-controlled pain came at a cost. Our patient became confused at times. We had to make dose changes but we wanted to persevere and bring down the pain levels as much as possible.

Overall the pain and nausea improved but the confusion episodes worsened. We tried to prevent further episodes to no avail. I talked about the ongoing changes in her situation. Old problems became worse while new problems developed. We were trying to play catch up with a disease process that wouldn’t stay still. She had been having ups and downs due to medication effects but mostly due to worsening cancer.

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Palace of Care – Roller-Coaster Ride

Photo by Itai Aarons on Unsplash

He had loved his last job and had done well until the stroke. A bolt of lightning had struck him down and rendered one side of his body paralysed. His mind was still intact and his will was strong which allowed him to recover well over the next months. He needed to walk with walking aids and had severe fatigue but he adjusted to his debilitated life. Speaking and writing were still effective forms of communication. Life was different but the strongest organ in his body still functioned well – his brain worked as well as ever.

He had lost the use of his legs earlier in the year. Nothing out of the ordinary had happened before they stopped working. It was thought to be due to a late side-effect of the life-saving radiotherapy he had received decades ago, which had helped to cure the cancer that almost killed him. He hadn’t been out of bed since then without great difficulty. He could not move his legs but the sensory nerves were intact. He was able to cope with the further disability until the pains started. It was a cruel combination, his legs were unable to move but were able to feel nerve-related pain. By the time I visited him at home the pain had been worsening over the past weeks. His medications which included nerve pain agents were not working. The strong opioids we had advised him to have were not controlling his pain but clouded his brain.

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Palace of Care – What She Said at Lunch

Photo by Hello I’m Nik on Unsplash

Life over the past two years had become chaotic and uncertain, but she was certain that the gathered guests were there for a good cause. She thanked the crowd for spending their time at the hospice fundraising lunch. In New Zealand there are over 27000 registered charities and on this day hundreds of people had chosen to be there to raise money for the hospice. She thanked the sponsors and donors for their generous gifts and support. She told them that hospice couldn’t do what they do without their help.

She didn’t know what hospice was about until three years after her mother’s death. She cradled her mother in her arms as she became heavier and heavier, and as she took her last breaths. Although she was flooded with deep sadness, relief was the dominant feeling. Relief from her mother not suffering any longer. The night before her mother died she decided to chase her dream to become an Olympian. On arrival at the hospice they could feel the care and love surrounding them. When her mother was transferred to the hospice she was able to sleep in a La-Z-Boy instead of the hard-tiled floor of the hospital.

Yesterday morning she thought she would not survive long enough to speak at the hospice fundraising event this afternoon. She had to bring her oxygen bottle to be able to attend. She shared with the audience her own experiences of hospice, and how they had helped her make life more bearable. She talked about the friends she had made at the hospice’s living well centre. There was one friend in particular who she missed the most. The final contact they had with each other was when her friend was in the hospital. The hospice group of friends had sent their friend best wishes via a group photo, which was much appreciated. Unfortunately, their friend died the next day. A reminder of how precarious life is when you are dying.

Palace of Care – True Colours

Photo by Rae Tian on Unsplash

I chose yellow as my favourite colour when I was five years old. It was the colour I used for the suns I drew. A bright colour that evoked a feeling of warmth. My kids bought me a set of yellow scrubs for Father’s Day. Really bright yellow scrubs. When I am wearing them at work most people will respond in some way.

The yellow scrubs seem to provide a lot of people with an almost religious experience. Many people after seeing them have said, “Oh my god.” They also cover their eyes with their arms and turn their faces away whilst grimacing. Other people have requested a warning before I enter rooms in order for them to prepare sunglasses or welding masks.

Some people who see the scrubs don’t like them at all. A small number of people have said they like them including a number of patients and their family members. For one patient it is their favourite colour. I have been particularly worried about them and I have been wearing them at least once or twice a week. I am worried my patient will die soon and I wanted to wear the yellow outfit as seeing it previously had made them smile and laugh. Especially the first time I wore the scrubs when the patient changed into a yellow outfit. We both also had colour co-ordinated socks. A colour co-ordinated coffin had already been purchased.

Yellow is the colour of many of the flowers around our hospice. The colour of the medication cards is also yellow. The patient with the severe itch from jaundice had yellow skin, and the whites of their eyes had turned yellow too.

Another patient has taken a liking to my bright yellow scrubs and requested me to wear them more often. The last time I saw this second patient they had painted their fingernails in a matching shade of yellow.

Hmm, what colour will I wear tomorrow?

Palace of Care – Dehumidifier

Photo by Laårk Boshoff on Unsplash

We didn’t know what was keeping him going. He hadn’t eaten anything for ten days. No drinks for days. Somehow he was still producing urine. Where did it come from? His son speculated that he was drawing the water out of the room’s atmosphere. “Dad’s become a dehumidifier.”

He had outlived many doctors’ prognostication attempts, including my own. “Anyone else would’ve died a week ago. He’s not anyone else he’s stronger than most people.” Somehow he had stayed alive with his metastatic cancer for four years. He had received multiple treatments over the years. They had kept him alive, but the last three months had been a struggle. He had lost 20kg over the years of illness. 10kg had been lost in the past three months because of severe nausea.

The cancer was cruel as it melted his body away it took away his appetite. His once mighty frame was reduced to skin and bone. He still wasn’t used to his reflection, it had continued to change. Despite all of the weight loss, one thing he never lost was his sense of humour.

In life he had always done things in his way, at his own pace and it was no different in his death. The family maintained their long vigil, and he remained mostly asleep but responsive when he was awake. If our staff found evidence of his imminent death we would inform them. We also warned them that sometimes people don’t want anyone to be around at the point of death and that he might slip away when an opportunity presented itself.

He was kept calm and comfortable. His family were supported and our patient died three days later.

Palace of Care – Existence

Photo by Marija Zaric on Unsplash

Yes, it’s become a struggle, every day.

I get halfway through making lunch then I have to rest. When I finish making it I have to rest again before eating.

Heh, my only entertainment is going to the lavvy. And that’s no fun.

Every time I move I need to go to the toilet. Nothing much comes out and it’s exhausting.

Sometimes I make a mess and that’s even more stuff to clean up. I don’t have the energy.

COVID. I thought it would be the end of me. I was almost disappointed when I recovered.

Don’t get me wrong, if I wasn’t sick like this I’d be happy to continue living, but I have these illnesses. Nothing is going away, it’s only going to get worse.

I don’t want to be here any longer than necessary. This is existence. Not a life.

Blood transfusion? What’s the point? So I can live longer to get worse?

No, I wouldn’t want you to treat a chest infection. Yes, Let nature take its course.

No resuscitation.

Yes, you do understand me. Thank you.

You listen to what I want, nice for a change.

Palliative care for patients with Parkinson’s disease

I often work in a palliative consultation service, and we are seeing more patients with chronic neurological conditions like Parkinson’s Disease. Parkinson’s disease is a progressive neurological disease that causes tremors (shaking), slowness of movement and stiffness. It can cause changes in facial expression so that people look expressionless. and changes in handwriting and speech too. We have to be careful not to prescribe medications that can make things worse, like for example, we currently give Metoclopramide (maxolon or pramin) for nausea but we need to avoid this medication in a person with Parkinson’s Disease.

Tanja Bahro and the team from the Southern Metropolitan Palliative Care Consortium in Melbourne Australia conducted a survey and found that palliative care clinicians wanted to know more about caring for patients with PD. Not being able to find a guide, they wrote their own! Please email Tanja for a copy tanja.bahro@smrpcc.org.au. They’ve had great feedback from users.

Tanja, tell us about your resource:

“Parkinson’s Disease – Issues for the Palliative Care Team” is a practical resource for people working in specialist palliative care, who are caring for people who are dying both with and from Parkinson’s Disease (PD). It was developed by our project officer Lee-Anne Henley with the great help of Dr Jim Howe, a very experienced neurologist in the area of progressive neurological conditions and palliative care, as well as Robert Wojnar, a pharmacist at Cabrini with a special interest in PD. The resource explains the main issues for people with PD at end-of-life and describes considerations and solutions. It also includes a practical care plan on which we have received some excellent feedback.

What gap did you see that lead you to develop it?

Because of the long trajectory, it is difficult for a health care team to know when people with PD should be referred to palliative care. A lot of PD patients also enter a nursing home and then at times lose contact with their neurologist. This can result in people not being referred to palliative care when appropriate and missing out on a multidisciplinary approach to care when the neurologist is no longer involved. Medication management can be difficult with PD patients, as some medications need to be continued to keep the patient comfortable but might also interact with medications commonly used for palliative care. We undertook a survey of palliative care staff and found that people wanted to know more, so we tried to find clinical guidelines or similar resources. When we couldn’t find anything we thought we’d better develop something ourselves!

How will it help patients and clinicians?

We hope to achieve greater awareness of appropriate referral to palliative care and we’re working on that. With the resource, we anticipate that palliative care clinicians will liaise more with the neurologist— they now have a simple and comprehensive guide to the main issues for people with PD and can therefore act quicker and prevent some of the pitfalls. Our next project is to adapt the resource for the residential aged care sector, but that’s more complex because we must take into account that the clinicians there might not have specialist palliative care knowledge.

How can people get the resource?

We want to make sure that we distribute the resource only to clinicians with experience in palliative care, so we haven’t put it on our website, but pc clinicians can just contact me on tanja.bahro@smrpcc.org.au and I’ll email it to them very quickly.

Palace of Care – Requested Letter

Photo by Álvaro Serrano on Unsplash

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