Tag Archives: trust

Palace of Care – Singing Together

Posted on by
Reply
Photo by Haley Rivera on Unsplash

His grandmother had never learnt English, and all conversations at home were in the indigenous language. At home, he also learnt another language, the language of song. He was one of the guitar players and could sing traditional songs in their language. It was important to pass on his culture and he became a teacher, passing on his knowledge to the next generations. His ethos was full integration, two cultures living together in harmony. That’s how he raised his children, and to provide for them, he moved overseas in pursuit of a better income.

He missed his home and he craved being able to talk in his grandmother tongue. He would visit his cousins as often as he could. Grandmother’s rules applied and only their native language would be spoken in their home. He had to translate for his wife to understand the jokes and conversations. His family ended up in both countries, and during any reunion, the guitars would come out and the favourite songs would be sung together.

The songs kept him going during the first cancer. The treatments were rough, but he completed them, and they worked. Things were different with the second bout of cancer. Nothing went well. The cruellest thing of all was the cancer’s effect on his swallowing and voice. Two of the things he loved the most were taken away from him. He couldn’t eat his favourite foods, and he couldn’t sing his favourite songs. More and more bad news from the doctors. They told him time was short, that there were no treatments left. He told them he wanted to go home, that he wanted to be with his family for the end of his life. The team wasn’t sure if he was well enough to make the trip but prepared for it anyway.

He couldn’t sleep the night before the flight home, he was too excited. He didn’t sleep on the plane. There were various delays which meant he didn’t arrive at the hospice until late evening. He was pleasantly surprised by the staff greeting him in his language. The family visited and they celebrated his safe return. He was exhausted but the thrill of being together with his family in their home country kept him awake into the early hours of the next morning.

He met the rest of the medical team the next day, and they used more words from his language. They invited him to their singing practice scheduled for the following morning at 9.15 am. They all looked surprised when he turned up sitting in his wheelchair. The assembled staff was like a United Nations assembly. Though they were all of different ethnic origins to him, they were singing songs in his language. His family joined in the singing, and then he gave his critique. “A+ for effort, just need more practice with some of the songs. It’d be better with a guitar, I’ll get my daughter to play next time.”

They made him comfortable and kept things as simple as possible. He went home to his family after joining the following week’s singing practice, this time accompanied by guitar playing. The hospice held his bed for longer than usual, but his family looked after him well and he didn’t need to go back. Generations of family and old friends visited him with their music and laughter.

The pain worsened, and he was worried that he was about to die. He wanted to go back to the hospice, he trusted that they would make him more comfortable. His family attended the weekly singing practice and were encouraged to play their guitar and sing even more. Beautiful harmonies were heard from his room in the afternoon. His family surrounded him with love and the last thing he ever heard was the harmony of them singing to him, “The Lord’s Prayer.”

Palace of Care – Phone a Friend

Posted on by
1
Photo by Dustin Belt on Unsplash

I was asked by a friend of our hospice to phone their cousin. This was because the cousin knew their favourite cousin had a long association with my hospice. The cousin’s friend of over five decades had always been unwell. They had inherited a genetic issue which led to lung damage from a young age, which led to chronic lung infection and scarring. A life lived in between many hospital admissions. The lungs had an unwelcome guest in the form of smelly bacteria, which had worsened already impaired breathing. As if there wasn’t enough on their plate along came cancer. The accumulation of all of the above resulted in worsened quality of life and increased struggles with activities of daily living. There was only so much one person could tolerate. A conversation about assisted dying was had with their family doctor as the law had allowed for this as a legal option for end-of-life care. The doctor assessed their patient as eligible. The second assessor had a different opinion. Request denied.

The patient was upset and didn’t know what to do. They phoned a friend to discuss this. The friend didn’t know what to do and phoned their favourite cousin. The cousin didn’t know what to do and phoned a doctor they knew at the hospice that would be willing to discuss assisted dying – still a taboo subject amongst many palliative care people in Aotearoa/New Zealand despite it becoming legal from November 2021.

I listened to the story and without full clinical details, I could only offer general advice for someone from outside of our catchment area. The person sounded unwell to me and might have less than six months left to live. They also sounded as if they needed more input from the local hospice service. The cousin said the hospice had sent a nice volunteer who was of the same ethnic origin to provide some company for the unwell friend. It was a nice thought but the hospice hadn’t checked a crucial detail. The volunteer’s English was limited, but they spoke the language of their ethnicity well. The friend looked similar to the volunteer in terms of ethnic features but had been born in New Zealand, only spoke English, and did not speak the ethnic language at all. Smiles and sign language could only go so far. It’s always better to ask rather than assume. Books and covers.

I suggested the cousin could encourage their friend to ask for more help from the local hospice as people in similar situations were being helped by hospices all around our country. I suggested that the patient could contact the assisted dying service to explain the outcome of the assessments made as the patient sounded as if they might fulfil the eligibility criteria. The cousin thanked me and said they would pass on my suggestions to their unwell friend. I felt it was a shame that their friend did not feel able to talk to their local hospice about their situation and assisted dying directly. I won’t make any assumptions about possible reasons.

Palace of Care – Straight Up Now Tell Me

Posted on by
Reply
Photo by Larm Rmah on Unsplash

Things hadn’t been going so well in recent weeks. Our patient had needed to come in for treatment which helped one of their issues, but came at a great cost. Pain was made much worse for most of the day after the treatment was given. This was on top of a high background level of pain already. I suspected our patient downplayed their pain. They were well versed in putting up with significant amounts of pain. There was no questioning their toughness and strong determination.

I said to them, “anyone else would not have been able to handle what you had in the past year. Most people would’ve stopped treatments after the first two cycles, but you had more than ten cycles. I think you have stayed alive through sheer will power alone.”

We had come to the point where, “First Do No Harm,” had to be considered. The treatment we had provided had made the symptoms worse, it had increased the suffering experienced. The entire management plan needed to be reassessed, with the patient and their spouse. A meeting was scheduled for the next day.

Continue reading →

Palace of Care – Maturity Crash Course

Posted on by
Reply
Photo by Kyle Glenn on Unsplash

She was still a child when we admitted her to our inpatient unit. 21 years old but she acted more like a teenager. She had been unwell for five years with bone cancer and had undergone many treatments. She had spent a lot of time in hospitals and had moved from her hometown to be closer to live in the same city as the treatment centre. In her last hospital admission, she had been troubled by a racing heartbeat and had been reviewed by heart specialists.

She was nervous on arrival at the hospice, and she wanted us to discuss any changes with her Oncologist. She had been under his care since her first treatment and she wanted him involved in any treatment decisions. We were happy to involve him and discussed our proposed changes with him. He said that he would defer to us when it came to palliative care issues as he felt we had more experience. Over the next week we built up trust with our young patient, and we were able to control her pain well enough that she could go home.

After two weeks she had become unwell with worsened breathing and ended up in the hospital. They scanned her and found cancer in her lungs had worsened. She asked if she could be readmitted to hospice and a transfer was arranged for the same evening. Medications to ease her breathing was started.

She was reviewed on the ward round the following day and was started on high-dose corticosteroids which initially helped her breathing. A few days later she asked to speak to the doctors. She said that she understood that her lungs were in bad condition, and without medication, she would die. She asked if she could stop her medications. She had discussed this with her family and they wanted to support her decisions.

She chose to stop her treatments and wanted nature to take its course. We provided symptom control medications to keep her comfortable. She died a week later.

Between the first and second admissions, she had grown up a lot. A young girl had grown up into a young woman over a few weeks. A brave young woman who took control of her situation and chose to stop active treatments, opting for comfort care only. She went out on her terms and did it her way.