Category Archives: Ideas

Palace of Care – Saying No – Part 1

Posted on by
Reply
Photo by Debby Urken on Unsplash

In his professional life he was used to taking charge, of taking control and at times this bled into his personal life as well. His wife’s mother was unwell with widely spread cancer, she had been admitted into the hospice for symptom control of pain, breathlessness, and nausea. He had always been close to her right from their first meeting, he was probably closer to her than he was to his own parents, and even called her Mum. She had always been there for her children and their partners, and he really wanted to be there for her. He wanted to make sure that she was treated right, and he had a small inkling that his manner might come across as intimidating, but that was useful in police work. He just wanted to make sure that Mum was being well looked after, it was what she deserved.

She was a Pasifika lady in her early 60s, with end-stage cancer to her liver, lungs, and many bones. She was the frailest patient in our inpatient unit and I was worried that she might be dying. She was well cared for by her family who were always with her. Her husband of similar age, two daughters and a son-in-law, who I found out was a police officer. He had already caused a bit of a disturbance in the unit as he had spoken in an aggressive manner to some of our nurses, and was impatient. The family were all tired, worried about our patient, and stress levels were high. The family members all seemed to defer to the policeman who had taken on the role of family spokesman. The patient was fatigued but had not slept much in the past days because of uncontrolled pain. The first time I saw her I thought to myself that I wouldn’t be surprised if she crashes quickly.

Continue reading →

PIANO Lessons – First meeting

Posted on by
Reply
Photo by Josh Appel on Unsplash

Years ago I received a cold-call email from a teacher at one of the local primary schools. Naomi Lees had read my bio on the Hospice New Zealand Conference website. This was a conference at which I was a keynote speaker. Naomi said that from my bio it sounded like we had common interests and she invited me along to her primary school’s networking meeting.

I had always loved the idea of compassionate communities and thought it would be a good opportunity to connect with one of the local communities we serve. I was keen to meet Naomi, her school principal and other community members, at the PIANO (Papakura Information and Networking Opportunity) meeting. A cool name and I wondered what kind of music we would produce together.

Continue reading →

Palace of Care – There’s no place like home

Posted on by
Reply
Photo by Andrew Umansky on Unsplash

It had taken some convincing for her to be admitted into the hospice inpatient unit, after two rough weeks in hospital. COVID lockdown restrictions had meant that she had not been allowed visitors for most of the time. She hadn’t been locked up but she had felt like a prisoner in her hospital room. For safety reasons not windows could be opened. Things kept changing, and the doctor with the sad face kept on bringing bad news. It seemed like nothing ever went right. The treatments were not working. Her calcium had risen to dangerous levels which required repeated treatments.

When she arrived at hospice her COVID swab result had not come back yet, so for the first day she still had to be under restrictions. She had a room to herself, and she could open the window and door to the balcony. The fresh air was a nice change after being cooped up inside the hospital. The food was delivered in takeaway containers and they only provided plastic cutlery. A small thing but just something else to add to the list. The people were all nice and really tried to make her feel at ease, but deep inside she felt uneasy.

Continue reading →

Palace of Care – How did you first meet each other?

Posted on by
Reply
Photo by Leonardo Sanches on Unsplash

Taking the social history is an important part of our assessments in palliative care, as we need to know the people that we are dealing with in order to be able to help them to the best of our abilities.

One of my favourite questions to ask couples is, how did you first meet each other?

The replies are always interesting and take people back to exciting times. Transporting them to when they first fell in love.

Examples of answers include:

“I was working in the islands and she was the beautiful girl on the bicycle who caught my eye. I just had to find out who she was. We’ve now been married for 52 years and have four children, 15 grandchildren and four great-grandchildren.”

Continue reading →

Palace of Care – The Art of Prognostication

Posted on by
Reply
Photo by Arthur Ogleznev on Unsplash

End-stage COPD (chronic obstructive pulmonary disease) due to lung damage from smoking had been his problem for the past decade. Lung tissue destroyed by toxic exposure leading to severe shortness of breath. He needed oxygen at all times, and could only at best mobilise short distances. Life had become a struggle, and just when he thought things couldn’t worsen, they did.

He was in really bad shape when he came in on Friday, he was only semi-conscious and could not respond to my questions. His wife and son, who were his main caregivers at home, looked exhausted. He looked terrible, blue lips and tongue, breathing rapidly, short, shallow breaths, with only a small amount of chest movement. I had not seen him so unwell before, which really concerned me.

Using all my clinical skills and experience, I really thought that he was dying, that he would die within the next hours. That he might last only days, and might never fully wake up again. I gently conveyed this news to the family. That I thought this might be the end of his life. They took it well, he had been unwell a long time, and had been close to death many times in the past.

I prepared his medication chart for end of life care. I wanted to cover the five common symptoms that occur at the end of life; pain, breathlessness, nausea, agitation/confusion, respiratory secretions. Anticipatory prescribing for a dying person is done, in order to cover the things that occur commonly during their last hours to days of life. Aiming for comfort more than anything else, we started him on syringe driver medications. This would mean a continuous infusion of symptom control medications to keep him calm and comfortable for whatever time was left. I left that Friday afternoon truly thinking that I would not see my patient alive when I returned after the weekend.

Continue reading →

Palace of Care – Limited time, big changes

Posted on by
Reply
Photo by Skyler Gerald on Unsplash

We had been expecting to admit our patient for a number of days. In the past week she had been troubled by bad pain in her back. We knew that the cancer had spread there already. It hurt her to walk, and she had peed her pants on the way to the toilet. She could not make it in time because the pain of walking held her up.

On admission some medications were changed and by the next morning, they had worked really well. She had slept well for the first time all week, her pain was well controlled, and she was happy to be away from home. Home was full of family, and it was hectic, three generations of family living in the same household, with up to 20 people around her at any time. It was easy to get lost in her own home. She appreciated the opportunity to rest.

Everything we told her was written in her notebook, she wrote down the conversations we had, the medication changes we had made. The notebook was where she made her plans, for everything. She knew that she was unwell, and had already taken it upon herself to plan her funeral. She had always done things differently in her life, and that was not going to change after death. She was planning to break from her usual cultural traditions, and was planning an European style funeral. She would not be going to the traditional place of mourning of her people. She was going to do things in her own way. We talked about Frank Sinatra’s song “My Way.” She jotted it down as something that she wanted to play at her funeral.

Continue reading →

Palace of Care – Love Changes Everything Part 2

Posted on by
Reply
Photo by Jackie Tan on Unsplash

The new normal had been in practice for some months. Receiving chemotherapy, recovering from the treatment, then a short break before the cycle started all over again. It was the short breaks that she looked forward to the most, when they could be free from feeling really unwell, almost normal again. Apart from the changed taste buds, and unrecovered appetite. At least they could enjoy each other’s company and smoke their favourite cigarettes together. Although they came from vastly different backgrounds and family origins, they had been amazed that they had so much in common. “In sickness and in health,” they had said as a part of their wedding vows, and he had certainly fulfilled his part. The doting husband, always there to help, he had never missed any of the appointments. He would text or call her from work during the day. She really needed him during the weeks after chemotherapy, these were her low periods when she had never felt more unwell. At times she almost didn’t want to start the next cycle, but he managed to convince her each time. That this was something that they would be going through together. His devotion had kept her going throughout the tough days and nights. Even in the midst of illness she felt blessed as he was standing by his woman.

It was the week after cycle four, they were just about to enter the recovery phase, and had planned to take a small trip to their favourite beach. They hadn’t been since last summer, things had been too hectic. This would be their chance to get away from the city, and their problems. He had gone to work as usual, he had prepared her breakfast before leaving, allowing her to sleep in. It was getting close to lunch-time and she was looking forward to saying good morning to him, he’d usually call her during his lunch break. No call came. Strange. She texted him but there was no reply. She noticed that there was a message on their answerphone. She listened to the message, it was his boss. Asking her to call him. What’s going on? What’s happened?

Continue reading →

Palace of Care – Love Changes Everything Part 1

Posted on by
Reply
Photo by Carlos Nakazato on Unsplash

Childhood had not been a happy time for her. Somehow she had survived to adulthood, and she was able to make her escape. Moving to another country, eight hours flight away. Leaving her family history behind her, she embarked on her new life. It wasn’t easy to start with, the language barrier especially hard with English being her third language. She worked hard at her job, and took extra English lessons. She made good friends with a bunch of ladies, the sisters that she had always wanted. For the first time in her life, she thought she was happy.

That all changed one fateful night, she was out with her girls, and he was out with his boys. They met each other and both of their lives changed. They had found the loves of their lives, and what she thought was happiness before, was nothing compared to what they were like when they were together. A fairy-tale romance, she had found her prince, they soon married. He was seven years younger than her, but it didn’t matter, his family accepted her as one of their own, she had found out what the real meaning of family was.

Continue reading →

Palace of Care – Mum’s Little Star

Posted on by
Reply
Photo by Sven Scheuermeier on Unsplash

As a little boy his mum would always sing his favourite nursery rhyme to him, as part of his bedtime routine. He was her little star.

We had admitted him only the day before, and we thought that he only had days left to live. End-stage disease had wreaked havoc on his body, and was starting to impinge on his mind. What was important to him? Family above all, his children, his siblings, his parents was whom he spoke about. He was uncomfortable and needed extra medications to control his various symptoms. He told us that he knew his time was short and that his family would be trying to spend as much time as possible with him.

Following the weekend there were less family members around. His mother had become acutely unwell, and the hospital had also found end-stage disease. They made a referral to see if we could admit her as well. The family had to split themselves, with one half holding their vigil in hospital, and the other half holding their vigil at the hospice.  Never the twain shall meet?

A no-brainer from my point of view. Let’s reunite the family, dying son could then see dying mother. A really sad situation, but at least the whole family could be together for both dying family members. Quick logistical arrangements were made and the son was shifted to our largest room. This would allow both beds to be in the same room as each other at times. So that they could all be surrounded by their family members.

No-one could lessen the tragedy of the life event, but at least the family didn’t have to split themselves in two, trying to hold a vigil at two places at once. The overall stress was relieved a small amount as they accompanied their loved ones in their final days.

The son set after two more twilights, and his mother would only experience three more sunrises before her light dimmed for the last time. The family planned to hold a combined funeral service in which many stories would be highlighted, and the warm glow of love would be shared.

Twinkle twinkle little star
How I wonder what you are

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

Posted on by
Reply
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.

Continue reading →