My usual approach to complementary or alternative therapies is to try to keep an open mind. A lot of treatments do not have much evidence-backing but can be important to the people wanting to try them. A lot of the patients I see have exhausted all that Western medicine has to offer, thus they seek alternatives. Some of these treatments may be expensive in financial and other costs. I am supportive of a patient’s right to choose whatever treatment they want. If it makes them feel better, who am I to judge?
I do draw the line if an alternative treatment is causing harm. First do no harm is the first concept they taught us in medical school, but it is not a concept taught in all therapy schools. Rarely have I directly intervened when it comes to my patients receiving complementary or alternative treatments, but that does not mean that I would not do so.
He was 14 new to the area, no siblings and only his mother and him. They had been living up north; he didn’t know why they moved and it didn’t matter. Everything was okay until his mum got sick. She went to the Doctor and came back with lots of medicine. When he asked what the Doctor said she brushed him off with “nothing for you to worry about son”.
A month went by and his mother was getting worse. They both went back to the Doctor, he said she needed to do some tests and he gave her a piece of paper and told her she had to go to the hospital for some x-rays and some other things that he didn’t know what they meant. The doctor would contact her when he had the results. The Doctor phoned a few days later, he needed to see her. He told her she had cancer.
He went to school at his mother’s urging. His mother was alone, he worried she might need something and he wouldn’t be there to get it. She reassured him she would be fine and would text him if she needed him.
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.
Today was shower day. In preparation, I lit the fire and made the room nice and warm, laid out her clothes so they would be nice and cosy to get into, just like my mother had done countless times over the years for all her children.
After showering, I raced her down the hallway in her wheelchair into the warm room and proceeded to dress her and blow dry her hair. She was unable to transfer other than to put her arms around my waist and hold onto me as I put her into her favourite chair.
“Well, now you have to pay me,” I announced.
She looked at me suspiciously until I said the cost of the shower was two kisses.
She smiled and gave me five kisses and said, “Oh I have overpaid you.”
“Don’t worry,” I replied, “I have change.” I kissed her cheek three times; She laughed just like she used to laugh and then I made her a hot cup of tea. After the tea she fell asleep in her chair. She looked exhausted from the effort of showering and slept for an hour.
When people came to visit she would try and sit up and talk with them but after a while she was just so exhausted. Her kidney function was getting worse.
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.
Hi, my name is Naomi Lees, I work at Edmund Hillary School in Papakura. I met Dr James Jap a few years ago when he came to a meeting at school. I have really enjoyed Palliverse posts. When James asked recently who would help I said I would and did nothing about it for six weeks except for the occasional pang of guilt for not doing what I said I would do.
I looked after my parents in the last two years before they died. These posts will contain some of what I learned.
So here is the first of my contributions:
Looking for Kindness
When I was at school I was out on duty in the playground making sure the kids were safe in the playground. Then two little girls came up to me and one of the girls was new to the school and she was 5. The new girl was crying loudly. So I gave her a cuddle and asked her what was wrong and she said to me.
“Oooh I’ve lost my friend.”
“Don’t worry,” I said, “I’ll help you to find her.”
“What is her name?”
More tears then she said, “I don’t know.”
Then I said, “what does she look like?”
More tears then she said ………”She looks KIND.”
Bianca the other little girl who is 8, looked at me and we both smiled then I said very gently to her that Bianca knew all the kind girls so if she held Bianca’s hand and walked with her I am sure they would find her friend. Off they went in search of Kindness!
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.
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.”
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.
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.
palliverse.com 