I was asked to speak to the patient’s son. His mother was unwell and deteriorating. Her son was not medically trained but was forthright in his opinions. He thought his mother had simple constipation and all she needed was simple laxatives. He was more than assertive in his requests for treatment, taking a more directional approach.
“Look, I’m not telling you what to do, but…”
“Actually, you are telling me what to do. I need to tell you what I need to do for your mother. She’s very unwell, and is not just constipation going on. I think she has a bowel obstruction caused by the cancer. It is causing severe pain, nausea and vomiting. I am very worried about her. I have seen her condition worsening every day. I don’t think she is going to get better.”
“You mean she won’t recover?”
“She is trying her best to do so, but I think she probably won’t be able to. She’s too unwell.”
“What can you do for her?”
“We can try to make her more comfortable. We’re going to have to use injectable medications as I’m worried she won’t be able to swallow soon. Do you have any questions?”
“No, please do your best for my mother. She raised us all, and she always worked so hard. We wouldn’t be here if it wasn’t for her. Please look after her. “
One of the cruellest consequences of COVID lockdowns was the restriction that we had to place on visitor numbers. We were generous in that we would allow each of our patients up to four named visitors, but this still fell short when it came to families with more than four members. We acted with humanity and compassion, thinking to ourselves how would we feel if it was us in their situation? But what do you do when someone has 15 children? It is difficult for a family to choose who gets to come in, and who has to stay out. Video chat technology allowed for virtual visits but they were no replacement for in-person visits.
Our patient was a man in his 50s who had six children, the two eldest lived out of town. The four younger children were keen to spend time with their Dad, and their Mum struggled to choose who would be the nominated ones for any given day. The family had always been close and the parents had home-schooled their children. They had always done things in their way. Having Dad critically unwell and away from home added to the overall disruption of their family life. Our team’s opinion was that our patient only had limited time left to live. Given the circumstances, we flexed our approach and allowed the four younger children to visit alongside their mother.
My patient arrived in 1970s New Zealand (NZ) a refugee. One of the millions of innocent victims of a proxy war. She and her husband had worked hard, and raised their family well. Their children had grown up and had made good lives for themselves and their own families. She was the proud grandmother of six, with ages ranging between 2 to 18 years old. She was admitted for end of life care and had been comfortable. Her family attributed this to her Buddhist beliefs. She had always been the calm one in their family. “Dad was the fiery one, and he had died about seven years ago.” She had carried on with life, taking even the death of her partner with calm. She her family that she would see him in the next life. She wasn’t sure in what form he would be reincarnated, but she was sure they would meet him again.
She had lived a calm life and her family were not surprised that her dying process was also calm. She didn’t need much in the way of medications as she was mostly comfortable. She lost consciousness and we warned the family that death was likely imminent, that she would be dying soon. Two weeks passed and she was still alive. She remained comatose and non-responsive. She had not been alert enough to have any oral intake. The family made sure her mouth was kept moist.
Her family asked us how long she had left to live. We explained that from our experience that other patients in similar situation likely would have died two weeks ago. Our science could not explain why she was still alive. We asked if she had any unfinished business, was there anyone that she had not seen yet? The family gave us a puzzled look, she had seen everyone that she needed to see. Or so they thought. As clinicians we all wondered, what she was waiting for?
We found our answer a few days later. As I was heading upstairs for lunch, three men walked into the hospice. One of them walked ahead, followed by two others. The two men wore green uniforms and looked as if they could handle themselves. The man in front was a short, Asian man in his forties. His hands were cuffed together. He was led to his mother’s room and spent some time saying goodbye to her. He cried as he had not seen her for two years he had served in prison.
She may have been comatose and thought to be insensate, but she knew her son had come to say goodbye.
I went to see the new patient who had just arrived by ambulance. A Chinese man in his 30s who was drowsy and confused. He wasn’t able to move out of bed, and needed full assistance with all cares. He was accompanied by his wife and his father. Our patient’s English was reported as good but he wasn’t alert enough to answer many questions.
“Where are you sore?”
Hands pointed to his abdomen as he grimaced.
His father said, “He’s always considered other people before himself. That’s how he’s been since he was a young boy.”
I made some adjustments to the patient’s medication to try to ease the suffering.
His father came to speak to me, and I ushered him into a small meeting room.
He was angry and devastated. He spoke to me in Cantonese which I have some understanding of, thanks to a childhood of watching Hong Kong TV series on VHS video tapes. My usual slow process with Cantonese, is to convert it into Mandarin and then into English. I have trouble when trying to go back the other way, so don’t speak Cantonese.
He recounted the clinic appointment they had attended yesterday. They had driven from home to the Oncology Centre. His son required a wheelchair as he could not walk the long distances. The Oncology registrar that met them was Chinese and spoke Cantonese. He asked if his son could lie on the bed as he was tired from sitting up for hours to get to clinic. The registrar answered no, that the clinic was too busy today. This surprised the father who said, “Couldn’t they see how unwell he was? Then they told us bluntly, there was nothing they could do for my son. That he was dying. I was so angry that I wanted to complain, but my son wouldn’t let me, he told me to leave it, and that he wanted to go home.” I listened to him for 45 minutes and talked to him in Mandarin which was our shared second language. He had calmed down and was able to head back into his son’s room.
She was dozing off in her chair and her partner answered, “She’s okay, just really tired.”
“You had a lot of pain last night, you still look sore at the moment.”
“No, she’s not in pain, sometimes her face just looks like she’s in pain. She’s pretty good at the moment the cancer lumps in her tummy were sore before, now they are okay.”
“You were on the pump before, did it help your pain?”
“Yeah, it did help my missus’s pain, but then we went to the traditional healer and he told us to stop the pump. Since then the pain hasn’t been as bad as it was. We stopped the pump last week.”
“You’ve needed seven extra doses since yesterday. I’m worried we aren’t controlling your pain enough.”
“No, you are doing all right. My missus will tell you if she needs more. She wants to call the shots.”
“How long you guys been together?”
“16 years.”
“Cool, how did you meet?”
“At church. She was a church girl, me I was a wannabe gangster. My missus straightened me out. Now I’ve become a workaholic, I work for my family, that’s the most important thing for us. To give our kids a good upbringing.”
“You guys make a good team.”
“It’s my missus, because of her I changed for the better, it took her five years but she sorted me out. She’s my boss.”
“Were you guys scared of hospice before you came in.”
“Yeah, we tried not to come in for the last couple of weeks. We wish we had come in sooner. She hates the hospital. She wasn’t sure about hospice.”
“Are you still scared of hospice.”
“Nah, it’s a good place, you guys are taking good care of her, and the whole family. We feel safe here, you guys listen to us. In the hospital they just kept giving us bad news, and then more bad news. And just when we thought we’d heard it all, even more. My missus just wants to make the most of each day, but we know how unwell she is. This place would be a good place to be at the end. She feels safe here, you guys treat us really well. We are still praying for a miracle.”
“You keep on praying. We just want to try to make her more comfortable. I think we could do better with her pain control, we may need to start the pump up again.”
“My missus wants to stay off it, but if things became too bad, if you thought she’d really need it, it would be okay to start it again.”
“Okay, we’ll try to keep her off it, try to do things her way as much as possible, but if things get really bad, we’re not going to let her suffer.”
“Yeah I just want her to do what she wants.”
“Do you have any questions?”
“Yeah. Do you think you could help us, ummm, we’ve been together a long time, and we had planned to get married last year in our backyard. But then she got really sick, and ended up in hospital, again and again. Do you think you could help us arrange for someone to come in to marry us? We just want it simple.”
“Yeah sure man, we can help, it’s been a while since we’ve had a wedding here. We’ll get the team going, we’re all keen to help. Just remember it’s your wedding, not ours.”
“Thanks, maybe if we get married then she’ll have a miracle.”
One of the prognostication tools that I use in my day to day palliative care practice is a new form of medical imaging. We don’t have to worry about radiation exposure no X-rays are involved. You can keep all of your earrings and piercing jewellery on as there are no magnetic fields involved. It doesn’t rely on ultrasound technology either, in fact it doesn’t even need a power source. No it isn’t the latest version of Google Glass, or the latest VR/AR technology from Meta. My patients don’t need to be referred anywhere and the scan can occur on site, with no waiting list. We don’t even need anyone to review the imaging and interpret the findings.
Not every healthcare institution is lucky enough to be as well resourced as we are. We have a special scanner which can indicate to us which patient is the most unwell in the hospice inpatient unit. A handy second opinion as prognostication is usually difficult to get right, at best it is an educated guess. We have a mobile PET scanner which makes it easier for us to assess how unwell a person is. We just need to provide it food and water, and occasional access to the local veterinarian. Yes our little CAT scanner has four legs and a tail and is named Charlie.
This workshop is for General Practitioners based in Victoria (Australia) who care for people with a life-limiting illness. Practice Nurses are also welcome to attend.
Topics
• Recognising patients who need palliative care
• Communicating about end of life issues
• Voluntary assisted dying in Victoria
• Assessing and managing common symptoms
• Advance care planning
Facilitators:
Dr Rowan Hearn – Clinical Director Palliative Medicine, Calvary Health Care Bethlehem
Dr Rupert Strasser is a palliative care specialist and geriatrician, with Calvary Health Care Bethlehem. He is passionate about providing excellent clinical care for all. Rupert’s clinical interest includes palliative care for neurodegenerative disease.
PEPA is an accredited educator with RACGP (workshops are eligible for category 2 CPD points)
Date: Saturday 23rd July 2022
Time: 10am – 12pm
Online – a WebEx link and guidelines to access will be provided prior to the workshop date.
Workshop Pre-requisite:
To maximise learning PEPA offers 6 online GP learning modules. These modules have been developed by palliative care experts and reviewed by clinicians with extensive palliative care experience. They can be accessed by setting up an account at the PEPA Palliative Care Education and Training Collaborative: https://palliativecareeducation.com.au/
PEPA is an accredited educator with RACGP. Workshops are eligible for Category 2 CPD points
Inquiries:
PEPA Administration – E: pepa@svha.org.au
Margarita Makoutonina, Calvary Health Care Bethlehem
I felt it as soon as I arrived in this hospice. The wairua (spirit) felt good, and I started laughing. This place is lovely, the staff are so nice here Doc.
Were you scared of coming in?
Nah, I had heard good things about you fullas. And it was all true, you guys make me feel comfortable.
What did they tell you in hospital?
The doctor was straight up, told me what was going on. That it was bad cancer, that there was nothing else that could be done. No bullshitting like some of the other doctors.
Hmmm?
I went to the clinic and the doctor told me that there is nothing else that can be done. Then he talked about a possible treatment. I’m not sure if it was me that was confused or the doctor. I just want people to be honest with me. I’m not scared, I know I’m not well. We’ve lost a lot of whanau (family) in the past. I know what is happening, I’m dying. Can you be straight up and honest with me?
Sure. How are you really feeling?
A bit sore, I think I need the extra pain relief. Hey Doc, thanks for listening to me.
No worries, please tell us when you are not comfortable.
I received an email from someone wanting to undergo an assisted death.
I replied with general advice that was available online on the New Zealand government’s assisted dying website.
The person replied outlining their situation. They had been approved for an assisted death by the national service. Their residential care facility which had been home for the past four months would not allow assisted dying to occur on its premises. Their local hospice had made it clear that they would not be an option.
I explained that we had initially planned to offer our venue for people in our catchment area, but would consider cases from elsewhere. I promised to consult my team, and we agreed that we would be able to provide a venue. An onsite meeting and tour of our facilities was arranged, scheduled for a time when the patient’s family would be available. This would be the first time that we would meet a patient accessing this service, which made us feel nervous.
It was his second admission. He had been beautifully cared for by his family over many months, but the last week had been terrible. He was agitated, restless, and did not know what to do with himself. His wife wanted him to come back into hospice for end of life care.
On arrival he was semi-conscious, agitated and not able to talk clearly. His body was so unwell that his mind was no longer able to be lucid. Although he tried so hard to be there, it looked as if he was in-between two worlds. His family reported that he had seen dead ancestors.
I didn’t want there to be any surprises: I spoke in a quiet voice and tried to be as clear to them as possible, using simple English.
He is so unwell, so exhausted. He is dying.
I purposefully used the word dying at least five times during the 15 minutes of my visit.
When someone is dying everything inside can become all messed up, like he’s in a storm. He doesn’t know which way is up or down, and it might be really scary for him.
End of life delirium/terminal restlessness.
When someone is dying, they become less clear in their thinking, and sleepier. That is Nature or a higher power’s [palms open being raised towards the ceiling] way of protecting the dying person from having to have the full 3D/HD experience of dying.
He could see that his own distress was causing distress to his family, which caused him further distress.
I will change his medications to relax him. We’re going to calm it all down, and we are going to get him through this. We’re going to get you all through this.
I was caught off guard when he suddenly opened his eyes and reached out to shake my hand in both of his. He thanked me for what I had done for him.
Nek minnit – [I was being hugged and I hugged him back.]
palliverse.com 