You’d think that we know this all too well working in palliative care/hospice but we are just as human as everyone else. We also get lost in the busyness of life in general. Rushing from one appointment to the other and having to switch roles as seamlessly as possible. I am no different to anyone else. I don’t have all the answers and am still searching for them myself but I want you to have a think about some questions I raise below.
Life is too short could be a stimulus to reflect on how you spend your time. Are you in a job that you actually enjoy? Do you feel like you are making a difference. We spend a lot of our time at work, 8 or more hours a day, maybe for 40+ hours a week, month after month, year after year. A big chunk of our lives is spent at work, and you may be spending more time with your workmates than you spend with your own loved ones, friends, and family. Are you happy at work or is there something else you’d rather do, somewhere else you want to be? Does it still satisfy you professionally? Are you finding yourself enjoying what you do or do you find yourself putting up with things? What would be your outlook on your job if you only had 10 years left to live? These are questions that we don’t ask ourselves, but are situations that my patients have found themselves in.
He was found on the floor after having fallen down while walking back from his bathroom. A human arm should not have been able to bend at the odd angle that his arm was in. He was in terrible agony and an ambulance was called to take him to hospital.
I met him the next morning on the post-acute ward round. Overnight he had his fractured arm operated on, and screws and plates had been installed in order to fix the broken limb. He needed help with toileting and needed help with feeding. His other limb had been affected by cancer some years ago and had been removed along with his shoulder in an operation called forequarter amputation. It was terrible luck that his remaining arm had been badly injured.
I don’t feel well. I’m having trouble breathing. I feel so tired, but all I do is sleep. I’m feeling too weak to walk to the toilet, I almost fell over last night.
The nurses told me that you’ve had bad pain, but that you didn’t want to take pain relief.
I need to finish sorting out my legal affairs, I don’t want to leave too much for my friend to have to deal with.
Our social worker can help you with that stuff, she can talk to your friend. What else is bothering you? You look worried.
Doctor, I think I don’t have much time left, I feel so terrible, I don’t even have energy to talk to my sisters back home. Why do I feel so bad?
You’re getting worse, it’s the cancer, your body can’t handle it anymore. I think you are dying, and you might only have days left to live.
I thought so, I just need to sort my stuff out…
Then you’d be able to let go?
Yes, I don’t think I can hold on for much longer.
I think I can make you more comfortable, putting up with pain will use up your energy even faster, and make you more tired. Can I increase your pain relief a bit? It might make you less tired.
Okay, if you think it will help.
We’re going to get you through this, and even if you fall asleep we will continue to try to make you comfortable. We’re going to get you through this. This is our social worker, she can help you with your stuff.
Thank you doctor.
Please let us know if there is anything else we can help you with. I’ll see you later.
Here’s a short story that I have shared with children of various ages who are losing or have lost their mothers.
Prior to Medical School I completed a Biochemistry degree. I learnt all about the important biochemical reactions that sustain life as we know it. Some of the most important reactions require mitochondria, which are present in each and everyone of our cells.
Mitochondria can be thought of as the power plants of each cell. They allow energy to be released, keeping each cell, and each person alive. Without mitochondria we could not live at all.
Another special thing about Mitochondria is that they were likely an introduced species, likely to have developed on their own. Millions of years ago they struck up a relationship with the rest of the cell, and the successful partnership has continued on ever since.
An interesting thing about mitochondria is that they are only passed onto the next generation by the female of the species. Thus in each cell of our bodies there exists a tiny part of our mother, our mitochondria, which if not present, we could not be alive at all.
This started when the very first mother passed on her mitochondria to her children, and from her female children to their children, right until the current day.
No-one can ever take mum away from you. Even though mum may be dying, she will live on in every single cell of your body, along with your memories of her.
St Joseph’s Hospice was founded in 1967 by Cicely Saunders in order to help cancer patients for whom medicine had nothing else to offer. Often these patients would suffer from the effects of their illnesses and died in miserable circumstances which were distressing to both patients and their families. Over the next decades hospice/palliative care services developed all over the world, and practitioners pride themselves on being patient-centric. Hospice/palliative care staff value their communication skills, and listen actively in order to find out what their patients need. They try to offerbespoke care customised to the individual patient and their family.
In New Zealand on 07 November 2021 the End of Life Choice Act 2019 will be enacted which will mean that people with less than six months to live who have intolerable suffering and fulfil the criteria can legally access assisted dying services. New Zealand Hospice and Palliative Care organisations around the country have put forward a viewpoint that they are not supportive of assisted dying, and have largely not engaged with the subject at all despite it becoming legal and available in five days’ time.
What if NZ Hospice/Palliative Care was to try to empathise with someone with the opposing point of view. What if it was to put itself into the shoes of a person considering accessing assisted dying services? What might such a person have to say to them?
A week later and I had to keep my promise, to prove that they were not just empty words.
Thursday
I’m sorry that things are changing so quickly, that you are losing even more control.
Groan.
The reason that you have been vomiting is that the cancer has caused a blockage in your guts, it’s really bad.
Is it going to get better?
We can try a medication which might dry up the vomiting, but I don’t think the blockage will clear. This is a dangerous situation, you probably won’t recover from this.
Could you decrease the pain relief? It’s making me too sleepy. I want to be awake for my son.
Okay, but if your pain gets bad, we might have to go up again.
“Are you going to help me, or are you going to keep blocking me?”
She had spent weeks on our ward with pain in her upper right abdomen. This was caused by metastatic cancer deposits in her liver. Previously the metastases had caused blockage of bile ducts leading to painful jaundice, this had been treated with insertion of drains. She talked with fondness about her children, but when it came to discussing her grandchildren that was when her eyes sparkled. It was good to see her comfortable and talking in a happy fashion. A pleasing contrast to when she had first been admitted, doubled over and grimacing in pain, despite having taken maximal pain relief at home. It had been good to ease her suffering with the care that we provided.
The team at Palliative Nexus is presenting a webinar about death and dying which will be of interest to the #pallanz community. It’s on a laptop near you on Wednesday the 31st of March at 16:00 AEST
Professor Jennifer Tieman will outline her work on the Dying2Learn MOOC (Massive Online Open Course). It won an Innovation in Palliative Care award in 2017.
Prof Tiemen is the Palliative and Supportive Services and Matthew Flinders Fellow, College of Nursing and Health Sciences at Flinders University.
She will discuss the research arising from this excellent MOOC including community perspectives on death and dying.
Pearls are formed by oysters when they try to wall off something that irritates them. The irritant gets covered in layers of a substance called nacre (mother/parent of pearl) and can become something beautiful of high value. This process is explained well here.
Some patients are truly a pleasure to look after. Some will find their way through your protective shell and into your heart. I was granted permission to broadcast the following story by Perlin Soong and his parents as he hoped that it would help others in similar situations.
I’d heard about Perlin months before I actually met him. He was described as a remarkable 32 year old man who had advanced metastatic cancer. He’d received many treatments and had come close to dying a number of times in the past year. His oncologist arranged for me to meet Perlin in hospice outpatient clinic as he had questions to ask about the end of his life, which he was likely approaching.
Perlin attended clinic with his parents, having recently completed whole brain radiotherapy for brain metastases. At the time he felt relatively well but knew that things could worsen at any time. Thus he tried to make the most of each day, e.g. He had recently fine-dined at one of Auckland’s best restaurants with a fellow foodie friend – had bivalves been on the menu?
Perlin had been distressed by severe headaches, nerve-related leg pains, breathlessness and panic attacks. We explained that we could usually control such symptoms well and on the rare occasions that we couldn’t, Palliative Sedation therapy could be offered. This final resort therapy would make him less aware of his symptoms, and usually out of the hundreds of cases that we dealt with each year, only two or three of them required sedation. This conversation reassured Perlin.
Perlin recounted having being surprised that a work colleague became his chemotherapy buddy, as they were both being treated at the same time for advanced cancers. He talked sadly about how his friend had deteriorated rapidly and that his death had been upsetting, but had spurred Perlin into completing his own Advance Care Plan (ACP.) Perlin’s preference of places to die were, in descending order; at home if possible, hospice and hospital only if it couldn’t be avoided. As long as he could be kept comfortable without too much distress for his parents he would be “okay.”
Perlin worried about having seizures or stroke-like events. His mother had been affected by a previous stroke, and required care provided by his father. Perlin was worried that his father would not cope with caring for him and his mother at home. If this happened Perlin would consider residential care placement.
My impression was that Perlin had accepted his situation in a brave and pragmatic manner, and he was trying his best to look after his parents. Perlin talked about having organized as much as he could in order to make things as simple as possible for his parents, this included his advance care plan, his will, and a fully-paid highly detailed funeral plan complete with Spotify playlists to play.
Over the next two months Perlin was able to stay at home as he gradually deteriorated. His condition worsened leading to a fall, that led to a hospital admission which resulted in transfer into our inpatient unit for further symptom control and discharge planning.
Physically a lot had changed since we had last seen Perlin, he needed a lot of assistance and was largely bed bound. Cognitively he was still intact and he greeted me by name in his usual friendly manner. He had been troubled by pain and agreed to us changing his medications to make him more comfortable.
Two days later, we had a long talk about his worsening situation due to continued rapid progression of his cancer. This was despite steroid treatment, which would only have a temporary effect. Perlin noticed that cognitively he was not as lucid as he was at the time of admission. It was agreed between us, Perlin and his parents that further increases in steroid would not occur.
Perlin said that he did not have any regrets, and that he would be okay with dying, if it was his time, but that he wanted to make the most of his current quality of life. We clarified with Perlin what his idea of quality of life was; he wanted to not be in pain, didn’t mind being sleepy and in bed or his La-Z-Boy chair, wanted to be able to enjoy the company of his parents, watching movies, eating food, and listening to music. We decided with Perlin that if he was unable to enjoy the above or if he was suffering from uncontrolled pain, then withdrawal of steroids would be appropriate.
Perlin made it clear that he was uninterested in being maintained in a state of limbo, i.e. kept on high dose steroids whilst not having quality of life. We confirmed with Perlin and his parents his ACP wishes. He talked about not wanting to receive futile treatments and being kept alive in a vegetative state. He said, “I don’t want to end up like Michael Schumacher, I don’t want to end up like that.”
Perlin talked about his Race4Life wishes: He had been on a helicopter ride, and a meeting with PM Jacinda Ardern had been arranged for that week but due to NZ’s second COVID-19 Lockdown, Ms Ardern was understandably busy in Wellington. Instead, Perlin wrote a personal note to Ms Ardern who replied back a few days later with a handwritten note and a signed photograph, which please Perlin and his proud parents.
Perlin expressed how glad he was to have completed his ACP already and having arranged for a lot of other things while still relatively well. Perlin said it was important for him to share his story as he thought it could help to encourage other people to make plans early. He was glad that he had done so months ago, as he was too unwell to do so now, which would have caused much distress for him and his parents.
We asked if he needed help with anything else? “No, I’ve sorted almost everything out, except…” Perlin talked about having worked through his movie bucket list and his unsuccessful search for two movies, Run Lola Run, and Tango (1999.) That afternoon I emailed our hospice staff and within hours we had managed to find online access for both of the movies.
In the following week Perlin deteriorated and naturally became more sleepy and less lucid, as previously agreed steroids were reduced whilst medications were adjusted to keep Perlin comfortable.
Perlin was deeply asleep as we discussed the ongoing and rapid deterioration in his condition over the past days – Perlin was dying. His Dad talked about Perlin’s life and how he had always meticulously planned everything. He said that Perlin had already arranged personalised gifts for friends and family. For example, Perlin had arranged a dental appointment for Dad to have his teeth sorted, as well as nice clothing for his mum, who would never spend such money on herself. He had pre-written emails to the teams that had been treating him, that were to be sent out in the event of his death. He had also given Dad instructions on what to upload to Facebook when he died. I spoke to Perlin and said that we would get him through this, and that we would keep a close eye on his parents too. I was surprised when he answered back, “Thank you, thank you.”
Perlin was kept comfortable as he continued to deteriorate, and our care focus shifted to also supporting his parents through their most difficult time. Days later Perlin died peacefully in their deeply loving presence.Perlin had been a good friend, a trusted colleague, a Crossfit enthusiast, a world explorer, a brave man who looked after many. His life was not long, but he had packed so much into it. He touched a lot of people during his time, even experienced hospice staff sniffed back some tears as he was dying.
Perlin had talked about tough topics with grace. ACP can be a scary and uncomfortable concept to get to grips with, but it can be so helpful for peace of mind and to decrease family stress. It was truly a pleasure to be involved with Perlin and his family’s care, and to bear witness to the love and respect that they showed towards each other. Perlin was a fine reflection of his parent’s loving care and parenting skills. Anyone would be proud to have a son like him.
Goodbye Perlin, and thank you for having made the world a better place with your presence.
“The last few years have taught me that when it is our time to leave this world no one can stop it. We have one life to live. The material things we invest in are left behind only to be discarded. Live life to the fullest, don’t waste it and do what you want to do.” – Perlin Soong
On average 435 Australians die each day. Most will know they are at the end of their lives. Hopefully they had time to contemplate and achieve the “good death” we all seek. It’s possible to get a good death in Australia thanks to our excellent healthcare system – in 2015, our death-care was ranked second in the world.
We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.
palliverse.com 