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
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.
What would happen after the joyous reunion of Poppa and Junior? This was a question asked at our multidisciplinary meeting two and a half months ago. From the accumulated experience of our staff members we thought it could go either of two ways:
Poppa might get a “boost” from being reunited with Junior and other family members, and might improve.
Poppa had used what was left of his energy holding on to see Junior and would continue to deteriorate.
Two new resources are now available to help with planning care for people with dementia. Palliverse talked to driving force Prof Meera Agar about the ‘whys’, ‘hows’ and ‘whats’.
Q: Why develop care planning resources just for dementia?
A: People with dementia face unique challenges and decisions related to their care and health care needs as their illness progresses; and supporting their choices is made more complex as they become less able to communicate their needs and articulate decisions about what they want from care. While good intentioned, many health professionals in aged care and other settings may not understand the course of dementia, and there may not always be good communication, involving the person with dementia whenever possible and their families, and also between the different health professional involved in the persons care.
Q: So how do the new resources help?
A: The two new resources are a website offering practical support for family case conferencing and a report providing guidance on critical recommendations to improve advance care planning. Continue reading →
The first time I met the young ladies I had been cross-covering at the hospital, and was taken to see each of them as they both had severe pain and discomfort. They came from completely different backgrounds, had lived completely different lives but somehow ended up on the same journey.
About a week or so later they had both been admitted into our inpatient unit for pain control. Adjustments were made and they became more comfortable, but a few days later pain had returned again, as well as other problems. We had to aim at constantly moving targets, and so it would be over the next three months of their individual roller-coaster rides.
The similarities were startling; the same diagnosis, the same poor response to treatment, and in the end the same prognosis. What was completely different was their individual experiences of the same outcome. Continue reading →
Driving to work on Saturday morning I listened to RNZ National’s Kim Hill interviewing celebrated Australian novelist Cory Taylor. Cory talked about the experiences that led to her writing her last book, Dying: a Memoir (Text Publishing), while dying of metastatic melanoma with brain metastases. Topics discussed include Euthanasia, Palliative Care, and writing about dying.
You can listen to the RNZ National interview here.
i’m sorry for all the people in my life i haven’t had a chance to already talk to this about in person, and this is sort of why i’ve been quieter on social media.
but my treatment, and treatment aims have started to move into the next phase of stage IV cancer, and we’re at a point where we can start talking a timeline. i am now, without question, terminally ill – which means, my life expectancy is under 12 months. for the first time, i asked my oncologist straight out for numbers, because he said that a point would come where he could start estimating. that point is now. his ‘worst case’ estimate (all treatment failing now) is 3 months, and his ‘best case’ estimate (all treatment working for as long as would be expected) is 12 months. the reality will lie somewhere between those two figures. it’s my…
There’s no way around it: children sometimes have to hear it like it is. Despite our desire to keep their early years carefree, we may not be doing them a favour by keeping some hard truths from them. And for those things that are inescapable, like the death of a family member, glib answers won’t do.
We all learn at some stage that the world is not as we’d like it to be. That is possibly the single most important lesson in life. The big question is how to teach it to our kids, and when.
The “when” is sometimes out of our control, as circumstances can dictate. But there are parts of the “how” that can be more manageable.
Children are not empty vessels
Kids create deep and powerful narratives about the world regardless of what we do or don’t do. They do this for the same reasons we all do – to explain how the world works and to create meaning.
It is a mistake to think this narrative is absent in them until we decide to help create one. The reluctance we sometimes have to involve ourselves can be a result of this naive view.
We imagine they are somehow neutral or unsullied in their views, and that when we talk to them about hard issues we are forcing them to come to grips with an imperfect world.
We don’t always know what they don’t know. We assume they have developed a lot of cultural norms when they haven’t, and we assume they are unaware of things they have really thought a lot about.
One thing is sure: if we don’t help them make their narratives, they will do it themselves anyway, and perhaps not in ways that are healthy or optimal.
There are two important things we can do as parents to prepare our children for some deep and potentially disturbing conversations, and to help them build a more rational picture of the world.
The first is to help them make sense of the world through frequent and long conversations. Making meaning is the prime function of language, after all. This is where an established behaviour of talking is critical.
The only way to know how they currently see things is to talk with your child – a lot. Talk about issues big and small, and give them the chance to ask things that take time to well up in conversation.
The second is to treat them as rational beings capable of making sense of what is going on around them.
Children are far more rational than we give them credit for. And they are far more capable of deep insights than we usually imagine.
I work in the area of teaching children to think. The ability of very young children to do this well is a constant reminder of how our educational system underestimates them.
The thing that makes a rational approach possible is treating conversations as two-way exchanges. We don’t just talk to children to instruct them, and we don’t just talk to understand them – we also talk so we can understand each other.
This is a critical point. By talking to understand each other we give children the opportunity to normalise their thinking, and to help understand the norms of mature social thinking. This in turn is important because it provides the ground for a rationality based in social competence, in which we reason to solve problems through discourse and social interaction.
As the Russian psychologist Vygotsky wrote in Mind and Society, children first learn a competence socially and then internalise it.
Every function in the child’s cultural development appears twice: first on the social level, and later, on the individual level.
To put it simply, if you have not modelled how to talk through difficult issues with a child, that child has not learned to internalise a mechanism for dealing with such issues.
This is a key component of teaching resilience – and is there anything we want for our children more than this?. For without the cognitive tools to manage change and uncertainty, they will be less resilient than they could be.
Whether the issue is the crashing reality of Santa’s state of existence, the death of a family member, or a dramatic change in lifestyle, there will be limited recourse for children to rationally understand the situation, and their role in it, if they have not been taught these skills.
So talk to your children about how they reckon Santa does it. Talk about mortality and what it means for us as humans. Talk about what life was like in the past and could be like in the future. Explore and unpack all the implications of these things with them.
Or just talk with them a lot about anything. Give them opportunities to come up with questions about these things themselves. If you give them the chance, they will not disappoint you. And by doing so, you will make them less disappointed.
In my state, Victoria Australia, the VEC (Victorian End of life Coordinating Program) is undertaking similar work, and plans to release a Victorian end of life care plan soon.
In Australia, we have not had the negative stories and experiences seen in the UK; because the LCP was implemented in a better way? The stories coming out of the Neuberger report were shocking: I cannot imagine any patient being denied a drink when requested “because she is on the LCP”. However the LCP has also been withdrawn locally in response to the negative findings delivered in the UK.
I will be participating in a pilot of the new end of life care plans which will replace the LCP locally. I am looking forward to seeing the final version.
Thoughts, dear reader, about the terminal care of the LCP?