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
Liese is an experienced Palliative Care Educator, Mentor and Clinical Supervisor who has helped and inspired many people in New Zealand, Australia, the Pacific Islands and many other countries. I’ve had the pleasure of seeing Liese present live in person at various conferences and workshops, which has always been a real treat. Liese has kindly shared some of her personal thoughts in the hope that they will help others during the trying times that we all find ourselves in. Thanks Liese!
The art of communicating compassion in PPE: Pantomime of Purposeful Expression.
“ behind glass” by Marta Bevacqua, Paris
“Make your choices based on love, not fear” – Dr. Elisabeth Kübler-Ross
In my work as a mentor and clinical supervisor of healthcare staff, I am currently hearing expressions of grief, frustration, anxiety, concerns and sometimes a sense of powerlessness in this Covid-19 pandemic. Staff are talking about feeling clumsy and inadequate in their communication of compassionate care to patients through layers of PPE. This combined with a high-powered, stressful, anxious working environment makes it paramount for staff to commit to time for self-care and self-reflection, increasing their awareness of how they are in body, mind, heart and soul, in order to be able to practice compassionate care.
I repeatedly hear: “I don’t have time for self-care or reflection, I am too busy juggling work and home, I feel like I am running all the time.”
I totally agree, life before covid-19 was busy enough and now is for most – in essential services especially- even more pressured. However, I also would like to challenge your statement of “no time” with a simple exercise to do at work, that takes about 15 seconds, can reduce some stress and anxiety and be helpful in re-connecting you with your compassion.
Unless you are on your way to an emergency of course, then just take one deep breath and run!!!Continue reading →
Wellbeing resources for frontline healthcare workers are available from the NZ Mental Health Foundation’s website – this easy to navigate website includes lots of useful tips for this difficult time we all find ourselves in. As well as links to websites, Frequently Asked Questions, and downloadable resources.
On a similar theme is their well-designed All Right? website which also includes links to their getting through together campaign designed with COVID-19 in mind. Plenty of good wellbeing ideas for all age groups are contained in this vibrant, colourful and energetic looking website. Well done NZ Mental Health Foundation!
Both of these websites are well worth a deeper exploration and may be helpful to yourself and others in your bubbles.
My 10 year old son and I watched a story about the Mentemia App on TV last night. Mentemia means ‘my mind’ in Italian.
Mentemia is a wellbeing App that has been co-developed by NZ’s Sir John Kirwan, famous former All Black and long-time Mental Health Advocate. Mentemia is currently free to download for all New Zealanders thanks to a funding deal between Mentemia and the NZ Ministry of Health. It is available on the Google Play and Apple App Stores.
We downloaded it last night and we both started using it.
It has a nice user interface and is easy to navigate, with good use of Simple English throughout. We found the interactive exercises fun to do, and things like spinning the wheel to choose a daily act of kindness to perform are also cool additions.
The ability to record how your mood is at anytime will be useful.
Lots of links to useful videos and articles to read, including lots of staying calm through COVID-19 articles.
At first glance Mentemia looks like an useful wellbeing app that we will both be returning to on a daily basis.
Some parts of the app are still a bit buggy, so far we’d give it a 7/10.
Incubation period (Time from exposure to symptoms developing) = Pre-symptomatic period is average 5-6 days, but could be as long as 14 days (hence self-isolation period of 14 days recommended by MOH)
Pre-symptomatic transmission possible but person would be coughing or sneezing to produce droplets, and contaminating their surface surroundings.
Non-Medical masks (Do It Yourself), e.g. cotton masks, no current evidence to support or not support use. One study of health care workers using cotton masks showed that they were at increased risk of infection compared to those who wore medical masks.
It had been a great game of football, they had managed to successfully complete a number of moves that they had been practising for weeks. He was proud of the fact that the ball was always safe, in his arms.
The post-match party was a happy and raucous affair, a swirl of colours and noise, but everything seemed to stop, when she walked into the room.
Their eyes met across the crowded space, everyone else became invisible and they instantly fell in love. Soon she was, in his arms.
Fast-forward 23 years to an admission into our family room. Again a swirl of colours and noise as they settled into the room with their seven children, and their children’s children.
Early on in their relationship they had reflected on their own upbringing, having being raised by their grandparents, they made a pact that they would raise their own kids themselves.
And they did so over the next 22 years which were filled with joy.
She had become unwell over the past year, needing many trips to clinics and hospital for many treatments and even more disappointments. Always supported by their family who stayed strong around them.
It had taken a lot of convincing to allow Hospice into their lives – he was scared of them – but the fears were soon allayed by the visiting staff.
Barely three weeks ago she had organised a family trip up North, just them and their four youngest children. “She knew that her time was short, and that was her preparing me.”
During the weekend, he had shared, “Thank you for providing this large room for us, it has allowed me to be the husband again, and the father to my kids, we can be ourselves again.”
There were many visitors over the weekend and into the new week.
On the very last night the couple were together, peacefully in bed, surrounded by the love from all their kids sleeping on the floor around them.
Coming back from the bathroom on the final morning, held up in his arms, “I think it’s my time to go.”
Gently back to bed, still in his arms.
Feeling safe, surrounded by the best things in the world, their kids and grand-kids.
She leaned back, in his arms, and then quietly left the room.
“She was looking after us all, right until the very end, giving us the strength to carry on walking tall.”
Dr Matthew Grant, a palliative care specialist, has published this article in The Conversation describing normal conversations in the course of his daily work.
I love the way he sensitively maneuvers through difficult conversations, allowing the patient to control the content of prognostic information given.
“Not everyone will feel comfortable talking about their future treatment plans like Keith. It’s important I allow Sharon to decide whether or not she wants to talk about a future where she dies, just as I shouldn’t necessarily dissuade Christos from smoking if it gives him pleasure.”
The Australian and New Zealand Society of Palliative Medicine 2018 Conference #ANZSPM18 is off the a great start, with many excellent plenaries & proffered papers presented on day 1 – following an excellent Trainee Day & pre-Conference workshop on thought leadership.
Day 2 promises to be even more awesome, starting off with keynote speaker Tom Le Blanc sharing his insights on collaboration & integration between palliative care & haematology. The rest of the day will feature a variety of plenaries & concurrent sessions on the new frontiers of palliative medicine – the theme of the conference. I’m also looking forward to the conference dinner tonight!
You can find the sides for my presentation on Palliative Care in Heart & Lung Transplantation here: HLTX PC ANZSPM18 Chi Li