“Why do you ask that?” “Why are you all staring at me?” “What do you want me to say?” “Are you trying to team up against me?” “Are you here to interrogate me?”
He did not know us, did not trust us, he looked at us suspiciously. He had been fobbed off by the other doctors, over months. He had presented to hospital a number of times with back pain but had left each time feeling totally disregarded. Institutional racism and inequity led to unfortunately common inaction. He felt treated as if he was, “a lazy Maori trying to skive off work.” He had always worked hard, his whole life. He was proud of having always supported his family well. Just as he had experienced his entire life, they didn’t try to know him at all and made the usual assumptions. Research tells of differential treatment that is still leading to Maori people in general dying seven years earlier than the rest of Aotearoa/New Zealand’s population.
When we met, I had just started my second year of specialist training in Palliative Medicine. I was keen to use my new-found skills and knowledge in the hospice inpatient setting. When I assessed him I was sure that I could successfully treat his pain and that I could decrease his suffering. Management plans swirled in my head and I started to offer him strong analgesics in order to cover his severe pain. I talked to him in an excited manner about Morphine, Oxycodone, Methadone, Gabapentin, Nortriptyline, Fentanyl. He was not interested and would only take Paracetamol. Hmm, maybe we’ll try again tomorrow.
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
As I start to return to my usual role, I wanted to take some time to reflect on the last couple of weeks and acknowledge and thank the vast number of people in Canterbury DHB who have poured countless hours in to supporting the patients, families and staff of Rosewood Rest Home and Hospital.
I volunteered to be redeployed in the COVID-19 hospital ward at Rosewood. I worked 60 hours over seven shifts as a palliative care clinical nurse specialist.
It is still hard to describe the situation we were faced with. Firstly, we changed into scrubs in the clean area, then got into our personal protective equipment (PPE) in the transition zone (under the watchful eye of our fabulous PPE champions). Then it was brief introductions to those who would be our colleagues for the day (registered nurses, enrolled nurses, student nurses, theatre nurses, paramedics, dental nurses and caregivers, all redeployed from other services) and straight into the ward. From there, it was all hands on deck to keep up with the never ending tasks of caring for elderly, sick and fragile patients, whom you’ve never met before.
Meanwhile your brain clouds over until your lungs adjust to breathing through a mask, becoming increasingly breathless with every shouted conversation to an unidentifiable colleague. Patients’ symptoms would flare up, with little to no predictability or recognised pattern (yet) alongside other underlying health issues presenting their own symptoms. Diarrhoea, back pain, dry cough, delirium, the occasional temperature, lungs filling up fast with thick mucous and decreasing oxygen saturation that betrayed the underlying seriousness of their illness. For some, positioning became a matter of life or death.
Everyone worked tirelessly in the built up heat of PPE to keep up with the heavy nursing tasks required, while still taking time to fuss over the personal touches for each patient, like finding the right station on the radio or singing happy birthday complete with a little cake and candles. Gloved hands struggled to make the touch-screen of the electronic drug chart or smart-phone work, or to type the right letters into patients’ electronic records for the GP to read remotely.
Fortunately, after the initial onset of acute symptoms, most patients appeared largely untroubled by the roller-coaster of symptoms that lingered as days turned into weeks. It seems to be the one positive in all this, on their bad days they would just go quiet, refuse food and fluids, tuck up in bed and sleep peacefully. But this is when we worried about them the most.
The most heart-breaking of all of this though will always be the inability to unite families with their loved ones in their time of need. I cannot imagine the worry and fear this must cause, despite our best efforts to keep in touch by phone or video call. Dying and death are so steeped in our social rituals and traditions. Not being able to be there with them, and not being able to accompany other family members during funerals and the grieving process will, I’m sure, leave many lasting scars. Families just hoped we could get their loved ones through the illness until they were able to be with them again, come what may. We tried, we really did.
Meanwhile, on the other side of the glass door separating us from the outside world, we could see many others working equally as hard. Deliveries arrived; a constant stream of clean linen, more scrubs, boxes of PPE, equipment, food for patients, food for staff, medical supplies, gifts for Rosewood from neighbours and industry colleagues, all of which we were using as fast as they arrived. More staff arrived, ready for induction in to their new roles as receptionists, cleaners, administrators, or to receive training on the use of PPE in preparation for work within the clinical areas. Beyond that, there were security guards who stood alone on the footpath in 10-hour shifts.
Unseen but greatly appreciated, was the Canterbury DHB Emergency Coordination Centre (ECC) team that coordinated us all and devoted themselves to ensuring the smallest details were accounted for. I cannot begin to imagine the mammoth task of staffing and operating an aged care facility in the throes of a pandemic, and all from afar. But what I can say is that I’m deeply grateful to each and every person who sorted their piece of this giant puzzle and kept us all safe. The residents at Rosewood may be elderly with many suffering advanced, long-standing illnesses that render most unable to communicate, but they still delight in their favourite music or their favourite meal. They could still let me know where to stick my thermometer when they were tired of being poked and prodded. They were once soldiers, teachers, mothers and athletes and they still matter deeply to their families, to the Rosewood staff and to those of us who only met them briefly. I will be forever grateful to, and proud of, all those who honoured these people by going above and beyond the call of duty to do everything possible to care for them.
I am also humbled by the continuation of care for those of us who stepped in and out of Rosewood. I received phone calls and multiple emails from ECC staff preparing me as best as possible for the role (although in truth, it was more intense and heart-breaking than I could have possibly imagined), as well as phone calls and emails from occupational health now that I have finished my work there; making sure I am ok and that I am clear about the services available to me and what is required in the weeks ahead as I return to my usual role. Having unrestricted access to a full range of PPE during my work, as well as health assessments and swabs on completion, has been a significant psychological support throughout, and has enabled me to feel confident about my safety at work. One less thing to worry about in this extraordinary set of circumstances. Thank you.
I would also like to acknowledge the often unsung heroes of our health system; the staff working in aged residential care. Without knowing anything about the residents when I arrived, it was still very obvious that these people were not just well cared for, but loved. The little messages left around the place signalling to others that ‘Bob’ likes fruit with his Weet-Bix but ‘Nancy’ hates mushy carrots, the smiling faces in photos on the wall of outings with staff. I know they were deeply distressed by having to leave their patients, heart-sick when hearing from afar about the devastation COVID-19 was wreaking on those they consider family, and completely lost when returning to a workplace so unrecognisable and with many missing faces. For sure we will have put things in all the wrong places and missed filling in a few forms, but we did our best to replicate their love and care of patients in their absence. The smiles from patients on their return told us they were greatly missed though.
No doubt it will take a long time for the Rosewood community to pick up the pieces and move forward. I hope we will all continue to offer them the support and resources they need.
With my most humble gratitude for all the mountains that have been moved by many in recent weeks,
Regional (South Island) Programme Facilitator – Palliative Care South Island Alliance Programme Office
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 →
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.”
It was only about 80 years ago when communities all over the world were much more familiar with Death and Dying. This was before antibiotics, modern surgical techniques and lots of medical technologies had been invented. Now Death and Dying are not so obvious and it is not uncommon for 30+ year olds to have never been to a funeral before in their life.
Even now, Death and Dying are still D words that are avoided by many clinicians as they try to ‘protect’ their patients. Who are they really trying to protect? Themselves?
Other D words could be:
These were some of the D words that came to mind while listening to this podcast:
Despite being a Melburnian, I must admit that Sydney really is an irresistibly beautiful city when the sun comes out, especially by the water. The 44th Clinical Oncology Society of Australia (COSA) Annual Scientific Meeting was held in the newly renovated International Convention Centre in Sydney between 12-15th November 2017. With the sunlight streaming in through its many windows, reflecting off the waters of Darling Harbour, it really was the perfect place to be at the beginning of summer.
I attended the pre-conference workshop on cancer supportive care, which was organised by Judith Lacey, a palliative medicine specialist at Chris O’Brien LIfehouse. The whole-day workshop featured an interesting mixture of passionate speakers promoting a range of complementary treatments including medicinal cannabis, massage and probiotics; alongside others examining the evidence base for acupuncture, reviewing current clinical trials and prescribing pathways, and comparing different funding models for supportive care. It was a long but worthwhile day that set the mood for the rest of the conference. Continue reading →