|Opportunity for Australian members: $2,000 National Palliative Care Award – Nominate now!|
|Dear Australian readers,|
Do you have an hour or so this week to take the time to recognise someone who has made an important contribution to palliative care? Award winners are eligible to receive $2,000 (for individual awards) or $4000 (for team awards) to go toward professional development.
This year there are four new awards with the aim to recognise a broader range of people, including the work in Aboriginal and Torres Strait Islander communities, generalist areas, community-based care, and Paediatric palliative care.
The form will roughly take 20 minutes to complete. The person nominating will need to gain approval from the nominee and document whether this person has received an award in the past.
There is a 5000 character written piece that needs to address the criteria of the particular award which can be found here –
There are now 11 award categories
Excellence in palliative care-rural and remote
Excellence in palliative care in an aged care setting
Outstanding achievement by a volunteer
Excellence in palliative care-Paediatric Palliative Care
Excellence in palliative care-Community Based Care
Excellence in Generalist Palliative Care
Excellence in Aboriginal and Torres Strait Islander palliative care
Organisation/ Team Awards
Outstanding Teamwork Award
Innovation in Palliative Care
Please help PCA and ANZSPM celebrate our heroes.
Research Fellow, Palliative and Supportive Care
HammondCare is looking for a post-doctoral researcher, who has a passion for research which can improve palliative and supportive care. Working within the Centre for Learning & Research in Palliative Care, the Research Fellow provides high level support for the research effort in palliative & supportive care across the organisation.
This role offers a post-doctoral researcher an excellent opportunity to develop their research skills, experience and track record within the themes of palliative and supportive care.
- Position based at Pallister House, Greenwich Hospital.
- Part time (0.6 FTE), flexible working arrangements. Three years fixed term position.
- Provide high level support for research in palliative and supportive care
Closing Date: 1st August 2021
For further information about the role and the information pack can be found at https://www.hammond.com.au/careers/current-vacancies/RF-NSW
For enquiries please contact Prof Josephine Clayton, Director, Centre for Learning & Research in Palliative Care, HammondCare on email@example.com
Hot topic webinar by the Centre for Palliative Care
Management of NIV in MND & elective withdrawal of ventilation
4:00PM – 5:00PM Wednesday 30th June 2021
Motor Neurone Disease (MND) is a fatal neurodegenerative disease affecting some 2000 Australians. Average life expectancy from symptom onset is around 30 months.
Patients show different clinical phenotypes and rates of progression. Death usually results from ventilatory failure secondary to progressive respiratory muscle weakness and can be complicated by aspiration and respiratory infection. Offering respiratory support through non-invasive assisted ventilation (NIV) is considered best practice and can improve quality of life, symptoms and survival in selected patients. Patients usually begin using NIV overnight to improve sleep and daytime wellbeing. Over time, most will use it increasingly across the day, with some becoming NIV dependent.
Some patients who are dependent on NIV may ask that it be stopped. This is their right. It is not assisted suicide or assisted dying, it is withdrawal of medical treatment. Withdrawal of ventilation needs to be thought through and carefully discussed and planned to ensure that the patient is comfortable throughout the process and both staff and family/carers are supported.
This presentation gives the opportunity to hear from and ask questions of specialists in Neurology, Respiratory Medicine and Palliative Medicine about the management of NIV in MND and elective withdrawal of ventilation.
Join Team Palliverse for #CrazySocks4Docs day on Friday 4th June 2021!
We will be wearing your craziest socks & hosting a zoom chat to shine a light on the mental health of palliative care doctors, nurses, allied health professionals, researchers, educators, managers & leaders. COVID-19 has made it harder for all of us trying to do our bit for palliative care – those working on the frontline, behind the scenes & on the home front. So to misquote Timothy Leary for our pandemic generation – let’s all “turn up, zoom in & chill out”!
- Grab a well-deserved drink / generous amounts of chocolate / cuddly animal or doona & settle into a comfy chair / snug beanbag / cozy bed around 8pm NZST (New Zealand) 6pm AEST (Sydney / Melbourne / Brisbane / Canberra) / 5:30pm ACST (Adelaide) / 4pm AWST (Perth) on Friday 4th June 2021
- Pick up your laptop / tablet / phone & punch in / click on / head to: https://usc-au.zoom.us/j/89540252267
- Be excellent to each other while catching up with old friends, making new ones & chatting about anything, everything & all things palliative care & self care!
The Palliative Care Advice Service is a phone-based service for people in Victoria, Australia, seeking access to specialist guidance and advice. It offers an advice service for those living with a life-limiting illness and those who support them. The service is for family, friends and neighbours as well as all healthcare workers.
Specialist nurses and doctors provide information about serious illness and symptoms, being a caregiver and the palliative care service system.
For healthcare workers, it offers guidance about prescribing, symptom management, locating appropriate services and decision-making.
The Parkville Integrated Palliative Care Service at The Royal Melbourne Hospital runs the service from 7am – 10pm, seven days a week. The Advice Service is free, confidential and available for everyone in Victoria.
To contact the Palliative Care Advice Service you can call 1800 360 000 or visit www.pcas.org.au for further information.
Offering a structured family meeting conducted in a hospital setting for patients with advanced disease receiving palliative care may be helpful in reducing family caregiver distress and enhancing their sense of preparation for the caregiving role.
The purpose of this study was to assess the effect of structured family meetings on patient and family caregiver outcomes and to determine the cost-benefit and resource implications of implementing family meetings into routine practice.
Family caregivers in the intervention group had significantly lower psychological distress scores and higher preparedness scores two weeks after the intervention, but the scores were not significantly different two months after the patient died.
The family meetings in intervention participants were structured according to published guidelines and tailored to the needs of the patient and family.
In summary, the guidelines incorporate:
(1) principles for conducting family meetings;
(2) pre-meeting procedures, such as liaising with the patient/family and prioritising issues;
(3) deciding who needs to attend the family meeting;
(4) a procedure for conducting the meeting; and
(5) strategies for follow up after the meeting; including phoning the primary family caregiver 2 days later to discern if discussion and actions arising from the meeting were helpful.
What is already known about the topic?
A family meeting (also known as a family conference) is a clinical tool for healthcare providers to facilitate communication and care planning with patients and their family caregivers.
Whilst these meetings are considered integral to palliative care they are commonly not provided systematically, nor according to best available evidence.
Implications for practice
Hospital staff should consider conducting a family meeting as soon as feasible after admission of a patient with advanced disease, or referral to the palliative care team where resources allow. This is commensurate with guidelines and standards for family support. It is also in keeping with the concept of ‘early’ palliative care for which there is a growing evidence base.
Click on the following hyperlinks if you fancy a read or a quick listen:
Keep washing those hands and social distancing.
Take care and have a great weekend!
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
The team at MD Anderson ask
Are you a #palliative care provider who prescribes opioids, performs opioid rotations and conversions? If so, please take our 5-10 minute survey to help us with our study. #HPM #HAPC #PALLONC
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
[This article was first published as “Reflections from Rosewood” on the South Island Alliance website in May 2020. Reproduced with permission.]