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.
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
TITLE: Development of a core outcome set for effectiveness trials of interventions to prevent and/or treat delirium in palliative care (Del-COrS)
We are currently looking for volunteers including: patients, family members, carers, healthcare professionals and researchers with experience of delirium in palliative care.
Participants would complete two online surveys to establish their views on the outcomes that are important to include in future studies of interventions to prevent or to treat delirium in palliative care. We will subsequently invite participants to a meeting to discuss the findings and vote on outcomes they consider important.
Our goal is to develop international consensus on a core outcome set for research studies of treatments within a palliative care setting to prevent, and/or treat delirium.
Researchers look at the effects of potential treatments on patients by measuring an ‘outcome’. For example, in a study of how well a new delirium treatment works in a palliative care setting, an ‘outcome’ might be: whether a person hurt themselves because of delirium.
When a set of main outcomes has been agreed for a health condition, it’s called a ‘core outcome set’. This would allow all studies of delirium in palliative care to be compared and combined.
Please contact Dr Anna Bryans (Research Team Member) at email@example.com if you are interested in participating and pass on this information to anyone who may wish to take part.
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 cluster randomised, multi-site study was lead by Prof Peter Hudson at St Vincent’s Hospital in Melbourne. It examined results from around 150 control and 150 intervention patients and caregivers.
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.
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