About soniafullerton

Palliative physician, internet addict, mum of three.

Palliative care for patients with Parkinson’s disease

I often work in a palliative consultation service, and we are seeing more patients with chronic neurological conditions like Parkinson’s Disease. Parkinson’s disease is a progressive neurological disease that causes tremors (shaking), slowness of movement and stiffness. It can cause changes in facial expression so that people look expressionless. and changes in handwriting and speech too. We have to be careful not to prescribe medications that can make things worse, like for example, we currently give Metoclopramide (maxolon or pramin) for nausea but we need to avoid this medication in a person with Parkinson’s Disease.

Tanja Bahro and the team from the Southern Metropolitan Palliative Care Consortium in Melbourne Australia conducted a survey and found that palliative care clinicians wanted to know more about caring for patients with PD. Not being able to find a guide, they wrote their own! Please email Tanja for a copy tanja.bahro@smrpcc.org.au. They’ve had great feedback from users.

Tanja, tell us about your resource:

“Parkinson’s Disease – Issues for the Palliative Care Team” is a practical resource for people working in specialist palliative care, who are caring for people who are dying both with and from Parkinson’s Disease (PD). It was developed by our project officer Lee-Anne Henley with the great help of Dr Jim Howe, a very experienced neurologist in the area of progressive neurological conditions and palliative care, as well as Robert Wojnar, a pharmacist at Cabrini with a special interest in PD. The resource explains the main issues for people with PD at end-of-life and describes considerations and solutions. It also includes a practical care plan on which we have received some excellent feedback.

What gap did you see that lead you to develop it?

Because of the long trajectory, it is difficult for a health care team to know when people with PD should be referred to palliative care. A lot of PD patients also enter a nursing home and then at times lose contact with their neurologist. This can result in people not being referred to palliative care when appropriate and missing out on a multidisciplinary approach to care when the neurologist is no longer involved. Medication management can be difficult with PD patients, as some medications need to be continued to keep the patient comfortable but might also interact with medications commonly used for palliative care. We undertook a survey of palliative care staff and found that people wanted to know more, so we tried to find clinical guidelines or similar resources. When we couldn’t find anything we thought we’d better develop something ourselves!

How will it help patients and clinicians?

We hope to achieve greater awareness of appropriate referral to palliative care and we’re working on that. With the resource, we anticipate that palliative care clinicians will liaise more with the neurologist— they now have a simple and comprehensive guide to the main issues for people with PD and can therefore act quicker and prevent some of the pitfalls. Our next project is to adapt the resource for the residential aged care sector, but that’s more complex because we must take into account that the clinicians there might not have specialist palliative care knowledge.

How can people get the resource?

We want to make sure that we distribute the resource only to clinicians with experience in palliative care, so we haven’t put it on our website, but pc clinicians can just contact me on tanja.bahro@smrpcc.org.au and I’ll email it to them very quickly.

The Dame Quentin Bryce Palliative Care Nursing Research Fund – Applications are now open!

Applications are now open for The Dame Quentin Bryce Palliative Care Nursing Research Fund – a new funding opportunity created to support research into palliative care nursing. The funds are offered by the Centre for Palliative Care (c/o St Vincent’s Hospital) and the Department of Nursing, The University of Melbourne.

Existing scholarship holders are eligible to apply (though please check the terms and conditions of your scholarship before applying).

Applications close on 25th June 2022. Please see the website here for more information and send any enquiries to shs-research@unimelb.edu.au

Assistance for Australians with administrative tasks after someone has died

Honestly, the very last thing you want to do when you are grieving is wade through the piles of administrative work that’s needed after someone you love has died.

I remember after my mum died, doing to the Post Office to request that her mail be diverted to me. Are you the Power of Attorney? Queried a the young Post Office worker. Well, yes I am, but as the person has died, the Powers of Attorney have ended So you need to ask me if I am the Executor of the Estate.
Her: …..


Her: Are you the Executor of the Estate?

Me: Why yes, yes I am.

Or CItylink. Would not tell me why my mum’s owing balance was cos of privacy. But I wanted to pay it off and close it. Can we have a certified copy of the death certificate. OMG. If I paid you $50 would that cover it? $100? No, can’t say., privacy. Gah!

I have fortunately not had the need to use this new service https://deathnotification.gov.au/ but it is a fantastic idea and I look forward to hearing how it goes. The Australian Death Notification Service (sorry to our cousins over the ditch) takes on much of the administrative burden after someone dies for you, and it’s free. What a fantastic idea! It’s supported by all the States and various organisations.

Let us know if you use it or hear of anyone who’s used it.


Two online PEPA workshops for General Practitioners – 23 July 2022

PEPA have two workshops to advertise in your regions. Eventbrite is open for registrations.

Name of workshop: Palliative Care in General Practice

Day and date of workshop: Saturday 23rd July, 10.00am – 12.00pm

Venue: Online

Register at this link: click here

This workshop is for General Practitioners based in Victoria (Australia) who care for people with a life-limiting illness. Practice Nurses are also welcome to attend.


• Recognising patients who need palliative care

• Communicating about end of life issues

• Voluntary assisted dying in Victoria

• Assessing and managing common symptoms

• Advance care planning


Dr Rowan Hearn – Clinical Director Palliative Medicine, Calvary Health Care Bethlehem

Dr Rupert Strasser is a palliative care specialist and geriatrician, with Calvary Health Care Bethlehem. He is passionate about providing excellent clinical care for all. Rupert’s clinical interest includes palliative care for neurodegenerative disease.

PEPA is an accredited educator with RACGP (workshops are eligible for category 2 CPD points)

Date: Saturday 23rd July 2022

Time: 10am – 12pm

Online – a WebEx link and guidelines to access will be provided prior to the workshop date.

Workshop Pre-requisite:

To maximise learning PEPA offers 6 online GP learning modules. These modules have been developed by palliative care experts and reviewed by clinicians with extensive palliative care experience. They can be accessed by setting up an account at the PEPA Palliative Care Education and Training Collaborative: https://palliativecareeducation.com.au/

PEPA is an accredited educator with RACGP. Workshops are eligible for Category 2 CPD points


PEPA Administration – E: pepa@svha.org.au

Margarita Makoutonina, Calvary Health Care Bethlehem

M: 0425 774 195

E: Margarita.Makoutonina@calvarycare.org.au

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Partnering with consumers to improve palliative care

The video for the November PCRN Forum on “Partnering with consumers to improve palliative care” is now available!


This discussion with Stacey Panozzo, Joanne Britto, Christine Hofmeyer and Avi Paluch reflect on opportunities for consumer and community involvement (CCI) in palliative care and share a new program of work that seeks to explore, develop and implement a program to enhance CCI in palliative care in Australia.

The purpose of the Palliative Care Research Network (PCRN) is to foster the evolution of collaborative scholarly inquiry in #palliativecare in Australia. The PCRN is leading a program of research that focuses on consumer engagement, which seeks to enhance consumer and community involvement in palliative care. Learn more about the PCRN here: https://pcrnv.com.au/

Hot Topics Webinar – In Sunset’s Glow – Life, Death and the Older Person 

October 2021 – In Sunset’s Glow – Life, Death and the Older Person 

This webinar is produced by the team at the Centre for Palliative Care in Melbourne, Australia and features Dr Lisa Mitchell.

A misperception common to both palliative care and the care of older people is that our work is all about dying. 

This talk by Dr Lisa Mitchell dwells firstly in that intersection, addressing questions about where, why and how older people die and the role that recognition of dying and Advance Care Planning have to play. We examine the findings of the Royal Commission into Aged Care Quality and Safety and how ageism impacts on provision of care (including palliative care) for older people. Ending on a lighter note, we look at some of the interesting work that is emerging in Geroscience and how we can reimagine ageing in ourselves and others.


Photo by Pixabay on Pexels.com

Cancer patients can’t believe everything they read

The stream of information about cancer treatments and cures can be overwhelming. Articles in the media such as the Guardian describe new miracle cures. It’s hard to know what to believe. This article is a good example of how media interpretations of scientific papers can be misleading for patients and families.

Read more here

Glen’s resources about caring for a person with dementia

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Dementia Carer-  Tips from a Mentor  Carer Fast Track® Series Books 1-11 Compiled

Preface   ISBN: 978-0-6488198-9-9  

This series of eleven booklets presents new perspectives on being a carer for a person with dementia.  These are practical tips and insights not published before.  Each 10-minute booklet is designed to fit within the limited time resources of busy carers.


“…some really cool bookletsShort, Sweet, Concrete”

Rita A. Jablonski, PhD, CRNP, FAAN, FGSA
Professor, School of Nursing

University of Alabama.

“These practical tips have been road-tested by many other carers… I commend them to you.”
Professor June Andrews RMN, RGN, FRCN, OBE

“your booklets are brilliant. Really informative, and you write so logically making everything easy to read.” Christine, UK.

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Thank you again Glen for sharing your wisdom

Dear Palliverse Community

Five years ago, I started a Palliverse discussion with a contribution about my role as a carer for my wife, Carole with dementia. Carole died in 2019 when her cognitive abilities were no longer sufficient to maintain the routine function of vital organs.  So Carole literally died of dementia which is not very common.  Many patients die of injuries or comorbidity factors.  We did the whole journey together.
I resolved to write booklets to help other carers in the various stages of dementia.  To have this done and published while memories were fresh, I gave myself a year (and used almost all of it). I published eleven brief booklets on Amazon in 2020.

1.     Dementia Caregiver Survival 
2.     Tips For Newbie Dementia Carers 15 
3.     Tips For Communicating 28 
4.     Diagnosing Dementia 38 
5.     Take Genetic Testing? 61 
6.     “I’m FINE!” Coping with Anosognosia 68 
7.     Managing The Rage Stage 73 
8.     Selecting a Dementia Residence 89 
9.     Managing Dementia Placement 97 
10.  Coping with End of Life 107 
11.  Picking Up The Pieces 121 
12.  Manejando la etapa de la ira. Libro 7 de la serie 134 
13.  Bien gérer les accès de colère  Volet 7 147 
14.  Dementia Carer-  Tips from a Mentor (the compilation of 1-13)   This book 

I was born without my share of the Mother Teresa gene, but I learned a lot along the way and became a mentor on an international carer support forum.  The booklets have been well received by carers, and professors of nursing wanted a compilation for use in education. The compilation is now used in nursing degree courses in USA, Canada and UK. In 2021, the compilation has become a teaching resource in Australian tertiary studies.

I should pass on to practitioners some observations I recently made to another carer, a Kiwi to whom I am a mentor.
“The thing I continue to find remarkable is the reception of the booklets by leading practitioners.  These booklets were written simply for fellow carers.  They are brief because carers have little time.
“The compilation was a hasty afterthought when the booklets first caught the eye of a nursing professor. It made no attempt at continuity or de-duplication or any kind of rewrite… just a stack of booklets under a title !”

Your enthusiasm is very flattering to me.  The simplicity of expression in my booklets was intended originally to reach fellow carers.  It results in reviews like ‘raw’ and ‘frank’ and I guess it makes these resources stand apart from professional and academic literature on these subjects.You generously noted they are practical and experienced.  Those are the attributes that appeal to other carers and that is where these booklets are truly innovative.  Some ideas here have not found expression elsewhere in any form at all.So I am most grateful for your endorsement to some colleagues and I hope to continue to contribute.
If you can forgive the literary shortcomings and the blunt presentation, I believe you will find more practical help and support in these booklets than elsewhere.  I offer this resource (Word file attached) for use by Palliverse community members and for referral to carers of persons with dementia. The link follows to the publications from Amazon.



Cancer patients can’t believe everything they read

The stream of information about cancer treatments and cures can be overwhelming. When the Guardian describe new miracle cures. It’s hard to know what to believe. This article is an example of how biased interpretations of scientific papers can be misleading for patients and families.

Let’s find out if this new cancer treatment can wipe out tumours in terminally ill head and neck cancer patients as claimed.

A cancer patient on the trial, Barry Ambrose, 77 is interviewed. The cancer in his throat was no longer detectable after his immunotherapy. He is delighted.

I looked for a link to the original randomized controlled trial. Eventually I managed to find the paper in the medical literature. But surely, I had found the wrong paper? This paper had a different conclusion, that there was “no improvement in survival” with the new immunotherapy treatment. How can this be?

The Checkmate 651 trial asks : if you have a high-risk cancer of the head and neck, is immunotherapy or standard chemotherapy a better first treatment?

947 patients were randomly put into two treatment groups – half had immunotherapy and the other half chemotherapy.

The people having the new immunotherapy treatment did not live longer than the people having the old chemotherapy treatment. The study did show a couple of differences in treatment group outcomes. The immunotherapy sub-group lived for a median of 17.6 months compared with 14.6 months in the chemotherapy group, but this three-month difference might have happened by chance according to the statistical analysis. More people were alive at 2 years after immunotherapy in a subgroup (26% compared with 16%). The immunotherapy treatment, if it worked, worked for longer at 33 months compared with 7 months.

The main author of the study Dr Argiris is here speaking about its results.

The study is at risk of bias because it’s paid for by the drug company that benefits if it is successful. It did not show that immunotherapy is superior to chemotherapy, despite the Guardian headline. It did show that immunotherapy has fewer side effects than immunotherapy – but we already knew that from other studies. In a subgroup of patients, those having immunotherapy died a median of 3 months later but this result was not strong enough to meet the criteria for being statistically significant, meaning it could be a chance result. For those who did respond to immunotherapy, though, it was a longer time before their cancer came back.

It is so important for patients with cancer to have a good understanding of potential treatments – both their risks and benefits. This enables the person to make good decisions about their medical treatments.

Can this “new cancer treatment … wipe out tumours in terminally ill head and neck cancer patients”? Sorry, not enough evidence to claim that. The treatment has fewer side effects and if you respond to the treatment the beneficial effect lasts longer.

If you find information about a new treatment, discuss it with your oncologist and see what they think. Unfortunately, we can’t believe everything we read about new miraculous treatments.