Farewell Virginia

Virginia passed away at Calvary St John's Hospital on our Gibson Unit.

on the 18.10.2016

Virginia touched all of our lives.

Thank you Virginia for your generosity of spirit. We will not forget the privileged place you gave us in your life. We give thanks to you and to your family. You will be greatly missed.

Rest in Peace Virginia

Below is the speech written by Hon Michael Ferguson and delivered by two of our St Mary's program participants Nadia and Madison at Virginia's funeral.

This is a tribute to the life of Virginia 

Firstly, I would like to acknowledge Virginia's family for inviting me to offer this tribute, according to Virginia's request. I thank the students from St Mary's College for delivering it in my absence - which as you will soon understand, is actually very appropriate and a blessing.

From the outset I must say that being asked to eulogise a person whom I have only met once is obviously very unusual! As I considered this request, thoughts immediately turned to the unique but very important circumstances in which I had the honour to sit, listen and talk with Virginia and came to know her.

This deeply significant meeting occurred on a bright and sunny winter afternoon in June at St Mary's College. This rather special gathering was the meeting of an archbishop, palliative care experts, nurses, educators, students, a health minister and (the somewhat central person), Virginia - our palliative care patient.

What could bring such a group together?

It seemed, that what brought us together was the certainty of death. That is – death; how best to prepare for it and how to ensure the death that will come to each of us is as good a death as possible.

As a community, we are getting better at understanding that the person approaching the end of life deserves complete respect, compassion, care and the relief of discomfort and pain. The valuable work of Palliative Care Tasmania has done so much to help people and their loved ones better understand their options and to make informed decisions early on. In turn, our health system is improving the way that end of life care is given. Including listening to patients, helping them to receive the best care. This is whether it's in the hospital or in the home. Whether it's to fight disease to try to extend life or to aim for quality of life and focus on comfort and relief. And it's so important for the next generation of health care professionals to learn these important lessons as early as possible too.

But all this important work is of limited value if we exclude the patient, or to put it more correctly, the PERSON, a real person who understands what it is to experience the palliative care journey first hand.

Death and dying is a difficult enough subject at the best of times. So finding a person with the inner strength and generosity of spirit to participate with complete strangers and intimately share their journey, hopes and fears is perhaps a challenge.

Who better than Virginia de Groote to do such a thing then?!

Remarkably, the young ladies from St Mary's and Guilford Young Colleges had been given this privileged opportunity to spend time at Calvary's Gibson Unit listening, learning, questioning and growing. Students were witness to true bravery and loving compassion as a caring community went about their work supporting patients.

There is a video that was produced, which is proof of the impact that Virginia, Calvary staff and Palliative Care Tasmania had, not just on the students but in fact on each other. I really commend the video to those here today.

But there was certainly more that came out of this than the video. The young ladies came to better understand the subject matter, and the career opportunities. They also developed innovative thinking based on an old fashioned value of respecting and honouring our elders - a value greatly treasured by the college, the hospital and me also.

And of course these students made a friend. Virginia.

As did I in our short time together and a delightful and colourful conversation about politics, the health system and life generally after the gathering.

At this time I express my gratitude to have known Virginia and to have been able to share a tiny but unforgettable part of her journey with her. She made an impact on me and I feel humble to have learned from her brother Pat that I had an impact on her. Little did I realise that my words on the importance of a family's need to grieve, celebrate and say goodbye at a funeral like this one had an effect on Virginia. Honestly, this humbled and surprised me. It's just another gift our friend gave.

I believe, and I'm sure the young ladies will agree, that what Virginia did by opening up her life and sharing the journey with us was in fact a generous and selfless gift. It was a gift for the living. It was a gift of life because it endures to this day and will enrich more people into the future.

Others who knew her much better than I will have many more memories. I certainly know that her life made a difference. As it turns out, her life will also make a difference to some people who didn't even know Virginia but will one day have to travel their own difficult journey. I believe that more people will receive understanding, comfort and care of our future health professionals who will carry the gift that Virginia gave as a living heirloom that will keep on giving.

And so it was never really death that brought this group together on that bright winter afternoon. It was life. Virginia, her love for people, her zest for life and making the most of every day she was given.

Rest in peace.

MICHAEL FERGUSON, MP

MINISTER FOR HEALTH

THANKS

Hi all - well a month after our launch by the Tasmanian Health Minister Hon Michael Ferguson  I am pleased to let you know that over 2000 people have viewed the blog and we have had an incredibly positive response to the program.

Personally I want to thank everyone who has been involved in bringing this community engagement project to life. It has and continues to make a difference. The survey results for the program were incredibly positive and affirming. Programs such as this make a difference. Calvary hope to run a similar program in 2017 with new people and leaders. For information about this please contact Calvary Hobart Executive Office.

On a personal note, on the day I first viewed our DVD I found out that my Mum was diagnosed with a terminal cancer. It has been an incredibly difficult journey for our family. However, because of my involvement in this project and the fact that Mum and other family members had been engaged in what was happening with our program I have found dealing with some of what we have had to deal with less confronting. Mum had been watching the progress of our project from the blog and we had been talking about many of the topics we looked as during the course of the program, all before her diagnosis. It is as though we as a family were being prepared for the journey that we are now on.

At the heart of this project is the aim for people to have less fear around death and talking about death and dying so that they can embrace a more fully human and positive attitude to living. I know this aim has been fulfilled with me. Thank you everyone and may your quest in this space continue to be challenging and life affirming.

Over and out for Calvary Hobart Exploring Death, Dying and Palliative Care 2016

DVD Launched

The DVD has now been officially launched. A large crowd gathered at St Mary's College in Hobart on the 29th June 2016 to commemorate the project's completion.

The Video can be viewed here:

https://www.calvarycare.org.au/blog/2016/06/29/launch-death-dying-palliative-care-dvd/

DVD Launch Date - 29th June 2pm St Mary's College Hobart

Today I watched the final edit for our documentary, it is so exciting and an enormous body of work that we are looking forward to sharing with everyone. Mr Michael Ferguson, our health minister will be launching the 13 minute DVD at St Mary's on June 29th at 2pm. We hope that many community members, family members and particpiants can attend. I am really proud to be part of this exciting project and to see all your work come to life.

Student Responses

How rewarding it was to read and view the very meaningful and thoughtful responses I have received from you so far. It is so affirming for Calvary that you have obviously learnt and grown from our program. Some comments and snippets from the responses are below. Please feel free to email or post other comments and responses or share your work.
THANKS EVERYONE

"Before I went to Calvary Hospital, I was so scared to talk about death with my family members or just my friends. I have learnt that it is OK to talk about death because everyones time will eventually come.The picture of the tree, especially at the bottom shows how uncomfortbale  I was going to Calvary because I thought that everything was going to be depressing. As the time went by, my tree began to untangle itself with guidance from the teachers and the staff at Calvary. I felt free and comfortable to talk about death. I have learnt so many things that I didn't know about and that is what the leaves on my tree represent. My tree is flourishing in this knowledge. Thank you for a great experience."  Innocent Michael

"This course has definitly helped me prepare myself for an eventual death that I know is coming"
Lucy Bauermeister

"To me death, dying and palliative care can't be anything but personal. ..For me I experienced this recently with my dad and it was very full on. We never really got a break from the medical environment because we had to surround ourselves around it, hospital life became our home life not only for my dad but for the whole family. I feel that this course outlined death, dying and palliative care in the best way you could when it comes to explaining this topic"  Brianna Pirere

"No-one knows what it is like to die, but what we do know is that there is a way that you can change your mind set about end of life... We can choose to accept death and see it as something beautiful or we can remain scared of death and wanting to avoid it"
Emily Vince

 "Watching the patients at St John's really inspired me to write this, along with the health care team that assisted throughout the ward. Seeing Virginia and what she had to go through, was also an inspiring experience. She was a positive person who didnt mind at all being treated, because she knew she was in the right place. She also inspired me." Madison Car

The piece I have drawn and written shows how talking about death/dying does not have to be a "hush/hush" topic. That it is OK to talk about it. There is no need to feel awkward or scared about bringing up the conversation. People need to be educated and have a better understanding of Palliative Care. The conversation needs to happen, no matter how hard it is. The more knowledge people have the easier it will be on the individual and families" Nadia Dandolo.

- painting by Lauren Baker

A sewing response!

The month after my family moved to Tasmania in 2010 my Nanna, Theda Witter died. Nan was my Dad's mum, she was a stylish and at times formidable woman who loved the finer things in life including opera, red wine and pearls! Interestingly, Nan was quite a contradiction as partnered with her luxurious taste were her serious frugal tendencies. Like many women of the depression Nan hated waste, of any type. She was an amazing home cook and also a magnificent sewer; upcycling anything she could,  as nothing, well nothing much was ever thrown out. In their 1950s home in Carlingford they had a magical sunny room upstairs dedicated to sewing. I have very vivid memories of sneaking up to this sacred room, drawing open the green curtains and riffling through her haberdashery and material delights with my sisters. My Nan's husband, my Pop, was a self made entrepreneur who was a charming and charismatic man. He made a living amongst other mad ventures, by selling recycled clothes and rags with his company Witters Australia which my Dad later ran. While second hand clothing and "the factory" were not a passion for my Dad, Witters was a fantastic business which as well as funding our family, was a source of great pride and joy for me and my siblings. We, along with Mum grew up loving second hand clothes. Sorting bags of rags was a fabulous past time for us and for periods in the 1990s fuelled a Glebe Market stall for the Witter kids. These throw-outs from Sydney were treasure troves of sometimes smelly and sniffy but always potentially magnificent and highly prized pieces. I still get a shiver of delight rummaging on $5 tables at second hand clothing markets, searching for that not so elusive bargain.

My response to the project has been to rekindle and weave some of these memories of my Nan into my Tassie life. Soon after we started the project I got out a sewing machine that was new but unopened in its cerise Husqvarna box. Not since school have I sewed a stitch. Inspired by memories of my Nan I started sewing, nothing major just bits and bobs using my husband Andrew's old shirts. It appears that like my Nan I also hate waste, and love to upcycle. I had never thought we were similar but I must say through this project I feel her genetics or memories or fragments of her life ebbing in me. When I told my elder sister Jane what I was doing she said she had salvaged some fabric from the magical Carlingford sewing room which I could have. With the sewing machine, fabrics and old materials and tablecloths that I have been accumulating for years I have set up my own "sewing room". It is not as sunny, but it is starting to feel a little magical. I can sneak away to the room and sew, or dream of sewing, or sometimes just sit at the sewing machine. As part of my response to the project I have made my two daughters: Beatrix and Florence a skirt each, made from some of the remnants that my sister gave me. As I sat at the machine stitching away I smiled and laughed at how much free and whimsical joy I was getting out of making little gathered skirts for my daughters, in honour of my Nan.

Part II Update

I was excited to hear from Ms Wong this week who said the participant responses are coming along and are impressive. I'll be going to St Mary's on the 9th May to collect them. As for our DVD we have done the last piece of filming. Dave and Rob from our Hype team are busy cutting and editing to make our doco! I can't wait to review the takes. I'll keep you all posted.

I was in Gibson this week and saw Virginia she was keen to hear how you were all going and our date for showcasing the works. At this stage we will look at early June.

The surveys have been coming in with really worthwhile feedback. I hope to share this in early June as well.

Be good to catch up on the 9th I can't wait to see your responses.

PART II - WHAT DO WE ALL NEED TO DO

RESPONSE: DUE APRIL 27th to MS WONG

Before Starting Your Response:

1. Think over the 6 weeks of learning and experience at Calvary St John's, what do you keep thinking about? What has changed in you? What conversations have you had?  
2.  Read through our blog
3. Watch the video diaries
4. Review your journal


Starting Your Response

1. Choose a method that will help you to express how you felt about the course and in particular the topic of death, dying and end of life care issues.

Some suggestions:

• Writing a journal reflection piece
• Creating a PowerPoint
• letter to someone
• Creating a collage from magazines, postcards, photos
• Drawing
• Painting
• Photography
• Collecting photos of your life
• Music
• Sewing
• Cartooning
• Videoing
• Interviewing people and recording what they say on paper or on video
• Writing a poem
• Decorating your journal
• Mixture of any of the above
• Something else altogether

The Creative Response

2 things you need to do:

1. Using any method you like (maybe a suggestion from the list above)  create something that is your own response to the experience and learnings from our course on Death, Dying and Palliative End of Life Care.

2. Include with your Creative Response a piece of paper with your name and a short paragraph which explains what the piece is and what it means to you.

ENJOY

PART II - Unlocking our creativity

Yesterday we had a 2 hour session about unlocking our creativeness in order to  help us develop a response to our learnings from Part I. I think we are all a little apprehensive about what we need to do particularly those of us, like me who don't feel they are creative. Bradfield was great in leading  this process and the session at St Mary's and helped us to free up our thinking.

I hope by the end of yesterday everyone felt that the "response" didn't have to be a burden and that we could instead, see it as a personal way to process our experience at Calvary St John's. I hope you enjoy this aspect. Please email me with any questions or concerns.
THANKS

Week 6, Video Diary

Update on Virginia

I was fortunate to visit Virginia yesterday and she was keen to update you all on her progress. She was still with us at Calvary but hoping to go home. Her health has improved and she was in good spirits. She was a little dissappointed that she has lost her hair again. Her son and grandson helped her with the buzz cut. I think it looks fabulous! I will see you all later today.

Reflection Question Week 6

This week will be our last week together for Part I of our journey. We will be joined by Colleen Johnstone from Palliative Care Tasmania and Anna Mackay from Hospice Volunteers as we look at the connections and supports in the wider community.

Reflection Question for this week:

What has surprised me in the course?

A message from Dr Dan

Hi all,

 

Dr Dan Fleming has sent through the youtube clip below for you to view and to reflect on how the clip links into what we were talking about with vulnerability?  

 

https://www.youtube.com/watch?v=itixiJmsLsM

Enjoy.

Video Diary Week 5

Ethics and Vulnerability

Yesterday's session helped us to reflect on how we as people and as a health care organisation respond to the vulnerabilities around us and within. It was a very thought provoking afternoon. Dr Dan Fleming lead the session, we touched on a range of topics including decision making, conscience, assisted suicide and euthanasia. I was left feeling very stimulated. So much to think about and much more to explore. I encourage you all to continue the discussions with your friends and family and to use your journal to draw out ideas.


For our activity this week we had a panel discussion and Q and A with Dr Dan. He was joined by Dan McNeill who is a member of the Calvary Consumer Group and who spoke to the group about his personal experience of vulnerability. Dan's wife has Cancer and has been treated at our Gibson Unit and as an in patient. She is travelling well at the moment but it is a challenging journey for her and her family. We were all touched by Dan's experience and the depth of his sharing. The panel also had Kate MacNicol from our Pastoral Care team. Kate spoke to the group about her experience as a suicide phone counsellor at Lifeline and the vulnerability in young people in this space. She highlighted the critical need for people who are facing these issues or have people in their lives who are, to reach out and get connected to support. Two places we can do this are Lifeline which has 24 hour phone support 131114 and Head space 62312927.

I can't believe we have one session in Part 1 left. I feel there is much more to explore.

Video Diary for this week on its way!

Reflection Question

Following our session on grief and moving into ethics our question for this week is:
1. Where have you seen or felt  vulnerability through the course, either personally or in another?

Tomorrow we meet Dr Dan Fleming from the Broken Bay Institute in Sydney who will help us explore ethics and vulnerability in health care. I am looking forward to listening and learning with you all.

CanTeen and Kindness Projects

We had a really important session on Thursday looking at grief and loss. It was lead by Sarah De Jonge from CanTeen. What I found really helpful was acknowledging the chaotic nature of grief and loss. There is no "one" path that we all go on, it is different for everyone. Grief also isn't only expereinced when someone dies, we ggrieve over a range of things: divorce, moving house, loss of friendship.




I found the suggestions about how to talk to people who are going through grief really useful. Bradfield did some creative cartoons that really captured this discussion.





If you or a friend would like more information about the free services CanTeen offers please go to their website www.canteen.org.au and for local enquiries 62005551 is the office number in Tassie.

Sarah ended the session looking at kindness projects and she shared her 1000 pocket hearts project which inspired all of us. Last year Calvary used some of the pocket hearts to give to family members of patients who had died.

The session ended with an activity that asked students to think about a kindness project they could start. We will revist this in Part II of the course which asks participants to create a response to their 6 week journey. Some students may choose to do a kindness project!

Here are the links to the kindness projects Sarah spoke about:

• Long Distance Love Bombs: http://www.longdistancelovebombs.com/

• 1000 Hearts: https://www.facebook.com/1000PocketHearts/?ref=hl (facebook) http://mobile.abc.net.au/news/2016-02-16/making-1000-hearts-to-spread-love-and-compassion/7171088 (ABC online article)


• Kindness Cards: http://wakeupproject.com.au/kindness-cards/

Week 4 Video Diary

ABC News Video - 2 minutes

TO SEE CLIP CLICK ON LINK BELOW

ABC NEWS CLIP

CANTEEN coming to session 4

This Thursday we will meet Sarah De Jonge from CanTeen who will lead an interactive session on grief and loss. We will also be joined again this week by Bradfield - so get your texta's ready!

ABC National News

Hopefully some of you were able to see the story on ABC News on Sunday night. We will put the story on our blog soon or you can go to the ABC ewbsite and watch the Sunday night news. ABC also ran an online News story - click on link below.

http://www.abc.net.au/news/2016-03-06/secondary-students-visit-palliative-care-patients/7219892

Thank you to everyone for your help in telling this story.

Video Diary Week #3

Session 3 review and reflection

How amazing it was yesterday to hear and learn from 63 year old Virginia about her experience of having a terminal illness. I think all of us were so touched listening to Virginia and then getting the opportunity to visit her in our St Johns treatment room. Thank you Virginia. We look forward to seeing you again in 2 weeks. 

We were also fortunate to hear from a panel of Calvary carers in the web of care. Alistair from Hotel Services, Hannah our OT and Kathy from Infection Control. So many people working together to ensure our patients are cared for. There is such diversity in the team and so many career opportunities in this field. 

Questions for Reflection?
1. What surprised you about Virginia's attitude and talk?
2. What did you learn in your small group interview about the people who deliver care at Calvary? 

The team from ABC News have put together a short story on our project, it should air on 7pm News Sunday.

Video Diary #2

Reflection question for the group following session 2

Something that I keep pondering after last week is ... if I found out I had a life limiting illness, what would my goals be? As I have been thinking about this I reflect that my goals would probably be about the quality of my life, how I spent my time and who I spent time with.

The reality of this is that we can actually work on the quality of our life right  now, we shouldn't wait for a life limiting illness before we set goals about how we want to live.

This week our reflection question is:

• What can you do in your life now, to improve the quality of your life?

I look forward to hearing your responses at the start of Session 3.

Death Literacy - What do the key words mean?

In our sessions we have been touching on all the different words we use in this space and it does get confusing. What is interesting is that in Australia the words and way we use them to understand the needs of people who are approaching and reaching the end of their life is changing. This is a reflection of the fact that we are increasingly focused on understanding the individual journeys people go on as they approach and reach the end of their life.  We prioritise how we as a team can make meaningful improvements in the quality of life for people, their families and their carers.

In the recent past we have referred to palliative care as simply an approach to care but in Australia as systems of care have become more sophisticated there is a need to be clearer about what services people require to support them and their families, and who will provide that care. Dr Carmen Halton's discussion made this clear to us today.

A useful way of thinking about this is using the following definitions:

•End of life refers to that period of time when a person is living with an advanced, progressive, life limiting illness.  This is likely to be the last year of their life.  This timeframe is useful because it allows enough time for individuals and their families to come to terms with their approaching loss and time for services to implement adequate support.  Clinicians can use simple tools to estimate when a person may be in the last year of life and help them plan to meet goals and choose care options.  

•End of life care is care provided to people approaching and reaching the end of their life. This care is provided by all health and community care professionals, regardless of where they work in health, community or aged care sectors.   

•Palliative care refers to designated specialist services provided by an interdisciplinary team of specialist palliative care professionals whose substantial work is with patients who are approaching the end of their life.  Palliative care specialists work with other care providers to support patients who have complex or difficult to manage problems and they form an important component of an integrated system of care.

Caring for people who are approaching or reaching the end of their life is everybody’s business.  

Session 2 - The Web of Care

This week was about meeting different members in the care team and focusing on the patient perspective in the web of care. We also had Bradfield Dumpleton with us, Bradfield cartooned the session in live time - which was really interesting and added another dimension to our learning.

It was great hearing from Anita Oakley who is a Calvary social worker and one of our 2 Cancer Care Coordinators. We learnt from Anita the importance of interdisciplinary team in the web of care and how critical it is to have effective communication between the care providers and the patient and family. 

We were privileged this week to meet Dr Carmen Halton who is a Palliative Care Specialist who works in homes, hospitals and wherever she is needed to care for her patients. Dr Carmen fleshed out the meaning of Palliative Care for the group and highlighted some of the recent changes in health care in this field.

Dr Carmen outlined her personal experiences  and thinking around what  good care for people at the end of life looks like. She shared an interesting observation, she noted that for many people in medicine and society death is seen as a failure which can make our ability to deal with death very challenging. How many times do we see people revived and brought back to life in tv programs? Grays Anatomy and the like don't do many stories on  "good" deaths.

The girls learnt in question time that the youngest patient of Dr Carmen's was 3 days old and her oldest was over 100. Dr Carmen spoke about how even people who are over 100 can have difficulty thinking  and talking about approaching and reaching the end of their life. In her experience people often are afraid of "the way they are going to die" and not so much death itself. In this health care space our focus is to educate and care for people so they have less fear and are better equipped to deal with what they are going through and can enjoy their life. Dr Carmen said that one of the hardest questions for many people to ask is "How much time Doc?". 

Dr Carmen helped us understand  the concept of goals of care and how important it is to support patients and their families to think and talk about what their goals are.  At Calvary we are committed to support our patients make meaningful goals so that we can focus our care on helping them work towards these goals. These goals could be about being well enough to attend a family wedding, to have as little pain as possible or to heal a relationship that has broken down in their life.  We learnt this week that effective communication skills for health care workers is critical. 

After our education session we went down to the Unit and went through  2 activities. Anita lead an interactive role play with Nurse Kym. Students experimented with what it feels like to be a patient, lying in a patient bed, with a gown on and a head turban. This experience was about trying to think - what would it be like to be a patient? We explored the concept of powerlessness and patient centred care. The girls enjoyed this and were able to play around with some of the concepts we had been talking about. 

The second activity was about reflecting on our journey so far and allowing space for a response. We shared some of our personal reflections to I  hope.... and I wonder..... and also shared with our group how we were thinking and feeling about the program. It was a real privilege to listen to the students and to share some of what is going on for them.


I am looking forward to meeting more people in the web of care next week. 

Video Diary #1

 

"Nan Peg" - a child's tribute

Today we feature a shared picture from our St John's Gibson Ward staff member Kym Self.


The picture is from Kym's 8 year old daughter who drew this chalk drawing the day her "Nan Peg" died.


We are all different and all have different ways and means of expressing our grief, no matter what age we may be.


Thanks Kym for sharing this image with us.

Second Reflection Question

I wonder. . .
What a stimulating hour and a half we all had. Thank you everyone for your energy and for your sharing, some of our topics are tough and our responses are unpredictable and at times edgy. Remember that there is real joy in this seeming chaos.

What are you left wondering about? Looking forward to reading your reflections and ideas.

Empathy

Today one of the issues we investigate is EMPATHY and how in this field we need to connect and support with each other and the people we care for through empathy as opposed  to sympathy.

Watch the youtube clip attached from Brene Brown.

Reflection Questions

Please share your hope for the project:

I hope.....

I hope that that we gain a range of new skills to communicate more openly and comfortably with our peers and loved ones about death and dying. I also hope we can find inspiration to live more meaningful lives.

On Your Marks...

Part 1 - Session 1 starts this Thursday, the 18th February at Calvary St John's. We have 14 could be, would be, maybe - student health care workers from Year 11 and 12 from St Mary's and Guilford Young College getting ready to start their exciting exploration with us. I have been out buying art journals and gear so we can get the creative juices flowing...Week 1 will be be about orientating the group to the Calvary St John's, to our Palliative Care Unit, to each other,  and to the reflective process. Kate MacNicol a Pastoral Carer from the Calvary team and Kym Self our Nurse Educator from Gibson unit will be attending the Sessions from Calvary. Angela Mitchelmore and Anita Johansson-Wong will be joining the group from the teaching team at St Mary's.  Like the students we will also be on the exploration journey. I cant wait!