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!