North Stars

Over the last few weeks, I’ve facilitated half a dozen workshops for community practitioners, volunteers and lawyers, where ethical decision making has been at the centre.  For the first half of my career as a community psychologist, at least once a week, the team that I led had an ethical dilemma we had to respond to.  We became adept at working these complex issues through where multiple parties had competing needs.  As the leader, my position was statutory so I had to have the final say but I couldn’t possibly have managed to make these decisions without the input of my trusted team.  The complexities lay in managing the competing needs and wants of multiple parties.  It wasn’t so much making a decision about best and worst options; in many ways that would have been easy.  It wasn’t even a situation where we were making decisions about good and best options.  The decisions usually lay in finding the least worst option; an unenviable position.

Along the way, I was grateful to receive training by what was then known as the St James Ethics Centre (for its location in Sydney’s CBD) but now simply as The Ethics Centre.  A not for profit organisation filled with some of the best brains and minds you could wish to have as a resource.  My team and I developed what we called our “North Star” as a way to keep us focussed.  Our North Star was always to focus on the needs of the most vulnerable person in the mix: the person who was impacted most by the decisions of others, the person who had no voice, the person whose life would be changed completely by the decisions of others.  When we felt ourselves being swayed, pushed, pulled in all sorts of directions, we would always bring ourselves back to our North Star.

The North Star, or Polaris, is a northern hemisphere astronomical phenomenon.  There isn’t an exact match in the southern hemisphere, although the pointer stars of the Southern Cross would be our closest comparison.  Polaris sits more or less directly above the North Pole and it never moves.  It is the single, most consistent and reliable way to navigate to any destination in the northern hemisphere.  It’s also the brightest star in the night sky.  You can understand the reason we used the term North Star to navigate our way through the complexities of our work.

Our day to day lives don’t necessarily require us to call upon our North Stars, which is a good thing because most people haven’t considered the need to have their own Polaris.  It is however helpful to take some quiet, alone time to work it through.  Having recently facilitated this group of workshops, ethical decision making was at the forefront of my brain when, out of the blue, I received a phone call which required me to use the skills I had so recently been teaching.

For the last ten years, my family and I have been managing my mum’s cognitive decline.  Mum, like me and so many others, was diagnosed with Multiple Sclerosis (MS) as a young woman. MS is an incurable, degenerative disease of the nervous system; essentially the brain and the spinal cord.  It’s an autoimmune disease which causes damage to the myelin sheath.  Think of it like an electrical cord; the white coating protects the electrical wires that run within it from the appliance to the socket.  Some of you may have read my chapter in the book Whispers of Resilience: our stories of multiple sclerosis so you will know my story.  Mum’s experience of MS is different to mine.  MS has predominantly impacted her brain and as a result, about ten years ago, she developed MS related dementia.

Mum expected she would die prematurely due to the impact of the MS but actually she has outlived her husband and has lived longer than her parents did. Following dad’s death, it became obvious that he had been shielding us from Mum’s cognitive decline and its impact on her behaviour.  Initially we noticed odd moments or comments but within a few years these odd moments became more consistent.  Eventually the time came when her specialist made the decision that she needed 24 hour care and she moved into a nursing home. The nursing home is about five minutes drive from us and she’s been a resident there for four years.  In the last year, her health, as well as her brain, has started to decline more rapidly.

Prior to dad’s death, my parents made the decision to appoint me their Enduring Power of Attorney and Enduring Guardian.  This meant that, if necessary, I would be their proxy for all legal and medical decisions.  Of course it wouldn’t come to that we all agreed.  It was a “just in case”.  I’m sure many families have these legal documents in place “just in case”, which is why I decided to write this article.  This is for when the “just in case” becomes actually necessary.  I hope it will help you find your North Star as you navigate the legal and medical complexities related to making ethical decisions about a third person.

Back to the phone call I received out of the blue.  With mum in a nursing home, it wasn’t so much out of the blue but definitely unexpected for a random Saturday morning when I was just waking up.  The doctor wanted to know my feelings about treating a complication mum had developed.  Mum had thankfully organised an Advanced Care Directive, which states clearly that she doesn’t want to have any unnecessary medical measures taken.  Thankfully we have also, as a family, talked regularly about our wishes when it came to things like medical decisions when we can’t speak for ourselves and organ donation.  Mum had been a nurse, a midwife, an aged care community nurse, lecturer in nursing and Head of Department of Nursing at one of Sydney’s major universities.  Mum knows about health care and made very informed decisions about her advanced care directive.  As a clinician she often said, “just because we can, doesn’t mean we should”.  That was her North Star as a nurse.  As mum’s proxy, I knew I had to be clear about my own North Star.  

I hope the information I’m about to provide, with wisdom and guidance from the Ethics Centre, is helpful for you or someone you know.  I must strongly state that the information should not be read as advice.  The decisions I made are my own entirely and you should not be guided whatsoever by them. They are just an example of some of the toughest decisions we might have to make.  This is simply what I hope will be a helpful structure to guide your thinking regarding any complex decision.  The Ethics Centre in Sydney provides information, education and podcasts but it also has a free helpline where people can speak to an ethics counsellor regarding their individual situations. I encourage anyone who needs support in this area to call them.  You never know, I may end up calling them myself.

“Ethics defines the best option as the one which 

best achieves what is good, right and consistent 

with the nature of things in question”.

“Ethics is the process of questioning, discovering 

and defending our values, principles and purpose.  

It’s about finding out who we are and staying 

true to that in the face of temptation, 

challenges and uncertainty.”

The Ethics Centre

Let’s unpack the concepts of Values, Principles and Purpose.  Values are like the why (something is important), Principles are like the how (will you do it) and Purpose is like the what (will you do).  

Take some time to think about the three values you hold most closely.  It might help you to know mine in order to prompt your own thinking.

• Every person has inherent worth, irrespective of who they are or what they have done

• This planet is the most precious resource and gift

• Bravery and courage are fundamental to a well lived life

Next I would like you to think of the three most important principles you adhere to.  Mine are:

• I will treat everyone with dignity and respect and apologise if I miss the mark.

• I will tread lightly on this planet as much as possible

• I will use my privilege and power to speak up for those who can only whisper, even when I’m scared.

Finally, think about your responses to your values and principles and use them to find your purpose.  Mine is:

within my circle of influence, I will leave this earth better than when I arrived.

So let’s get back to that doctor’s phone call.  I was waking up and whilst I didn’t want to think fast, the doctor wanted me to make a decision there and then about medication for mum.  I did actually ask him if I could have some time to think about it but he put the pressure on me for an instant decision and I was too half asleep to put my foot down.

Over the last 12 months or so I’ve had a few conversations with the doctor about mum’s care.  Each time I call upon my framework.  I also call on the opinions of other experts.  The other experts in this situation being the words of the Emergency Department specialist mum had seen last year, the Paramedic who had attended mum a couple of months previously when she’d had a fall and of course my siblings and extended family.  The ED Doctor told me he wasn’t going to treat mum’s extremely high blood pressure for a variety of reasons which he carefully explained to me and I agreed with.  My siblings, along with myself, had been part of the family conversations about decisions that might need to made. Fortunately we’re all on the same page. The Paramedic told me over the phone that mum didn’t want to go to hospital.  With the ED doctor’s words in my mind, I asked what the hospital would do.  “Honestly?” The paramedic asked me.  “Yes.” I said.  She said, “probably nothing.  Your mum doesn’t want treatment so they’re not going to force her to have treatment even though you have guardianship”.  I told her I was thinking exactly the same thing so with the paramedic’s complete support, I made the decision for mum not to be taken to the hospital. 

In my unexpected early morning phone call with the doctor, I asked him what mum had said about the medication.  He told me that mum had told him to go away and leave her alone, but he questioned her capacity to understand.  Given my mum’s medical career, I knew this was the part of her cognition that was still imprinted.  She might have forgotten what I said two minutes previously but ask her about how to treat some injury or illness, she was still sharp, even if two minutes later she’d forgotten we’d had the conversation about the injury.

I ran through my decision making with the doctor.  I thought about mum’s North Star; even if you can, doesn’t mean you should.  I thought about my values and principles and I thought about why my parents had asked me to take on the role of decision maker for them.  They asked me because they believed I could make the hard calls.  They asked me because they knew my core values and principles of inherent worth along with dignity and respect.  They also knew I have always been committed to speaking up for the voiceless with courage and bravery.  

Now was the time to call upon my values, principles and purpose and make a decision.  Not my decision, mum’s decision.

I hope more than anything that this article has been helpful for you.  The ultimate decision that I made isn’t relevant in the end, it’s the process of getting to that decision that’s important.  The decisions we make will most likely have an impact on other people as well as ourselves.  It’s important that we have a way to guide our thinking so we don’t make knee jerk decisions that might come back to haunt us.  Decisions that we can live with and decisions we can justify.  As always, I’m sure there are people who are struggling with some similar issues,  please pass this article on to them.  You never know, it might be helpful in ways you wouldn’t even have thought.  

Take Care

Angharad