Death and Dying - A personal journey

Death and dying are scary concepts. Watching someone you love die is packed with grief.  They're not who they used to be. They look different. They’re not that person you remember and so desperately want them to be again.

My Dad was dying; a bone marrow disease stealing his life. He’d lost weight and I knew he was not long for this world. I had been told that acute leukaemia would be the last stage of his disease and having done time as a nurse in acute haematology, I knew what that looked like.

A drug trial came along. It took a lot of talking into.  All the scary stuff you see on medication details, you know, it'll kill you basically.  They have to list them all but we only look at the bad ones. Dad was freaked, dying wasn’t on his agenda. Our discussion went something like this: “You're going to die soon if you don't so - it's a no brainer, what's to lose?”  He started on the trial and the size of his spleen reduced dramatically. He could eat again, he put on weight and his blood results improved. Things were looking up. 

Then prostate cancer struck. Something his father died of.  It spread to his bones.  Never one to give up, he pushed himself to the end.

As a former nurse, death and dying are things familiar to me. It's not something I'm scared of personally and I’m very comfortable talking to people about it. That doesn't mean I don't get sad.

I've been with others at the end many times, not just as a nurse, but as family and friend.  I've journeyed the path to the last breath with my Dad, my mother in law and a dear friend, each with a terminal disease. Each, who could have had one of those horrible deaths, but instead died in the most peaceful and beautiful way. 

For most people, it's the fear of losing control, of being a burden to others, the unknown of what life will be like until that last breath. For some, it’s the fear of pain. Many often ask for it straight. “How long have I got, what will get me, how will it happen?”  Often when asking for a direct answer, it's given in a very blunt way by the specialist or GP treating the disease: “You'll get a major infection, the cancer will spread throughout your body.” What people are hearing is that something unspeakable or very scary will happen. It confirms all of those fears. And those fears are perpetuated for those of us who will be left behind. We don't want our loved ones to go, for a start, let alone go in a horrible way. Who would?

For Dad, he wanted to be at home, not hospital, and we wanted him there too. My parents set up camp at my place, as they lived in the country, and that became the base. I loved him being there. It was the lead up to the 2014 election, and balancing that huge pressure and massive 17 hour day workload with commitments is exhausting at the best of times, but I cherished being able to help with the simple things, like doing his shoes up. The little things mean so much when you know someone you love won't be there much longer. Things like downloading his favourite music, making sure his bed was warm before he got in and helping him to get to the bathroom and back. Coming home to him and Mum meant everything. Because it’s not always just about the person who is dying, but also about those who are going to be left behind.

We asked Eastern Palliative Care to provide the specialist out of hospital support we needed. Having been a nurse, I knew about the difference they make to the lives and loved ones of those nearing the end. Their doctors, nurses and allied health specialists are experts in death and dying, yet many medical specialists don’t refer their patients to them for end of life care. That in itself is alarming because medical specialists and GPs who don’t work in oncology and palliative care, yet do treat terminal patients, are not necessarily educated in evidence based physical and psychological treatment. There’s much to be done here.

When you engage with a palliative care service, you soon find out how under resourced they are. Unfortunately, people miss out or it can take days for them to be seen yet specialist palliative care teams are often the difference between the horrible deaths that some have witnessed and the peaceful deaths that others experience. For those who have witnessed the pain, the distress, the suffering of a loved one in the final stage of life those very real experiences create scars and fear. Years later, the memories are still vivid. No one wants that; it’s cruel. To think that those experiences come about because we’ve never really prioritised spending on end of life is something that must be considered in the context of where we find ourselves now. Doing death well is not cheap.  

Many think Palliative Care is just pain relief. That’s only one part of what I'd describe as a holistic approach to the individual and their loved ones travelling the journey. Its focus is on preventing and relieving suffering and improving quality of life, and not just pain relief in isolation.  It also includes psychological care and spiritual care, if needed. In other words, it's about focusing on the individual’s needs and that of their family. That includes allaying the fears that have arisen through their own experiences or those that others have told them about.  

When the nurse arrived at home she was incredibly compassionate. This was so important for Mum. Dad hadn't been himself that morning and his temperature was elevated. There was something pushing it up that we couldn’t  point to. It meant a return to hospital. The focus of his Palliative Care in hospital was just as much about Mum as it was Dad. While my three sisters tried to get there as much as possible, it's that psychological care that was so vital for us all.  

I remember sensing that Dad was in a bit more pain than he was letting on.  He never showed his feelings much.  I spoke to his specialist about moving him onto permanent relief through a pump because perhaps the intermittent stuff wasn't being as effective. He said the team would keep an eye on it but thought it a bit premature. 

The next day I was interrupted during a party room meeting in Parliament to speak with dad’s specialist. You’re never interrupted in those meetings so when it happened my first thought was ‘oh no!’ He agreed, it was time for the pump and we discussed talking to the family about it. No one should die in pain and there's no reason for it to happen. I've always been of that view and those that specialise in Palliative Care know it’s possible. While some argue that all pain can't be relieved, even a leading Dutch pro euthanasia advocate, the late Dr Peiter Admiraal had indicated that pain control and alertness can be achieved in practically all cases. 

It was clear from discussions with Dad’s Doctor that it wouldn't be long. Perhaps a week.  I left Parliament to be with them. It's all a bit surreal when it's happening.  You've thought about it, anticipated it, but you're never really prepared for the finality of it. That pain that comes with knowing memories will be all you have and not wanting it to end.  With the pump on, dad was all smiles, sitting up in bed with his entire family around him. I recorded the smiles and laughter.

One thing I will always treasure is those conversations, those special moments you have in the last days of someone's life. The finality of it all means you share precious conversations that you’ve never had before, where all of the doubts and things that stopped you before no longer exist. You laugh like you've never done together and sometimes like I had the opportunity to do, I recorded precious things Dad wanted to tell others including the family and his close friends. These are not things you can orchestrate. I've seen that often enough. They just happen spontaneously at times scattered throughout those final days.

When someone dies because of a terminal illness, it’s as important for those being left behind as it is about the person who passes away. While they go, those left behind have to live on, they have to deal with the grief and construct a new normal. As grief stricken as you are that you won’t see them, hear them or hug them again, there's growth through the process of being beside them through those last weeks or days  A strength emerges that's drawn deep from within. A strength that, for many, builds resilience.

There’ll always be grief, that emptiness and sadness without them, and the memories. For Dad’s closest partner in life, my Mum, she was able to move on with the support of Eastern Palliative Care after Dad passed away.  The support group of others going through that same rebuilding of life after was helped along with new friends who knew exactly where she was at.   

Death is just as much a part of life as birth, but unlike birth, it’s not something we’ve done well. We know it’s cruel to allow someone to die in pain, yet we haven’t applied the resources to make sure it doesn’t happen.  What we do know is that with expert, evidence based palliative care, it’s possible. The question is, are we willing?