What does Palliative care mean?

When people hear the term palliative care, it can bring up all types of emotions, from grief and sadness as they remember a loss close to them, dread about needing the service one day, complete denial, through to overwhelming appreciation for the care a loved one received in the palliative stage.

For me, it brings passion, passion for ensuring someone can have the best end to their life possible, with their wishes being implemented where possible and having the passing they designed.  I know it is an odd thing to feel passionate about, and I’m happy for you to think I’m a bit odd; however, as a nurse, I don’t believe there is any greater honour than giving someone a peaceful death with their own personal touches added.

Facing the reality of death

Let’s get the important and confronting thing out of the way at the start. Death is going to happen to us all, and for the lucky ones amongst us, we will get a chance to have made some plans and have time to say our goodbyes and do it our way.   And that is exactly what palliative care tries to achieve.

The meaning

Palliative care is the care provided to someone with an incurable illness.  It aims to improve the life of the person with the illness and their family and friends, by decreasing stress, pain, managing symptoms and providing support for carers.

Who provides palliative care?

Palliative care is generally delivered by a team of people, which may include your doctor, the palliative care doctor, and other medical and allied health professionals such as psychologists, counsellors, music and art therapists, nurses, and pain management professionals.  The team will start with our big group and narrow down to the doctors who will oversee medication orders and the nurses and carers who will administer medication, provide care for you, and support loved ones.

A common myth about palliative care

Many people think that if you start palliative care, you have a week to live.   This is not true; you may live a very long time after being referred to palliative care, and in some cases, your disease may stop progressing, and you may leave and come back when progression starts again.  Although palliative care is delivered at the end of life, it also refers to the time before this when active treatment is not working and gives you time and support to deal with what lies ahead.

Receiving palliative care at home

Our organisation, Exceptional Care For You, provides palliative care in the community in your own home.  Not everyone wants to die at home; however, many do, or their families would like them to.   There is no right or wrong way to do this.   Some feel strongly about not wanting to bother their families, some children feel they owe that to their parents, and others run for the hills.   All options are perfectly fine, because until we are in this situation, none of us knows how we will respond and what decisions we will make.

Why support matters for families

If you do choose the home option, it is important to have support in place.   Whilst it is lovely for family to assist with care, doing all the care is difficult and tiring in combination with dealing with the very high emotions of the time.  

When my dad was dying in a Palliative Care Unit, the best advice a nurse gave me, was to “stop being a nurse now and just be my dad’s daughter.” 

I use this advice with every family I meet in this situation.  It is your last days/weeks with your family member, and you should be with them, not exhausted from caring.

Now, some of you may be asking why your Dad died in a palliative care unit if you work in community care.   Good question.   Remember, I said everyone makes the decision that is best for them.   I wasn’t working in community nursing then; my mum and dad’s house was not set up for care, my mum was not coping, and I was juggling my boys and a job.  

My Dad’s palliative care story

Let’s look at two end-of-life palliative care stories that are very different.

One is my Dad’s.  Dad was diagnosed with cancer of an unknown origin. he was 88 years old, and the treatment would have taken his independence away. The decision was made for no treatment.  Dad went from an acute hospital to respite in an aged care facility for a week and then I arranged for him to go to what was St Vincent’s Palliative Care Unit in Melbourne.   This unit was superb they provided us with the time and space we needed for dad and they provided brilliant care.  

Dad only ate and drank for a few days, but on those days, it was mostly ice cream, and he took a liking to Coke, which he had never really drunk before.    I encouraged this strongly, it’s a positive of dying no ones judging what you are eating!!!   We ensured one of us was with him most of the time, and towards the end of the week, as he deteriorated, we were there with him 24/7.   What a privilege it was to be there.  

After he passed, my sister and I washed him and laid him out with a comb in his hands.    As kids, mum and dad would take us to Bright often on summer holidays, and we would swim in the river.  Every day, Dad would lose a comb in the river, so we sent him with one for the afterlife.

Whilst that week was a sad week, there were also many times we laughed as a family at Dad’s expense. On one of those days, it was my birthday.   I spent the day sitting with dad, just him and me for a lot of it, and I have never had a better birthday.   This time was possible because he was being cared for by others.

A client’s wish to die at home

The second story is of a client of ours who had decided to stop all treatment and let her disease do what it had to do.  This was a planned decision she had spoken to me and her GP about at length, she knew what to expect, she knew exactly what she wanted and made sure I knew.   Her team, who had looked after her previously, extended their shifts and knew carers were brought in overnight.   She told me what visitors she did and did not want to see and I would simply tell the ones on the “no” list she was not up to visitors 

She had chosen to die at home as her hospital experiences had not been pleasant, and she knew I would honour her wishes.  We worked with her Dr and the palliative care team to ensure she was pain-free and comfortable.  I organised a sound healing session that she wanted to experience; we did this together, and she said it brought her a sense of peace.  In the days before her death we were able to have very honest discussions and I was able to say things to people that she could not.  She told what she wanted done with her ashes and had organised her funeral.

She died not long after I had left one night, she clearly did not want me there.  I went back and sat with her until the funeral director arrived, and I played 80’s music as she left, and she had asked me to.    She also asked me to say “f### off now “ when I had my turn to scatter some ashes, which I did.  All of her wishes were carried out in her happiest place, her home.

Talking about death isn’t easy

If you have needed tissues reading this, don’t worry, I have had a cry as well. It is challenging to contemplate the end of anyone’s life, especially our own.   Next time, we will focus more on what happens at the end of life and the care that is required.

And finally…. Time for a joke

Why did the man have to sell his hospice?

It was a dying business!!!!!