The gift of having an advance care directive during my Dad’s death

I always knew the importance of having an advance care directive but I didn’t realise the true value of it until my Dad was dying.

Dad’s advance care directive was filled out when he was admitted to the nursing home after having a stroke. We worked with him to do it at the time, and he was pretty clear that quality of life was most important to him.

Dad’s accident

It was Friday morning when we got the phone call to say that Dad had slipped in the shower at the nursing home and was being transferred to hospital. This was not the first time we’ve had a phone call like this (not about slipping in the shower, but heading to hospital).

My younger sister Brigitte happened to be with me, so we both calmly spoke to the doctors about his situation and made the call to not rush to hospital and head into work. We’d done that so many times before and this time it didn’t seem that serious – just another fall. Well that’s what we understood it to be and told our older sister Jen as much.

It wasn’t until 3 o’clock in the afternoon when the hospital rang and said they we’re going to operate on Dad that night, and that I should really come and see him, did I realise how serious it was. What the doctor hadn’t told us that morning, because they were waiting on scans, was Dad had actually broken his neck! I found this out when my husband and I went to the hospital and saw Dad before his operation. It was quite the shock to see him in a neck brace and being kept still.

The last week of his life

I’ll write the story of Dad’s week of dying another time, but to cut a long story short, he survived the operation but was not in good shape. He’d actually had two cardiac arrests on the operating table. Now I’m not clear if they resucitated him or not (he had a do not resucitate on his advance care directive), but I was glad he’d made it through the operation to give us the time to say goodbye.

He had multiple comorbidities. Pretty serious ones too, which meant he had different teams of doctors advising different things and courses of treatment. I think I counted four different health discplines at one point (orthapaedic, cardiac, geriatric and something else…). Having these different medical teams, was really confusing. We didn’t seem to have one point of call who could give us an overall picture. This is where Dad’s advance care directive came in.

How we used Dad’s advance care directive

It was a very stressful time, but between the three of us, we knew we had Dad’s advance care directive to guide our decision making.

Every time a doctor would propose some sort of treatment or some sort of course of action, we would ask the same question “Will this treatment simply prolong his life? Or will it actually improve his quality of life?” It was that principle that really helped us determine Dad’s course of treatment.

It was also really comforting to know that we while we were technically making decisions which was really tough, we were really just enacting Dad’s wishes. Because these were Dad’s choices, despite our own personal preferences, all three daughters were on the same page. It also helped when other family members asked whether or not we were doing the right thing, we could always respond with we’re just doing what Dad wanted. This was tricky at times, because in our culture we’re generally led to believe any life is important, no matter how bad the quality might be. However my Dad didn’t want that (and neither do I for the record).

Sadly Dad did die a week after his fall, but it meant that he wasn’t suffering longer than he needed to be. The timing of my dad’s death is the subject of another article, but let’s just say that his funeral was the week before the dreaded COVID-19 lockdown, so we were able to have a beautiful celebration of his life. The chapel was packed with people we hadn’t seen in years. And like all good Mauritians, we had a great wake afterwards (we’re not on par with the Irish or Jamaicans, but we’re pretty close). Sadly a friend of mine went to her aunt’s funeral in the same chapel only a week later, but only 20 people were allowed. We just made it!

The gift of Dad’s advance care directive

By enacting Dad’s wishes if his advance care directive, we were not only able to help him go out on his terms but we were also able to give him the celebration of his life that he deserved.

Having an advance care directive puts you in control of how you want to be treated. It also helps your loved ones that are left to take on the role of advocating for you and your wishes rather than having to make decisions and guessing what you want. Even when you’re enacting their wishes, which in our case was not taking up some courses of treatment, they’re really hard decisions to make. So whatever you can do to ease the burden of decision making for your loved ones, please consider creating an advance care directive.

Advance care directives aren’t just for “old” people

Even though we’re in our forties, my husband and I have done our advance care directives. It was a really interesting conversation. I encourage everyone of any age to look at the tools on Advance Care Planning Australia’s website and go through the exercise of advance care planning, formalising your advance care directive. It really helps during what is a really crappy time. My sisters and I are grateful for Dad’s gift that made his final days, and the aftermath, easier for us all.

Some useful links:

Advance Care Planning Australia – https://www.advancecareplanning.org.au/ 

Where to get support for advance care planning – Fact sheet from Advance Care Planning Australia

Carers’ Circle article – Advance care planning – planning for your future health care

Carers’ Circle article – Advance Care Directive – the document that conveys your end of life wishes when you can’t

Good Death Impact Network article – Understanding Advance Care Directives