Mar 25, 2024

What do families expect from their healthcare team when experiencing the death of a loved one?

ClaireHimage
Image [Source: Shutterstock.]

Australians are not prepared for the death of their loved ones. More often than not, when a death happens, families are not aware of the steps they need to take and often look to healthcare workers for guidance. 

I experienced this in my own life when my husband died unexpectedly . What saved me from making a lot of knee jerk reactions that could have had detrimental effects on me later, is that I knew what was important to me and I could formulate a plan based on that.

This experience has led me into the work I do and the mission I have – to improve accessibility to information about death and dying to all Australians. Both at the time of a death but more importantly before the death even happens. 

Working within the deathcare industry for six years now, has allowed me to start to comprehensively understand the varying nature of how Aussie families experience a death. 

Despite all the circumstantial stuff one thing remains the same: families either get support from an expert at the time of death to help them understand their options, or they don’t. It’s important to note though, all families expect this support. 

Over these six years I’ve continued to see that families who were helped with deathcare support, either from their healthcare team or someone in their community, typically experience less stress. Experiencing less stress at an already challenging time is invaluable for families. 

Here are some examples of support that families received from their healthcare teams which assisted them navigate the process of dealing with a death: 

‘I received information about the process after death, how long I had, what my rights were and what my role was.‘ 

‘I was given resources showing me all the local service providers I had.’

‘I had a guidebook handed to me which included examples of questions I should ask a funeral director to ensure I was getting the service that benefitted my family the most.’ 

‘The social worker gave me a small booklet titled “What you need to do now” which was a step by step guide helping me work through the next steps.’ 

‘We had discussions with the nurses about what dying can look like and what we as a family could do’ 

‘The nurses brought in a palliative care trolley which had all of the information about end of life plus refreshments that they kept restocking so that we could stay with him throughout the whole process.’ 

The common theme across all of these stories? These families coped significantly better in the wake of a death because they were supported along the entire journey. 

As mentioned above, when families experience a death they all seem to have an expectation on the people around them, particularly their healthcare team, to provide them with guidance about their next steps. More often than not however, these expectations are not being met. Which leads me to think is this expectation on the healthcare team realistic? 

Our healthcare workers are already under immense pressure just keeping up with their current workload. Rightfully so, when a death occurs, there is not generally the time to be able to play such a significant role in the family of the deceased. Time also needs to be paired with knowledge. I also can’t help but think that if a fair amount of the population is illiterate in deathcare rights and choices, how can we expect that our healthcare workers have that knowledge? 

I don’t think it is a realistic expectation in these current times. Particularly due to the fact that the knowledge around deathcare rights and choices in Australia actually sits with the deathcare workers. And if the deathcare workers are not sharing this knowledge well, then how can it be readily accessed? 

The funeral industry needs to be doing a better job at improving access to information so that all Aussies can readily access agnostic advice to help them make the best decisions for them and their loved ones. 

A couple of ways that I am approaching this in my day-to-day work at Bare is to: 

  • Build bridges between healthcare and deathcare workers so that information is shared to provide better continuity of care for families going from healthcare to deathcare. I do this through networking with and visiting facilities to see where the gaps are for them so that, together, we can formulate resources for their unique family requirements. 
  • Facilitate community discussions, through presentations at local groups, around these topics so that if healthcare teams don’t have the time, hopefully someone in the family’s immediate network can step in with assistance. 

I see a world whereby doing this, we can create empowerment in families at vulnerable times. Empowerment is key to being able to approach a death in the healthiest way possible. Focusing on building more death literacy across communities, and particularly within healthcare settings, will reduce the stress currently experienced around the death of a loved one.

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  1. My late mother was left without breakthrough morphine when she passed away in care. Her GP did not script it so the RN could not administer it. We reached out to the On Call GP who arrived in time to certify her death. It’s 3 years down the track now and this still haunts me. With all the talk about Pall and EOL care, death and dying, this is the reality.

  2. I found this interesting and true as a previous diversional therapist in aged care for 30 years. I am having to contemplate this very topic with a husband that has a terminal brain tumour . Fortunately we have discussed his wishes and I think semi prepared if that’s at all possible.

  3. Much appreciated and welcome advice. Would like more knowledge on where to source more information.

  4. I wish I was told what the steps were when my mother passed. I had to navigate this on my own. When I really needed time to grieve.

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