CareSearch Blog: Palliative Perspectives

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Life’s Journey’s Final Steps: Dying in a Residential Aged Care Facility (RAC)

A Guest Blog Post from Larissa B McIntyre, RN, FACN - Residential Manager, BaptistCare Orana Centre, Point Clare, NSW

  • 10 May 2016
  • Author: CareSearch
  • Number of views: 7435
  • 6 Comments

  We all know that the population is ageing; and the figures forecasted are
  significant with around 15% (3.6 million people) older than 65 years in 
  2016 (Australian Bureau of Statistics (ABS), 2013). These figures will
  continue to soar, and by 2031 it is estimated 19% (5.7 million) of the
  population will be older than 65 years (ABS, 2013).

  In 2015 it was reported that 75% of people aged 65 and over who died
  in Australia used an aged care service in the 12 months before
  their death, and 60% were an aged care client at the time of their death
  (AIHW, 2015). These figures alone point out the obvious key role the
  aged care sector plays in ensuring a person’s quality of life reaches its
  maximum potential as they approach the end of their lives, and inherent
  within that is the role aged care plays in ensuring a good death.

But what is it really like to die in a RAC? We hear so many differing accounts from various sources; usually they are from outside the aged care sector; from people who do not work in our space and do not know or understand our space.  For many of us in aged care this can be frustrating, because the reality is death is our core business and we treat it with the respect it deserves.  This is our story of how dying occurs in our RAC.

Your journey into our facility will begin with a very comprehensive pre-admission interview that includes all of the typical and required questions, but for us, the key is discovering who you are as a person. What did you do?  How do you define yourself?  What do you love? What do you hate? What are your wishes? What is your story?  How do you want to live until you die? Who you might want us to talk to if you can no longer talk for yourself?

So many questions, but at the heart of it we are trying to know who you are. This is so important because everyone has a story and everyone’s story is different, unique and important. For our teams to deliver individualised care they need to know who they are caring for and what can they do that is meaningful for you.  And in many, instances we may be relying on the family (a very broad definition used here; as it does not necessarily equate to a blood relative) to provide that picture for us.

It also gives us an opportunity to understand your family dynamics and to begin to understand what you and your family understand about your condition and prognosis.  And as many in aged care will agree; often people come with a limited understanding or a somewhat unrealistic expectation about what is happening to them.  There is no doubt this is an emotional time for everyone.  The most difficult of all for us is when we realise that the person’s life is indeed very limited, but you or your family do not know this.  This is when we then need to lead you and your family down the path of quality, not quantity, of life.

By the time you are admitted into our facility we would have already had a discussion on your Advanced Care Plan (https://advancecareplanning.org.au/) and commenced working on one with you and your family if one has not already been prepared. Again, this is new territory for many families, with scary and confusing terms and again more questions about what will happen to you; the person they love.  However, our experience has shown that families are more than willing to participate in this discussion.  And it is a discussion, a journey – not a tick and flick exercise. 

If we know death is coming (the surprise question) we can organise a Palliative Care Conference with you (if able), your family, the GP and anyone else who can contribute and begin the preparations for the final leg of your life’s journey.  Again, questions will be asked and answered, re-assurance is given and the process of dying discussed.  Finally, the elephant in the room, death, has been identified, addressed and named.  

Now your impending death has been recognised we can prepare. The medications are sorted, the Niki syringe pump on stand-by, the comfort care box in the room, the plan is in place: it can be music, aromatherapy, lighting, TV, a visit by a Priest or Chaplain, or a party – it could be all of these things or more or none.  The End of Life box for the family to go through includes information on dying, bereavement, the medications we may use, fragrant teas, biscuits, a copy of Dying to know – Bringing Death to life (www.hardiegrant.com.au) and a Bible. Our goal is to make each death an individual experience and that the plan that was discussed and agreed upon is in place for you.  

We do not have visiting hours so your family can come and go as they please, or they can stay with you.  If you have no one to sit by your bed, our teams step in to provide a soft word, a gentle touch and ensure dignity is maintained. Throughout this time we will support you and your family, ensuring they have someone to talk to and connect with, and as death approaches we are there to provide care, support, and comfort. 

When death has taken you we will honour and recognise you by placing a photo of you with an In Memorium page at the entry for others to write messages of condolences, which we forward to your family along with words of sympathy from our facility. Our BaptistCare Chaplain will hold a Memorial Service in the Chapel for the residents and teams to attend to say their goodbyes. And we will remain available for your family, who may attend the Memorial Service, or we may never see your family again.  But that is their choice. Our goal and our privilege has been to walk the final leg of life’s journey with you, to share the journey with you and to ensure your death was greeted with choice, dignity and peace.

Bibliography
Australian Bureau of Statistics 2013 Population by Age and Sex, Regions of Australia, cat. no. 3235.0, ABS, Canberra.
Australian Institute of Health and Welfare 2015. Use of aged care services before death. Data linkage
series no. 19. Cat. no. CSI 21. Canberra: AIHW.


  A Guest Blog Post from Larissa B McIntyre, RN, FACN - Residential Manager, BaptistCare
  Orana Centre, Point Clare, NSW and Conjoint Lecturer, School of Nursing & Midwifery
  University of Newcastle 

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6 comments on article "Life’s Journey’s Final Steps: Dying in a Residential Aged Care Facility (RAC)"

Andrea Davy

11/05/2016 9:06 AM

Well written Natasha - a very encouraging insight into the work of an under recognised sector.


Elizabeth

11/05/2016 10:46 AM

A lovely blog Lara, you should be proud of yourself and your team at BaptistCare Orana Centre.


Robyn Attwoood

12/05/2016 5:38 PM

Lara - beautifully written. You and your team are obviously doing an amazing job with with the people who live and die in your care. I can't believe that RNs may not be legislatively required in high level aged care. Makes some of us in specialist palliative care more than a little nervous. I am so passionate about the palliative / aged care interface and it is heartening that you and Baptist Care at Point Clare are making such a positive impact on the final chapter of your residents' stories.


Peter Jenkin

6/06/2016 2:36 PM

Great post Larissa.

What a pity that our funders are clamping down even further on claiming for palliative care service provision in residential care. Seems short-sighted to say its only 'end of life' care that is intensive enough to warrant a claim.

Completely out of touch with professional consensus, especially now that we are using the 'surprise question' to begin the process much earlier, often with significantly better outcomes.


sue mcdonald

7/06/2016 8:03 AM

Great article. Advance care planning and having the discussion around death and dying is imperative when entering RACF. Great work Lara.


Sharon Gibbens (Vic)

21/06/2016 2:59 PM

Larissa, this is such an excellent article that explains such a normalised approach to a Palliative Approach in Aged Care. The discussions around advance care planning are so crucial and discussing with the resident and family members the approach to provide quality of life is so important. The end of life box with some great resources rather than just candles and lavender is perfect. Well done and keep up the great work

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