What you may not expect an advance care plan to cover

Aug 8, 2020 | Uncategorized

There’s more to an advance care plan than medical and legal decisions. Learn how to capture the essence of you with ExSitu now.

An advance care plan provides you and your family a unique opportunity to leverage a necessary part of your aged care and end-of-life journey for the better.

The right advance care plan can open doors to defining what a life well lived means. It can be the place to fly the flag for the micro-sized moments that matter for you in a care environment. And it creates a centralised seed bank for your values and who you are as a person.

We’re so much more than how we respond if things don’t go to plan in a medicalised environment or whether or not we should stay home instead of enter care. We’re wonderfully patchworked individuals with a myriad of small intricacies that make us special.

So special in fact, it’s being sure of the values we hold dear that truly makes it possible to make the right decisions on our behalf.

Here’s how an advance care plan can help you to create a vibrant picture of you as a person, come what may

Advance care plans and your individual values

We often think of advance care plans as providing a framework for medical and aged care decisions. Yet advance care plans provide so much more than that. Here is the opportunity to uncover the detail and create your first ever roadmap of your values and what makes you the person you are.

ExSitu operates to help you define what matters to you with a focus on your values.

By using your values as the beating heart of your advance care planning, you can define what an end-of-life stage is for you. Or if you are incapacitated or acquire a disability or illness that reduces or takes away your ability to speak for yourself.

The values now found in advance care planning in Australia allow you to place your values at the centre of your care decisions.

E.g. What does quality of life mean to you?

When does life shift from being about preservation of life versus perseveration of quality?

A common example for people with a life-limiting or continued illness may be the decisions surrounding when treatment and its side effects may reduce quality of life.

For example:

If chemotherapy offers an extension of life of weeks or months but because of the ways you have responded to chemo in the past, you would spend the majority of your time unwell and unable to leave bed, you may be greeted with a choice that looks like:

  1. At what point would the side effects generated by treatments such as chemotherapy be acceptable if it prolonged your life?
  2. At what point would you prefer to feel less of chemo’s side effects so that the time that remains was spent without sickness and nausea to travel or do things you enjoy?

For a person who wants to see their Granddaughter walk down the aisle, it may be the best option. For another person who wants to play with smaller Grandkids, it may be more appealing to have a shorter time limit and be more active.

These sorts of decisions are reflected in what we value as a person. And how we define a life well-lived.

Dignity versus risk

Beyond treatment, you may be willing to accept risks that perhaps the notes on your medication or members of your family see as too great.

This is where the ExSitu advance care plan and the focus on your individual values starts advocating for your dignity versus everyday risks that others may perceive you wish to avoid on your behalf.

For example, from an aged care provider perspective, it might not be safe to let you enjoy a thunderstorm on your room’s balcony. Or perhaps your well-intended adult children want you to stop with your nightly sherry in case it interferes with your heart medication. You however may see the risk associated with a front row seat in one last belly-busting storm before you die, as one worth taking. Or you may believe a day worth living should be celebrated with a tiny nightly tipple that is worth the potential of medication making you feel a tad nauseous at 94.

It’s about defining those moments where the system and your family may be well meaning and risk-adverse while accidentally removing some of your choice in the process.

You as a roadmap of values

Grabbing all the tiny scraps, motivations, complications, and contradictions that make you the person you are today helps inform the advance care plan of the future. You are made up of the smallest of choices. Those are not short answer questions but reflections of your values. The Australian approach to advance care plan creation has moved away from short-answer form to tapping into the core of who you are as a person via what you value the most.

You cannot possibly answer every single eventuality you might face in a care environment. But you can lay a solid foundation of values that reflect what matters for you when you are being cared for.

This is what advance care planning aims to achieve.

Having the advance care plan, A, B or C

Many mothers smile knowingly at mothers-to-be for their well thought out, romanticised birth plans. Many couples of several decade have had more than a cheerful chuckle at the naïve newlyweds who insist their marriage will be sensational without legwork and at times, awkward conversations. Many seasoned parents are still surprised by the many different ways their children can continually throw them for a loop.

Life is a wonderful teacher. The best laid plans are often abandoned in the face of life’s other ideas.

However, our ability as human beings to adapt, to deal with situations, and to make the absolute best of what remains is definitely enhanced by the inclusion of a well-made plan.

End of life is no different.

Even if we cannot access the Plan A of dying at home with the jazz softly playing, surrounded by the family, pets snoozing by the fire, with a feeling of peace and contentment, we can still enjoy the comfort of Plan B. Plan B can still see the family by our side, our beloved Labrador’s photo on the bedside table to remind us they have a safe new home with your dog-doting Daughter-in-Law, and your favourite knee rug from the lounge reminding you of your dear departed Gran at the end of the hospital bed.

It’s what we value, not how it’s represented, that matters.

When we know we value the little things and can convey them as part of our advance care plan, we have a greater chance of giving ourselves- and the people we love- the end of life we seek.

Be more than a series of medical decisions or legal documents.

ExSitu is switching advance care planning from tick boxes and short answers into creating a safety net for your values. It’s designed to capture you at the very essence of what matters to you.

Want to know how you can create an advance care plan to capture the heart of who you are? Get in touch now.

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