How family dynamics can disrupt your loved one's end of life goals

According to research, family dynamics often leads to sick or frail people receiving treatments and hospitalisation that’s non-beneficial.

As you care for your loved one, keeping preparation and communication at the centre will help you bring their end of life wishes to life.

How family dynamics can disrupt your loved one's end of life goals

According to research, family dynamics often leads to sick or frail people receiving treatments and hospitalisation that’s non-beneficial.

As you care for your loved one, keeping preparation and communication at the centre will help you bring their end of life wishes to life.

For many in the last stage of life, hospital is the safest place to spend their final days. For others, however, it can be avoided. According to a recent article in the Medical Journal of Australia, family dynamics often leads to treatments and hospitalisation that’s non-beneficial.

Ken Hillman, intensive care clinician, professor of intensive care at the University of New South Wales and Violet clinical committee member, says about 70% of Australians want to die at home or in a home-like setting, yet only 14% get to do so.


Hillman believes part of addressing this discrepancy requires the sick or frail person, their family and their medical team to talk honestly and compassionately about the fact that they are in the last stage of life. “Australians on the whole, don't talk openly about death and dying,” Prof. Hillman says. “It's one of those topics that makes people feel uncomfortable. Which is really interesting, cause we can talk about most things openly, but not about death and dying. That causes a lot of problems because people aren't prepared for it.”

Along with open communication, early preparation is crucial to an end of life experience that reflects your loved ones goals.  Knowing in advance what medical interventions a person doesn't want can assist in easing your uncertainty, and assist the medical team in refocusing on making the dying process as optimal for your loved one as possible.

Here are some practical steps to help your loved one avoid unnecessary hospital admissions.


First, have meaningful discussions about end of life with your loved one

There are key questions to ask and your loved one’s answers to these questions would give you the information you need to make an end of life decision on their behalf if you've been given the power to. And even if your loved one has the capacity to make this decision when it comes to it, their answers could help you come to terms with their decision to stop being admitted to hospital, for example.

This is why completing an advanced care plan as early as possible is important. In setting up this plan, your loved one would be encouraged to think through questions on end of life care preferences and personal goals.

There might also be questions and preferences that exist outside an advanced care plan that you’d like to broach with your loved one. If so, Violet can fill in the gap with conversation starters to allow your loved one to fully comprehend their own desires around the last stage of life.

Next, proactively take steps to understand your loved one’s prognosis

“It never ceases to amaze me how many carers are absolutely surprised by the fact that nobody talked to them about the fact that their loved one may be coming near to the end of their lives,” Prof Hillman says.

Before a medical crisis even occurs, you and your loved one can ask their physician about your loved one’s level of frailty, how far along they are on the end of life path, and what medical treatment would meet your loved one’s goals around prolonging life and dying. Your aim is for you both to learn as much as you can about their medical prognosis, so that end of life decisions are well-informed.

If you are unsure what sort of questions to ask the physician, or how to decipher their responses, reach out to one of our Violet guides.


And finally, ensure key members of the family understand your loved one’s preferences

Given the impact of family dynamics and communication on your loved one’s experience, particularly as it relates to hospitalisation and treatments, sharing information with family members is crucial. This can be complex given strained relationships, distance and poor communication habits, but always bringing the focus back to your loved ones preferences and values can ensure plans are carried out.

Having conversations about dying with your loved one empowers them to express their desires for their end of life care, and decreases the likelihood of them being admitted to hospital unnecessarily. Sharing those plans with members of your family who are likely to be part of the decision making when the time comes is also vital.

Communication and preparation are key in helping your loved one have an end of life experience that aligns with their preferences. A Violet Guide can support you as you work through both of these key stages in caring for your loved one.

 

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