Aug 20, 2021

End-of-life-care: Why having a ‘digital’ death plan is essential to dying with dignity

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And after teaching doctors how to break bad news to their patients, Merran, then aged 50, made the bold decision to begin studying to become a doctor herself.

Although Dr Cooper never shied away from sombre subject matter, tragic personal circumstances were the catalyst for her lifelong commitment to improving communication processes regarding end-of-life care. 

“My husband died when I was 23 and I cared for him over 11 months,” shared Dr Cooper.

“I was lucky enough to be able to be on that bed with him and look into his eyes when he was dying, and tell him that I loved him.”

She added, “Things like that aren’t really a KPI of good care anymore. People are more focused on the length of their lives rather who they want to be with and what their preferences are. That’s not their fault, it’s just what the health system has focussed on until now.” 

Deep healing and positive transformation

Because of the association with death, planning for future health care is a subject that is rarely spoken about.

Starting these conversations may initially feel difficult, but experts like Dr Cooper believe that end-of-life care can yield deep healing and positive transformation when families have a clear understanding of their dying loved ones’ preferences.

“I was working in hospital wards with the aim of working in palliative care, but I just saw so many people coming in without any advance care plans who then had long, stressful deaths, and that stress impacted families and the doctors as well,” explained Dr Cooper. 

Dr Cooper continued, “But when I called their families, who often had not visited for many years, they had no idea about their loved ones’ preferences for end of life care and had never discussed it. They had no idea about what their loved one thought about aggressive treatments or being forced to live in a diminished state.” 

While advance care plans have been the long-standing method of communicating end-of-life preferences, the paper-based nature of these documents presents a variety of issues that can hinder effective communication. 

Without any other suitable alternative available, Dr Cooper decided to take matters into her own hands by launching a digital advance care planning platform that fortifies the information sharing process and encourages practical conversations about death between loved ones.

This platform is the Touchstone Life Care app.

Decisions with precision

The obvious first step to advance care planning is understanding what type of scenarios can occur at the end of life and then making an informed decision.

The Touchstone Life Care app begins by prompting the user with a number of questions before introducing a variety of common medical scenarios in a tactful manner. 

“We have created a tool to help people make their own decisions,” said Dr Cooper. “The responses paint a picture of what is important to that person, and this gives medical professionals guidance if that person can no longer speak for themselves.”

She added, “It’s sophisticated, but it’s also easy-to-use. It has been tested on 90-year-olds and they can find their way around the system.”

This information can then be accessed via a QR code and easily uploaded to My Health Record, making it readily accessible in the event of an emergency. Users can register organ donation preferences and upload other relevant end-of-life documents as well.

Instant updates for health professionals and families 

The Touchstone Life Care app and its questions form a Common Law Advance Care Directive, which must be considered by any health professional making a decision in every state.

Unlike regular advance care plans that are paper-based, Touchstone Life Care operates in real-time, meaning that any changes of personal preference are instantly changed on the Advance Care Plan. It is quick and easy to upload to My Health Record from the web app.

Full integration with My Health Record is coming soon, which will automate this process even more.

Dr Cooper takes a “belt and braces” approach. 

While the digitised format creates an added layer of ease by printing plans as well, personal preferences pertaining to an individual’s end-of-life wishes can be easily shared with trusted contacts.

“Having trusted family members who have seen your preferences simply adds to the validity and ensures they are better enabled and equipped to see that your wishes are met,” Dr Cooper told HelloCare.

“We have the system designed in a way where you can identify exactly who is a decision-maker and who is not. In some cases, you may just want to make sure that your next door neighbor has a copy in case you have an accident.”

She added, “You can even print out a QR code and keep that in your wallet or on the fridge, which can be easily scanned to provide medical professionals and first responders with your preferences.”

Reliance and compliance

As the winds of change continue to sweep across the aged care sector, paper-based forms of record-keeping are simply no longer a viable option. Recommendation 68 of the Royal Commission’s aged care report states that all aged care providers must adopt new technology. This coincides with changes to advance care planning recommendations as part of industry reform. 

“So you can no longer have staff fishing through files and paperwork only to find something that is three years out-of-date. The Touchstone Life Care app makes this process very simple.”

Changes to the home care sector regarding advance care planning have also recently become a component of a broader suite of industry change.

“Under Aged Care Quality Standard 2.3(b), home care providers are now required to offer advance care planning options to clients as part of their care planning process,” revealed Dr Cooper.

“Touchstone Life Care can provide one-click compliance to aged care providers that generate instant reports. They can invite customers to go through the process on their own, or they can provide assistance for which they can charge a fee for service.”

She continued, “Having instant access to reports of clients’ advance care plans allows providers to prove that they have offered the service to everybody.”

An honourable goodbye

The cold, hard reality of caring for vulnerable people is that panicked decision-making in emergency situations can lead to end-of-life experiences that fall short of expectations.

A person’s final wishes regarding their own mortality need to be treated with the utmost respect and importance.

Dr Cooper’s sense of urgency regarding the need to digitise the advance care planning process was echoed by colleagues who have also witnessed the flaws of the current paper-based process first-hand.

“At the International Advance Care Planning Conference in Rotterdam three years ago, the final, penultimate meeting of the conference agreed we need collaboration and digital advance care plans that are available 24/7,” said Dr Cooper.

“People need something that can be viewed instantly by care providers, doctors, family members and ambulance officers.”

She added, “A single piece of paper that gets handed around from place to place is simply not good enough. This process can be improved, and the most important innovation is digitisation.”

To find out more about the Touchstone Life Care app, click here.

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  1. I was also able to lie on the bed with my husband, tell him how much I loved him, and that I would be OK….he could go…. I held him in my arms as he passed. But only because the staff in the Nursing Home were busy with “medication time”…. It is something that will be with me forever, a moment I will treasure always,

    1. Yes you can Geoge. These are your rights. However we do recommend you share and discuss your wishes with your GP if possible

  2. Aged care facilities can hardly meet the most basic of needs of residents for adequate hydration, appropriate diet and regular toileting etc. There is zero point in all the frenetic planning when the these homes refuse to employ enough quality staff to deliver the service. Without enough staff, this will only ever be a data gathering exercise. The paperwork will be fine, but this will not alone ensure a dignified death.

    1. Yes- aged care facilities are very short staffed. And it has resulted in cate that is substandard. If possible, do as much of this for yourself- which is why Touchstone Life Care exists-
      So people can make their own decisions about their care and have those choices protected, communicated, and respected.

      1. No matter how much you do for yourself, they will still cut staffing levels in order to satisfy shareholders appetite for profit.

  3. While my hubby was able to we did an end of life plan, a few years ago..initially a paper form of course so this idea of digital is a fab idea, and so shareable with who needs to have access to the plan…impressive.

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