As anyone who has lived through the final months of an ailing parent can tell you, it can be a harrowing experience.
For Karen, nothing could have prepared her for the final 12 months of her mother’s life. Not even a background in law could help her adequately navigate ‘the system’ of acute care, rehabilitation, a traumatic stay in a mental health ward and ultimately aged care.
Helping mum maintain her independence
Back in 2010, Karen’s mum Joan was still living well and independently. In her late 70’s, Joan was starting to feel the effects of age and had already had a few falls. Conscious of her advancing years, Joan appointed her daughter Karen as her substitute decision-maker under an Enduring Power of Attorney (Medical Treatment).
In the many discussions she had had with Karen over the years, she carefully expressed her wish that she live independently for as long as possible, stressing the things that were important to her were living with dignity, not being subjected to life-prolonging interventions if she was no longer able to care independently for herself and looking well-presented. “We set mum up at home with an alert system to help manage the risk of her falls. My sister suggested that it might be time to investigate residential aged care, however Mum still had capacity and was adamant that she understood the risks of living alone. She was comfortable with that level of risk if it meant she would continue living her life at home,” explains Karen.
With my legal background and my acceptance and understanding of her wishes I think mum felt that I would be a good person to entrust with her medical treatment decisions, if she was incapacitated. I think she also knew I was strong enough to fight for her rights, if needed.”
Fast forward a few years and Joan had a more serious fall at home.
An unexpected and lengthy hospital stay
“Mum ended up quite badly shaken and bruised. She was taken to hospital and we expected she would be released soon after.”
However by the next day it was clear she had deteriorated rapidly.
“Mum could no longer walk, she was delirious and no longer capable of making her own decisions. It happened that fast,” recalls Karen.
Karen was ready to step in to her role as substitute decision-maker but found it harder than she anticipated. It is important to note that this occurred in Victoria, just before the law changes that strengthened advance care planning principles and placed greater emphasis on the individual’s right to choose.
“Mum ended up in the hospital system for about five months where she was shunted from acute care to rehab. She also ended up in a mental health ward for six weeks, which was just horrifying.”
"We ultimately received a diagnosis of Lewy body disease (a form of Dementia) but the long journey to get there was excruciating for everyone, most of all mum."
When the burdens of treatment outweigh the benefits
Joan deteriorated rapidly in hospital. The continued testing and various treatments and medications appeared to be doing more harm than good. It became clear to Karen and her sister that their mum would be better off at home or in aged care.
“As I could see mum deteriorating I was keen to restrict any medical tests or treatments that were either painful or unnecessary. But even as mum’s appointed substitute decision-maker, I found that my objections were falling on deaf ears.”
As the effects of Lewy body disease took hold, Joan started to experience confusion and challenging behaviour. Distressingly, Joan was then transferred to a mental health ward, with a compulsory treatment order which meant that mental health treatment decisions now rested with the hospital. Other medical treatment decisions remained with Karen.
“The staff, including doctors, in the mental health ward did not seem to comprehend the distinction between mental health and other medical treatment decisions and would make other medical decisions without consultation with me.”
“There appeared to be no consideration of mum’s care wishes. For example, we had explained to the staff in the mental health ward that mum was fearful of men yet she was continuously placed in confronting situations with other male patients or staff. There was no understanding or recognition of her wishes or needs.”
“I think for mum it triggered memories of a sexual assault incident when she was younger. She was so scared. There was no dignity. It was heart-breaking to watch and I felt powerless.”
Mum’s voice is finally heard
“It took some time but the staff finally agreed to document mum’s care preferences. Though limited, mum still had some decision-making capacity. It had been a constant struggle to get the health professionals on board with mum’s care preferences but I felt that it offered our best chance of having her wishes respected and for her to receive care that would actually help her rather than make her worse.”
“It felt like a great step forward and was such a relief to me. The hospital staff were finally acknowledging my mum as a person and her right to choose her treatment and my right, as her substitute decision-maker, to have a say in her treatment. The hospital did not always honour this but it was a step in the right direction.”
After five excruciating months, Joan was discharged from the hospital. A place was found for her at an aged care residence. Joan received the comfort care she wanted and died around three and half months later.
“I think that what gave me the most comfort through the grieving process was knowing that I had advocated for mum. I fought hard for her and to help make sure her wishes were heard. But it shouldn’t be a fight. It shouldn’t be that hard to have your care wishes respected.”
“Despite my knowledge of the law and ability to understand health policy, I still struggled as her appointed substitute decision-maker to secure the right care for mum. I can’t imagine how hard it might be for others with less experience,” explains Karen.
What might have been
“I think about how things might have played out had she been released from hospital earlier. I think it would have been a gentler pathway for mum. I think we could have worked through her symptoms and arrived at a diagnosis of Lewy body disease through her GP – a person she knew and trusted. I also feel that her GP would have listened more to me as mum’s substitute decision-maker.”
Karen’s advice
Karen is sharing her story in the hope that it inspires others to plan ahead and avoid the trauma experienced by her family.
Write it down
“Write down your preferences for care while you still have decision-making capacity. Although mum had the Enduring Power of Attorney (substitute decision-maker), it would have been much easier for us if we started the hospital journey with a formalised record of her preferences for future care, her beliefs and her values. Make the most of advanced care planning laws in your state or territory and complete an advance care directive.”
Keep your documents accessible
“If you have an advance care directive, make sure it can be found in an emergency. Mum’s ordeal was a few years before the launch of My Health Record. If this had have been available when mum was sick, we may have had a better outcome.”
Choose a trusted substitute decision-maker
“Choose someone you can trust to advocate for you. Ideally that person should be strong enough to fight for you if needed.”
Speak up
“Be clear with your family about your wishes and who you’ve chosen as you substitute decision-maker and why. Making sure everyone is on the same page early on can help prevent family conflict further down the track.”
We need to do better and work together
Despite her harrowing experience, Karen remains optimistic. She looks forward to a future where doctors, health professional and families can work together for the best treatment and outcomes for the patient.
“A group effort is required so that all the information can be considered – this includes doctors, diagnoses and test results, but at the heart of everything we need to consider the person – their hopes, their values and how they want to live.”
“If we can work together then we stand a better chance of an outcome that honours the person’s wishes and provides dignity and comfort in their final days and months,” says Karen.
*Names have been changed to protect the privacy of people named.