CASE STUDY: Making decisions for someone else

Case study


But for the past three years Helen has suffered from dementia, and her cognition has rapidly declined in the last six months. In Emma’s words: “My mum doesn’t just forget to pay her electricity bill – she actually doesn’t know what an electricity bill is.”

Emma and her sister, Julie, became the substitute decision-makers for their mother when their father passed away 10 years ago, as a “safety net”. Though they shared medical and financial power of attorney for many years, it was only when Helen began showing signs of dementia that they started to have conversations about her care. According to Emma, the need to actually make decisions for their mother happened even more recently. “The dementia has really kicked in and she’s now in a nursing home. My mum has let go of responsibility for her life. She doesn’t make decisions on her own anymore.”

Emma says that because she had thought about her mother’s future care while she was in full health, the responsibility that comes with making decisions for her hasn’t been a shock to the system. “I’m grateful that Julie and I didn’t have to work out the legal implications of mum’s health and financial decisions when her dementia began to have a profound impact, because the plans were already in place.”

Julie, who works in health services, instigated the conversation about Helen’s preferences for advance care planning, involving her lawyer and doctors in the process. These preferences were documented through legal forms and Emma is confident that Helen’s wishes have been upheld. Emma recalls her sister saying: “Mum, we’re going to address this [through advance care planning] and you get to choose.”

Emma is aware of Helen’s preferences for care – but when it comes to making a decision on her behalf, she still needs to talk it through with her sister. Having the support of a sibling throughout this time has been invaluable, Emma says. “Because new decisions are being made with no precedent, having someone who’s in the same situation as you, with the same emotional investment, is absolutely crucial.”

While Emma and Julie may be required to make a decision on their mother’s behalf on any given day, Emma says they are taking the process as it comes. “We’re not actually making moves unless one of us receives a phone call about our mum’s self-respect, dignity or health. That’s what we act on.”

Recently, Emma had to intervene in her mother’s health and personal care when Helen developed a sexual relationship with another resident in the aged care home, who also suffers from dementia. While she wants her mother to be happy, Emma says that Helen’s welfare takes priority. “My primary concerns are mum’s dignity, health and ownership of the relationship. I’ve advised the doctor that she is sexually active so that sexual health is addressed as part of her care.”

“I’m grateful that Julie and I didn’t have to work out the legal implications of mum’s health and financial decisions when her dementia began to have a profound impact, because the plans were already in place."

Emma recalls another occasion when Helen called her to say she was feeling pain in her legs and it was waking her during the night. “I think my mum told me about it, rather than the nurses, because she simply didn’t understand what to do. I had to call the nurses myself and request medical attention for her.”

Emma believes that her mother – a vivacious woman who is normally the centre of attention – struggles with those moments when she is aware of her pain and age, and may even be embarrassed by them. Emma explains that when she and Julie are making decisions on Helen’s behalf, they reflect on her life and the way she conducted herself before she had dementia. “My mum has been a self-contained, very dignified, well-groomed woman her whole life. So she has already set the boundaries of our decision-making in that we need to maintain that level of self-respect.”

Emma says that being prepared and having a plan in place makes a huge difference, something she and her sister have reflected on recently. “When mum’s health rapidly declined a few months ago, we couldn’t help thinking what it must be like for people who have not thought about advance care planning. It must be a nightmare. I consider myself lucky.”

"We're not actually making moves unless one of us receives a phone call about our mum’s self-respect, dignity or health. That’s what we act on."

Emma believes that her mother – a vivacious woman who is normally the centre of attention – struggles with those moments when she is aware of her pain and age, and may even be embarrassed by them. Emma explains that when she and Julie are making decisions on Helen’s behalf, they reflect on her life and the way she conducted herself before she had dementia. “My mum has been a self-contained, very dignified, well-groomed woman her whole life. So she has already set the boundaries of our decision-making in that we need to maintain that level of self-respect.”

Emma says that being prepared and having a plan in place makes a huge difference, something she and her sister have reflected on recently. “When mum’s health rapidly declined a few months ago, we couldn’t help thinking what it must be like for people who have not thought about advance care planning. It must be a nightmare. I consider myself lucky.”

Advance care planning:

  • is essential to person-centred care
  • promotes care that is consistent with a person’s goals, values, beliefs and preferences
  • prepares people and their substitute decision-makers for making healthcare decisions
  • improves outcomes for people, their family and carers, health, aged and community care workers, and the health system
  • is part of routine care, and the person’s healthcare journey
  • is an ongoing process
  • may be initiated or completed by the person themselves or by health, aged and community care workers.

* Names and personal details have been changed for privacy reasons

† Advance care planning documents can have different names depending on the state or territory. Find forms for your location >

Read other case studies

  • Case study

    The things that matter

    Advance Care Planning Australia

    Community educations sessions and facilitated discussions guided by volunteers is a way to prompt individuals to think about advance care planning.
  • Case study

    The key matters

    Advance Care Planning Australia

    The process of advance care planning can help you work through important issues.
  • Case study

    The state of things

    Advance Care Planning Australia

    Australia doesn't have a national law covering advance care planning, so it is help to understand the requirements for your state or territory.