How palliative care empowers families in end-of-life decisions

Palliative Care

Article by 

Lynne Casey

Palliative Care Victoria launches “Dignified and Respectful Decisions” project

By the time Nola moved her husband Henry into residential aged care, she was physically and emotionally exhausted from the years of care she gave to her husband, who was living with dementia. The heartbreaking decision to remove her husband from their family home of 35 years and the stress of their circumstances resulted in Nola experiencing an episode of psychogenic amnesia.

“The day Henry went into care, I came home and cried for the rest of the day,” recalls Nola. “As Henry progressed into full-blown dementia, the difficulty and stress of our daily routine was so pervasive that I could no longer remember blocks of time and what happened.   Looking back, I realise I had very little professional support then. I was isolated because my family didn’t recognise the signs of their father’s dementia, and I was having to make decisions about Henry’s care on my own. It was really really hard.”

While Henry has since passed away, Nola is now a strong advocate for the importance of supporting individuals with a family member in care who, like Henry, has lost their decision-making capacity. 

“It is so important to have strong support during such a stressful time, and a big part of that is to make well-informed decisions that are aligned with the treatment decisions the family member in care would have wanted for themselves,” she says.

Nola Horne
Nola Horne

To help family decision-makers navigate caring for a loved one in care, Palliative Care Victoria launched the “Dignified and Respectful Decisions” project. This new initiative provides valuable guidance and information to empower family members and substitute decision-makers caring for older Australians who can no longer make decisions for themselves. The project aims to support families to better understand their role and be better prepared for what’s next, while encouraging them to have more collaborative conversations with their loved one’s aged care team.

“Through the Dignified and Respectful Decisions resources, we aim to build stronger relationships between families and aged care providers, ensuring that the voices of older Australians and their loved ones are heard and respected. It is our belief that by fostering open, collaborative dialogues, we can significantly enhance the care experience for our aged community across Victoria. These new resources are a thoughtful step towards a more compassionate, respectful, and person-centered approach to aged care,” said Violet Platt, CEO of Palliative Care Victoria Check the carer’s association in your state for similar projects.

Who can be a decision-maker?

When a person has lost the capacity to make decisions for themselves, they require a substitute decision-maker to act on their behalf. In Victoria, this figure is known as a Medical Treatment Decision Maker while other States use different terms. Substitute decision-makers may be appointed by a person before they lose capacity or determined through a set legal hierarchy of people close to the individual. The most important aspect of being a decision-maker is to make decisions that most closely align with what that person would choose for themselves if they were able.

Being prepared and equipped for the role of decision-maker

Taking steps to be prepared for the role of decision-maker for a loved one in care will assist when decisions need to be made.

  • Being the expert on the family member in care

At the heart of being responsible for making decisions for a family member in care is having a sound understanding of what the relative would want for ongoing care and at end-of-life. Where an advance care plan exists, this is a good place to start. Where a family member’s wishes haven’t been communicated, gathering insights from other family members and close friends who knew the family member well and talking with their general practitioner can be a helpful approach.

With this understanding in place, the decision-maker will be able to share their family member’s wishes and preferences for care with the medical and care team with more confidence that the decisions they are communicating reflect the decisions their loved one would make if they were still able to communicate their wishes.

  • Understanding the different types of decisions

Some decisions are straightforward, such as letting the staff know what food their family member prefers or whether they would like to attend an outing. However, some decisions are more challenging, like determining what medical treatments their family member would choose at different timepoints along the journey.

Decisions regarding treatment and care can sometimes arise abruptly, requiring immediate attention. Talking with the family member’s doctor and the care team at the aged care home about some of the medical treatment choices they may be faced with can help the decision-maker be better equipped to make those decisions when the time comes.

  • Keeping track of the health of the family member in care

Monitoring the health status of the family member in care is another critical responsibility, enabling the decision-maker to note any significant changes that might influence care decisions. Regular communication with the nursing team is instrumental in staying informed.

Where the family member has dementia or another life-limiting condition, knowing what to expect as the disease progresses can help the decision-maker anticipate and understand their family member’s symptoms and abilities. Talking with the care team at the home or sourcing information from a reputable source such as Dementia Australia can help.

Knowing what happens when someone dies can also be helpful, including understanding what the decision-maker and visiting family can do to support the family member who is dying and how the aged care home cares for residents during the dying process.

  • Remaining strong and caring for yourself

Making medical and treatment decisions for another person can be challenging and can require some emotional fortitude to make tough choices under pressure.

It is important to put some strategies in place to support wellbeing. Sometimes this can be identifying a family member or close friend who can help with some of the tasks or to think through certain decisions that need to be made. Another useful strategy can be to schedule time each week to do something replenishing. This might be as simple as getting together with a friend for a coffee or finding time to take a walk in the sunshine. It can also be helpful to have at least one person or an organisation to call when a family decision-maker becomes overwhelmed or just needs to talk about their situation.

Building a strong working relationship with the aged care home

When a family member moves into an aged care home, one of the first tasks for the decision-maker is to familiarise themselves with the staff who will be directly involved in their loved one’s care. This includes nurses providing clinical care, personal care attendants, and lifestyle staff, each playing a pivotal role in addressing the resident’s various needs.

“When families first come to us with their loved one, it is often a time of great stress and moving a family member into our home presents a whole new set of challenges. Our focus is on helping the family to feel comfortable and supported as they move their family member into our care. We also talk openly with families about end-of-life, and their family members wishes and preferences for care at that time. This can act as a prompt for those families where there are no advance care plans or clear understanding of their family members preferences for future care” said Paul Rosenquist, palliative care nurse.

Many aged care homes offer access to specialist palliative care services for residents with complex needs or severe medical symptoms stemming from life-limiting conditions. Some facilities can provide hospital-level care through community-based hospital specialists, ensuring a broad spectrum of care within the aged care environment.

Enquiring about the availability of these different services will help create a more complete picture of what can be provided within the home now and for when the family member’s health changes and more care may be needed.

Getting to know the aged care team, keeping the names and contact numbers of key staff handy, and knowing who to contact about different aspects of their loved one’s care and health will all contribute to establishing a strong and trusting relationship between the decision-maker and the aged care home.

To access the Dignified and Respectful Decisions website and to order your free resource pack, please visit their website.

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