How can you ensure dignity during end-of-life care?

The end of someone’s life can be unpredictable. There may not be any certainty as to when death comes, but there is a shared belief that we all want a dignified passing.

Past studies indicate almost one-fifth of deaths in older people occur in residential aged care settings, and percentages double for every 10-year increase in age. There’s no shying away from the fact that aged care facilities are the last stop for many people.

That’s why they play such a crucial role in ensuring dignity is maintained during end-of-life care. It’s a time when a resident is arguably at their most vulnerable, and it’s up to those around them to provide a fitting farewell.

Not only is this a moral decision, but it’s the first of the Aged Care Quality and Safety Commission’s Quality Standards: consumer dignity and choice. Your facility is there to support informed resident choices about their care and services, including end-of-life.

End-of-life planning your organisation and staff will be involved in may include:

• Facilitating advanced care planning
• Holding conversations about dying, such as place of death
• Recognising signs of deterioration in residents
• Providing medical and legal support 
• Enabling culturally inclusive end-of-life choices
• Caring for the family
• Coordinating after-death care, including legal and cultural practices 

Resources from organisations such as Palliative Care Online Training, palliAGED and End of Life Direction for Aged Care (ELDAC) are incredibly beneficial for training and development purposes.

End-of-life care is about more than just training, however, and there are a number of additional steps you can take to ensure dignity is maintained.

Open conversations about end-of-life

Residential aged care facilities play a crucial role in hosting conversations about end-of-life matters. Whether it’s residents, staff or family, there should be openness and comfort in talking about death.

Dr Katrin Gerber, an end-of-life researcher from the University of Melbourne and a research fellow at the National Ageing Research Institute, said she has seen many family members who are unwilling to discuss dying and end-of-life.

“In many cases, end-of-life discussions are put off until overwhelmed family members and staff are faced with urgent decisions during times of medical crisis,” said Dr Gerber. 

But there will be residents who are more comfortable speaking about death and this is where staff can step in to initiate important conversations.

“I remember, one afternoon, an older resident was talking about a family friend who had been in a coma for a while after an accident and he said, ‘I wouldn’t want to live like that’,” said Dr Gerber.

“Instead of shying away or ignoring the topic, the staff member used this as a conversation starter, asking ‘What do you mean when you say you wouldn’t want to live like that? Can you tell me more?’

“We must create repeated opportunities for these discussions to take place and step away from the idea that they are one-off conversations.

“It’s never too early but the right timing certainly plays a role.”

Open conversations about end-of-life matters can be beneficial if a resident does not have an advanced care directive in place. Carers and family members should be included to ensure everyone understands how to best support a dignified end-of-life.

Advanced care directives 

An Advanced Care Directive is perhaps the most important document for a resident to complete as it clearly outlines substitute decision-makers and end-of-life care directives. Health professionals and family members will have to follow the directives. 

However, Dr Gerber said that while end-of-life care questions are asked on admission to aged care, they are often left alone until a resident starts to deteriorate. By that stage, their end-of-life decisions may have changed. 

“End-of-life care discussions and advance care planning go far beyond just completing a piece of paper,” said Dr Gerber. 

“It’s great to have something in writing but contemplating what matters to you at the end of your life, and what kind of treatment you would or would not want, is not a tick-box exercise.”

“Considering one’s own mortality is a tough discussion to have and it requires trust and rapport between staff and residents.”

Your staff may play an important role in supporting a resident who is completing or updating legal documents such as an Advanced Care Directive, Enduring Power of Guardianship, Medical Power of Attorney or Anticipatory Direction.

You can provide them with the appropriate paperwork or legal contacts. Or, if the resident has cognitively declined, you can ensure their documents are secure and can be easily found.

Support their place of death choice 

Place of care and place of dying play crucial roles at the end of one’s life. Most individuals do not view an aged care facility as their place of death with the stigma quite confronting. 

Dr Gerber said one case study included a participant who called his facility a “waiting room” where “you go there to wait to die”. 

It’s important to reinforce to residents that they have not forfeited their influence leading up to their end-of-life. Where a resident ultimately passes away should be included in advance care directives and end-of-life conversations.

This is perhaps even more necessary as some residents may have more choice in how they die through voluntary assisted dying (VAD), which will be legal (with restrictions) in all States by the end of 2023. If you would like to learn more about the latest VAD laws, ELDAC has clearly outlined each State’s laws.

There are important legalities to be considered, but facilitating place of death requests in a respectful, safe and feasible manner will provide dignity at end-of-life. It may not be an option, so hold open and honest discussions to ensure dignity remains.

If the place of death is your facility, Dr Gerber said staff need to be prepared, trained and supported when caring for people who are dying in a high mortality setting.

“A lot of nursing staff have longstanding relationships with their residents and play an essential role in supporting them as they approach the final stage of their lives,” said Dr Gerber.

“However, they may lack training in caring for dying patients just as palliative care staff may lack training and experience in caring for people with severe mental illness or cognitive decline. 

“Cooperation, collaboration, and cross-training are therefore needed to support aged care staff.”This is where resources from organisations such as palliAGED’s Practice Tip Sheets for Nurses provide easy to understand information for palliative and end-of-life care.

Culture needs to be respected

An increased understanding of cultural needs is required to assist with a dignified end. Many residents hold religious, cultural or spiritual beliefs that are closely tied to their understanding of death and the afterlife.

“In our busy healthcare system, we are often so focussed on dealing with immediate physical needs, that we forget that dying is a deeply relational, emotional, spiritual and cultural process,” said Dr Gerber.

“Cultural factors can influence a resident’s health literacy, their willingness to discuss death and dying, and their desire to involve their family in end-of-life discussions.

“Rather than making assumptions based on culture, the focus should be on offering individualised care, empathy and warmth.

“This involves asking residents about how much they want their family members to be involved in decision-making, how much they want to know about their condition and whether they have any specific cultural or religious needs that are important to them.”

As Australia’s ageing population becomes increasingly diverse, an investment in your own staff’s ability to provide culturally competent support is essential.

This includes providing professional translators to discuss sensitive topics such as the end-of-life experience.

Dr Gerber said cultural barriers often prevent family members from speaking about such confronting topics publicly, and the use of family or friends as informal interpreters may lead to a breakdown in dignified communication. 

“In certain cultures, the concept of filial piety is highly valued, where it is part of adult children’s caring responsibilities to protect parents from bad news and save face,” explained Dr Gerber.

“This can impact which information families communicate to the resident.”

Regardless of culture, it’s also likely that many families will be uncomfortable with end-of-life discussions. As a highly emotional time, some will look to avoid harsh conversations.

But as the likely place of death, residential aged care facilities play a key role in facilitating conversations and allowing a resident to feel dignified. 

While you’re not there to make the decision for them, you can contribute by encouraging discussions between residents, families and relevant healthcare professionals. Topics such as end-of-life care and death deserve to be spoken about openly to ensure residents maintain their dignity.