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Palliative Care Week gives us the opportunity to pause and reflect on the process of dying. Death is inevitable and a part of life, we can’t change this. What we can change is how the experience of dying is supported to be a positive experience for consumers and their families and friends. 

Palliative Care week is particularly topical this year with the recent Voluntary Assisted Dying legislation change in NSW. Although it’s expected the change won’t come into play for 18 months, aged care consumers and their families are openly expressing their views which offers the sector an opportunity to revisit the end of life pathway and experience. 

Data tells us that people entering residential aged care are older and more frail. The length of stay is less because of this, which is why the admission process and openly discussing the advance care plan is so important. Understanding the consumer’s wishes, personal preferences, and anxieties is fundamental to ensuring the care team is well informed, and the consumer and their family are comfortable with the plan. 

As we know, plans can change very quickly. However much you prepare, sudden deterioration can result in a challenging situation whereby the consumer and the family are very distressed and highly emotional. 

 

So what is a good death, and how can we ensure that we are doing everything we can:

Personal Preference for a specific pathway

When first discussing their advance care plan, some consumers may have very strong thoughts on the pathway that’s right for them. Some may have never openly spoken about their death before. Their views may change throughout their stay, so revisiting their advanced care plan at a case conference and recognising changes to their health, topics of conversation, and general wellbeing are critical. It’s our responsibility as care professionals to actively listen and understand what their biggest fears are, what’s important to them and how we can best support their choices. 

Religious and spiritual elements 

Religion and spirituality often get confused, and while they go hand in hand, they both have quite different meanings. Understanding a person’s spirituality means looking at all the things that give meaning and purpose to their life. It’s about understanding the issues that are significant to them. They may be feeling alone, isolated, disconnected, demoralised and even have a sense of hopelessness, struggling to come to terms with what their life has been about. They may need support to acknowledge what has given their life meaning. 

Having a religious faith and beliefs can often give comfort and a sense of peace. Receiving pastoral care can result in a positive experience, particularly for people who believe there is something to look forward to. 

However, this is not always the case. Some people who have a strong faith can often question why and what they have done wrong, leading to a crisis of faith and a feeling of nothing to hold on to. 

In both cases, understanding a person’s spirituality and religious beliefs, listening and observing the support they need and engaging the multi-disciplinary team for support and guidance. There may be a significant ritual or connecting with a particular community cultural group that could make a profound difference. 

Emotional wellbeing 

Emotional wellbeing can present in many forms, such as fear and sadness, anger and resentment, helplessness, regret and frustration, relief and acceptance. Emotional wellbeing is complex and unique to every individual. Understanding a person’s feelings and experiences can be challenging in aged care for many reasons. For example, shift patterns, which is why clear communication at handover, detailed progress notes in your care management system, huddles or 10 at 10 are fundamental to ensuring the whole care team are across conversations, deterioration and family communications.  

Some tips for your care teams;

  • Encourage consumers to talk about their fears and worries in a calm, private and safe environment. Listening actively and without judgment is essential to feel safe and heard.
  • Acknowledge how the person feels and find out how they prefer to be supported emotionally. Some prefer a more upbeat approach, while others may want you to just be there and listen.
  • Do not try to fix their emotional problems. Ask open questions and allow the consumer to talk about how they’re feeling rather than asking yes or no questions.
  • Help the person to relax by enabling them to do activities they enjoy, like listening to music or looking at photos. When they’re relaxed, they might find it easier to talk about their emotions.
  • Offer a hug or hold their hand. If it’s appropriate and they consent, this can help them to feel safe and supported.
  • Be prepared that the person might cry. Crying is a common emotional response and sometimes an expression of emotional distress. Your team might feel unprepared but just being there and being present and showing empathy shows support and understanding. 
  • Liaise with the multidisciplinary team, and attend communication skills training. This can help the care team learn from their experiences and develop confidence in talking about death. 

Dignity and quality of life

Dying with dignity is about the person having control over their advanced care plan, so they feel comfortable with their choices, whether this is to be with family around them, with a priest or alone. Family members often grapple with this concept as they see their loved ones deteriorate. For families and friends, it can be a very emotional time of mixed feelings, disbelief, or in some cases, relief. 

Open communication is key to ensuring the experience for all parties is positive. We can’t control how a person dies but we can help to make it a good ending, with comfort, support, love, kindness and respect. 

#NPCW22 

 

Helpful resources 

ELDAC

Palliative Care Australia

Palliative Care out of hours helpline 1800 548 225

 

Did you know we have an End of Life Care Manual available for purchase? To find out more please click here.

 

Claire Ward

Aged Services, Compliance Remediation & Consumer Experience Specialist

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