A couple of years ago I wrote my own eulogy. I was young and healthy (relatively) and certainly had no expectation of dying any time soon. But the exercise brought home to me the questions that really matter when you are looking death square in the eye: What has my life been about? Did it matter? What legacy will I leave? Is there anything I need to do before I can face death with some sense of peace? What awaits me after I die?
These are questions that many elderly and chronically ill people are wrestling with right now.
“As people get closer to the end of their lives, questions about their spirituality will become more acute.” – Ilsa Hampton
“Spiritual questions often become heightened for people as they get older and then as people get closer to the end of their lives, questions about their spirituality will become more acute … All those sorts of big identity questions, they’re all tied up with people’s spirituality,” explains Ilsa Hampton, CEO of Meaningful Ageing Australia, an association that helps aged care providers and others to care for the pastoral and spiritual needs of older people.
According to Hampton, spirituality does not simply refer to religion or faith, but encompasses the “meaning, purpose and connectedness in people’s lives – connectedness with themselves, others, creativity, nature and some sense of something beyond themselves, something bigger.” She adds that “for a lot of people that something bigger has a name and it’s called God and all of that is informed by our faith tradition.”
The main problem in addressing these spiritual needs is overcoming the fear of death – not just for those facing death, but for those caring for people who are. Many staff in health, aged care and community services have simply not had the opportunity or the time to learn about the spiritual side of death, says Hampton. As a result, they have little understanding about how to help make meaningful end-of-life preparations.
To link with National Palliative Care Week (19–25 May), Meaningful Ageing – in partnership with UnitingCare Qld, Uniting (NSW/ACT, Vic and Tas) and Uniting AgeWell – has released a new 60-minute training video and guidebook called Spirituality of Dying. It has been designed to increase the skills and awareness of all aged care workers. Also, it has released another tool to help organisations implement the National Guidelines for Spiritual Care in Aged Care (which informed the new compulsory Aged Care Quality Standards to be rolled out across all aged care providers from July 1).
Resources such as these are much-needed for anyone working with the aged and dying, says Hampton. “Even if you’ve got a brilliant pastoral care team, you shouldn’t leave all spiritual care just to that team because you will never be able to meet everybody’s spiritual needs in that broad sense.”
“There’s also this whole other … spiritual side that if it’s not attended to, the person can actually still end up in physical pain.” – Ilsa Hampton
In palliative care settings, which ideally have spiritual care embedded within them, there is still often a gap in understanding about how exactly to put this into practice.
“In those models they talk about the importance of the clinical side so, for example, managing someone’s symptoms and pain. But there’s also this whole other … spiritual side that if it’s not attended to, the person can actually still end up in physical pain, even if all the possible medical reasons for it [have been attended to].”
The very first step in helping those who are dying – which applies to both professional and personal carers, according to Hampton – is to address the ‘D’ word in our own lives.
“It can be scary and it’s not something that as a community we have a lot of confidence about or literacy around.”
“Being able to build our level of confidence and comfort within ourselves I think is often the first step – daring to think about [death] in our own lives, and then perhaps having the courage to show to our loved ones, older relatives or friends that we’re not afraid to have that conversation. Not everybody wants to talk about it but quite often if people do get a sense that that you’re okay to talk about it, then they will.”
“That can also mean helping loved ones and other family members to perhaps think about things … they’ve been putting off for years.” – Ilsa Hampton
Hampton points to resources on the Palliative Care Australia website to help start these conversations or even to start thinking about your own death. As National Palliative Care Week is themed “What Matters Most”, I ask Hampton what she thinks matter most when considering how to help people prepare spiritually for death.
She responds: “I think it is giving people the opportunity to have the conversations that matter and to be supporting people in a way that is kind of fearless – it’s actually being available and willing to get in there and support them in having the best death they can.
“That can also mean helping loved ones and other family members to perhaps think about things that they never wanted to think of or they’ve been putting off for years.
“You may also be surprised because sometimes older people … are actually preparing for their own death but they may not realise that other people are willing to go on that journey with them. They may have even planned half of their funeral … and really like the opportunity to have someone to talk to about it.”
Hampton offers more practical tips on how to spiritually prepare a loved one for death:
“If we’re talking best case scenario, they will have had plenty of time to prepare [for death] and to reflect,” says Hampton.
She notes that conversations about death with ageing parents need to start “well before they are actually needing any kind of support because then there’s no pressure around it.”
Some in the aged care industry recommend talking about care arrangements and other future plans when children are around 40 and parents aged about 70.
In contrast, Hampton points out that “nine times out of ten, the point at which people engage with aged care services is a point of crisis, and it’s really the worst time to be trying to understand a system or even think about what’s important to you.”
Enable appropriate faith practices
“Depending on who it is you’re supporting, if it’s a person of faith, it’s really making sure that all of the most meaningful prayers and rituals and other things that are right for that person are absolutely part of that experience,” Hampton says.
However, she warns against making assumptions about other’s beliefs or trying to impose your own ideas upon them.
“Even if you think you know something about that tradition, even if you’re supporting Christians, you can’t assume what that faith means or what the rituals are going to be. People are all very different – they have different approaches and everyone has their life history that they’re bringing to their faith …
“I think if you’re if you’re genuinely wanting to support the other person then you need to know that it’s not an opportunity to convince them of your point of view. Deep spiritual care is about understanding what matters most to that person.”
Have extensive conversations
In her own family, Hampton has set up a list of key issues she is discussing with her ageing parents and siblings, such as aged care support, advanced care planning (including appointing a substitute decision-maker), power of attorney, wills and funeral arrangements.
She adds, “But it’s also having time to have an open conversation with the people that are most important to [the person who is dying] about the things that are most important to them.”
“Sometimes that is done with the accompaniment of a spiritual care practitioner … so that might be called a chaplain or a pastoral carer who can really help piece and think through and prepare for that the final part of their life as they prepare to die.
“And in that process, they’ll be getting in touch with their legacy – the things that have been most important, the messages that they might want to leave and also there may be particular conversations that they’re needing to have. [Those] might be around people that they want to make sure they know how much they love them, it might be that they need to ask for forgiveness for things. It might be that they want to offer forgiveness to others.”
Consider a ‘spiritual will’ and ‘life review’
“Spiritual wills are becoming more common in Jewish communities in the States right now. It’s where people are going to explore and share some things around their legacy and what they want to leave for people in terms of enduring wisdom,” Hampton explains.
She outlines how this fits with a “life review”: “It’s where people have that opportunity to reflect on their lives and what it’s all been about, and address any unfinished business that they have. A spiritual or emotional will can be part of that process, where you actually capture some of those lessons learned or things that you really want to pass on. It might even be a favourite recipe or some memories or moments and lessons.”