It never ceases to amaze me that in our fear of talking (or even thinking) about death, we’ve created a vacuum where we’re blindsided by how emotionally and physically taxing it is to care for someone who is dying.
People often tell me they don't want to burden their family with the messy, emotional heavy lifting of death. Forgetting that even if their dying happens away from home - in a hospice, hospital, or residential care home - we don’t get to circumvent the complex, multifaceted experience of caring if we've choosen to care.
So many people have told me what an honour it is to have been present for the living as they journey towards death - offering a final act of love and compassion, but it also demands a great deal of strength and resilience.
I think it's so very important to tell all of these stories so we don't turn up at home base blindsided.
In recognition of Palliative Care week I approached experienced End of Life Carers Sandra Danher and Joy Martin from The Last Gift and asked if they would share their wisdom and experiences of death and dying from many years as End of Life and Home Death Carers, Death Doulas, and more recently Death Cafe hosts.
I'm so very pleased they agreed. Their responses are below.
What is a Death Doula and why would I want one?
Doula is an ancient Greek term meaning servant or carer. It’s modern meaning refers to someone who is a non-medical companion who offers support both physically and/or emotionally. In recent times the term Doula has become common in the birth space, but is gaining more prominence as people opt to have less medicalised deaths.
As doulas we hold space for people anywhere from diagnosis to death; we offer the dying person someone to talk to about their fears and wishes, we help them make plans, facilitate their end of life wishes, advocate around medical intervention, all the way through to setting up their death space in a way that helps achieve a calm peaceful death - our job is to support people in a way that many loved ones find too painful to be involved in.
People who are dying often want to discuss things that their loved ones find too painful to be involved in; when to cease medical treatment, funeral arrangements etc. In this case the dying person feels they cannot express their fears or ask questions, for fear of hurting those they love (and who love them). A trusted doula can help bridge this gap.
We also help families navigate life after death by helping them plan home funerals or facilitate cooling beds so they keep the body at home for a few days - this isn't for everyone, but those who have used this service believe allowing time to mourn eased their grief.
Many people express a wish to stay at home as long as possible. How does a doula help make this possible?
Palliative care is the most comprehensive support for the dying person (this can happen at home, or in a medical setting). If people choose to die (or approach death) at home palliative care services provide equipment such as hospital beds, and toileting aids but also facilitate nursing staff who visit daily (or as needs require) to provide medical care.
The average palliative patient only sees a medical professional about 2% of the time they’re accessing care - this leaves a huge gap in physical and emotional care. As death doulas we work to support the needs of our patients, their loved ones, and the palliative care medical team to ensure the dying person recieves the care they require.
What would you love people to understand about death?
We’d love people to know that talking and thinking about death is not morbid. It doesn’t make death come closer or faster. In fact any fear is lessened by learning about the object of your fear. Death is no different.
We both take satisfaction in growing a trusting relationship with our patients, where honest conversation dampens the fear of death and allows more peace to arise.
As a voluteer spiritual counsellor at the Royal Adelaide Hospital I (Sandra) learned the difference between dying in hospital attached to tubes and wires and a peaceful home death. I would like to help others achieve a gentle death and show them what a privilege it is to be present at the death of a loved one.
For Joy experiencing the death of a loved one brought an awareness of how disassociated we are from the reality of death and caring for our dead. Her path is to give others the opportunity and options to bring death back to the family, and help them care for their loved ones, as it was for hundreds of years until death became an industry.
How can an Advance Care Directive help people and their families at the end of life?
An Advance Care Directive doesn't come into effect until a person has lost capacity and as doula’s we’re unable to enact any medical decisions.
That being said we spend a lot of time getting to know our patients and understanding what their wishes are - which includes reviewing their Advance Care Directive and using the information within it to bring the wishes of the dying to their family.
Many people have also worked on what we call a Living Will. This is a series of questions and answers, a personal heart-felt declaration, that help the dying person express wishes and desires as to what is important to them as they die.
What is your favourite death related book, podcast, or resource?
Our favourite book is ‘Die Wise; a manifesto of sanity and soul’ (written by Stephen Jenkinson). It's very different to most of the books about dying as he challenges conventional thinking and demands we think outside the box.
'What does a good death mean to you?
I think everybody would say that a good death involves being pain-free or as comfortable as possible. We believe conflict, trauma, unresolved personal issues, and fear can exacerbate our pain.
Stephanie Dowrick explains it like this: I do feel that we can have a good death. I see that as timely, peaceful, and conscious. To have a chance to say what matters most, to calm one's mind to prepare the heart and become increasingly souls away. What a privilege that would be.