A burial shroud is laid out a Death Doula workshop in Brisbane.

Listening to the dying and giving them a voice too: The emerging role of the Death Doula

There are two types of people in this world: Those who accept they and the people they love will die, and those who don’t.

It’s the latter who don’t want to talk about the inevitable and who label any such discussion as morbid.

But, like it or not, death happens, sometimes too soon, sometimes not soon enough.

Selling my book The Bottom Drawer Book: an after death action plan at the local market soon after its release, I had a woman look me in the eye, scowl and matter-of-factly tell me it was a “stupid idea”. And off she went.

I felt sad that anyone in her life who wanted to have a discussion about death or their terminal illness or their funeral plans wouldn’t be able to. They would be abruptly and rudely shot down in flames.

Thankfully there are people very open to the idea of talking about death and dying. These are the death doulas.

I recently attended a death doula workshop where, for two days, 15 like-minded people learned about the role of a death doula, death mid-wife or end-of-life consultant.

Some were planning to become death doulas while others, like me, just wanted to learn about the emerging service being offered to the dying and/or their families. Death doulas have been around for years, but they’re only now becoming known in more conventional circles.

So, what is a death doula?

First and foremost, it’s someone comfortable talking about death and dying.

It’s someone who bridges the gap between the dying and their families or partners. Sometimes it’s someone who simply helps the dying person to die – holding their hand, explaining things, offering assurances, or simply being there if there is no-one else is.

You see, it’s a challenging and confronting time when someone is close to death. It’s an emotional time that can sometimes see common sense go out the window. Grief fuels sometimes unhelpful emotions and actions, family arguments and confusion. And it’s not uncommon for the wants and needs of the patient to become secondary to the wants and fears of family members.

How often does a mother try to please her children? Let’s face it – when people are nearing death they don’t feel like eating or drinking. They don’t necessarily want their family sitting beside them either, staring and waiting for the next breath to come. Yet the loving daughter pleads for their mum to eat so as to stay strong, hoping for a miracle. But when is enough? When is it time to let go? There comes a time when it simply “is time to die” and the circle of life ends. A death doula can remind family of this. A death doula can offer a balanced eye and hand during these times, offering spiritual care, psychological and social support. They can be someone to talk with.

It’s a paid role. Death doulas are usually hired by the family of the person who is nearing their end of life, but the doula’s responsibility remains with the dying. They’re paid an hourly rate, or can be hired on daily or weekly terms.

A doulas after-death role

If they haven’t already, when the time comes death doulas an also help organise home vigils and home funerals. (Yes, you don’t have to use a funeral director, and the body can be taken home from the hospital.) Doulas can help facilitate discussions with funeral directors and they can ensure that grief-stricken partners aren’t taken advantage of when making funeral decisions.

Awareness of end-of-life consultants or death doulas isn’t widespread and some in the medical profession are yet to be convinced of their worth. But as our population continues to age at an ever-increasing rate, hospitals and nursing homes come under more pressure, and medical staff become busier, the role of those death doulas willing to sit with and reassure the dying, to listen to and speak for the dying will become even more important.

 

Lisa Herbert is a journalist and author. The second edition of The Bottom Drawer Book: an after death action plan is available online in Australia for $18.95. Order here.

I shared my death doula training experience with these amazing people. (I’m 4th from the right) 

Advance care plans and Facebook legacy contacts: new additions to The Bottom Drawer Book’s second edition

It’s become increasingly obvious there are many people who are keen to be a prepared for the inevitable, even though that may not be any time soon. They also want to take the pressure off their loved ones when the time comes. Western society typically labels any  talk about death and funerals ‘morbid’ but, thankfully, that antiquated idea is slowly changing.  You see, the first edition of The Bottom Drawer Book has sold out and I get emails from people telling me how it has helped them.

“Our 22 year old son is dying and while we have generally discussed his wishes, this book will make things easier. I have ordered 4 books for all the family so we can all sit down and fill in our books together so that our beautifully amazing son won’t be the only one making the hard decisions and we can make it light-hearted and fun. Thank you for making a difficult discussion so much easier.”

I’m not going to lie. I cried when I got that email. Humbled almost beyond comprehension, it made me so glad I followed through on a crazy idea to write an after death action plan.

Three years later and the second edition is out. There are only a couple of changes.

Advance care plans

I’ve included a section on Living Wills. In other words, these are simply your plans for your future medical care.

The Royal Australian College of General Practitioners estimates one in four of us will not be able to make medical care decisions as we near our end of life. That’s where what’s called ‘advance care plans’ come in. It’s a list of your wishes, including who you want to talk to your doctors on your behalf, if you’re too out of it to make any sense. Your plan can outline what procedures you want or don’t want eg. do you want to be resuscitated? Do you want feeding tubes removed? It can outline where you’d prefer to die and even if you want your dog or cat with you.

While advance care plans aren’t necessarily legally binding they will help your doctors and family make health care decisions if you can’t. Each Australian state and territory have different regulations and terminology when it comes to care plans and health directives so ask your GP or local health care about them. There’s also some good information online. This website HERE has links to each state’s documents. There’s also info about appointing an enduring power of attorney or enduring guardian. The person or people you nominate for this job can make financial, lifestyle and health decisions on your behalf if you’re not well enough too.

Facebook legacy contacts

The second edition of The Bottom Drawer Book also includes some updated information from Facebook about what happens to your Facebook page if you die. As mentioned in the first edition, you can choose to have your page deleted or memorialised. Having your page memorialised means your page becomes somewhere your friends can share memories and leave comment. Facebook has now also introduced the ability for you to nominate a legacy contact who takes control of parts of your Facebook page. That person won’t be able to see your messages or delete any of your content or friends, but they can post updates (such as funeral information), change your profile picture and accept friend requests.

We live so much of our life online these days that when we die there’s an awful lot of information, photos, blogs, videos etc that will be left orbiting cyber space. You have the ability to manage what happens to all that stuff. All it takes is a little preparation, and that’s where The Bottom Drawer Book: an after death action plan comes in. It costs $18.95 which includes delivery within Australia.

Boxes containing The Bottom Drawer Book