End of life Doula v birth Doula

[EndofLifeDoula]

Lots of families embrace allowing a birth Doula in to their homes at such a special and poignant time. I’d like to offer myself to families facing death, bereavement and support the final journey.

I have lots of experience inc nursing, funeral care, counselling and I’ve completed 2 diplomas in this area of expertise.

I wonder if people would rely on this service when offered and see it as a support function rather than a business?

DoreensEatingHerSoreen and WellThisIsShit
Sorry you are going through this.
There is an excellent free online resource called Aura.com which is a platform to help people with terminal illness to forward plan. It's actually an amazing space, set up by a man with MND who wants nothing more than to help people.

OP what qualifications do you have? Would you be helping with medications and manual handling or providing more emotional type support?

Yes yes yes 100% yes, please do this.

I work in frontline healthcare and the fear and stigma around death is so depressing. People die in hospitals who could die peacefully at home and its wrong.

Do it. You're amazing

A friend started doing this a few years ago here in the US. She is an obstetrician who had to retire because of arthritis. She's also a Quaker. If I had to deal with a loved one dying I'm sure I would turn to her for help.

I think she also refers to herself as a death doula, or maybe an end-of-life doula.

I have no idea how to deal with the death of a loved one - when my grandparents died I was living far away, and other than that I've been lucky enough not to experience the loss of close family members.

The idea of volunteering for hospices is a lovely one, or to volunteer to support anyone who doesn’t have family or a support network. I don’t think most would go for (or could afford) ‘ paid for bespoke end of life care packages.’ I’m sure some people would and could. To me, morally, it’s not my thing. Dying and death- private intimate. Death is expensive as it is and I’m not sure it’s something that people should make money out of in that way to be honest. Just my opinion.

End of life advocate/champion/support, what's something that sums all of those up?

My mum died 3 years ago and it was very hard for my three siblings and I. It was also obviously very hard for my mum who said once that she didn't come first for any of us, we all had partners and children and my dad died a long time ago. I think she would have like to have someone there who was putting her first because emotionally they could. We were all doing our best of course but I could think of lots of situations where it would have been amazing to have someone there for us all, but especially her.

While I admire your enthusiasm OP, I'm struggling to see how, as 1 person on her own, you would be able to offer " individual, paid for, bespoke end of life care".
Would you have just 1 client on you books at any one time?
If not, how would you manage a situation where 2 people need you help at the same time? - very tricky, particularly when people are paying for a service.
When do you get time off?
How do you access clinical supervision so that you retain your sanity and maintain your equilibrium?
Who steps in if you're unwell or have a personal crisis of your own to deal with?
How will you manage family disputes - some family want you to sit with Mum but others don't?
Will you provide practical, hands on help or will it be an advisory service only?
Do you need insurance?

"End of life companion".?

I think the concept is a good one and the idea of a doula seems to express what you are offering better than therapist or counsellor. However I don't think the concept of a doula is that widely known in the world outside MN, so I would go with something else. End of life companion is my favourite so far, I think. Guide or mentor sound a bit "top down", assistant a bit the other way.

One reservation is how often this support is needed without people also needing more practical help with day to day nursing and personal care. I'm not saying there's not huge value to it, I just wonder how often people would go looking for this without also crying out for the really nuts and bolts practical stuff. This may be my misunderstanding but it sounds like you are not offering that kind of thing?

Yes I was also wondering how your bookings would work given the uncertainty of timescales. I'm imagining you will be there more as a consultant almost, rather than spending hours each day at their bedside(?)

If you are qualified as a nurse and can offer cut rate nursing supervision to someone dying in their own home, there would be a demand.In my experience, there is little available from Macmillan or Marie Curie although I appreciate this might vary depending where you live. Those without family carers,who do not want to spend their final days alone at home,may have to pay Care Home fees in some parts of UK for terminal cancer care if they are unable to secure a hospital place. I've cared for a number of relatives in their final illnesses and wouldn't consider hiring a death doula. I'm from a background where the sick and dying are cared for at home by family and religious beliefs are important,so I grew up with it. Lots of people never really experience death of someone close until they themselves are middle aged or elderly and have no coping techniques. However, I don't know that the final days are when they would want to hire a doula. I wonder if spreading your net to what the US call hospice care - i.e. care of people at home with long term conditions such as MS or Parkinsons, or even dementia ,would not be more attractive and appreciated. This area really is a mess and so much could be done to enhance the sufferers' lives and support family. Many wrestle with this long distance and it's common to spend 20 hours a week trying to organise things even if you live nearby. So much less stressful if there is someone who knows what they are doing. I really think there would be a big demand for this if you could get it appropriately branded. Death Doula has a bit of a creepy Mrs Gamp feel to it.

Sounds like q cynical way for someone who isn't a HCP to cash in on senile old people.

I expect it to catch on amongst the white middle class instagrammers and spawn an insidious army of unchecked scammers in the background.

It sounds like an excellent idea to me. The more support and discussion around death the better as far as I’m concerned.

@Sapho47

Sounds like q cynical way for someone who isn't a HCP to cash in on senile old people.

I expect it to catch on amongst the white middle class instagrammers and spawn an insidious army of unchecked scammers in the background.

I did ask about regulation but I think op must have missed my question.

I would look to Marie Curie if I needed help.

There is no way I wouid have the emotional energy to select someone myself, or want to, have the hassle/stress of checking references, DBS, checking T&Cs for hiring domestic staff etc. Much easier to deal with an organisation.

So a regular nursing / care agency wouid be next port of call. Names of good private carers get passed round between families as much as those of entrance exam tutors do! So that might be your 'in'

I'd definitely ditch the name 'doula'

This is an established role in the country I live in, and is called a Sterbebegleiter which translates as dying companion.

I definitely think companion is a word you should consider.

Here it involves having cold hard factual knowledge about all the legalities and administration and beurocracies of death to advise and guide the dying person and their relatives, but also endless patience and hours of sitting by the dying person's side when their relatives can't be there - for example through the night. Some assistance with things like eating and drinking is involved but no intimate or nursing care. Liason with healthcare support is part of it too.

I encountered people doing this as a job when I worked in a dementure care home - it's not just an advisory role by any means and one very much done in person, sometimes with people who's illness makes them very challenging.

I live on my own and I would definitely look into using a service like this. I think it might become more relevant as fewer people get married or gave children as is the case.
For me, it would be a way of putting less emotional and physical care pressure on siblings and wider family.

*attendant would be an alternative to companion - end of life companion or attendant perhaps.

When my sister died suddenly in a foreign country we used a service like this ( we also had to repatriate) and I know that my parents found it very calming not to have to deal with all of the admin at such a hard time. The supportive figure (like a doula) and having someone with a stable mind when most others around you are grieving is also great and I would definitely think about using one again in future. I think it's a good idea OP!

Jodi Picoult's latest book is about a death doula. It's a pretty bad book, but I think it would be a useful service.

My husband is currently end of life. He's chosen to stay in hospital as I am allowed to visit him there and the nursing care has been superb. No visitors until 'the last bit' at the hospice.

As it happens, I've already had the 'come now, we think it's happening' phone call - we're now seven days on from that and he has stabilised and are back to 'could be days, could be weeks'.

We do technically have a mcmillan nurse, but neither of us have seen hide nor hair of her since we were told that he was approaching end of life two weeks ago. I think she's pissed that he wouldn't go to the hospice. She hasn't been much use since his diagnosis tbh - although I am sure that there are excellent mcmillan nurses out there.

I can see how this service would be useful - we've both struggled with how to talk to wider friends and family, and in some ways, how to talk to each other about it. We're muddling through and think we've reached a good place but some guidance would have been so helpful. No one has mentioned anything about counselling, both pre and post bereavement for either of us. Due to my job I think I'm OK on the practical things after, but many won't be.

@ClashCityRocker

I'm sorry you're in this position too and haven't got as much support as would be ideal.

As it happens, I've already had the 'come now, we think it's happening' phone call - we're now seven days on from that and he has stabilised and are back to 'could be days, could be weeks'.

This bit is so hard. Initially the medical professional suspected my dad had cancer with 1 - 3 months. We're nearly a year on now and in the last 5 months I've lost count of the number of times he's deteriorated suddenly then bounced back.

Obviously we don't want to lose him, but he has no quality of life and there's and downs with no idea of how the future will pan out (carers say they can't believe he's this frail and still going, paramedics came out the other week and said they've seen people in his condition go on for months or years), is utterly exhausting.

I read a book recently where the main character was a death doula (The Book of Two Ways by Jodi Picoult). I’d never heard of one before but can see how it could be useful to have someone independent around for suppory

Thank you Minty, it is so so hard.

I can't imagine having this go on so long - and all the attendent emotions, the guilt (am I really wishing him dead?) etc. The rational part of me just wants him to slip away peacefully and end the suffering...but there's another part of me that checks the date every day and thinks 'he's made it to another day! '.

So sorry you're in this situation too.

OP there's definitely a need for your service, in our area there are 2 or 3 death doulas but I'm not sure how much work they get.
Unfortunately I haven't had a very good experience with them on a professional basis (funeral director) as they had given a family incorrect information about the legal procedures for dealing with the deceased and also hadn't explained the practical issues of keeping someone at home for a significant length of time after they had passed away.
I'm very much in favour if someone supporting families etc but not when they cause more distress in the long run

I don't understand the practicalities of this.

If it is only you, how can you offer a 24/7 service? If you can't offer that, what happens if you are needed when you are 'off duty'?

How can you also offer an immediate response in the case of an unexpected death if you are already committed to another family?

As other pp's have said, there is no set time with an end of life situation - what is initially thought to be days/weeks away can turn into months - are you intending to only commit to that client for an unspecified time? What if the situation goes on longer than expected and the client/family run out of money to continue paying you?

On paper, and as a single person with no children, I can see how this service could be useful, but I think it would need to be more than just you for it to be in any way practicable.