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?

Have you read the Kathryn Mannix book?

@MintyCedric

I know little about it, but theoretically I think it's a wonderful idea.

My dad is 82 and was declared 'end of life' 9 months ago. He's still hanging in there, although much deteriorated and because he doesn't have a confirmed diagnosis and our GP is useless we can't get any meaningful support from any of the usual channels. Marie Curie and Macmillan won't get involved without a cancer diagnosis and the local hospice has turned down 2 referrals to date.

I can imagine my mum would be reluctant, but if it was down to me I'd be on board with hiring a death doula in a heart beat

Big breaths to you and your support for your family, it’s so hard and must really take it’s toll.

I do understand to an extent where your mum is coming from although it doesn’t help you at all.

I don’t want to sound crass- do you have a death plan for your dad?

Excellent idea. It never occurred to me this existed but I can definitely see the value of a sensitive, capable support to walk through someone's final days or weeks.

I was with my Mum when she died , and I'm glad only family members were in the room at the actual time . Tbh , I would find it intrusive . What you you be doing that a family member cannot ?
I can perhaps see some need if the person has no family and wanted someone to sit with them whilst they are dying in hospital, but you cannot be there 24/7 for however many days plus hospital staff could ask that you leave.

@parietal

Presumably this only applies to predictable deaths (eg cancer) in which case there are Macmillan nurses and hospices and existing support networks (however imperfect). How would this differ from those?

No, if I advertise myself locally for an immediate response- even if it’s an immediate death within our community. Just to be there when family and friends couldn’t.

Yes! A really well needed position.

Death is fucking messy. Just like birth.

And I am REALLY irrationally cross at posters who think hospices do this and should be left to do it.

Yes, they do.
If you are actually in a hospice when you die.

If you are waiting for re admission when you have been in and out because you want some control, suddenly decline and end up in the hospital, you think the lovely hospice worker is still there for you? No, because they are dealing with the full beds in the hospice. You die where you don't want to be, in a noisy brightly lit emergency room 😔 with family who are thrown into the deep end and suddenly getting not so subtle comments from nurses such as "you tell me if your mother needs more morphine."

Death doulas are needed. Every day.

@parietal

Presumably this only applies to predictable deaths (eg cancer) in which case there are Macmillan nurses and hospices and existing support networks (however imperfect). How would this differ from those?

No, maybe a register of interest and I’ll do the rest

Currently you have to take what you are given, in terms of support available. I should imagine having someone more consistently available would be great if it's affordable.
How many "clients" would you have at once?

I’m reading a book called the The book of two ways - by Jodi Piccoult where the subject is a death doula. For me if I was single I might like to experience it. But it’s hard - I don’t want to die alone but understand I might die at at moment and die alone. But I mean if I had a terminal illness.

My friend was told her father would die within days and she flew to Spain (2 years ago) to spent the final couple of days with him. But then it became weeks, then months and then it was 6 months of him wasting until he was 5 stone - she was beyond traumatised and I think a support system of a death doula might have been useful. Death didn’t use to worry me - it doesn’t now as I get older. I don’t think we talk about dying enough. Or the process of it.

End of life support worker?

Hospices already provide trained qualified nurses as part of a "Hospice at Home" service. These incredible nurses helped me and wife when she passed away at home recently.

I agree that doula isn't the right terminology....End of life companion, maybe?

I think there could be demand for something like this yes, in certain circumstances people can access similar services for free but they would be most likely reliant on charity and over subscribed. For families who can afford to pay I think it could be an attractive alternative

Running a business myself though my first thought is how would you effectively be able market yourself to families at such a difficult time. Ideally you might be recommended by hospices etc who can’t help everyone they might like to but it might be seen as ethically wrong for them to recommend a paid for service, not sure. It’s totally different to being pregnant for example where mums are on the internet constantly looking for new ideas and things to buy. Selling yourself to that market would be so much easier.

I've met someone who did this. She had another business as well so I'm not sure how regularly. She did call herself a doula.

Marie Curie help people with a terminal illness, not just those with cancer.

I knew someone who went abroad to do this, ages ago.
But it was as part of a package, she worked with others, including a funeral director and possibly a celebrant. They offered on going support and counselling to the bereaved family. At least one of them was an ex midwife, there are definitely some overlaps and traditionally midwives would lay people out.

My question which might seem crass is how do you make a living doing this? How many clients can you have at any one time and how much would you have to charge them? If you work alone, you will have to be on call 24/7 and that's not sustainable.

Nobody should be treated like a piece of furniture at the end of their lives. Receiving care and compassion as you die shouldn't be some exception for the lucky or wealthy.

When did we lose our humanity

I think an after support service would be useful. Once the funeral is over and everyone has gone back to their everyday lives the grieving family (widow for example) can find things difficult. Having someone to be able to talk through everything would be useful, especially if that person had been involved before. A bit like with birth debriefs.

@Howmanysyllabasisthat

I’m reading a book called the The book of two ways - by Jodi Piccoult where the subject is a death doula. For me if I was single I might like to experience it. But it’s hard - I don’t want to die alone but understand I might die at at moment and die alone. But I mean if I had a terminal illness.

My friend was told her father would die within days and she flew to Spain (2 years ago) to spent the final couple of days with him. But then it became weeks, then months and then it was 6 months of him wasting until he was 5 stone - she was beyond traumatised and I think a support system of a death doula might have been useful. Death didn’t use to worry me - it doesn’t now as I get older. I don’t think we talk about dying enough. Or the process of it.

@Howmanysyllabasisthat this is why I think this could be really useful. FIL died in December and was on end of life care for weeks after the doctors only expected him to last a few days. It was utterly traumatising for DH because he basically felt that he was watching his father starve to death while still sometimes conscious. He kept asking if this was the wrong thing to be doing and having someone there to explain why certain decisions were being made might have helped with that. He often felt like I am watching my dad die, what if he wasn’t dying but now he is because he’s had so much morphine and he’s not being fed? He also had no idea whether he should view his dad’s body before the funeral but he now wishes he hadn’t. So someone who could talk to him about what the experience might be like could have been a big help.

What about end of life companion as a name.
Sorry if its already been suggested.
My cousin could have used a service like this when her mum was dying as she was alone in a different country with her.

@WellThisIsShit

I’d use that service. I have stage 4 cancer. Single mum, no support system.

Same 🙄

I actually think this could be very helpful when it comes to supporting the patient’s wishes when family members are struggling to cope with impending death and starting to become irrational. I’m a nurse with a lot of EOL experience and I regularly see relatives who get very panicked as their loved one declines and start focusing on unhelpful things. One particular example sticks in my mind of a sister who cornered the dietician demanding dietary supplements for her malnourished brother who was riddled with cancer - he died eight hours later and it was definitely not sudden or unexpected. How much better would it have been for everyone if a party independent of the hospital staff had sat down with her and gently redirected her to talking and spending time with her brother in his last hours?

In saying that there is a huge amount of denial and fear of death in our society so I don’t know how successful you would be in finding clients. I would be sceptical about someone without a strong nursing or medical background in EOL care doing this role though just because have a few friends who are midwives who have had problems with doulas acting outside their scope of practice during emergency situations.

I think it's a much needed service.

There's so much to organise pre-post death.

Having someone with knowledge whose empathetic but emotionally detached from the loss I can see being a huge help.

I think it would be especially important for people lacking age appropriate family support - single parents or wives/husbands with no/unsupportive siblings and elderly parents.

If I want in the position of having a terminal diagnosis I'd definitely be looking at something like this. A way of making wishes known without further worry of "burdening" family, someone you didn't have to act "bravely" in front of and who would answer tough questions with honesty etc.

I've also no issue with the term death doula or end of life doula.

Just read a novel about one of these (American.) I think it sounds a good service but you'd be working in a niche environment where you'd have to spend a lot of time explaining what you do and why you're worth it. I also think you'd be dependent on wealthy families as depending on the illness it could go on a long while, so the bill would be unknown (unless you've already worked this through?) and also that you would need to have a really good way of switching off. Birth doulas mostly have happy mum, happy baby at the end of their job (not always, I know) but you would have had to be very, very careful not to get attached personally and would still be surrounded by grieving family, both in anticipation and after the death. It would be so easy for them to become overly dependent/attached to you, and vice versa. I don't know how as one person you could deal with that. Fortunately I haven't had to come into contact with Macmillan nurses, who I imagine are the closest to this, but I would think it's probably a team of nurses rather than the same one all the time? If not, it must be brutal on mental health.

It's not something I could do, that's for sure.

We have a DNAR in place and end of life meds stashed under the stairs for when the time comes (assuming we can get an answer beyond 'you can give him more oramorph' ).

And mum is very practical. There's a little debate between us regarding funeral arrangements but that will largely hinge on timing and the Covid situation. We know he wants to be cremated, mum favours a direct cremation, given that he's not religious and the people likely to attend are limited. I'd prefer he had a proper send off but am willing to go along with that if he goes before lockdown is fully lifted.

It's the emotional side of it we're particularly struggling with. Mum isn't really coping on any level and trying to support her leaves me with very little bandwidth to deal with my own feelings.

Also feeling like we don't know what we're doing when he's in pain/delirious/agitated.

I've taken an unpaid sabbatical from work until September but without a prognosis it's really tough.