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?

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

Also, I think you'd really need to clarify exactly what sort of support you can offer and I can only think of a few things of the top of my head and I'm sure I'm not the only one.

Which isn't to say you wouldn't be able to do more or provide a valuable service, but people won't hire of they don't realise what you can help with.

as I can only think sorry

But how do you differ from McMillan or Marie Curie?

It would have been so useful to have someone who knew what to do next as well. Funerals and how to navigate finances/probate if someone dies intestate. It was all so daunting.

@SnackSizeRaisin

I can see the benefit as there are some similarities with childbirth... there can be different options, it can be confusing or distressing for people with no medical training to understand or advocate for themselves or their relatives, some people have no family support, it's an emotional time and people may struggle to communicate, staff are often too busy to explain things or you just deal with so many different staff. I would see the role as someone who knows the practicalities of how things work, can explain some of the medical terminology, is a familiar person who can provide some emotional support. They would not necessarily have to be there at the time of death - if the dying person was alone they might be though.

Thank you. You have hit the nail on the head. I want to offer services to those that know they will journey alone plus family needing support.

I’ve an extensive background professional and I’ve got an interest in the last days.

Thank you all

If you are given a prognosis of 6 months or less then you are also offered a referral to your local hospice.

There are no guarantees they will accept that referral.

My dad is about 6.5 stone, doubly incontinent, visually impaired, on oral morphine for pain, can't eat or drink unaided and suffers frequent (in the last few weeks almost constant) bouts of delerium, confusion and agitation.

He is in the late stages of severe frailty but we can't even get the end of life team out to give him injectable pain relief and the hospice has turned him down as 'not being sufficiently in need of specialist palliative care'.

think it’s a great idea. Your issue is going to be getting your services known.

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?

For example. Macmillan don’t do end of life nursing care. They aren’t there to sit with the person, administer pain relief and help them let go. Marie Curie do but they are so overstretched they often have to choose which dying patient they stay with.

It would help those who want to die at home in particular. It would help families who don’t have the confidence or knowledge to ease a passing- lots of times a death at home is planned but families call ambulances at the end because they are scared and need help.

It would help carers who haven’t had a break in weeks or years get a good nights sleep or a hot shower.

There is definitely a place for these services.

End of life personal care or end of life nurse. Not doula

Dp's mum died recently, and everyone involved (dp, his brother, and mil's partner) struggled with all the organising things that needed done. Funerals, death certificate, post mortem, and what was normal for all the above were difficult and there really was the feeling of floundering due to no experience in the process.

So can see how a service for how to sensitively deal with the more businesslike side of things would be massively useful. However the cost could make it difficult to even consider this, in our situation theres really wouldnt have been the money for this sort of service, but i suppose for many others this wouls not be an issue

I think it sounds like a useful service and potentially of huge support to a lot of people. One question I have is are you regulated and who by please?

I think it is a wonderful idea. I did a diploma in this also, but realised that I'm not the right type of person to do this. But you sound perfect!

Some of the information on here doesn't match my experience. Macmillan or Marie Curie can be great, but it can take a while to get appointments for financial and other information, also if you rely on them for care, what they can offer is limited by who else needs them that week, so you might end up with one six hour time slot. Marie Curie nurses come and sit with the terminally ill person and are very nice, but not really experienced counselling types, my experience anyway.

Similarly, hospices are amazing places, but the one I have spent the most time in was busy with nurses going about their business and although they are very kind and check you are ok, they are not in the business of counselling you. The hospice phoned me every few weeks afterwards, the lady was very nice, but she was a volunteer.

Really high quality death support and counselling is not something you just get in the system at all, not in my experience anyway. People are lovely, kind, sympathetic, the odd counseling appointment may be available, but they are very busy, I think having a more sustained interaction and support, and joined up guidance could be very helpful from someone who has been there and knows the systems. Also, the dying person themselves might like to have another familiar face around, hospice nurses and carers work on shifts and don't sit (in the hospice I know) for long periods if ever just chatting with the person. The chaplain calls, does a prayer, moves on.

I think it's a great idea OP, I am not entirely sure what your duties would be, and it could be a bit fraught between the family and medical staff if it weren't a straightforward case, but otherwise, I do see a role for much more family and support of the person.

@Sobloodyexhausted

I’d have loved to have the support of someone like this when my dad was dying. The hospital staff were very good but there were times when they were very busy and it would have been good to have a calm presence available to help care for dad in his last days. A few weeks before my dad passed he had an episode where he didn’t know where he was or that he was dying. I had to explain it all to him and it was a horrible shock to him. At one point that afternoon I had to leave him as I was so upset I was making things worse. I’d have really appreciated help dealing with that better - the memory haunts me silk.

This is my reasoning exactly. Can I offer my condolences even though they are worthless, you have described my services to the tee . I just want to be able to offer that 2nd or 3rd layer of support, at any level with no judgment at all to anyone

I could see this as a really positive thing, someone experienced to take your hand through it at a difficult time.
I do think the name needs a tweak though.

I think it’s an excellent idea, I watch ‘Ask a Mortician’ and she runs a funeral home that encourages family connection with death, caring for the remains and tries to make it less scary/mysterious (?)

I think a calm presence to explain what is happening at all stages would be a huge help.

@Proudboomer

End of life counsellor End of life therapist

These services are offered for free by a hospice.
If you are given a prognosis of 6 months or less then you are also offered a referral to your local hospice. Contrary to popular belief you don’t just go to a hospice to die. They offer support for the whole family even continuing after the death of loved one and even if they didn’t die at the hospice.
Hospices are not funded by the nhs and so I would rather anyone who needed this support used their local hospice and if they had the funds then gave a donation so that the hospice can support people who are not in a position to pay.

I agree.

I’m so pleased we have an NHS service to support families in end of life care.

I do just wonder if their is space for support, paid for and exclusive and bespoke.

Helping those that don’t have help when they pass?

@Nanny0gg

But how do you differ from McMillan or Marie Curie?

Those organisations only work with cancer patients, for one thing.

Definitely.

Agree with PP you will need to be a bit more specific about what you are offering. Counselling? Emotional support - primarily for the person dying or their family? Practical support - what can and can’t you do? Time limit etc.

The word companion comes to my mind.

Hospices don't have spare staff, from what I can see, to sit with families or dying people for hours on end, and neither are counsellors available like that. Hospices are amazing places, but they are nursing wards primarily, and the nurses are busy. In hospital, where many people die, that is even more so.

@monkeysox

End of life personal care or end of life nurse. Not doula

I don't know... end of life nurse sounds more like someone who provides medical care for the dying person, whereas I think the OP is talking more about emotional support and looking after the wishes of the person and their family.

Like how a midwife deals with the medical side of birth, but a doula is more for emotional support and as an advocate.

I think it would be great. I don’t have a partner and know that when the time comes I would value a service like yours to work with me and my kids whatever ages they are.

@TurkeyTrot

Oh, I initially thought you meant a birth doula for families who expect the birth of their child to be incompatible with life, or where it is known to be a stillbirth. That would be really, really useful. I'm sure all end of life care would also be useful.

This is a service I offer, but it is incredibly difficult to reach families at the appropriate time.

I’m a nurse and I provide a lot of EOL care. I have also been a midwife, and have recently been talking to colleagues about how the similarities in the two situations run a very close, parallel line.

My experiences of birthing doulas while working as a midwife have not been positive ones. Those experiences have made me cautious of the service.

Having said that, dying can be a very long drawn out process (much like labour!) and providing continuity of care, I believe, is important. A doula can achieve this in a positive way, and I can see how it would be beneficial during EOL care. But... care must be taken to understand what is being provided from HCPs and not to build up hope or expectation. Also, if there’s just one of you can you guarantee to be available - would you be offering, say, a live in service during extended periods of time? How would this work in a care home setting? Or a hospice where EOL care planning is well established?

A PP has raised a valid point about who you would be working for, and issues around consent.

I think you’d also need your own professional support system in place. Dying can get messy in terms of family politics combined with grief which could potentially be difficult to handle alone.

It’s an interesting idea and I’d genuinely like to know if you go ahead with it and what the response would be.

@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

Bless you and I have been that daughter. We could offer practical advice and look at paperwork in advice, I’d be there for you and your mum and your dad.

Death specialist? Can’t think of a name but I know I’d be a great support unit for families.