Now Ye're Talking - to a Palliative Care Nurse

I'm a Palliative Care Nurse, AMA

volchitsa wrote: »

That only surprises you because you clearly haven't had any direct experience of end of life care. (And long may that continue to be the case!)

The syringe driver is the system used to deliver a constant amount of drugs non stop to the patient, rather than having to do regular injections, though in fact they have to have "breakthrough" injections anyway, when the syringe driver isn't quite enough to keep the person pain-free - as others have mentioned, end of life care is a constantly evolving situation, and can be very difficult to manage smoothly.

It's "controversial" because it often contains morphine and/or other restricted drugs which are highly addictive (and thus have a high value to drug addicts and can be an issue for night-visits in some places presumably. I remember the MacMillan nurses never came alone at night, they always had a driver who sat outside in the car for whatever time they spent with us. Presumably because they could be a target otherwise.)

Even apart from thefts, it could be controversial in terms of who controls the amount of morphine the person gets. Too much morphine will shorten the person's life, for sure.

A friend of mine whose mum died a few years back was given complete access to the morphine pump (at the very end) and told to give whatever it took to keep her comfortable) We weren't - the nurses, palliative care during the day and MacMillan at night (strangely, the same people in some cases, just wearing a different "hat" ie funded from different budgets I guess) adjusted the dose every day or more often if needed.

But as I say we had someone available pretty much constantly when he needed top-up treatment, so perhaps that's why, or else just different places do it differently, I don't know.

I should get you to answer for me when I'm not around ah just joking, you are clearly very knowledgeable and it's great to see you speak so well about palliative care.

Thankfully I haven't met anyone who's been targeted for an attempted drug theft or met anyone who's house was broken into or family took their meds even though a lot of our patients are living in complex social circumstances with addiction in the household.

Edited to add: not all syringe drivers contain morphine (or the associated opiate), if a patient does not have pain or breathlessness and there is no indication for morphine, we won't use it. The pump may only contain anti sickness or anti anxiety medication.

volchitsa

Sorry, it did occur to me that I might be kind of hijacking your place on the thread!! I didn't mean to, but it's still quite recent and I'm finding this thread quite cathartic, just talking about it.

But I'll try to leave the points of information to the person actually running the thread!! Apols again (and thanks again too,, this has been the best thread so far, IMe - and I have very much enjoyed several of the previous ones. But this is such an emotive one, especially when the experience is still quite raw.)

And my "knowledge" is just from whatever the palliative care team explained to us at the time. But I probably did ask a lot of questions!

I'm a Palliative Care Nurse, AMA

LynnGrace wrote: »

Brilliant thread. Another here who just wants to say thank you.
Just wondering, in relation to people telling the patient the truth, or not - is the patient given the diagnosis, or is the family told, and it's up to them, what the patient is told?
Thanks.

You're welcome

The diagnosis comes from the treating team, ie the oncologist/neurologist/respiratory physician but they may or may not tell the patient their prognosis and so it might be up to us to deliver that news or perhaps they were given a prognosis but they didn't listen/hear/absorb it and we have to revisit what they've been told and help them to understand it.

I'm a Palliative Care Nurse, AMA

volchitsa wrote: »

Sorry, it did occur to me that I might be kind of hijacking your place on the thread!! I didn't mean to, but it's still quite recent and I'm finding this thread quite cathartic, just talking about it.

But I'll try to leave the points of information to the person actually running the thread!! Apols again (and thanks again too,, this has been the best thread so far, IMe - and I have very much enjoyed several of the previous ones. But this is such an emotive one, especially when the experience is still quite raw.)

And my "knowledge" is just from whatever the palliative care team explained to us at the time. But I probably did ask a lot of questions! :oops:

I didn't mean to make little of your experience, I'm so sorry if you thought I was honestly no need to apologise whatsoever and you are to be commended for asking questions and informing yourself about the whole process, that's a very scary thing for people to do and lots of people just can't bare to ask those questions.

monflat

What's your personal and professional opinion on the prescription of antibiotics when one is nearing end of life but because of varying opinions of professionals the doctor prescribes.

I'm a Palliative Care Nurse, AMA

Sinister Kid wrote: »

Great AMA

In your experience, are situations common where a patient who is in critical condition 'hangs on' until family members are there with them before passing?

I recently read an article about nurses in Sweden who cut their workday to 6hrs, do you feel a shorter work day would be of benefit to you and the patients you care for?

I'm sure you have procedures you have to follow, if you could change one thing about how your job is done or do something differently, what would it be?

After a really sh1tty day, what is you favorite thing to do to unwind?

Oh, & my uncle is a volunteer in the Hospice years, his name is Patsy, do you know him?

Hi have seen some people who appear to have "hung on" and others who didn't, I think it's difficult to know if they really did or if it was just good fortune that the person got back in time to see their loved one before they died.

While long nursing shifts are a killer, they are useful for continuity of care. 12 hours is too long, 6 is too short IMO. I think 8 hour shifts would be much better but then if it meant working five days a week instead of four I don't think I'd like it.

I have heaps of ideas for organisational changes in my department but I don't feel I have the managerial experience to make those suggestions known. I am involved in some practice change to address what I perceived to be gaps in our practice though which I think is really positive and my manager has been very supportive so far.

After a sh!te day I enjoy sitting out in the back garden for a little while, maybe with a cuppa (or a glass of wine if I'm being really good to myself) even if it's in the dark. I love the feeling of the air in my skin and filling my lungs, the sounds of the birds, dogs, trees, traffic, everything.

Maybe I do know him. Does your uncle walk the dog?! (We've a dog in our hospice!)

Shrap

volchitsa wrote: »

I'm finding this thread quite cathartic, just talking about it.

Same as that! Really useful thread boardsie-bosses, thanks

I'm a Palliative Care Nurse, AMA

monflat wrote: »

Have you experienced people who will refuse all types s of pain relief.

Is there really a death smell.
I don't think so but thats my opinion but people who I work with have the I" told you I smelt something "
When they later have found out that a person has passed away

Yes, in some cultures, people do not accept pain relief at the end of life as their suffering in this life will be rewarded in their next life. It's hard to watch but their belief has to be respected.

I don't think there's a death smell either to be honest, but maybe it's something that some people can smell while others can't.

I'm a Palliative Care Nurse, AMA

monflat wrote: »

What's your personal and professional opinion on the prescription of antibiotics when one is nearing end of life but because of varying opinions of professionals the doctor prescribes.

There can be a role for the use of antibiotics at the end of life if it is thought that they will provide comfort from distressing symptoms such as heavy sweats or chestiness. I don't object once the rationale for treatment is made clear to the patient/family (ie they understand it's not curative, it's purely to palliate a symptom) and it doesn't distress or upset the patient to take the antibiotic ie it doesn't cause nausea, trying to obtain IV access isn't too difficult/distressing.

Sinister Kid

I'm a Palliative Care Nurse, AMA wrote: »

Maybe I do know him. Does your uncle walk the dog?! (We've a dog in our hospice!)

I'll have to ask him

I'm a Palliative Care Nurse, AMA

monflat wrote: »

Ok great thanks for that.

I suppose any of the residents who were on morphine for possible 10 daysapprox before they die I was thinking about
and you see we had contacted palliative care regarding a syringe driver and they said they don't have one. Possibly being used on other persons at the time who needed it more.

That's why I was asking. Of course as you said training education is needed for everyone and also all the GPs we deal with too.

Sorry I almost missed this. I think that's absolutely and unbelievably shocking that a palliative team wouldn't intervene just because they didn't have a pump! I'm horrified. We've 12 pumps in our department for use between two teams, if they're ever all in use but another patient presents as needing one we'll beg borrow or steal to get one from somewhere (usually the ward might be able to spare one) that simply isn't good enough, I hope you complained.

tinyk68

Like others I just wanted to say thank you for the wonderful work that you and your colleagues do. I lost both of my parents to cancer. My father died first, followed eight months later by my mother. I think that some people are born to do this job as there was one nurse in particular that both of my parents really took to. They could talk to her and ask her questions in a way they didn't feel comfortable doing with the doctors. She was also a godsend to my brothers and I as we could consult with her about medication issues as they arose.
Now, many years later I have a cousin with terminal cancer who, coincidentally, is under the care of the same hospice nurse. Again, she has bonded with her more than with anyone else who provides care to her. It cannot be put into words how much that kind of care and attention means to the patient and their families during such a traumatic time. Thanks again.

monflat

I know the hospice runs nurses for night. Did you ever do this in the past? are these nurses supported by you and your team.
Do they require the nurses to be knowledgable and experienced in palliative care? Just curious.

When you qualifed as a nurse at that time where did you want to work? did you see \experience much end of life care in your training?

I'm a Palliative Care Nurse, AMA

monflat wrote: »

I know the hospice runs nurses for night. Did you ever do this in the past? are these nurses supported by you and your team.
Do they require the nurses to be knowledgable and experienced in palliative care? Just curious.

When you qualifed as a nurse at that time where did you want to work? did you see \experience much end of life care in your training?

I am not aware of any hospice in Ireland which provides a night nursing service. To the best of my knowledge, we all operate in the same way in that we request/book night nurses as required from the Irish Cancer Society.

I haven't done any night nursing in the home for the ICS. In theory it sounds like a handy nixer but in reality I'm too tired working full-time as it is and it probably wouldn't be worth it tax-wise.

We support the night nurses by providing all the medications, needles, syringes etc plus anything else we think they might need for the nights work. We leave a detailed prescription and communication sheet for them and on their first night we ring the nurse directly to hand the patient over to them. They usually ring or text us in the morning to let us know how the night went. My experience of these nurses is that they have huge knowledge and experience to draw on and I'm sure the ICS provides training.

I wanted to work in the Emergency Department at first, I think I've covered that a few answers back. I got next to no training or education around end of life care in my undergraduate time, which in hindsight is disgraceful. The only thing I can remember is when we were out on placement and one of my classmates flagged a that a patient had died on her ward and she didn't know what to do so when we were back in college a few weeks later, we had a "lecture" on death and dying for an hour, then another lecturer rocked up with some sheets, candles, holy water and a crucifix and proceeded to tell us how to lay someone out, agus sin é. For an entire four year honours degree all they could spare was 90 minutes :rolleyes:

Sinister Kid

What is the hardest decision you have had to make?

December2012

Thank you for doing a difficult job.

When my father was dying in hospital the most grief support we were offered was a few prayers from the chaplain.

I think grief counselling should be available free of charge for the dying and families of those who are dying if they want it.

Nobody followed up after. And family's are going through this every day. Not everybody has the tools to process and to deal. The public health system follows up on you when you have a baby, I think it would be great if they could also follow up with the bereaved family.

I just think of all the emotional and societal problems that could be minimised by some offered professional help.

What do you think about support structures currently in place for a family going through a drawn out yet imminent death?

monflat

Hi there apologies theICS night nurses!
Many thanks for your reply!

Yes it's a pity and a shame that's all you and your class received and then to be faced with something like end of life care which is so sensitive.
I wonder will that change? That student nurses get more education /experience on dealing with death /dying.

I'm a Palliative Care Nurse, AMA

Sinister Kid wrote: »

What is the hardest decision you have had to make?

I am lucky in that despite being out on my own in the community, I work very much as a team with my colleagues so it is never up to me alone to make a difficult decision.

That in itself can be surprisingly difficult though because you might arrive to a house where a person or their family have ween waiting anxiously on you, have lots of questions/problems and they expect you to have all the answers instantly. Sometimes I have to hold my hands up and say "I'm not sure what the best course of action might be". If it's an urgent situation I would step outside and ring my manager or the doctor or SOMEONE to talk about what I should do and take it from there. If it's a little less pressing, I will do my best to reassure the person that I will bring it to the team meeting for discussion the next day and ring them back after that with the outcome

I'm a Palliative Care Nurse, AMA

December2012 wrote: »

Thank you for doing a difficult job.

When my father was dying in hospital the most grief support we were offered was a few prayers from the chaplain.

I think grief counselling should be available free of charge for the dying and families of those who are dying if they want it.

Nobody followed up after. And family's are going through this every day. Not everybody has the tools to process and to deal. The public health system follows up on you when you have a baby, I think it would be great if they could also follow up with the bereaved family.

I just think of all the emotional and societal problems that could be minimised by some offered professional help.

What do you think about support structures currently in place for a family going through a drawn out yet imminent death?

I'm sorry to hear of your loss. I think it's tragic that there is no support or follow up in the general hospital setting. The phrase I highlighted in bold is excellent and I must follow that up, you've given me food for thought, so thank you!

I don't think it's a cruelty on the part of the hospital systems, I think it's just that the focus in hospital medicine is fixing, healing, improving as opposed to embracing death.

I'm a Palliative Care Nurse, AMA

monflat wrote: »

Hi there apologies theICS night nurses!
Many thanks for your reply!

Yes it's a pity and a shame that's all you and your class received and then to be faced with something like end of life care which is so sensitive.
I wonder will that change? That student nurses get more education /experience on dealing with death /dying.

I really hope so. I'd love to work as a clinical placement coordinator in a general hospital and support undergraduate nurses particularly around end of life care and symptom management.

volchitsa

I'm a Palliative Care Nurse, AMA wrote: »

That in itself can be surprisingly difficult though because you might arrive to a house where a person or their family have ween waiting anxiously on you, have lots of questions/problems and they expect you to have all the answers instantly.

^^ This. It just struck such a chord with me, having been on the other side of it, as "the family" doing the waiting! The amount of pressure you must be under sometimes is almost unimaginable, I really don't know how you do it. You all do such a fantastic job, it makes an indescribable difference to people's lives at a very emotional and possibly quite traumatic time in their lives.

I'm a Palliative Care Nurse, AMA

volchitsa wrote: »

^^ This. It just struck such a chord with me, having been on the other side of it, as "the family" doing the waiting! The amount of pressure you must be under sometimes is almost unimaginable, I really don't know how you do it. You all do such a fantastic job, it makes an indescribable difference to people's lives at a very emotional and possibly quite traumatic time in their lives.

Thanks again

Any more questions?

monflat

Is there any famiies/person who passed away that you remember more so than others?

If so for what reasons?


Is there any future plans to build any more hospice? In regions where there is no hospice care and people have to travel?

Lucyfur

Tell us about early palliative care. When are you assigned a palliative care nurse? Do you have to ''sign up for it'' or is it something that's automatically assigned when your illness reaches a certain stage?

And you've spoken briefly about non cancer patients. Is there another illness that's prominent in your work? Do you work with people with Cystic Fibrosis or Motor Neuron Disease?

Dubl07

I'm a Palliative Care Nurse, AMA wrote: »

Thanks again

Any more questions?

Other people have alluded to MacMillan nurses in the UK. Do you ever get a chance to do stints with them or other such organisations and vice versa? Do you think it might be helpful?

(Yet more thanks for your time!)

I'm a Palliative Care Nurse, AMA

monflat wrote: »

Is there any famiies/person who passed away that you remember more so than others?

If so for what reasons?


Is there any future plans to build any more hospice? In regions where there is no hospice care and people have to travel?

I remember a lot of patients, usually they stick in your mind if they were young or had an unusual illness or symptom or their circumstances were remarkable. I can't really go into specifics obviously.

There's apparently plans afoot to build one in Wicklow, Waterford are also looking into it I believe and I'm not sure about Cavan/Monaghan and Mayo/Roscommon. Some community hospitals have beds ring fenced for "Level 2" palliative care. (There are 3 levels as outlined here http://www.hse.ie/eng/about/Who/clinical/natclinprog/palliativecareprogramme/About_Palliative_Care/ )

I'm a Palliative Care Nurse, AMA

Lucyfur wrote: »

Tell us about early palliative care. When are you assigned a palliative care nurse? Do you have to ''sign up for it'' or is it something that's automatically assigned when your illness reaches a certain stage?

And you've spoken briefly about non cancer patients. Is there another illness that's prominent in your work? Do you work with people with Cystic Fibrosis or Motor Neuron Disease?

In an ideal world, people would be referred to palliative care at diagnosis! As I said, we do discharge people from the service if appropriate, but early would demystify what we do and allow people's suffering while going through treatment to be limited by allowing time to get to know the person, build trust and identify/anticipate symptoms. As it stands however we are often only invited when it is felt that no more can be done from a treatment point of view, but it is improving and many of our malignant patients are still undergoing active treatment.

We usually receive referrals from GPs or treating teams but now and again people self-refer. Not everyone that is referred to us is deemed appropriate however. Someone who has no specialist palliative needs and is not imminently dying won't be taken as we are often though of as a last gap solution, particularly around place of care.

We tend not to get referrals for CF patients too often, they might get seen by paediatric palliative care in their hospital but to date I haven't looked after any adults with it since starting working here.

We do look after a lot of people with MND, I suppose returning to the answer above, one man stands out for me as I developed a good rapport with him and his wife and really enjoyed visiting them, even though he could be a bit tricky. I seem to find myself sometimes drawn to looking after cantankerous men, I don't know why! I think maybe it's kinda satisfying or something if you "crack" the nut and make headway with them.

Getting back on track, we look after a lot of other people with non-malignant diseases, particularly COPD, heart failure and dementia. It can be a lot more difficult for us to prognosticate when looking after these people as their disease trajectory is filled with peaks and troughs with lots of "close calls" and "this is it" moments, followed by miraculous resurrections whereas people with cancer tend to usually follow a more consistently downward decline towards the end, making it somewhat easier to identify when someone is starting to die. In either case, the earlier we are involved and the better we get to know the person, the better the outcomes are for people.

I'm a Palliative Care Nurse, AMA

Dubl07 wrote: »

Other people have alluded to MacMillan nurses in the UK. Do you ever get a chance to do stints with them or other such organisations and vice versa? Do you think it might be helpful?

(Yet more thanks for your time!)

You're welcome

One of my colleagues did some of her placement for her grad dip in the UK, it's something I wish I'd thought of doing! I am giving some thought to going over to St. Christopher's Hospice in London next year to one of the courses they offer and I'll see if I can do some supernumerary work with them to expand my horizons

monflat

Thanks for your informative answers.
Apart from cancer diagnosis is Copd dementia and heart failure the 3 main groups of conditions that utilitise palliative services?
Or which is the most common condition you see now?

Also just curious have you experienced any older nurses /health professionals that treated you differently because your a lot younger than them and of courses have such great expertise and knowledge?

Dav

I'm going to wrap this up here and say a big thank you to you all for taking part and to our nurse for her time and care in answering the questions.