Now Ye're Talking - to a Palliative Care Nurse

eviltwin

Not a question but just wanted to say thanks. My dad died of cancer in a hospice. He was there for six days before he passed and we pretty much lived there. The care the staff gave not just my dad but us was incredible, in our lowest moments they minded us despite having patients to care for. I've never forgotten those nurses and what they did for us and my dad so thank you for all you do.

gordongekko

Ever come across family conflict and how do ye manage to deal with it within the care home/ hospice environment?

1hnr79jr65

Firstly, just want to say how much i admire you and the other folks who do palliative care. I imagine it is the wildest emotional roller coaster a person could embark on, definitely not a role I could do so fair play to you.

Do you find in a persons last month's/week's many would make bucket lists?

If so would it be normal for you or your colleagues to assist in drafting the bucket list or even carrying out some of the requests there?

What sort of psychological support would you get based on the role if any?

Can you tell us the best thing you have personally experienced in your role, also the worst thing and how in comparing the 2 would you would gain a better understanding of delivering a "better" experience for the next patient?

another36

Hi

First of all I want to say the hospice setting is the nicest place you never want to have to go back to.

I have had 3 family members die in a hospice and they died in dignity and without pain. I only have good things to say about hospice care. It's a fanastic service that seems to be of a high standard all over the country.

My dad on the other hand died from a brain tumour and wanted to die at home.

This was a very very tough situation. And much more stressful. When situations would change rapid it was then u felt the pressure of not having a nurse down the hall. We used to have to keep notes so we could present a picture of the changes. As it was hard to remember due to being on a roller coaster.

We went through some very tough nights before we were offered Dafodil nursing care.

Once they came on board it was a dramatic improvement to how we managed.
They were amazing they supported us so much. The care in the last few days was personal and professional. I'll forever hold these ladies in my heart.

You only get 10 nights and ironically dad passed away on the 10th night.
This needs to be reviewed. Families need to feel that if the patient is acute for longer the support will still be in place. I'm sure the cost less than a hospice bed. Or maybe it's more expensive?

We actually started to get stressed about how we would manage. There was 2 of us caring for him and it was full on between the emotional stress and the physical nursing that we had never done.

Dad got his dying wish to be at home and in hindsight I'm glad we gave him this.

But the other times we had family members pass away and an inpatient in a hospice the stress on us the family was less so please know your all doing amazing work and so many families think of hospices as the nicest places that the never want to see again x

volchitsa

another36 wrote: »

Hi

First of all I want to say the hospice setting is the nicest place you never want to have to go back to.

I have had 3 family members die in a hospice and they died in dignity and without pain. I only have good things to say about hospice care. It's a fanastic service that seems to be of a high standard all over the country.

My dad on the other hand died from a brain tumour and wanted to die at home.

This was a very very tough situation. And much more stressful. When situations would change rapid it was then u felt the pressure of not having a nurse down the hall. We used to have to keep notes so we could present a picture of the changes. As it was hard to remember due to being on a roller coaster.

We went through some very tough nights before we were offered Dafodil nursing care.

Once they came on board it was a dramatic improvement to how we managed.
They were amazing they supported us so much. The care in the last few days was personal and professional. I'll forever hold these ladies in my heart.

You only get 10 nights and ironically dad passed away on the 10th night.
This needs to be reviewed. Families need to feel that if the patient is acute for longer the support will still be in place. I'm sure the cost less than a hospice bed. Or maybe it's more expensive?

We actually started to get stressed about how we would manage. There was 2 of us caring for him and it was full on between the emotional stress and the physical nursing that we had never done.

Dad got his dying wish to be at home and in hindsight I'm glad we gave him this.

This more or less exactly mirrors our experience : home care is terrifying when you have a really, really ill person and a rapidly degenerating situation, which is why we were so grateful to the palliative team and the MacMillan nurses.

The daffodil association you mention seems to be what I was asking about. I know the MacMillan nurses are not available indefinitely either, it's only for the last days. In our case we weren't told a number of days (but then he'd been in hospital - again - near the end and literally came home to die, which happened 4 days later. So we all knew there was no question of him even reaching 10 days.) It's quite likely there's a similar limit here too.

I'm a Palliative Care Nurse, AMA

eviltwin wrote: »

Not a question but just wanted to say thanks. My dad died of cancer in a hospice. He was there for six days before he passed and we pretty much lived there. The care the staff gave not just my dad but us was incredible, in our lowest moments they minded us despite having patients to care for. I've never forgotten those nurses and what they did for us and my dad so thank you for all you do.

You're welcome

itac

Just another thank you. My Aunt was one of the first Daffodil nurses but she passed away from cancer in the arms of her hubby and big sisters at home last year-several of her colleagues were present as she passed, as it was around their changover time.
Those few days at the house and the support and love from all connected with the hospice where she worked was incredible, and I now understand why people talk about the beauty of death because watching her pass was one of the most heartbreakingly horrifcally beautiful moments of my life. I can't imagine it was any easier for her colleagues (well, her friends really-colleague is too formal a way to describe them!) either.
Thank you for what you and all your friends do,xx

heyday30

Have you been in a position offering end of life care to children?

mattP

Are you for or against assisted suicide / voluntary euthanasia?

I'm a Palliative Care Nurse, AMA

gordongekko wrote: »

Ever come across family conflict and how do ye manage to deal with it within the care home/ hospice environment?

All the time. In the inpatient setting you have a certain degree of "control", people are on your turf and if they start fighting amongst themselves and upsetting the patient you can step in and ask them to leave, or if necessary call security/the guards.

In the community it can be an awful lot harder as you are a guest in the home and as such cant throw your weight around (for want of a better phrase). Also you're only seeing a small snapshot in time in the home as opposed to a period of hours/days/weeks in the inpatient unit so it can be difficult to know if it's an ongoing problem or just a tense moment at a difficult time.

In either situation though, you have to remember that this conflict has probably gone on for a long time and we're probably not going to fix it with the click of our fingers. We have to keep the patient in mind in all of this and try to protect them from unnecessary upset but it's always very delicate. Sometimes the temptation is to wade in and try and fix it all but we have to recognise our limitations and know that we could actually make things worse by allowing ourselves to get too involved. We might offer the services of our medical social worker to support the patient and/or other individuals.

I'm a Palliative Care Nurse, AMA

Sour Lemonz wrote: »

Firstly, just want to say how much i admire you and the other folks who do palliative care. I imagine it is the wildest emotional roller coaster a person could embark on, definitely not a role I could do so fair play to you.

Do you find in a persons last month's/week's many would make bucket lists?

If so would it be normal for you or your colleagues to assist in drafting the bucket list or even carrying out some of the requests there?

What sort of psychological support would you get based on the role if any?

Can you tell us the best thing you have personally experienced in your role, also the worst thing and how in comparing the 2 would you would gain a better understanding of delivering a "better" experience for the next patient?

Thank you

I haven't met that many people who have made formal bucket lists as such but some patients will tell you about having decided to do something they've always wanted to do such as travel. Having aggressive treatment can be very time consuming though and could impact on a persons ability to achieve what they want to do.

I haven't been involved in achieving a bucket list item per se but as I mentioned previously my colleagues I've helped organise weddings and other celebrations at relatively short notice.

Again, as mentioned before we have an employee assistance scheme which includes counselling. We have monthly clinical supervision where we can talk about any problems we're encountering in our work and there are regular sessions on mindfulness and "care for the carer" sessions too.

The best is seeing the grace that some people display in the face of adversity or seeing someone's suffering being eased, the worst is seeing patients who don't have what we might believe to be a "good" death and that always reminds me of what I'm doing and why so that I don't become complacent or burnt out.

GalwayGrrrrrl

Hello, thank you for taking the time to write these answers. Do a lot of families tell lies to the dying patient to make them feel better? When my father was moving from hospital to hospice care we had to tell him it was a "half way house" even though we knew he would not be coming home.

I'm a Palliative Care Nurse, AMA

heyday30 wrote: »

Have you been in a position offering end of life care to children?

There are no children's beds in the inpatient unit but since moving to the community I've been involved in caring for a few children and that is hard both emotionally (for obvious reasons) and professionally as I feel I am lacking in knowledge and experience but am currently doing a short course on caring for the child with a life-limiting illness.

monflat

This thread is brilliant. Such great stories.

Where did you do your Palliative care post grad?
Was there many days clinical practice?

Was it difficult.
I'm thinking will i be able for it I have 3 young children and work 2 days.
What was the most challenging part of it?

I'm a Palliative Care Nurse, AMA

mattP wrote: »

Are you for or against assisted suicide / voluntary euthanasia?

Hi, I've answered this already

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

Ooh excellent question, first I must go off on a little tangent: Palliative care was historically presumed to be a byword for End of Life care/terminal care or the sole preserve of cancer patients. It's not. It is available to any patient who has a life-limiting illness, either malignant or non-malignant. End of life care is just one part of what we do: we provide symptom management, rehabilitation and respite services as well and the sole aim is to make the patient's remaining time on this earth as good as it can possibly be, under the circumstances. I am a huge advocate for early palliative care involvement, the earlier the better in fact, as it allows us to get to know the patient and their family, get a sense of who they are as a person, what is important to them, what symptoms they have/might have and to build trust so that when the time finally does come for the person to enter the true terminal phase of their illness it is easily identified and the appropriate response is taken. Too often, people are afraid of the palliative care team, they think it means that they must be imminently dying when in fact we have patients on our books for years and years sometimes!

SO! Bearing all of that in mind, I believe that if good, early palliative care was in place for patients, their suffering could be minimized greatly and I would hope that consequently a person wouldn't feel the need to end their own life. HOWEVER... I also know that it's a very paternal and simplistic attitude to have, and I do recognise that I really have no right whatsoever to preach to someone about such an enormously personal decision. I would be very wary of some of the ethical and legal grey areas that there may be surrounding consent etc. TL;DR I'm not for it but I can see why some people are. As far as I'm aware, that would be then consensus amongst palliative care practitioners.

heyday30

Thanks for answering. it must be both a tough job and a privilege to care for people in their last hour of need.

Thanks for what you do x

I'm a Palliative Care Nurse, AMA

xfactorfan23 wrote: »

Hello, thank you for taking the time to write these answers. Do a lot of families tell lies to the dying patient to make them feel better? When my father was moving from hospital to hospice care we had to tell him it was a "half way house" even though we knew he would not be coming home.

Yes we encounter familial collusion on a fairly regular basis. That can be very difficult for us considering how much we value open and honest communication. I will always tell families that I won't go directly against them and brutally shatter the patients illusions but if the patient asks me a direct question I will not lie to them, I will answer it honestly but sensitively. It's my opinion that lying to people is almost always more harmful than telling them the truth, it's depriving the person of the chance to explore the emotions they may be feeling, their fear and distress is often heightened because the can see and feel themselves getting sicker and sicker despite being told they're okay. They may know they're dying and want to talk about it but aren't allowed. That said, I can totally understand families rationale for wanting to protect their loved one and while it's not my place to pass judgement, I have to keep the patients best interest to the fore.

Gloomtastic!

What's the most common type of cheese you come across in people's fridges? :rolleyes:

I'm a Palliative Care Nurse, AMA

monflat wrote: »

This thread is brilliant. Such great stories.

Where did you do your Palliative care post grad?
Was there many days clinical practice?

Was it difficult.
I'm thinking will i be able for it I have 3 young children and work 2 days.
What was the most challenging part of it?

I did my post grad in UCD. Because I'm working in the specialist palliative setting I had to do three weeks of placement so I did a week in another hospice, a week with their community team and a week with the palliative team in an acute hospital in Dublin. If you're not working in the specialty I think you've to do 5 weeks.

The course was intense both academically and emotionally, there was a lot of introspection and I was working full time so it really took over my life for that academic year. We were in college every Monday and some Tuesdays. I got 5 study days which I took to do assignments, I did my placements on my annual leave and did a lot of weekends and nights to try to get some time off.

I'm a Palliative Care Nurse, AMA

Gloomtastic! wrote: »

What's the most common type of cheese you come across in people's fridges? :rolleyes:

I don't go near the fridge, I don't even drink tea in people's houses when offered. If I did, I'd be constantly needing to pee and there are no public conveniences in my area. McDonalds is my go-to if I'm caught short

I'm a Palliative Care Nurse, AMA

Morning all! Looking forward to answering any more questions you might have. I am surprised I haven't gotten any about the use of morphine/sedation/syringe drivers yet! Also we're focussing very much on the terminal phase of people's illness but if anyone would like to know about early palliative care id love to talk about that.

Please keep the questions coming. I'm at the course again and going out this evening but will do my best to reply as promptly as possible

Dubl07

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

Morning all! Looking forward to answering any more questions you might have. I am surprised I haven't gotten any about the use of morphine/sedation/syringe drivers yet! Also we're focussing very much on the terminal phase of people's illness but if anyone would like to know about early palliative care id love to talk about that.

Please keep the questions coming. I'm at the course again and going out this evening but will do my best to reply as promptly as possible

When one relative was dying in hospital the doctors did the awkward nod while explaining that morphine would suppress breathing. We approved as much morphine as necessary to ease pain and suffering. Another relative in an elder-care home died in extreme pain as the gp took many, many hours to attend and approve opiates. Should nurses have the right to prescribe in such a situation and what other thoughts do you have around the issue?

Exclamation Marc

This is a great AMA.

I'm currently receiving chemotherapy for a Lymphoma and hopefully (scan-pending in 4 weeks) I've finished my last cycle this week and am in remission.

Thankfully there appears to be that road of remission for me but obviously when I receive my chemo I'm among others who range from terminal to the other end of the scale.

One thing I've noticed is that every nurse has an impeccable positivity and drive in how they deal with patients, always smiling when they can and when appropriate, always doing their all, and always having seemingly boundless energy and compassion. What is most impressive is that I've never seen any different, it seems to be a constant.

My question is how do nurses like yourself keep that enthusiasm, energy and drive going?

I work in compliance (which is x100s time less stressful and nowhere near as demanding compared to what I see in hospital) and I get days where I'm sure I come across as f*** this or I become demotivated, yet I've never seen one nurse less than 100% on top form. How do you do it each morning? Or how do you keep yourself so focused and so on game, it is truly remarkable.

I always appreciated the work nurses do but having seen it up so close now, you guys are just incredible.

monflat

I suppose in my suitation I've come across a number of families who's loved one has dementia. However one particular person had stopped eating and drinking.89yrs old Weighed 4 stone Despite this her family were not happy with the possibility that she wasn't gettin every last chance in the nursing home. So they requested her transfer to hospital.
They felt that their loved one deserved a better chance which they thought they would receive in hospital.
Of course she was reviewed by palliative team and died in a ward with a curtain around her as opposed to her own room where she had in nursing home.
I've come across this quite a few times where like 90 yr old grandparents are for transfer as their families have insisted they receive better care one woman died on route and was resussated. Only to endure the joys of a day on a trolly in a +e getting all the "routine " tests taken.

Do you think that famiies don't believe that nursing homes have access to palliative services don't understand the whole suitation or what is your opinions on this.

Also how much would a syringe driver cost?
Where I work refuse to get one (cost related of course) or any infusion kit which will help with administration of sub cuts in the last days of life. So if they are prescribed 3 different sub cut injections4/ 6/8 hourly we are constantly prodding them
I think this is highly unfair and an utter disgrace.
However is this something you see a lot with private nursing homes?

Shrap

I've been putting off reading this thread for a few days! My aunt died in mid July in Marymount Hospice, and it's still a pretty raw feeling of loss tbh. Maybe more so as that gap widens and I find situations like this, or talking to others who have or are dealing with loss, and you get suddenly landed again, realising just how far from processing the grief you really are....

So many others here have thanked you for doing the job you do, and I won't put it any better myself - someone said how they'd forever hold the palliative care nurses in their hearts, and that pretty much sums it up for me. In fact, that's the basis of my question.

My aunt was only there for a week before she died, with huge grace and dignity, and thanks to yourselves having been given the opportunity to do that with as little discomfort as possible in that wonderful hospice. I took a lot of strength from her but also from the staff who took the time to check in with me (as her daughter figure). Even though it was only a week, I have taken with me that incredible connection that they built with my aunt, my family and myself through their care for her and I'd like to go back and visit.

Do you often have family members dropping back in to say hello?! I'm left with a strong feeling that I'd like to give something back (although obviously thanked everyone profusely at the time!). Is there anything useful that I could do, rather than take time out of a nurse's day by just dropping in...? Do you need volunteers, for example, for anything? Fund raising a given, clearly, but something on a more personal level as well is what I'm wondering about

Diamond Doll

What is a syringe driver? And is it a controversial topic for some reason? Seeing as you mentioned it!

Is it your experience that there is a certain amount of stigma when patients are first admitted to palliative care? I.e. I know from what you've said that it's certainly not always end-of-life treatment, but do you find that patients/their families get disheartened when they're told they're being referred to palliative care - thinking that the end must be in sight ... and if so, how do you help them with that?

Are there any procedures you have to do that make you squeamish?

What's the gender split like for palliative nursing?

How do you see your career developing over time? Or have you thought that far ahead!

You mentioned you're not religious - does that ever cause any issues at all? It being Ireland and all. I guess I'm thinking of for example, if an elderly patient asked you to pray with them (does that even happen?) would you go along with it and do it, or just try to avoid such situations?

How do you determine who gets a say in the care given at the very end? Say if the patient has been making decisions all along, but at the end they're too unwell, and the family members can't agree on what they want? Does that often/ever happen?

Do you go to Coppers much? :P

volchitsa

Diamond Doll wrote: »

What is a syringe driver? And is it a controversial topic for some reason? Seeing as you mentioned it!

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.

Shrap

Diamond Doll wrote: »

What is a syringe driver? And is it a controversial topic for some reason? Seeing as you mentioned it!

I know the AMA nurse will answer this better, but in my understanding, it's the method of delivery for medication when a person is at a stage in their illness when they can no longer take meds orally - either through weakness or because their swallow is affected for other some reason. I think the controversial aspect is that (and it was hopped off me by an acquaintance when my aunt was dying) it seems to be seen as a definitive marker to indicate that someone is only days from death. Although in one of her previous answers, our good nurse spoke about someone who came back off the syringe driver and is in remission now!

It's spoken about in public in almost hushed tones though - it was asked to me when my aunt entered the hospice "Is she on the syringe driver yet? Only a matter of time when she is...." with a sage shake of the head. Seems to be viewed as one of the last coffin nails. Can't say I appreciated the question at the time!

Edit: Ooh, shows what I know! Lots more reasons for it to be controversial than I ever thought of above - thanks volchista!

volchitsa

Shrap wrote: »

It's spoken about in public in almost hushed tones though - it was asked to me when my aunt entered the hospice "Is she on the syringe driver yet? Only a matter of time when she is...." with a sage shake of the head. Seems to be viewed as one of the last coffin nails. Can't say I appreciated the question at the time!

Yes that too, I guess having my father at home when he was put on the syringe driver meant that our view of it was a little different, partly because "outsiders" didn't think to ask, (they often didn't realize that his death was so imminent - the whole hospice/hospital for the dying person seems to be so anchored in people's minds that anyone who's not in hospital isn't thought to be actually dying.)

And also, I imagine, because we were left alone with him on the syringe driver, and when we saw he was starting to get agitated again, the whole idea of "do we start messing about with this thing which has a code but which we may not be supposed to know" was quite acute.

But you're absolutely right, because I gathered from the very careful "precautionary" way the nurses explained to us that he would be put on it, but that it didn't necessarily mean it was the end (though in fact in his case it did) and that people could sometimes come back off it does seem to show that they know that's how many people do interpret the event.

Oh and you're also right about the no-swallow issue, that was our case.

LynnGrace

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.