Now Ye're Talking - to a Palliative Care Nurse

I'm a Palliative Care Nurse, AMA

Manufactured Miracle wrote: »

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.

Thank you for your kind words and best wishes to you in your recovery.

To answer your question, I suppose you can't fake being happy in your work if you don't actually enjoy it. I can only speak for myself when I say that I really do love my job and if I wasn't happy in it, I couldn't keep doing it.

The year I did my grad dip I hit a very rough patch in my relationship and I was living on my nerves, and sometimes coming to work was a respite for me: I could switch off mentally, tell my partner not to contact me for the day and just immerse myself in the days tasks. Work simultaneously drove me mad but saved me that year. I won't pretend I was all sunshine and light every day that year, but I tried the best I could to be polite and cheerful even if I was then like an antichrist elsewhere

I'm a Palliative Care Nurse, AMA

monflat wrote: »

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?

I'm not sure if it's a case of families not believing that palliative care can be delivered in nursing homes, I expect it's more that they don't actually know that community specialist palliative care teams will visit people in nursing homes.

A syringe driver costs about a grand as far as I know, and that's before all the other associated costs. I would advise against your nursing home buying one though. It's a piece of specialist equipment and shouldn't be instigated by someone who isn't experienced in recognition of the end of life and symptom management. It would probably be a lot more cost effective and safe to refer the patient to palliative care and allow them to provide the pump at the appropriate time and they will then provide associated education and support to staff. If you start a patient on one off your own bat without palliative care team supervision, you have no support if things go wrong. Also a palliative nurse could put in a line for the patient to receive subcuts through.

I'm a Palliative Care Nurse, AMA

Shrap wrote: »

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

I'm sorry for your loss but glad to hear that you and your aunts experience was a positive one.

In my place, in the inpatient unit family members may call back to collect the death notification form after a week or two or in time to volunteer or maybe if they are visiting someone else in the building. It's always nice to see them but it can actually be harder than the person might have anticipated. In the community we follow up with families after 6 weeks just to see how they're managing.

Volunteers are always needed for a myriad of tasks: driving patients to and from day hospice or from the hospice to appointments, making tea for patients and families in the evening, helping with music or art therapy, some are trained as counsellors and offer bereavement support!

I hope if you do pursue the volunteering route you enjoy it and find it fulfilling, best of luck

Sinister Kid

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?

Shrap

Thanks very much for your reply and for the suggestions! The driving, the art therapy and the making tea sounds like things I could do in my more local hospice (Marymount is 2 hrs away from me!). Great ideas.

And as for visiting the staff who actually cared for my aunt, yes, I take your point completely. I'll not be coming in for a cry. May have to leave it off for a year!

Mind yourself and thanks again.

I'm a Palliative Care Nurse, AMA

Dubl07 wrote: »

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?

Oh my god, I facepalmed SO HARD when I read that. What a disgraceful statement for a medical professional to make :mad: it really angers me that there are people out there who are so ignorant around end of life matters yet feel it is appropriate to make such statements.

Morphine is NOT used to hasten death by inducing respiratory arrest. Yes, it can cause it if administered in doses which are disproportionate to the patients requirements, although it is worth noting that it is an extremely late effect.

We commonly hear "oh the palliative team put them on the morphine, then they died" from people who don't realise that a patient may have been taking oral morphine tablets for weeks or months prior to their death, they perceive that the patient died because of the morphine they were given when in fact they were given morphine (and/or other mess to manage symptoms) because they were dying. Morphine doesn't make death happen any faster, it just eases suffering.

monflat

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.

volchitsa

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

Oh my god, I facepalmed SO HARD when I read that. What a disgraceful statement for a medical professional to make :mad: it really angers me that there are people out there who are so ignorant around end of life matters yet feel it is appropriate to make such statements.

In my experience the palliative care team (mostly nurses, though I guess specialized palliative care doctors are the same, but you don't have as much contact with them) were incomparably more knowledgable than ordinary doctors. Luckily the other doctors know this and usually don't (again IME) undertake to give information that they don't really have. They very often told us to check something with the palliative care team, or else said they would do so themselves. I guess this sort of thing is exactly what they are trying to avoid.

monflat

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

I'm a Palliative Care Nurse, AMA

Diamond Doll wrote: »

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

A syringe driver/pump is a method of delivering medications to a patient continuously via a syringe which is refilled every 24 hours and through a small catheter/cannula which is sited just under the skin in the subcutaneous tissue (abbreviated to subcut). It is usually used if a patient is too drowsy/unresponsive to swallow oral medication which is why there is a connection between it and end of life care but also it can be used for acute symptom management much earlier in if a patient is nauseated, constipated/obstructed or not absorbing oral medication for some reason. Some people are on a driver on and off numerous times throughout their disease trajectory but that part of palliative care isn't well known or talked about by the general public.

Regarding stigma, yes there can be huge fear. Patients tell me on a daily basis "ah when I heard you were coming, I thought I was done for, but look at me now, I'm feeling so much better because you've gotten my pain/nausea/constipation/breathlessness under control". That's why early referral to palliative care is so vital.

I hate suctioning patients, I find it vile I think it's brutal on the patient too and it should be avoidable if the symptom (chest secretions) is anticipated and managed adequately so it's a last report for me in the IPU and I don't do it in the community.

The gender spilt doesn't appear any different to me than in the wider general nursing population.

I haven't really thought that far ahead really. My career to date has turned out so differently to how I expected so I'm trying not to expect anything any more and just keep my mind open to whatever opportunities that might present themselves to me in time.

I'm not particularly religious but not anti-religion so if someone asks me to pray with them, I won't refuse but may admit that I mightn't know all they prayers. I think it's actually an honour to be asked to pray with a family, it shows how much they consider you a part of the experience as opposed to someone in the background. Not every family wants you to pray with them.

Sometimes that happens and if people can't agree, they might just defer to you as the nurse "in charge" of the situation to offer suggestions or else you might have to get stuck in, offer your professional opinion on what is happening and what needs to be done and kindly but firmly remind the people that the patients best interest is the priority above all.

You're presuming I'm in Dublin?! I haven't been in Coppers in years :cool:

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.