Now Ye're Talking - to a Palliative Care Nurse

I'm a Palliative Care Nurse, AMA

Lucyfur wrote: »

I'm really enjoying this

How do you deal with difficult patients? Considering you're in patients homes, do you have someone to call if you feel you need support?

I try to always remember that difficult patients and/or families are difficult for a reason and it's not my fault. By the way difficult doesn't always mean angry, it can be someone who is not compliant with medication, living in chaotic circumstances, someone who has symptoms which are difficult to treat or maybe has physical manifestations of their illness that are unpleasant.

In any case, I try to put my game face on and be as professional as possible for the duration of my interaction with them. Thankfully, to date I have not found myself in a situation where I felt that my safety was compromised but all the same I take a few basic precautions: no matter where I go, my car is always parked facing outwards. If I'm going somewhere potentially fractious I will ring someone before I go there and ask them to ring me back in 30 mins and keep ringing until I answer.

We have a consultant-lead multidisciplinary team meeting every week where we discuss challenges and that often offers suggestions if I feel inexperienced or out of ideas and if I think it's best to step back from the situation I may ask a colleague to see the patient the next few times to allow me to regroup and also a fresh face or pair of eyes may improve the situation, even if only temporarily.

monflat

Thanks for your replies!
Have you dealt with any palliative emergencies in the home setting in your career?
Which was the worst can you recall?

I'm a Palliative Care Nurse, AMA

monflat wrote: »

Thanks for your replies!
Have you dealt with any palliative emergencies in the home setting in your career?
Which was the worst can you recall?

You're very welcome

I'm only a year working in the community setting, and so far the only true emergency I've attended was a young man with a brain tumour who began seizing uncontrollably. The call came in early in the morning so I skipped the morning meeting and went straight out to the house armed with a prescription for heavy anti-convulsant medication from our doctor. Unfortunately I was unable to get his seizures under control and we had to call an ambulance. The gentleman died a few days later

Stheno

I'm wondering how you deal with very logical/emotiionally removed relatives.

When my dad had cancer and as it progressed, I just accepted he was going to die, he had a few scares etc, but when the end came, it came quickly and shockingly.

What I appreciated about it was that he realised it was approaching, gave my partner a lecture on minding me, and probably the one regret I have is not telling him I loved him, but we never had that sort of relationship.

In those final few days before he died, we knew he was dying, he was unconsious and unable to communicate, but reactions were different.

I spent time with him, knowing he was touch and go, others spent all time with him

is it more difficult to deal with people like me who logically go the end is near or does it make it easier?

I'd a friend in her forties die from breast cancer and her medication was adjusted prior to her death to ease her pain and her family appreciated it.

Is there a certain coldness required in palliative care?

monflat

Thats a sad case especially if he was comfortable at home.



We have a gp who visits residents in the nursing home who is very very slow to prescribe pain relief. Some of the residents had cancers, Copd, and generally all are over 80 yrs
Is this something you come across gp s not knowledgable in end of life care.

I find it very frustrating.
And I find some gp s absolutely do not like dealing in care of the older person.
It's heartbreaking

I'm a Palliative Care Nurse, AMA

monflat wrote: »

Where I'm working at the moment one of the GPs who frequently visits nursing home to see her residents is extremely extremely slow at prescribing pain relief.
I understand not everyone needs it and I'm talking about some people with varying conditions. Copd and heart failure some have had cancer too with other conditions..
It's extremely frustrating to see this you could be pleading with her to prescribe something.
Sure we will wait and see.....
Is there many gp s you come across that are like this? . Lack of knowledge of end of life care?

Sorry only spotted your follow-up question just there.

Thankfully so far I've only heard stories of GPs like that, or interacted with doctors who might be cautious enough. A lot of the GPs I work with are very frank about the fact that they lack knowledge around palliative care and that is their reasoning for referring the patient to us, the are seeking our support and advice and will do almost anything you tell them :eek: You know that you can choose to refer the patient to palliative care yourself if you think it's necessary/appropriate?! All you have to do is download the form from http://hse.ie/eng/about/Who/clinical/natclinprog/palliativecareprogramme/service%20referral%20form.pdf and send it off to your local palliative care service. Obviously though the GP should be on board with this plan as it will be up to them to continue to care for the person, write prescriptions etc. The specialist palliative care team is not a treating team, we do not take over the care of the patient, we are there to support, guide and advise those who are the patients primary carers, be it GPs, PHNs, nursing home staff etc.

There's a wonderful short course called the European Certificate in the Essentials of Palliative Care and many GPs undertake it to improve their skills and knowledge which is really positive. It's open to nurses and pharmacists too, I can't recommend it enough.

I'm a Palliative Care Nurse, AMA

Stheno wrote: »

I'm wondering how you deal with very logical/emotiionally removed relatives.

When my dad had cancer and as it progressed, I just accepted he was going to die, he had a few scares etc, but when the end came, it came quickly and shockingly.

What I appreciated about it was that he realised it was approaching, gave my partner a lecture on minding me, and probably the one regret I have is not telling him I loved him, but we never had that sort of relationship.

In those final few days before he died, we knew he was dying, he was unconsious and unable to communicate, but reactions were different.

I spent time with him, knowing he was touch and go, others spent all time with him

is it more difficult to deal with people like me who logically go the end is near or does it make it easier?

I'd a friend in her forties die from breast cancer and her medication was adjusted prior to her death to ease her pain and her family appreciated it.

Is there a certain coldness required in palliative care?

I'm so sorry to hear about your Dad's passing, and I hope you're doing okay since. It sounds like you had good quality time with him and that's so precious. By being there with him I'm sure he knew how much you love him and cared for him and that most likely said more than words ever could so don't be too hard on yourself.

I suppose it does make things somewhat easier if everyone involved can see what's happening but it doesn't mean we presume you're okay. It can be a way of coping for some people and that's fine, we'd still encourage you to take care and allow yourself to grieve whenever you're ready.

I wouldn't say coldness is the attribute needed for a career in palliative care, warmth is most important. You can maintain an appropriate emotional distance while still being warm and empathetic but that takes time and experience to develop as a practitioner.

Lucyfur

Is there a really happy moment/day in your career that stands out for you?

I'm a Palliative Care Nurse, AMA

Lucyfur wrote: »

Is there a really happy moment/day in your career that stands out for you?

On a selfish/personal level, the day I got the results of my graduate diploma in Palliative Care was spectacularly happy for me. That year was one of the most stressful in my life and I honestly didn't think I'd done enough work to pass. I was dreading telling my parents/colleagues that I'd failed but figured it was a foregone conclusion. I checked the results on the computer at work and had to recheck them about 5 times before I could accept and believe what I'd seen. I nipped into the loo, rang my mam, told her I'd passed then stepped back onto the corridor and a colleague asked me if I was okay. I burst into tears of sheer joy and relief and sobbed my heart out in the middle of the unit

Around the same time, there was a lady who'd been in the unit for six months and I felt I'd built a really good relationship with her and her family, and I was on the night she died. I was so glad to have been with them from her admission to her death and they were all just lovely quiet, kind people. A few months after she died I was notified that I was one of four members of staff who the family nominated for an award in recognition of the care their Mam received. I got a little certificate and a beautiful bouquet of flowers. I was gobsmacked, not to mention mortified! I didn't think I had done anything special to warrant that but it was the most lovely and unexpected gesture. I'm not doing my job for praise or to have my ego stroked but I have to say I was chuffed to bits with that and it really boosted my confidence as I suffer a lot with self-doubt.

RoadhouseBlues

Hi there. Sorry I've gotten here so late. I went through it all with my parents. Both in their early 60's. As it worked out, my mother passed away in the hospice in Sligo and my father chose to stay at home. There was a few years between both of them dying and my father died beforehand. I used to stay up all night with him because he used to be awake with the medication and we would chat away about everything. I always remember one day he said to me that he didn't think he would be around the next day. I asked him was he in pain, and should I ring the doctor, but he said he felt fine but he didn't think he would around the next day. Sure enough the following night he died. Thank you for all the wonderful work you do. I suppose my question is, do you ever have patients who kind of know, like my father did that the were going so soon. Sorry if that was all a bit mixed up...

SmallTeapot

I agree with previous sentiments, this is one of the best threads (if not the best thread ever) on AMA. Very insightful.

I just have a few quick questions; I'm not sure if you outlined them already, if so, apologies in advance.

If you don't mind me asking, how old were you when you first started in Palliative care nursing? Do you think it is a specialty which requires candidates to be of a certain age/maturity to work in? Or is it very much the personality of the person or the resilience that is within...?

Have you ever faced a situation where you knew the patients family or the patient themselves on a personal level (outside the remit of clinical practice)?

Do you find that your colleagues in palliative care are more open to discussing the trials and tribulations of the job than those in your previous specialties?

Do you find that you're more vigilant with regards to your own health or the heath of family/friends as you have witnessed what your patients have gone through?

Sorry for the barrage of questions!

Thanks again Nurse for doing this thread

I'm a Palliative Care Nurse, AMA

RoadhouseBlues wrote: »

Hi there. Sorry I've gotten here so late. I went through it all with my parents. Both in their early 60's. As it worked out, my mother passed away in the hospice in Sligo and my father chose to stay at home. There was a few years between both of them dying and my father died beforehand. I used to stay up all night with him because he used to be awake with the medication and we would chat away about everything. I always remember one day he said to me that he didn't think he would be around the next day. I asked him was he in pain, and should I ring the doctor, but he said he felt fine but he didn't think he would around the next day. Sure enough the following night he died. Thank you for all the wonderful work you do. I suppose my question is, do you ever have patients who kind of know, like my father did that the were going so soon. Sorry if that was all a bit mixed up...

I'm sorry for your losses, that must have been a difficult time for you. Well done for taking such good care of your dad, not everyone can do that whole sitting up at night thing but I'm sure it meant a lot to him. I keep talking about the value of just being with people, it can be a lot more difficult than people might think.

To answer your question, yes people often know that their time is short. Sometimes they are at peace with that, sometimes they are filled with fear or upset, everyone is different really and it's a constant learning curve for me in knowing how best to respond to people's emotional needs at that time.

You're also welcome

I'm a Palliative Care Nurse, AMA

SmallTeapot wrote: »

I agree with previous sentiments, this is one of the best threads (if not the best thread ever) on AMA. Very insightful.

I just have a few quick questions; I'm not sure if you outlined them already, if so, apologies in advance.

If you don't mind me asking, how old were you when you first started in Palliative care nursing? Do you think it is a specialty which requires candidates to be of a certain age/maturity to work in? Or is it very much the personality of the person or the resilience that is within...?

Have you ever faced a situation where you knew the patients family or the patient themselves on a personal level (outside the remit of clinical practice)?

Do you find that your colleagues in palliative care are more open to discussing the trials and tribulations of the job than those in your previous specialties?

Do you find that you're more vigilant with regards to your own health or the heath of family/friends as you have witnessed what your patients have gone through?

Sorry for the barrage of questions!

Thanks again Nurse for doing this thread

Thanks for the kind words and I'm glad you're enjoying the thread so far

I was in my mid twenties when I started here and sometimes I wonder was I too young to commit to this career for the rest of my life/am I at risk of burn out/am I mature or experienced enough but I seem to be doing alright so far so I'm not going to get caught up in a problem that doesn't even exist right now. I fell into this job at the right time in my life and when it stops being the right job for me I will be more skilled at knowing and recognising that so I will look for something else when if/when that time comes. The universe gave me this job when I felt like my life was falling apart, I hope it will continue to grace me with such good fortune if I need it. For others I suppose it is dependent on the individual. I would encourage someone considering a career in palliative care to get other experience elsewhere first from both a professional and personal point of view.

I am not from the town I work in so I haven't met anyone I knew very well but as I've gotten to know neighbours I've met some of them here and one day last year a patient's brother recognised me by my name badge, he knows my Dad and lives near my parents.

The whole ethos in the place I work is very caring towards staff as well as patients so openness and talking is very much encouraged and facilitated, definitely more so than where I trained and the first place I worked. In the pharma company there was no formal debriefing or support from management and I really felt that once I was making them money, they didn't care about anything else. The girls I worked side by side with there were a wonderful support to me though and I hope I was as supportive in return.

I am somewhat health conscious but I am not too invested in it either. I try not to be a complete hedonist but I do think that life if for living and we've all hear the stories of the man who never smoked or drank, always ate well, always exercised and still got cancer so I think to a degree what will be will be. I am a bit more inclined to keep an eye on my parents though.

I'm a Palliative Care Nurse, AMA

I'm at a course all day today so won't be free to answer questions until this evening but please keep them coming until then

ainy

Hi, i'm an oncology nurse considering a change to community based palliative care, this thread has been so helpful. Thank you.
I'm delighted to hear that you were in your twentys starting in that position, I had been thinking, is it too early for me, would I burn out, i'm late 20s.
This thread has given me reassurance that this career path would be suitable for me and me for it!

can I ask what hours or how many days/ week you work?
have you children yourself? or can you see yourself still working in this area if you were to have a child? (sorry if thats too personal).

Thanks for taking the time to do this thread, I think its giving people a greater understanding of palliative care and that it doesn't just mean death and if we can get the wider public to not be afraid of the words palliative care and see the benefits good palliative care can bring it would make it easier to introduce earlier in the acute setting and therefore improve overall quality of care for patients. (oh to live/work in an ideal world!)
thanks again

kneemos

Ever seen a ghost?

Tasden

No question, just thank you for the work you do

Gloomtastic!

Thanks for doing this, great thread.

You hear about people who are near death 'hanging on' til they've said goodbye to everyone, like a close relative who had to travel a distance to see them. Do you witness that much?

Do people ever make final requests to you that you feel obliged to fulfill?

Diamond Doll

Any profound or interesting "last words" you've heard that you'd be willing to share?

If you were to have to work in a career entirely unrelated to nursing or anything medical. What would it be?

Do you feel your salary is reflective of the work you do?

Do you get lots of friends/family asking you for advice about how to cope with their sick/dying family members, and does it ever feel frustrating? Like does it ever feel like it's impossible to leave the "office" environment behind, without being insensitive?

I work in an office. Most of us, on a bad day, can just put our heads down and get on with the job. I'm guessing you can't really do that, you have to be so emotionally invested, all of the time. That must be so difficult? That you really can't just have a "bad day"?

I admire you and your colleagues so much. It's a job I couldn't do!

I'm a Palliative Care Nurse, AMA

ainy wrote: »

Hi, i'm an oncology nurse considering a change to community based palliative care, this thread has been so helpful. Thank you.
I'm delighted to hear that you were in your twentys starting in that position, I had been thinking, is it too early for me, would I burn out, i'm late 20s.
This thread has given me reassurance that this career path would be suitable for me and me for it!

can I ask what hours or how many days/ week you work?
have you children yourself? or can you see yourself still working in this area if you were to have a child? (sorry if thats too personal).

Thanks for taking the time to do this thread, I think its giving people a greater understanding of palliative care and that it doesn't just mean death and if we can get the wider public to not be afraid of the words palliative care and see the benefits good palliative care can bring it would make it easier to introduce earlier in the acute setting and therefore improve overall quality of care for patients. (oh to live/work in an ideal world!)
thanks again

You're welcome

Glad to hear that you're considering the move to specialist palliative care. While I know your oncology experience will stand to you hugely, I would urge you to go and work in a specialist palliative care unit first before pursuing a community post. I am working as a CNS so you would be expected to have the knowledge that comes from working in the inpatient setting and would have to have at least a graduate diploma in palliative care. If you're nervous to leave oncology, I would strongly advise you to do the European Certificate in the Essentials of Palliative Care. It's distance learning and really equips you well with an excellent foundation in the basic principles so if you decide that palliative isn't the route for you after all, at least you can apply that learning to your day to day work.

I work 4 10 hour shifts a week, 08:00-18:30. I only do weekends once every 2 months or so as there is only one nurse on on Saturday and Sunday. My weekday off is variable. At the moment, in a team of 9 I am one of only two full time staff. I'm cracking up a bit because I miss doing weekends and nights more frequently to get more time off together but to be fair I don't miss long days and trying to sleep when it's bright/noisy outside.

I don't have any children of my own but I guess this role is probably as close to family-friendly as you'll get in a clinical nursing setting. If I did have kids and I could afford it, I'd probably look at reducing my hours even just by one day a week. I can't think of any reason that I wouldn't keep working in this role if I did have children.

I'm a Palliative Care Nurse, AMA

kneemos wrote: »

Ever seen a ghost?

Haha no! But we were talking about this at break this morning. Apparently one of the rooms in the hospice is haunted, but not in a scary way. Lots of patients in that room have reported that a lady sat with them overnight and they were comforted by her presence, some staff say they've seen her too and while I'd be inclined to dismiss that, one person who told me of her experience is the most no-nonsense, serious person you could meet so I'm inclined to take her seriously.

Another colleague is currently performing a literature review into patients reporting seeing someone/feeling a presence in their room and apparently there's been a lot of research done on this topic!

I'm a Palliative Care Nurse, AMA

Tasden wrote: »

No question, just thank you for the work you do

You're very welcome

SEPT 23 1989

Is it true people get a big burst of life a few days before they die?

I'm a Palliative Care Nurse, AMA

Gloomtastic! wrote: »

Thanks for doing this, great thread.

You hear about people who are near death 'hanging on' til they've said goodbye to everyone, like a close relative who had to travel a distance to see them. Do you witness that much?

Do people ever make final requests to you that you feel obliged to fulfill?

Sometimes we do see people hanging on even while they're unresponsive, other times people miss their loved one's passing and it's really sad for those left behind.

People tend not to expect their nurse to fulfil their final wishes in my experience, unless maybe it's around a practical matter such as getting the patient home to die, and we do our best in those cases. I've witnessed people getting married in the inpatient unit and that can be simultaneously heartbreaking but rewarding too. We've hosted christenings and birthday/anniversary parties too and often encourage families to bring in the patients pets, in fact some people have moved their dog into their room with them and one person had their horse brought in around up to the back door!

I'm a Palliative Care Nurse, AMA

Diamond Doll wrote: »

Any profound or interesting "last words" you've heard that you'd be willing to share?

If you were to have to work in a career entirely unrelated to nursing or anything medical. What would it be?

Do you feel your salary is reflective of the work you do?

Do you get lots of friends/family asking you for advice about how to cope with their sick/dying family members, and does it ever feel frustrating? Like does it ever feel like it's impossible to leave the "office" environment behind, without being insensitive?

I work in an office. Most of us, on a bad day, can just put our heads down and get on with the job. I'm guessing you can't really do that, you have to be so emotionally invested, all of the time. That must be so difficult? That you really can't just have a "bad day"?

I admire you and your colleagues so much. It's a job I couldn't do!

Thanks

People often say very profound things to us but not necessarily as their absolute "final words". If I'm honest, I am struggling to remember anyone's exact final words, probably because we as nurses are coming and going while family members are usually sitting for much longer periods and perhaps hanging on everything the person is saying. Also, it's rarely (if ever) like the films where a person shares one final deep statement, then gasps, closes their eyes and is suddenly dead.

I struggle to picture myself doing anything non-healthcare but I think maybe I'd like to be a hairdresser?

Of course I'd like to be earning more money but honestly I think I'm doing okayish for my age and experience. Now and again though I find myself up to my elbows in something unmentionable or doing something completely bizarre and think to myself "there's gotta be easier ways to make money than this/I don't get paid nearly enough for this sh!t" I'm just crap at managing my money so I'm still always stony broke :pac:

Luckily only one close friend has needed to come to me for advice when her dad was dying. He was terminal from diagnosis and only lived 9 weeks, her and her mum were understandably devastated, it didn't bother me in the slightest to help in any way I could, it was my privilege. Her dad was a lovely man and she is a wonderful friend who has been there for me during my troubles and losses, it was the least I could do.

It can be hard to have a bad day on the ward as you're there and you're needed to be present and professional to the best of your abilities. My colleagues there were and still are amazing though, if you told them how you're feeling they'd row in and find a way to get you through the day somehow. It's a bit easier in the community, providing we're not too busy. You could do an admin day perhaps or do "lighter" visits. We all support and care for each other. I am so lucky to work with some remarkable and wonderful people.

I'm a Palliative Care Nurse, AMA

SEPT 23 1989 wrote: »

Is it true people get a big burst of life a few days before they die?

In some rare cases you might see that but it wouldn't be a given for every person.

volchitsa

Another poster who mostly just wanted to say thank you. I recently lost my father. We had a good deal to do with the palliative care team in the weeks and months before he died, and the nurses were just wonderful, they really were.

I do have one question though : I'm in the UK now, so the system is a bit different I'm sure, and I wonder if you have any equivalent to the McMillan nurses over there? That was an amazing service, where they were available pretty much 24/7 the last days where we were sitting with him knowing it was the end. It meant he was able to die at home instead of having to be kept in hospital to be re-stabilized every so often.

Thanks again anyway.

kneemos

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

Haha no! But we were talking about this at break this morning. Apparently one of the rooms in the hospice is haunted, but not in a scary way. Lots of patients in that room have reported that a lady sat with them overnight and they were comforted by her presence, some staff say they've seen her too and while I'd be inclined to dismiss that, one person who told me of her experience is the most no-nonsense, serious person you could meet so I'm inclined to take her seriously.

Another colleague is currently performing a literature review into patients reporting seeing someone/feeling a presence in their room and apparently there's been a lot of research done on this topic!

Not uncommon for nurses to see ghosts from what I've heard.
On one particular night shift they apparently wave at them and carry on with their work.:)

I'm a Palliative Care Nurse, AMA

volchitsa wrote: »

Another poster who mostly just wanted to say thank you. I recently lost my father. We had a good deal to do with the palliative care team in the weeks and months before he died, and the nurses were just wonderful, they really were.

I do have one question though : I'm in the UK now, so the system is a bit different I'm sure, and I wonder if you have any equivalent to the McMillan nurses over there? That was an amazing service, where they were available pretty much 24/7 the last days where we were sitting with him knowing it was the end. It meant he was able to die at home instead of having to be kept in hospital to be re-stabilized every so often.

Thanks again anyway.

You're welcome

Unfortunately we don't have 24 hour care like the Macmillan however the Irish Cancer Society provide night nurses for up to 10 nights (or the Hospice Foundation will fund the night nurses for non-malignant patients) and in my organisation we visit daily at the end to make sure everything is being managed adequately. Usually the Public Health Nurse and carers will visit too, and maybe the GP as well so while it's not quite the same, it still seems to work. I wonder if the culture here is slightly different though, maybe families here want to be more involved which allows it work. In any case, plenty of people manage to die well in their homes here despite the lack of 24 hour nursing support. Sometimes families even manage perfectly well by themselves without a night nurse or daily visits from us! People are remarkable!

I'm a Palliative Care Nurse, AMA

kneemos wrote: »

Not uncommon for nurses to see ghosts from what I've heard.
On one particular night shift they apparently wave at them and carry on with their work.:)

I've heard many stories of nurses seeing ghosts, I just wonder if maybe you're more open to the idea then you might have the experience?