Now Ye're Talking - to a Palliative Care Nurse

Boards.ie: Niamh

This week we have a Palliative Care Nurse to answer some questions in our AMA. Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

IAPCN, AMA is currently working as a community specialist nurse attached to a hospice where she previously worked on the in-patient unit.

Please ask her any questions you may have, particularly those you may have been afraid to ask before now.

As per site guidelines, no medical advice can be given.

Lucyfur

I would imagine self care is hugely important in your job. What do you do to switch off? Have you had to learn how to leave work at work?

What made you specialise in palliative care?

Because you're working on the community, do you care for and advise family members or is your work solely one to one with your patient?

Do you work with all age groups?

The Moldy Gowl

Would you rather fight 100 duck sized horses, or 1 horse sized duck?

Would you rather tell the truth the whole time, or always tell lies?

Jimmy Bottlehead

As the patients are potentially facing their end of life, do they tend to have a uniform attitude toward death? And do they tend to share the same regrets / hopes?

I'm a Palliative Care Nurse, AMA

Hi all,

Thanks for your questions so far and please keep them coming. I'll be free from 4pm and I look forward to getting stuck in.

Baggly

How has your outlook on your own mortality changed since you began working with those facing the end of their own lives?

Omackeral

What's your own personal opinion on euthanasia? Would that be shared by many colleagues?

What are some of the main differences between caring for male patients and female patients?

ibarelycare

Do you think it takes a certain personality type to be able to work in palliative care over other types of nursing?


In your experience, do the majority of patients go through similar thought processes while dealing terminal illnesses (e.g. the Kubler Ross 5 stages of grief theory)?


I imagine many people in the medical industry get a huge reward out of helping patients return to full health from illnesses and injuries. Do you ever feel like you're missing out on that?


Is there any other area of nursing that you'd like to work in?

Dozen Wicked Words

Not sure if you ever worked in general setting offering palliative care service, if you did, did you get frustrated by consultants (not palliative care specialists) unwillingness to discuss resuscitation status with patients and their loved ones.

Do you feel you have enough time to spend with people?

Did you ever use the Liverpool care pathway and any opinion on it?

Oh and a good Palliative Care Nurse is worth their weight in gold, you only appreciate it when you meet a terrible one.

Penny Tration

Do you get too emotionally involved at times with your patients?

Did you always want to do palliative care, or how did you choose it?


Not a question but - I couldn't do what you're doing. I'm sure any boardsies who've dealt with a friend or relative needing palliative care towards the end will agree with me when I say thank you for what you do.

hdowney

Is it difficult trying to be as caring as possible, whilst still trying to keep some detachment from the patient, given their prognosis? I'd imagine it is. I certainly couldn't do it.

Do you find friends and family understanding of your job? Time constraints, how you might be feeling etc?

Honestly what you do is wonderful and invaluable and I just want to say thank you

diomed

If they are depressed do you give them something to help?
If they are in pain do you give them something to help?

How should visitors behave?
I visit a parent in a nursing home once or more a week. I'll admit I don't have much news so I just sit with them in the room where most of the residents sit, talk, read the papers with them, attend Mass, have a cup of tea, and leave after about three hours. I would probably class my visits as boring to the person visited.
Other people have a visitor (or group of visitors) who stay for half an hour, have a great chat with all the news.
Any tips?

Liam McPoyle

What's your biggest bug bear about your job?

What's the most "happy ending" story eg people making a miraculous recovery, to date?

Do you believe in god/heaven/afterlife?

Have you ever come close to jacking it all in and if so, what career would you pick?

I'm a Palliative Care Nurse, AMA

Lucyfur wrote: »

I would imagine self care is hugely important in your job. What do you do to switch off? Have you had to learn how to leave work at work?

What made you specialise in palliative care?

Because you're working on the community, do you care for and advise family members or is your work solely one to one with your patient?

Do you work with all age groups?

Hi!

Going to apologise in advance for the long-winded answers, brevity is not one of my skills :pac:

Self care is important in all specialities of nursing/medicine but I think particularly so in palliative care, and as I am increasingly realising, more so again in the community as we are that little bit more isolated.

For me, being outside is a very important part of looking after myself. That can range from just sitting on the back doorstep for five minutes in the evening or walking to the shop to more strenuous activities such as hillwalking or water sport. For me, there is something very cleansing both mentally and physically about getting even just a little bit of fresh air every day. My place of work has an Employee Assistance Scheme which allows us to claim back a portion of money spent on things like massages, complimentary therapies, counselling, gym membership etc so there is an incentive to look after yourself. Also, just talking to your colleagues openly and honestly can be very helpful. I switch my work mobile off at the end of each shift (even though we are permitted to use them for personal use if desired), I don't read or answer work emails on my time off, I keep my "work clothes" separate and don't wear them on my days off (I don't wear a uniform any more). I try to just leave everything to do with work there and be myself in my own time. I am trying to practice mindfulness during my working day also.


I fell into the specialty of palliative care kinda by accident: I was providing basic palliative care in the jobs I worked in previously without really realising it. A few years ago I found myself desperately unhappy in my job and looking for any way out at all. I saw an ad in the paper for staff nurses in the Hospice, no palliative care experience needed so I jumped at it and got a 6 month contract. I had absolutely no idea what I was letting myself in for but thankfully it was one of the best decisions I've ever made in my life, I loved it and committed myself to this career.

Palliative care as an approach is holistic not just for the patient but their familes and anyone who is important to them too. We aim to look after everyone but obviously the patient is priority. The organisation I work for have an excellent bereavement follow up service for families.
For me in the community, my interactions with families can vary hugely. This can depend on where the patient is in their illness, ie: if there is easrly involvement with PC, the patient may be relatively well and when you visit at home you may meet them alone or perhaps with just a spouse or child as everyone else is at school/work. In other cases, people wish to shield their family from what is happening and so they try to meet you alone, or conversely the family members may not be willing or able to deal with the facts of their loved one's illness and so may avoid you. In other incidences you're meeting large family units from the very word go. Whatever the circumstnaces, we are there for the family too and we make it our business to create and maintain links and relationships with the family just as much as with the patient.

I am predominantly involved in caring for adults, the Hospice in which I work does not have any children's beds but I have nursed some young adults there. Since coming to work in the community I have been involved in caring for some children.

Thanks for your questions!

I'm a Palliative Care Nurse, AMA

Jimmy Bottlehead wrote: »

As the patients are potentially facing their end of life, do they tend to have a uniform attitude toward death? And do they tend to share the same regrets / hopes?

One thing I know for sure is that there is no such thing as a uniform attitude to death, and people never ever fail to surprise me with theirs.

Often the person you'd most expect to be afraid of dying is the one who is peaceful and calm, where the person you might expect to have reconciled themselves with their fate is actually nowhere near it. There are so many complex cultural, social, psychological and emotional factors in each person's life, it would be impossible for everyone to have a uniform attitude to dying. It is probably one of the most individual things that a person will ever do!

That said, from what I've seen, people do tend share common enough worries and concerns as they begin to face the reality of their situation: not wanting to part with loved ones, worrying about how they will cope, fear of a bad death/being in pain, fear of the afterlife etc. We have many ways of comforting the patient and reassuring them, sometimes successfully, sometimes not.

Sometimes too, we meet people who are in denial up until they take their final breath. That can be difficult for us as their provider of care as it may limit what we can do for the patient in terms of symptom management or preparatory work but we have to respect the patients wishes and ask ourselves do we want to do something for the patient or to make ourselves feel better?! Obviously that is a very difficult situation for family members too.

I'm a Palliative Care Nurse, AMA

Pter wrote: »

How has your outlook on your own mortality changed since you began working with those facing the end of their own lives?

Not really! I still think I'm a young wan and therefore invincible! Like, I'm not going to die, duh :P Ah, but in fairness, it reminds me of how precious life is and what a gift it is. Plus you would be surprised how life-affirming this job can be! It really makes you marvel at how resilient people can be in the face of adversity and the humour people can bring to what is an incredibly difficult time in their life.

It has certainly made me think long and hard about how much active treatment I would pursue if I was diagnosed with a cancer tomorrow and it's certainly made me think about my parents mortality as many of the people I am currently caring for are of a similar age to them.

I'm a Palliative Care Nurse, AMA

Omackeral wrote: »

What's your own personal opinion on euthanasia? Would that be shared by many colleagues?

What are some of the main differences between caring for male patients and female patients?

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.

There aren't many huge differences in looking after male and female patients except that men tend to be a little bit less fussy but also perhaps a bit less likely to open up about how they're feeling. This may be a gender/masculinity issue but also could be to do with generational issues, ie Irish men of a certain age simply may not have the vocabulary to express their fears and anxieties because they have not grown up talking about their feelings.

monflat

Wow this is the best thread ever on boards!!! I'm delighted you are in a career you love. Can you offer career advice?
I qualified in area of intellectual disability nursing I'm an RNID however I'm working in elderly care for a while now and I absolutely love end of life care.
I have completed a special purpose award in end of life care in athlone IT and various one day workshops with hospice and Millford care.
I think the area is intriguing.
However I'm kinda limited as to where I can work.
I find there are no positions available to me in my field.
And those other positions the requirements are firstly to be a RGN.
I'm gaining experience all the time in the care of the older person sector and this is the area where I would love to remain.

Can you see more openings for different positions in palliative care over the coming years with the population ageing?

I'm thinking of doing the post graduate diploma leading to masters in palliative care next sept in TCD however I really would like to hope there would be more career progression / opportunities upon completion of the course. What do you see happening or what could I do?

Many thanks

I'm a Palliative Care Nurse, AMA

ibarelycare wrote: »

Do you think it takes a certain personality type to be able to work in palliative care over other types of nursing?


In your experience, do the majority of patients go through similar thought processes while dealing terminal illnesses (e.g. the Kubler Ross 5 stages of grief theory)?


I imagine many people in the medical industry get a huge reward out of helping patients return to full health from illnesses and injuries. Do you ever feel like you're missing out on that?


Is there any other area of nursing that you'd like to work in?

I think that every specialty has different requirements and I hate when people hear I work in palliative care and do the head tilt and tell me how special I am. There's no such thing as an easy nursing job and we're not angels, we don't always get it right and we're no more special than the nurses in ICU/A&E/Wherever. I do think though that palliative care nurses need to be very skilled in the more emotional side of nursing than perhaps might be called for in the acute setting. You really need to know yourself and be open to reading and understanding people's emotional responses. There's a huge degree of patience and empathy required which might not be to every nurses liking. It suits me though. I'm a talker (if you hadn't guessed :pac: ) and a listener, plus I like to move slowly and get to know people so I really enjoy the pace of the job, it's varied enough because sometimes there is drama and emergency situations but other times it's quite relaxed. I guess that in itself is a skill that a nurse must have in order to work here- you need to know when the time for action is and recognise an emergency when you spot it, but also be able to know when it's more appropriate to step back.

Not every patient grieves for themselves, but often you find that their loved ones experience anticipatory grief, or as their circumstances change they may grieve the loss of a future that they'd imagined with the person who is sick. Our involvement in bereavement follow-up is limited enough though. In the in-patient unit you rarely ever see families again unless they come back to the unit for a particular reason. In the community, we follow up with the family 6 weeks after the patient dies. We offer to do a home visit but often it's just a long phone call. Most people identify experiencing some or all of those stages of grief but 6 weeks is still very soon after a loss and those stages are not linear, you don't progress from one to the next and reach a final goal of acceptance and recovery after a set time, you may experience a pendulum-like response moving back and forth from one stage to another. We are trained to be vigilant for indicators that a family member may be at a risk of complicated grief and we work very closely with GPs and public health nurses to make sure everyone involved is well supported and cared for, and our bereavement services offer counselling and support from about 6 months after the loss.

Personally I don't feel I'm missing out at at all, as I get enormous satisfaction knowing that I've done the best I can to make a terrible time just a little bit better for people and I feel an enormous sense of privilege to be doing what I do. To witness someone taking their final breaths and to support their family in the lead up and aftermath is massive, it's such a vulnerable time for everyone involved and I've seen the other side of the coin- patients dying in sub-optimal conditions with their symptoms not managed adequately (if at all!) So while the patient or their family might not know or care about the "what could have been", I'm glad every day to spare people from that to the best of my ability.

Once upon a time I thought I wanted to be an Emergency Department nurse but now it's my idea of hell! I'm so glad that my circumstances conspired against me and brought me here. I think in time I might like to work in nurse education perhaps but for the moment I'm very happy doing what I do

I'm a Palliative Care Nurse, AMA

Dozen Wicked Words wrote: »

Not sure if you ever worked in general setting offering palliative care service, if you did, did you get frustrated by consultants (not palliative care specialists) unwillingness to discuss resuscitation status with patients and their loved ones.

Do you feel you have enough time to spend with people?

Did you ever use the Liverpool care pathway and any opinion on it?

Oh and a good Palliative Care Nurse is worth their weight in gold, you only appreciate it when you meet a terrible one.

I haven't worked in the general setting as a palliative care nurse but the unwillingness to discuss/offer palliative care to patients or be honest and open about prognosis can trickle down to us in the specialist palliative care setting, sometimes people are totally at odds with where they or their loved one is at in their illness and we become the bad guys for breaking that news. Also, people may have unrealistic expectations of what we can offer/achieve and get very upset when we advise against pursuing further active or aggressive treatment.

By and large I do have enough time to spend with my patients. We tend to do an average of three visits per day but during the summer due to staff shortages some days we were going out with 5 or 6 visits planned and I find the quality of my visit suffers as a consequence. It's impossible to give your very best to very patient as your mind becomes bogged down throughout the day with information from the preceeding visits, not to mention the physical difficulty of getting to everyone in a timely fashion with traffic etc. Thankfully we seem to be back on an even keel for the moment though.

I haven't ever used the Liverpool Care Pathway in a formal way but one of the first things I was taught when I came to palliative care was how to recognise when someone is starting to die and how to respond appropriately ie. rationalising medications, switching routes of administration, having discussions around eating and drinking. None of those decisions are made in isolation by any one preactitioner, it's only done when there is consensus amongst the entire team and we are sure that we've explored and outruled any reversible causes for the decline such as infection and opioid toxicity. We never make changes without keeping families in the loop at all times. Sometimes the family recognise that the patient is starting to die and are in agreement, sometimes they don't understand or can't accept it and it requires patience, support and consideration but we have to keep the patients best interests at heart and offer lots of evidence and experience based rationale for our interventions (or perceived lack thereof). Sometimes we get it wrong though and the patient bounces back and we reinstate things like oral medication, diet and fluids, stop the syringe driver. You'd be surprised!

Thankfully I've never met a terrible palliative care nurse!

I'm a Palliative Care Nurse, AMA

Penny Tration wrote: »

Do you get too emotionally involved at times with your patients?

Did you always want to do palliative care, or how did you choose it?


Not a question but - I couldn't do what you're doing. I'm sure any boardsies who've dealt with a friend or relative needing palliative care towards the end will agree with me when I say thank you for what you do.

It's easier than you'd think to maintain a professional distance from your patients and their families, however sometimes you do meet people who really do touch your heart. Thankfully though, given the setting it's acceptable to get that little bit closer to people than you might in the general setting and I've often shed a tear for patients with their family, in private or with my colleagues. As I mentioned above though, I do find it very rewarding to care for patients at the end of their lives and in the vast majority of cases, you know that the person themselves was ready to go. They might never vocalise this, but when you know, you know and you would be glad for them that they were finally able to let go, even if it was only for their final few minutes. It can be hard to be with the family in the aftermath however, their pain and sadness is often palpable.

What I actually find harder is not to take peoples anger or criticism personally, even when you know that it's really just an outpouring of the persons desolation and frustration and you happen to be the nearest person within earshot.

I fell into palliative care really. I always wanted to be an emergency nurse but needed general experience first so when I qualified I went working in a community hospital and part of what we did was palliative care, supported b the community team from the nearest hospice. Many of the older nurses I worked with were very skilled in end of life care and I was in awe of their knowledge and expertise. I loved that part of the work but didn't have then confidence or self-belief to pursue it as a career option at that time. I hated the rest of the work there if I'm honest, I only worked there for 18 months and I'd say 12 of those were miserable, it wasn't stimulating and when my contract ran out I gladly left and went to work in a patient support role for a pharmaceutical company.

That job was very exciting and different initially with a lot of interaction with specialist palliative care teams who were also looking after my patients and I enjoyed it but as time went on the company wanted me to get into a more sales orientated role which really wasn't for me. I then suffered a bereavement in my immediate family and after a few months I realised I was lonely and wanted to get out of it and back to a more traditional nursing role. As I mentioned above, I spotted an ad in the paper for the hospice and the rest is history I really felt I'd found my place and happily I'm still loving it almost 5 years later.

You're welcome

I'm a Palliative Care Nurse, AMA

hdowney wrote: »

Is it difficult trying to be as caring as possible, whilst still trying to keep some detachment from the patient, given their prognosis? I'd imagine it is. I certainly couldn't do it.

Do you find friends and family understanding of your job? Time constraints, how you might be feeling etc?

Honestly what you do is wonderful and invaluable and I just want to say thank you

I think/hope I've covered your first question in my previous answers but if not, please don't t be shy, do ask me to elaborate or clarify

Most of my friends have a fair understanding of what I do. I live in a shared house and my housemates are very understanding but rarely ask me to talk about my experiences unless I want to, it's nice not to talk shop every day but on the other hand it's also nice to be able to open up if I've had a crap day and want to vent. My family think I drive around drinking tea all day I know my parents are extremely proud of me but I think they still see me as their tearaway teenage daughter and can't quite picture me in a professional setting acting as a specialist

You're also welcome

I'm a Palliative Care Nurse, AMA

diomed wrote: »

If they are depressed do you give them something to help?
If they are in pain do you give them something to help?

How should visitors behave?
I visit a parent in a nursing home once or more a week. I'll admit I don't have much news so I just sit with them in the room where most of the residents sit, talk, read the papers with them, attend Mass, have a cup of tea, and leave after about three hours. I would probably class my visits as boring to the person visited.
Other people have a visitor (or group of visitors) who stay for half an hour, have a great chat with all the news.
Any tips?

Depression is a tricky one. If I may refer you to the introductory post of this thread, you see there is reference to the importance of impeccable assessment and this is a very good example of why it's so important.

It would be easy to just look at a patient who is tearful or experiencing a low mood and say "they're depressed, better stick them on an anti-depressant". The reality may be that the person is experiencing a very appropriate reaction to their circumstances and they need to be allowed to work through what they're feeling. Not everybody who has been given a terminal diagnosis will be depressed. It is up to us to talk to the person and get a sense of whether their mood was low prior to their illness, whether they are struggling to cope and actually ask what they want us to do to help them. Pastoral or psychological support/counselling/complimentary therapy might actually be a much more appropriate way to go. Putting someone on antidepressants doesn't change make everything go away unfortunately. Also they can take up to six weeks to fully work and the person may not have that long left so by introducing another tablet you may actually cause more distress to the person with the added burden of swallowing even more pills, not to mention worsening of pre-existing symptoms such as nausea or drowsiness/fatigue. We do offer and advise the use of short-acting anti-anxiety medication as required.

Obviously if a person is in pain, we give them pain relief but once again it comes back to assessment. We have to ascertain what is causing the pain, what is the nature of the pain and offer relief accordingly. May patients have more than one type of pain and not all pains respond to opiates (ie morphine/oxycontin/hydromorphone) so we have to know what we're treating and assess for effect of treatment. Also, many patients experience total pain which may be much more difficult to treat. We offer non-medical pain relief such as complimentary therapy, heat packs and these are often just as effective as meds.

I'm not quite sure how to answer your last question unfortunately as every family dynamic is different and the long term care setting is quite different from the palliative one but I think there's huge value to just being present with someone even if you're not full of laughs and jokes and excitement. I'm sure your parent cherishes that time with you more than you realise so don't be too hard on yourself and keep it up

I'm a Palliative Care Nurse, AMA

Business Cat wrote: »

What's your biggest bug bear about your job?

What's the most "happy ending" story eg people making a miraculous recovery, to date?

Do you believe in god/heaven/afterlife?

Have you ever come close to jacking it all in and if so, what career would you pick?

I suppose my biggest gripe about nursing in general is when you're treated like a hand-maid rather than a professional. Thankfully it doesn't happen too often in this setting as people are generally so grateful for your input but now and again you get bossed around, spoken down to and treated with a sense of entitlement. In fact, in this setting on the rare occasions I encounter it, it's not even from the patient or their family but another visitor and the patient/family are mortified! A more palliative-specific example would be when other professionals see us as "the fixers", they try to get us to sort every single thing and wash their hands of the situation. Or when people presume that all I do is lay out dead people. THERE'S MORE TO PALLIATIVE CARE THAN THAT!! (Please excuse me if that comes across as crass or insensitive, but I have a fairly black sense of humour and cracking a joke now and again is my way of dealing with life in general)

I haven't really seen any truly miraculous recoveries but contrary to what you might believe, we do discharge patients from palliative care services sometimes! The first time I discharged someone was a boy of 14 who was being treated for cancer and initially his prognosis was guarded, probably not great but he did much better than expected and while he wasn't cured, he was symptom free, no longer had specialist palliative care needs and so we discharged him back to his GP and oncologist, he was thrilled to bits and last I heard he's still doing okay! We also have a lady on our books who's being treated for metastatic breast cancer for about 15 years now on and off, she's been with us for 5 years and it does my heart good to visit to her. She's had a hard life but she's as tough as old boots and she is so pragmatic in the face of adversity. She's not a well woman but she's certainly not imminently dying We have the serious chats about her symptoms and how she's coping, then we have the laughs about Home and Away! It really is inspiring to see how she is living with illness as opposed to battling it.

I'm very conflicted in my beliefs. I'm not religious but am becoming more interested in and aware of my own spirituality. I suppose you would call me an agnostic really. I don't know if there's an afterlife. I find the concept a bit unbelievable really. I wish I could embrace it, maybe I would find it comforting but then again I don't feel distressed or tormented by the thought of it's absence either. I hate when people say "he's in a better place now" either regarding my own loss or if talking about someone else but that's just my own view. It's not always appropriate for me to express that, but I'm okay with that.

I've often said that I don't want to be a nurse any more but usually that's just an emotional outburst that doesn't last very long. I honestly don't know what else I could do with my life! I'd be very upset if for some reason I had to leave nursing right now.

I'm a Palliative Care Nurse, AMA

monflat wrote: »

Wow this is the best thread ever on boards!!! I'm delighted you are in a career you love. Can you offer career advice?
I qualified in area of intellectual disability nursing I'm an RNID however I'm working in elderly care for a while now and I absolutely love end of life care.
I have completed a special purpose award in end of life care in athlone IT and various one day workshops with hospice and Millford care.
I think the area is intriguing.
However I'm kinda limited as to where I can work.
I find there are no positions available to me in my field.
And those other positions the requirements are firstly to be a RGN.
I'm gaining experience all the time in the care of the older person sector and this is the area where I would love to remain.

Can you see more openings for different positions in palliative care over the coming years with the population ageing?

I'm thinking of doing the post graduate diploma leading to masters in palliative care next sept in TCD however I really would like to hope there would be more career progression / opportunities upon completion of the course. What do you see happening or what could I do?

Many thanks

Hi, and thank you for the kind words

I don't really know what advice to offer regarding your career right now as you're doing all the right things in regards education and training. Perhaps if you were to speak to the director of nursing in your nearest hospice and see if there's any way they could employ you?

I can definitely see the role of the palliative care nurse expanding in coming years. It is my understanding that the current government are keen to invest in this area and I'm sure that in time that even more specialised posts will be created. Palliative care for people with intellectual disabilities is fascinating and I'm currently doing a case review of one such person I was very involved with. The work of the All-Ireland Institute of Hospice and Palliative care might be of interest to you.

As I mentioned before, palliative care is not just for cancer patients, we look after many patients with incurable illnesses such as Chronic Obstructive Pulmonary Disease, heart failure, kidney failure, Motor Neuron Disease, Dementia and a lot of patients with learning disabilities have these ailments so there's definitely a role to play for you there. Best of luck and I hope you find the job for you!

You're also welcome.

I'm a Palliative Care Nurse, AMA

I'm so sorry it's taking me so long with my replies, my laptop is a hape of shite (pardon my French) and I can't find my iPad but please keep the questions coming. I hope you're enjoying this as much as I am and I'm not boring you all to death (ba dum tish) with my Abe Simpson-esque stories!

Wanderer78

im extremely grateful for the palliative care we and my father received while my father was battling cancer. you play a vital role in the process. best of luck with things nursey

Dozen Wicked Words

Do you think there is a place for complimentary therapies in palliative care?

Perhaps a more negative question but have people you've met or nursed patients who've been persuaded to go off regular treatment for untested or unproven ideas?


(not saying question 1 and 2 are the same thing by the way)

Nib

What's your views on euthanasia?

Lucyfur

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'm a Palliative Care Nurse, AMA

Nib wrote: »

What's your views on euthanasia?

Hi! Thanks for your question, however I've addressed it 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.

Dozen Wicked Words wrote: »

Do you think there is a place for complimentary therapies in palliative care?

Perhaps a more negative question but have people you've met or nursed patients who've been persuaded to go off regular treatment for untested or unproven ideas?


(not saying question 1 and 2 are the same thing by the way)

Good question and I should take this opportunity to clarify that when I mention complimentary therapies I am referring to massage, reflexology, aromatherapy, music and art therapy. I think they're massively useful and important and I'm so glad that we are able to offer them to people.

I've nursed a few people who have done this and found it incredibly difficult to be honest. Some have gone to a clinic in the US which purports to be able to cure cancer with a stringent diet and supplement regime. It seems to become all-consuming for the person and their family, they've heavily invested both financially and emotionally and it's frustrating when we as practitioners see a patient who is massively symptomatic but is declining any traditional medical/pharmacological intervention to ease their symptoms. We see the patient as clearly disimproving and beginning to die but they or their family report that they are improving. You have to respect their decisions but I wish you could urge them to face facts and abandon this restrictive diet and enjoy whatever it is they might actually want to eat or to accept pain relief/steroids to make their remaining time a bit more enjoyable. That's my personal discomfort though and I have to be mindful of the fact that this is not about me and what I want, it's their choice and as long as the patient is safe and involved in the decision making process I have to step back.

Some of my patients are using cannabis oil. I have massive concerns about them buying God knows what from the internet but again I have to respect the fact that they just want to try anything that might save/prolong their life. What I have noticed however is that it seems it's rarely the person themselves who instigates these alternative treatments. It is often the suggestion of a family member or close friend and this is probably borne out of that individuals sense of helplessness and desire to do SOMETHING to help fix this dreadful situation. I haven't seen enough good quality evidence so far to convince me that cannabis alone can cure cancer but I am very interested in its role in controlling undesirable symptoms such as nausea/pain/insomnia.

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.