Now Ye're Talking - to a Palliative Care Nurse

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.

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.

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.

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

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

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

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.

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.