3 Champions Searches about end-of-life issues

I am currently engaged in 3 Champions Searches, which were prompted by some e-mails I've recently exchanged with a lecturer-nurse who is doing some work on an end-of-life pathway. I'm posting some of the very early replies, so that I can include a link to this thread in my subsequent Champions Search e-mails, as the search is ongoing.

I intend to post replies in batches, after removing obvious identifying names, etc: I will try to 'edit' not at all, or as little as possible if I need to (for example, if a lot of the response was 'off topic'). I had intended to put the replies up separately to the three questions, but it turns out that the second and third are natural partners, and even responses to the first question, impinge on the others at times.

The three questions are:

1) How can end-of-life patients and their relatives, be recruited to participate in formal research projects, so that their input can shape and improve the behaviour of the professionals involved with end-of-life care ? The NHS seems to be mainly influenced by 'formal research'.

2) There are indications, that patients somehow 'regard' nurses who work with end-of-life patients as being 'better than other nurses' in some sense: is this true (do patients express that, and are nurses aware of this)

3) Why do nurses and professional carers who choose to work with end-of-life patients, make that choice ? What motivates them ?

I put question 1 to a wide variety of professionals and lay people, but I've restricted my searching re 2 & 3 to nurses and professional carers whose profiles suggest they work in end-of-life care.

Personally, I'm mainly interested in EoL at home, and the alignment of mindsets and perspectives between professionals of various types and patients and live-with relatives (it comes down to law, and decision making, largely) - but because some of this is about 'how people think', I am interested in questions 2 & 3 (but I'm not quite sure how I could use the answers).

Feel free to post any answers of your own,

Mike

SECOND BATCH OF RESPONSES RECEIVED

Please note: I have not 'filtered' these by question - it should be clear, which question(s) these are answering from their text. I have perhaps also left in, comments I find revealing even if not immediately connected to the three questions.

Note: I sent an e-mail containing the following, to Karen (the Karen whose original response was the first I posted in batch no 1):

I do have a suspicion, that 'feelings about dying' tend to alter as people get older: so I am not convinced that young nurses, who do not work a lot with the elderly, will 'see' dying in the same way that 70 and 80 year olds tend to.

There was an episode of Dr Who, where he tells the heroine 'You've got to feel it - I can't do that for you', and there is a point made that 'her feelings are sharper, because she is young' (mind you, The Doctor is supposed to be 900+ years old).

I am not an ideal model for this, because I was depressed after my mother's death and that may well have influenced my own 'feelings', but I do wonder if emotions become 'dulled' with age: or at any rate, are somehow different ?'

I'm also interested in this current 'media frenzy' about 'nurses don't care any more'. Most of the nurses on Nursing Times, say 'we don't have the time to show that we care'. But, I've got this 'gut feeling', that perhaps many laymen, judge 'how much a nurse is caring', by looking for 'how much the nurse seems to be suffering with us' - hugely unfair ! Especially for 'dying': when someone you love dies, the death almost always 'damages you' somehow - nurses simply could not repeatedly experience that same level of damage, and stay even vaguely sane. But I suspect that 'we patients' don't expect doctors 'to suffer with us' in the same way ?

Karen sent back:

Hi Mike,

I read with interest your comments about age being a factor. I personally don't feel that at all. I started working in care at 17 and my attitude regarding death and how to support someone through the process has not changed in the last 20 odd years.

I still believe as I have always done that the individual has a right to die in the manner of their choosing in relation to where and what interventions they want in place or not, as the case may be.

There has been a full circle shift in relation to how we manage this in long term care. When I first started working in care homes it was only a sudden death usually that occurred in the care home, the belief being that we MUST do something and I struggled with that as we were putting someone in the back of an ambulance, someone I had looked after for years and knowing that they would die on the trip to hospital. As a care staff member that was very difficult for me to rationalise and always upsetting.

I always felt that it was wrong to ship them off to the hospital why could we not keep them at home and stay with them till the end, offering words of reassurance, reading to them, holding their hand if there was no family available and I always felt it was the last gift I could give them making sure they were comfortable and not alone and scared as they would likely be in the back of an ambulance with strangers and no kind words or a kind touch at the end.

I am pleased now with the system we have in place in relation to anticipatory care planning, DNACPR and believe it or not Funeral plans. All of these have helped ensure that the people we look after have their needs and wishes considered and acted upon.

Again it harks back to the "Having the conversation" and to be honest in my experience it is not the older person that has the issue it is us and the families that do.

I think that as the legal system and medical system is catching up to a need to have plans in place, nursing staff are piggybacking on this as a way to open up the conversation. To be honest as long as we have the conversation with them I am happy.

I always tell our young new staff the same thing that I was told on my first day in a care home, The day you stop feeling it is the day to stop doing it.

I had thought back then, that after a period of time that I would become indifferent or somehow desensitised to death but that day is yet to come and to be honest I hope it doesn't. You never get used to it, even when you know it is a given. That it may be in the next 5 minutes, 5 hours, 5 days, 5 years every time, whether it someone I know well or someone I don't. I still feel the same.

I have just learned over time how to rationalise it and deal with my own emotions better, there was a time where I would be distraught especially if it was someone I had looked after for a long time. Now I can reflect on our relationship and smile and know that I brought something into their life as they have mine and I do not forget them , there are times when it makes me very sad and sometimes I am grateful as their suffering has ended and they have been surrounded by their loved ones.

But I can understand the comment that you would go insane if you allowed it to consume you. I think a lot of how nurses manage is down to their own beliefs and to a certain extent their spirituality although that is not supposed to come into it but I think it helps nurses to deal with the situations that they encounter.

Kindest regards

Karen

Hi Mike

I currently work around reshaping care for older people, however still do occasional training on end of life care. As another respondent stated The Liverpool Care Pathway has had a lot of negative comments recently, and I feel it is good to redress the balance.

I found that working within the independent sector in Care Homes in Scotland, that having nursed people for many years within the care home it was just the natural nicest privilege to continue to nurse them and support their families as death approached. Within the care home sector this is perhaps easier as staff already have bonds with their patients.

As a nurse who has had the great privilege of nursing many people at the end of life, I do think that many patients and their families see end of life nurses as special and caring, I do believe that is because we actually have more time to spend listening and talking to the patients and their families. I am passionate about great end of life care, because lets face it if we don't get it right we can't go back and change what we have done, it is to late. It is vital therefore that we ask our patients what they want , and how they would like things to be. I always say to staff that if the patient has been well looked after all the way and on her dying day she is unkempt or wearing a dirty nightie, that is what her family will remember for ever.

regards
Nanette

Dear Mike

apart from not forgetting the importance of the cultural needs of the end of life Bme person and the access of certain religious leaders to the individual ad hoc as well as respecting the religious importance.

I don't think there is anything else to say

Great respect and Regards

Denise
Community Development Worker(Mental health)

Hi Mike

Thank you for your email. Here at the WXXX Mobile Library Service, the majority of our customer base is the elderly, so naturally our staff do see a lot of people who are at this stage in their lives.

However, can I just clarify with yourself what exactly your contact requires. Are they looking for ideas based on the experience of our staff when dealing with these customers or are they looking for ideas from the customers themselves?

Please get back to me and I will see what I can do to help.

Best Regards

Bali

I sent to Bali:

Thank you Bali,

What we are 'pondering', is how pateints and their relatives might 'be recruited' to formal studies of end-of-life NHS behaviour (which means 'final year of life' loosely).

It is quite intrusive, and people tend to avoid discussions around 'I'm dying/you are dying', but the NHS tends to be most influenced by 'formal research' into things.

So really, I'm not bothered where ideas come from: my idea was to just ask a lot of different people, and then to pass the suggestions back to the lecturer who is doing this type of research, for her to decide what looks potentially useful,

Best wishes, Mike

And Bali replied with:

Hi Mike

Sorry for the delay in replying to your email but it is a difficult one. I have given your email a lot of thought as it is a very delicate situation and I have briefly discussed it with my colleagues. I think that in order to "recruit" patients or their relatives to this study your friend would need to work closely with people/organisations who are providing the care and support to the person diagnosed as terminally ill or at this difficult "end of life" stage. Naturally it will not be appropriate to all and not everyone will want to participate in the study. But there a lot of brave people who would, even at this difficult time be wanting to help and improve things for others.

Unfortunately, due to legislation around "safeguarding" vulnerable people it is not something that we at the Mobile Library Service can help with. I think your idea of putting something in a newspaper targeted at this age group is a very good. And there must be other similar newspapers and magazines that could include the article. Another thought was approaching organisations like Macmillan, the cancer care and support charity as well as Marie Curie, local hospices etc. They help a lot of people through this end of life stage and would have the right contacts. I don't think that these "difficult" discussions should be ignored as ultimately "death" is something that is going to happen to everyone one day and this study is about making things better for everyone.

Sorry I couldn't be of further help on this occasion but please contact me if I can be of assistance in the future.

Best Regards

Bali

Dear Mike,

I dont think I can be of much help to you as my role as a Dignity Champion ceased when the Patients for Patient Safety Champions network was left to wither on the vine and we were absorbed into the WHO Global Network. This seems to concentrate mainly on internet exchanges and medical errors. Dont think I have read much about dignity for a long time, the focus seems to be on preventing death and infections.

Wearing another hat I am a Trustee of AGEUK Dudley and there is shortly to be Seminar held in West Bromwich entitled 'Dignity, Making it happen'. The date is the 26th June '13, 10.00 to 3.30. It is obviously focused on older care, but if you would like to go you can book via the website
ageuk.org.uk/dignitymakingithappen.

The only other ways I can think of are the direct approach. Find your local 'Healthwatch' organisation, CCGs should have something like a ;Healthcare Forum' they also hold some mtgs in public as do the local Hospital Trust. Go to the mtgs and ask the questions. Cant promise you will get anywhere though, After years of being a member of the awkward squad I cant see that I have made any difference at all. NHS Local used to be an online publication - dont know if it still is. They were always asking for input - write a blog and post it on their site. I did one for them on Medicines Management (attached) which also loosely covered a few dignity issues. Please use it it you think it would help.

I wish you luck in your endeavours. Perhaps I may see you at the AGEUK Dignity Event. Best wishes, Beryl

My (MIKE'S) COMMENTS: my final version of the Champions Search, combined the final two questions, and also pointed to this thread on the site (which is why Nanette' wrote 'As another respondent stated').

I do think, there is a theme emerging here: I think there is some support for the suggestion that patients do 'see end-of-life nurses as 'somehow better'', and I think the reason is probably 'because we actually have more time to spend listening and talking to the patients and their families' as Nanette said (something almost identical was written by Kirsty).

Bali stated something that is almost universally held as true by people who have thought about end-of-life behaviour, and how it could be improved:

'I don't think that these "difficult" discussions should be ignored as ultimately "death" is something that is going to happen to everyone one day'

BUT it is far from clear, how best to promote 'the difficult discussions'.

I can see where Beryl is coming from, with her:

'Cant promise you will get anywhere though, After years of being a member of the awkward squad I cant see that I have made any difference at all.'

I can comment from my own experience, of how difficult it is to prod the NHS into changing its behaviour for the better, especially if you are a lay person !

THIRD BATCH OF RESPONSES RECEIVED

I can answer in the past tense- my post went in the cuts. However I am now independently researching ( dementia)as well as in a different role ( not nursing)

I chose to work with Older people , my speciality being working with people with dementia and also end of life care in a day service. For a number of different reasons- It sometimes feels as though Nursing, medical and other health professionals treat Older people as though they landed at age 60+ and forget that they are individuals with a life history. I wanted to change the approach of the team I managed and ensure people where a valued individual - not a patient

Particularly when people are near the end of their lives and decisions are made for them, not with them, or no one has bothered to ask them about their feelings or choices before they may get to a point where it is difficult to communicate what they want/like /prefer

In my experience people very much appreciated being treated as an individual with a life history as well as being a partner in their care and not being done to in a task orientated way

Regards Carole

At the beginning of my nursing career I actually wanted to be a midwife with a nursing background, however, on my very first placement in hospital my true vocation was to be realised. An elderly gentleman spent 5 days constantly by the side of his dying wife, during this time he told me never ending stories of how they met, their life together and the family they created. By day 5 other nursing staff encouraged this man to go home to have a rest and shower on the understanding that should anything change he would be
contacted. The gentleman left the ward and within two hours the nursing staff rang him to tell him his wife was taking her last breaths. Although he raced to the hospital to be with his wife he sadly missed her death. I watched with fascination the roller coaster of emotions that he experienced, anger at her for dying when he was not with her, relief that she was finally out of pain and complete devastation as he realised that for the first time in 56 years of marriage, he was alone. He sat with his dead wife for around an hour until the
staff encouraged him to say his final goodbyes so that they could prepare his wife for the final part of her journey. He sat dazed as the nursing staff explained how a death certificate was to be obtained and what he was to do next. This gentleman was then ushered off the ward. It was at this point in time that I realised the importance of a good death for the deceased and those left behind. As a supernumary student I asked the nurse in charge if I could take my lunch break and at the same time help this man carry all of his
wife's belongings to his car. I escorted him to his car and invited him for a cup of tea in the hospital restaurant before he left. I used this time to listen to how he was feeling, what he understood of his forthcoming duties and ultimately to give him my time. The reason I wanted to do this was because I felt the nursing staff had been very mechanical in the way they dealt with him with very little thought to how he was feeling, I realised very early on that it is not just the patients that are important but those who are important to them.
After I saw him on his way he thanked me for going the extra mile in my care and stated that I had a great depth of empathy. It was at this point that I realised I really wanted to be the sort of nurse that provided care at a much deeper level than just a nurse with good clinical skills.

This incident made me reflect on what is important to me as a nurse and my career direction changed completely. Not everybody has a partner, friend or relative that can be by their side when they face the most important event in their lives, their own death. I am humbled to be the person that sits alongside providing a hand to hold when they are scared, offer kind words when they are lonely, organise spiritual care should they wish, provide nursing interventions to make them comfortable and most importantly be a caring nurse for them and whoever is with them. This is my idea of holistic nursing and I strive to provide the very best care I can. Nursing a dying patient is a very specialised area and not one that can be provided by everybody. Palliative nursing is my passion as much as living was that of my dying patient.

Question 2 - I personally do not think palliative nurses are any different to any other nurse as we are only doing our job in an area of our choosing. I admire nurses in other areas of specialism as they can provide nursing in a way that I could not. Ultimately nurses provide a service in an area that they feel comfortable to provide the best nursing they can, however, I have heard many comments from relatives and friends of deceased patients stating that we are completely different to other nurses as we seem to allocate more time and personal touches to the care we provide.

Susan

Hi Mike,

I have worked as a nurse on an In-Patient Unit at a local Hospice for the last 10 years, and also worked for a Hospice in the States for the 4 years previous to that. In answer to your colleagues question, I think most nurses who work in Palliative Care do so because they want to help provide symptom management and comfort , for people with
Cancer and other long-term conditions, and when it is time help them have a comfortable, dignified death, preferably in their preferred place of care. Personally the " holistic" philosophy of Palliative Care appeals to me, after spending many years working in Medical/Surgical nursing and feeling increasingly like nursing was becoming another "rat race" with not enough time to spend with patients, it is
nice to work somewhere where it is an expected part of our roles to sit and talk/listen to our patients.
Hope this helps.
Best wishes,
Amanda.

Hello Mike,
In response to your first question - Why am I working in Palliation / EOLC?
I have been a Macmillan Nurse for 19 years. Having started my nursing career in what was then a general surgical ward, I noticed that patients who had a cancer diagnosis were able to benefit from the expertise of Macmillan Nurses to address their troublesome symptoms and emotional needs. In contrast, the patients who had horrible symptoms from end
stage vascular disease were not eligible. As a result, I decided to attend as many courses as possible to up skill myself in areas such as symptom control and psychological support.
I didn't intend on pursuing Palliative Care as a career, but I found myself leaning towards this area as the personal and professional "satisfaction" (from want of a better word), from caring for patients and families was very rewarding, and continues to be after all this time. To coin a phrase from a F1 doctor who I worked with, "you only get one chance at dying well", and I think that this is a philosophy that we should all remember when we are caring for patients and their families
at end of life, and as a Macmillan Nurse, through education and professional practice, this is something that we are trying to advocate to all staff.

Whether being a nurse who works in Palliative / EOL makes you a better nurse? I have to say I disagree with this. It is down to the nurse, not the areas that he /she works in. I have encountered empathic nurses, who have demonstrated a high level of Palliative care within critical care units, and less empathy in nurses who work in wards where there is a high volume of Palliative Care.

Hope this is helpful

Helen

Dear Mike

I don't remember being asked about this so please don't worry.

1/

I think many people with dementia and their carers would get involved if asked, but I think you need to ask the right questions written an lay terms rather than medical terms as used by many professions.

I have been involved in a project like this and got quite a lot out of it.

There will be many who will not wish to approach this subject as they just don't want to go there, and this could be down to stigma.

But these interested people could be recruited form charities, or groups like Dendron, or possibly face book chat rooms where dementia is discussed.

I think that many research outlets I have come across, have spent time looking at how they can attract people to their research, by either talking to them at local events or charities, or by recruiting directly from local hospitals which treat people who have dementia.

This could also be done via the local news press

2/ I have certainly heard people say that end of life Nursing staff are more caring and understanding, but perhaps that is down to the fact that they are properly trained in the dementia field, and really want to make a difference to those with the illness.

Many nursing staff I have come across don't seem interested in dementia, as they think everyone who has it is a nuisance.

I think that many of those in general nursing don't really have the time to make a difference to someone with dementia.

3/ I think the quality of staff recruited in to the dementia side of nursing are on a different level, to most normal nurses and are more dedicated, simply because they want to be there.

Having talked to trainee nurses at a local University I got the feeling that they were genuine and slightly more dedicated, but perhaps I am slightly biased

However I think many of those who go into Dementia and end of life nursing, have had personal experience of someone having dementia in their family, and they want to make life better for those who suffer with dementia.

Best Wishes

Ken

FOURTH BATCH OF RESPONSES RECEIVED

I have sent out the 3 questions to some hospices, but as yet no replies have come back.

Also, the Helen whose comment follows next, is the same Helen whose previous response was in the third batch of responses:

I have (previously) replied to question 2 & 3.

In response to the first question regarding research. I think this is a difficult area, and due to the nature and sensitivity surrounding palliative care organisations are reluctant to allow patients and or carers to be involved in research. There is also an attrition rate to consider.

One of the ways in which we assess the effectiveness of our service to
patients and carers is by doing a patient and carer satisfaction questionnaire annually.

Regards
Helen

Hi Mike,

Sorry for the delay in responding to your email.

I do work in end of life care as a Macmillan clinical nurse specialist in palliative care within the acute hospital setting which has a large oncology and haematology unit. I have worked in specialist palliative care now for 4 years but prior to this worked in acute medicine for 14 years. I chose to work in palliative care as caring for dying patients and their families was always something that gave me both professional and personal satisfaction. Many people talk about having one chance to get it right and this is very much the case in dying patients. It is my belief that all health care professionals should be able to provide high quality end of life care irrespective of the care setting. Ultimately patients and their families want to be treated with respect, dignity, kindness and compassion.

Prior to coming into my recent post a lot of the end of life care I was involved with was with non-malignant disease which I feel is often overlooked and a much larger emphasis appears to be placed on patients with a cancer diagnosis. Many professionals ask me if working in palliative care and caring for dying patients is depressing but I feel I am in a privileged position and it is a very rewarding job. I would be happy to share my thoughts with your colleague.

Gill

Hi

Sorry it's taken me so long to answer

End of live care is a large part of district nursing and even though we may not have chose this path there are more and more patient wishing to die at home.
It is very rewarding and satisfying to enable them to carry out there last wish giving support and care as required to the patient and their family

Some Patient feel that the district nurses are special in the care they give
mainly I feel because the district nurse gets to know all the family and the patient giving care advice and support as needed

C

Community Specialist Practitioner

Hi Mike,

Firstly let me say that I felt very honoured to be a part of a fantastic palliative care team and I still miss the community ward on which I worked.

I commenced my nurse training with a desire to work in oncology. As I'm sure you are aware the training for student nurses involves a wide variety of clinical placements. I embraced each one with eagerness to learn. At the end of my first year, we were told we would be receiving a community placement with a health visitor, this was something I was looking forward to. The placement letters arrived and to my horror, all my peers were placed with health visitors and I was going to a palliative care ward. My first thought was 'I didn't come into nursing to watch people die, I want to make them better.'

My first day on the ward arrived and I was shown around and orientated to a lovely team. I began working alongside the healthcare assistants on a 13 hour shift. It wasn't until the end of the shift that I experienced the truly dedicated care these professionals provided to an EoL patient in his last moments.

As the placement progressed my confidence grew and I began admitting my own patients. One particular lady came in, she had pancreatic cancer. I got to know both her and her family. Each day assisting her with the activities of daily living and finding out more and more about her life. I returned to the ward on a Sunday after 2 days off to see her name had been moved from the general ward to one of the palliative care side rooms. With the niavity of a student nurse, I thought she was getting better.

The care I provided for her changed, from assistance to full dependance. Then, whilst on shift a few days later, her daughter came to the office for a nurse, no-one else was around and she needed support, so I walked with her back to her mums room, whilst she told me she thought her mums breathing had altered. We entered the room and although very inexperienced, I knew her breathing was different. I held the patients hand and talked to her, whilst her daughter sobbed in my arms. The ward sister came to support me at this point, and the patient took her last breath, whislt her daughter clung to me for support. Nothing needed to be said, I simply stayed with her daughter for as long as she needed.

Under the supervision of my mentor, I supported the rest of the family when they arrived. Making sure that the relatives room was made available for them and that they had everything they needed. The specific role of this ward allowed the time to provide high quality end of life care, without the busy rushed environment of an acute setting.

When the family were ready to leave, they came to the office to let the staff know they were leaving. I stayed sat down, as I thought they had come to speak to my mentor. However, they asked for me, the whole family wanted to thank me for the wonderful care that their relative had received and for the support we had provided them with. Each family member hugged me and thanked me personally.

It was when I reflected on this situation later, that I realised working on this ward, wasn't about watching people die, it was about making their last weeks, days, hours or even minutes the most comfortable and dignified they could be and allowing them and their families the time to talk about their lives.

This was the ward that I managed to secure a job on when I qualified, least to say I was over the moon to be part of such an amazing team.

So, in summary I chose to work in EoL care because it is a true privelledge to be a part of that patients life, to listen to the details of their life and to provide care that ensures the end of their life is dignified and pain free.

I hope this meets what you are looking at

Jaime
Student Health Visitor

FIFTH BATCH OF RESPONSES RECEIVED:

Hi Mike

Sorry for the delay in responding. I currently work within a Chemotherapy Unit, so not directly in Palliative care but certainly many of our patients are on a palliative pathway rather than a curative one.

These questions are very interesting, I chose to work within this field because I became inspired by the chemo nurses during a placement as a student nurse, their care, dedication and holistic approach to nursing the patients and caring for their families really touched me. I also had some personal expereince within the unit when my mum became a patient and I wanted to strive to become part of such a team. I feel that the one to one approach within our area suited me better than the task orientated organisation of the wards. Although at times it is difficult when patients become palliative that have started out as curative, and when a long term patient passes away, this still touches me and many of the team, but I guess that shows our care and commitment to the patients.

As for whether nurses in end of life care are 'better' that's a tricky topic! I think in every area there are inspiration, dedicated and commited nurses, and also those that are not some much, however I do feel that many areas within end of life care are better funded, due to hospital and charity funding, so that the nurses workloads can be managed better than perhaps other areas. I also feel that training within these areas is more geared towards holistic approaches and emotional support for patients, family/carers and also for staff to deal with the issues surrounding palliative care and end of life.

I hope these views are useful, please do not hesistate if you would like me to comment further.

Regards

Annie

Dear Mike , In my experience Nurses who work in hospices or for Macmillan may be seen to be "better" at dealing with End of life issues ,but I have also experienced Community nurses being equally as competent due the their therapeutic relationship with their patients in their own home. However I can not denied that Training in Advanced communication skills helps all practitioners dealing with the complex situations with end of life issues and therefore more confidence to support the patient and their families.

Regards Deirdre

Community Nurse Team Manager

I've 'trawled this up from the past' because a student nurse has just written a piece on Nursing Times, about how her gran died alone in hospital :'People die alone and scared whilst in our care - and it is unacceptable'.

This student nurse, says the experience has made her want to work in hospices, and I feel sure one of the replies here was almost identical.

I want to point the NT student nurse at this piece, but if you cut and paste a DIC address into NT, the link doesn't work - so, I'm adding this comment to move the piece up the DIC list, and then I can post its title on NT and instructions about how to get to the discussion section.