Maintain pressure on reforms to protect NHSCare of the dying must be part of mandatory training
The recognition and diagnosis of dying is always complex, irrespective of previous diagnosis or history, and uncertainty is an integral part of dying.
The aim of the Liverpool Care Pathway for the Dying Patient (LCP) - a continuous quality improvement programme - is to apply the excellent model of hospice care for the dying to other healthcare settings using an integrated care pathway.
The LCP document guides and enables healthcare professionals to focus on care in the last hours or days of life when death is expected. This promotes high quality care that is tailored to the patient’s individual needs.
A major cultural shift is required if the needs of dying patients are to be met and the workforce is to be empowered to take a leading role in this process. Dying patients are part of the population of clinical settings.
‘Using the care pathway in any environment requires ongoing assessment and involves regular reflection, challenge, critical decision making and clinical skill’
We need to ensure high quality care for our dying patients and their relatives or carers. The LCP captures the hearts and minds of clinicians to respond to and influence policy to make a lasting difference at the bedside.
Care of the dying is urgent care. It must be seen as part of the core business of an organisation - training in end of life care must be a priority.
The pathway can improve quality of care, while increasing productivity and using innovation to encourage and embed sustainable change.
The LCP generic document is only as good as the teams who are using it. Using the care pathway in any environment requires ongoing assessment and involves regular reflection, challenge, critical senior decision making and clinical skill, in the best interest of the patient.
Implementing the LCP programme will create a change in the organisation. Recognition of the fundamental aspects of a change management programme is pivotal to success.
The responsibility for the use of the LCP as part of a continuous quality improvement programme sits within the governance of an organisation, and should be underpinned by robust, ongoing education and training.
I believe that all healthcare professionals should have training in care of the dying provided as part of an organisation’s mandatory training programme.
The LCP central team coordinates the LCP programme which sits within the Marie Curie Palliative Care Institute Liverpool (MCPCIL).
The LCP generic version 11 has been under review since December 2007 as part of extensive consultation. The LCP generic version 12 reflects the feedback from this as well as the latest evidence (see www.mcpcil.org.uk).
The ethos of the LCP generic document has remained unchanged. However, in response to the consultation - which included carrying out two rounds of the National Care of the Dying Audit - Hospitals by MCPCIL and the clinical standards department of the Royal College of Physicians - the generic version 12 has greater clarity in key areas, particularly in communication, nutrition and hydration.
Care of our dying patients and their relatives or carers can be supported effectively by either version of the Liverpool Care Pathway.
We believe as with any evolving tool or technology, that those organisations who are using the LCP version 11 will work towards adopting version 12. As with all clinical guidelines and pathways, the LCP aims to support but does not replace clinical judgement.
The pathway is not the answer to the challenge of providing good quality care of the dying in our society but it is a step in the right direction; it has been recommended as a national and international best practice model for care in the last hours or days of life.
However, success is a journey - not a destination - and the road to success is always under construction. We need to continue to build on the evidence base to drive up quality care for all dying patients for this generation and the next.
The LCP Continuous Quality Improvement Programme
Aim
● To improve care of the dying in the last hours or days of life
Main themes
● To improve the knowledge related to the process of dying
● To improve the quality of care in the last hours or days of life
Main sections
● Initial assessment
● Ongoing assessment
● Care after death
Key domains of care
● Physical
● Psychological
● Social
● Spiritual
Main requirements for organisational governance
● Clinical decision making
● Management and leadership
● Learning and teaching
● Research and development
● Governance and risk
Deborah Murphy is directorate manager specialist palliative care, Royal Liverpool and Broadgreen University Hospital Trust, associate director, Marie Curie Palliative Care Institute Liverpool, and lead nurse for the Liverpool Care Pathway
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Readers' comments (21)
charity sati | 28-May-2010 12:39 pm
Can someone please tell me where such trainins is being done,i would like to attend one.I work in a nursing home and I too, strongly feel all healthcare/social care staff need to have adquate knowledge in the end-of-life care issues.
By the way i live in the East Midlands.
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Anonymous | 29-May-2010 1:21 pm
my father died recently in Taunton Musgrove Hospital, he was terminally ill and spent his final two days of life in agony on an inappropriate surgical ward. The LCP was not even mentioned until the 2nd day and even then was properly implicated until he was was moved onto an oncology ward where he died hours later. The anguish suffered by the family of witnessing a loved one dying in pain and begging for help which never came will remain with us forever, training in end of life care must be improved urgently.
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Graham Dalton | 30-May-2010 9:15 am
That is so sad! I have seen such things many times. There is no excuse for such poor care. We are supposed to be advocates for our patients.
As a student I am on my second placement at a hospice and know it can be done well. We need to value EoL care and hospices offer great training. Contact a local one and see what they have coming up.
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moira hill | 30-May-2010 12:35 pm
Whilst it has been a long time coming, at last there is a greater awareness of the need to raise standards of care for the dying. However it needs to consistent,and quality care should be delivered irrespective of where one dies. The care should meet their individual needs;holistic care being key. Mandatory training is needed for all persons coming into contact with the dying person, and their families. Obviously this needs to be tailored dependant on the role. Receptionists, maintenance, kitchen and laundry staff play an important part in delivering care, not just nurses, carers and doctors. Staff also need appropriate support. The LCP is a valuable tool, as is the Gold Standards Framework. Many PCTs have EoLc Facilitators who can be asked re. training, as well as the local Hospice. Having facilitated the GSF in Care Homes Programme I can recommend considering joining this programme, as it helps to look at a persons needs much earlier than in the last few days. This gives a team the opportunity to provide care that is truly person-centred. There are no second chances to get it right, we owe it to those we care for to work together as professionals to always strive for the best. Here's hoping the GMC guidance leads to doctors being consistent in taking a more active part in helping the dying person receive care that takes into account their wishes and preferences, having taken the time to explain their situation and options. I just worry that time will be used as an explanation for not discussing end of life issues with certain sections of society, for example the elderly. Let's hope.
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Peter Goble | 30-May-2010 1:05 pm
It would help if the basic message of articles like this could be stripped of corporate-speak such as 'change-management being pivotal to success' and 'success is not a destination, it's a journey'.
What do these cheesy exhorations add to the basic message? Nothing, in my opinion, they just sound patronising and aloof.
As the chairman of a hospice charity and a practising nurse with experience of end-of-life care in residential care, I suggest that well-meaning EoL practitioners get out more to talk to front-line workers, fillet the business-speak from their offerings, and innovate away from tired 'mandatory training' slogans.
Believe me, these often sound like more jobs for box-tickers than anything that will "drive up" the yards of "standards" everyone is made to labour under in these target-blighted days.
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Anonymous | 30-May-2010 1:35 pm
i think this training will be valuable to every nurse, but i wonder if the idea is aimed at the wrong people for a start. the question i will always throw at anyone is whether the line managers & trusts are willing to release staff to undergo such trainings. i have been working as a trained nurse for almost 3yrs and the problem i face is that managers and trusts appear to make sure they have staff on the ward and then worry about staff training later. i believe this is the reason why some mandatory trainings are done online when it might be better done as lecture. other managers try to use link nurses inappropriately in cascading information to fellow colleagues where its better to facilitate study days for all members of staff. other managers are very good and actually encourage each individual to attend study days. but for instance how do you justify 2 managers in same hospital setting offering 2 wks and 6 wks supernumerary training respectively within same hospital? i wiork in a very busy respiratory ward & look after terminal cancer patients, & end stage COPD but when you have no oncology ward within the hospital its not always possible to get patients to hospices in time. as a result i agree training is vital {but i am not sure about the idea of making it mandatory].
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Anonymous | 30-May-2010 7:40 pm
Peter Goble, more power to you!!
You are so correct, forget the ticky boxes - lets really raise the profile of ALL those dying in hospitals.
The acute sector has rarely the time or the skills to provide the care that both the dying and their relatives deserve; sadly the acute sector does not appear genuinely interested in demonstrating genuine commitment to improving this provision - well, not until there are a few boxes to trick anyway!!
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Hardev Gill | 31-May-2010 11:38 am
Peter Goble - you've hit the nail.
Lets get practical. Mandatory training is so big anyway that half the time the trainees are asleep!!! We need more of yous on the wards - sharing your expertise with staff hands on not in a room much away from practical experience. Why are we brushing everything with the same broom? Not all training is mandatory...this training is essential but practical and must be at the bedside!
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Wendy Wilson | 31-May-2010 1:19 pm
I am a registered Nurse working in a nursing home and we have been using the LCP for a couple of years and find it a very useful pathway to follow during the final days of life. We have had many words of thanks from relatives who have complimented on the quality of care we have given to their loved ones enabling them to have a dignified, 'pain-free' death, hopefully in the manner that they may have discussed in an advanced care plan. If people working in nursing homes are trying to access this training, they could contact their local PCT who will most likely be able to give them the information they reuire.
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charity sati | 31-May-2010 9:36 pm
Thanks Wendy,will surely do.
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Beverley Wilkes | 2-Jun-2010 9:18 am
I work in my local hospital on the maternity ward - I give high standard care.
Twelve months ago I lost my 6 year old daughter to cancer, I cared for her at home for the last 5 months of her life because I felt that she would not receive the 1:1 care she deserved in a hospital/hospice setting. I never left her side. I am so glad I did. She got 24/7 care. I know that I was more than able and trained to care for her. The community/McMillian nurses supported me in caring for her. This helps with my grief and the pain I now endure.
My father was diagnosed with small cell lung cancer last October and died in hospital 20th May, twelve months after my daughter passed away. I visited him every single day during his illness. 10 days before he died he was admitted to the hospital where I work, I saw him that evening. He was weak but was able to function and talk to us. Then for the following 6 days we were told we could not visit him. The ward he was on, which was elderly care, had Norovirus and there was a complete ban for all relatives. We had a message that the palliative care team would come and talk to us - they did but only the day before he died!!!! (the weekend got in the way). I rang everyday to ask if we could see him, only to be told that my dad had CDif. They told us 'NO' we could not see him. It was only by talking to a senior medical consultant, who went to talk to the ward and see my dad, were we allowed to see him. He was in an appaulling state. Unshaven, lying in his own urine and excrement, scratching his buttocks red raw, with a bed sore that covered his whole pelvic region. He had excrement on his hands, which he had transferred to his face through the stress of pain and irritation. The Consultant immediately summoned medication to sedate my dad and then HCA's to clean him up. My dad was in a semi-comatosed state, not able to talk and only just able to recognise who I was.
I sat and cried. Why were we stopped from seeing him. Where was your LCP???? An animal would have been treated better. My dad died 2 days later in the arms of my mum. I am sickened that this could have happened in my own hospital, a hospital I used to love and respect. My mum is totally traumatised and cries all the time, thinking about my dad being abandoned in his last days. My brother, who had only just returned from the USA to spend time with my dad 2 weeks prior to my dad's admission, lost out on 6 days that he could have been with him. Nobody can give my brother that time with my dad back.
Where is the accountability????? Where is the LCP???? Where was the care for my dying father???? I need answers! I am hoping that any nursing staff are also shocked and that this is not normal practice. I agree that there is a definite need for training in one form or another, which needs to start immediately.
From a grieving daughter
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bob | 2-Jun-2010 4:23 pm
Beverley, I'm so sorry for your experience. I really want to be able to say something to help or support you but I am utterly shocked into silence by what you've just written. I'm so, so sorry.
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Anonymous | 3-Jun-2010 12:32 pm
Beverly
I am so sorry you and your family were treated this way - there is no reason - irrespective of an outbreak - why you should not have been allowed to visit your father. This is inexcusable and cruel. I have never heard of banning relatives - especially in the last days of life.
I am reduced to tears for you and your family. Words fail me. Where was the caring here? I am a Matron who covers both medical and elderly wards and I have never banned a visitor in the 5 years I have held this post - and I never will.
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Anonymous | 4-Jun-2010 11:36 am
Beverly,
Sorry for what you and your family had to go through.Does one needs special training in washing/shaving patients or simply maintaining patients hygiene? No,if you are a nurse and unable to do basic procedures for the dying or any patient,then am afraid you are not fit to be a nurse.Death is painful for family and friends and the last thing one wants is to see their loved one dying in pain or distressed,its not acceptable especially in this country where resources are readily available.I think those nurses who 'nursed' your Dad,must escalpate themselves.Where was the ward manager?We need to do more for older patients,everyone seems to preaching about dignity in older patients,where was dignity in this case(Beverly's dad)?
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Natalie Jewell | 4-Jun-2010 9:37 pm
I trained between 1998 and 2001 and was very surprised that dying was skimmed over. There was never even one special class for it, death and dying was just mentioned in passing. I found this area particularly difficult on the ward because, working on a children's medical ward, I was lucky that most of our clients went home at the end of their stay. That meant I never built up much experience in this area and the longer I worked more I worried about clients assuming I had more experience than I had. Making this training mandatory sounds like an excellent idea to me!
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Anonymous | 5-Jun-2010 1:46 am
Beverley, I am so very sorry to read what you had to experience. You must be devastated, not only at the loss of your father but the dreadful state of affairs you had to endure.
I have never heard of relatives being banned from visiting, as previously stated. This was a very cruel and callous thing for the staff to do.
I would, in your position, write a VERY strong letter of complaint to the CEO and copy in the ward manager.
The lack of nursing care afforded to your father is not only unforgivable but professional NEGLIGENCE. Someone needs to be held accountable for such poor care.
My heart bleeds for you and your family and reading your account reduced me to tears.
Please, dont let this rest, kick up stink, you have the consultant as a witness remember.
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judith willis | 5-Jun-2010 1:57 am
Nursing should encompass all, from the cradle to the grave.
I can only assume that university tutors have never met a patient. They certainly do not know how to prepare their students for the role of Nurse.
For those of you reading this that require an educational input, but, yet again alas whinge... why dont you take the initiative and approach your local hospice and offer some volantary work and learn from the real professionals in how to best care for the dying patient.
We are now very cash strapped and educational monies will dwindle along with nurses leaving. It will be impossible for your managers to let you go for study leave. So use your days off and bite the bullet for the sake and good care of your patients.
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Beverley Wilkes | 5-Jun-2010 9:20 am
To all those who have shown compassion, I want to thank you for commenting about my dad's experience. I will take it further and will write to our Chief Exec. Unfortunately, my emotional state is hindering any step forward at the moment, but I want you to know that I value your support.
Best regards and thanks again. I will keep you updated.
Beverley
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Anonymous | 5-Jun-2010 2:09 pm
To Natalie all those who try to blame their unis & tutors or education system for not training them on end of life care, use your own initiative. i qualified 3yrs ago and still believe one lesson at university was enough. how many nurses will still remember about drugs or end of life issues for that matter due to hrs of lectures.
i would love to train on end of life care as suggested by the article but in no way blame nurse training. i work in a busy respiratory ward and look after many end stage COPD, terminal Cancer as there is no oncology ward, and other palliative patients and at times can have about 3 patients on syringe drivers. i believe my experience on end of life is better due to the patients i constantly look after. so Natalie if you dont look after dying patients how is it the university's fault? were you going to remember all lectures? How about constantly checking policies & procedures & also reading your journals.
in the same way if a nurse uses syringe driver once in a blue moon, personally i dont expect them to be as good as someone who uses it regulary.
thumbs up judith willis. i also wrote on 30/05/10 @ 1.35 and totally agree with all your comments. i dare even ask my manager for time for such a study day... but i wil try if one comes up! [TEE]
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Heather Speirs | 11-Jun-2010 1:07 pm
I am appalled and shocked at the experience encountered by Beverley during her fathers last days. That is unexcusable and as pointed out in other comments someone should be accountable for it.
I would also highly recommend Beverley that you make a formal complaint to the hospital, but I do understand how your emotional state is hindering this step at present. I would advise though that you do not leave it too long before writing at least a formal letter stating you intend to make a complaint if little else, so you do not run out of time on this. You may be already aware, and I apologise if you are as I have no intention of telling you what you know, but legally you have a year to make the complaint from the time you became aware of the event occurring. In reality most trusts will look back farther than that although with too much time elapsing between the event and making the complaint it can be difficult to obtain records and documents.
I have already made comments on the unacceptable practice covered in a previous article about care of the dying patient regarding the lack of training for students on this topic and I will not repeat them here. Suffice to say that Beverleys experience highlights this unacceptable behaviour which, from the sound of it, is happening in many other places.
I feel very sad and ashamed that the nursing profession, which I have always been proud to be a member of, has sunk to this.
I wish you well Beverley and hope that you soon feel able to address this issue with those who must give you answers and explanations.
Take care of yourself and your family and kindest regards to you all at this awful time.
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