Wednesday, 31 October 2012

Liverpool Care Pathway – Is There No End To The Tally?

Here is The Telegraph 

TV chef's anger over mother's 'end-of-life' pathway

A TELEVISION chef has told how she stepped in after hearing that her elderly mother was on an end-of-life care pathway despite staging a dramatic recovery.
TV chef's anger over mother's 'end-of-life' pathway
Rustie Lee and her mother Eugenie Edwards Photo: BPM MEDIA
5:15PM GMT 31 Oct 2012

Rustie Lee refused permission for her mother Eugenie Edwards, 87, to be placed on the Supportive Care Pathway (SCP) – similar to the controversial Liverpool Care Pathway – at Birmingham City Hospital after suffering heart and kidney failure.
She was expected to live only 48 hours but recovered enough to be discharged from hospital only six days later.
The television star said that her mother was already showing signs of improvement and was able to eat by the time she was told that doctors had placed her on the pathway.
The SCP, which is used in hospitals in Birmingham, involves “rationalising” the amount of medication given to patients judged to be approaching the end of their lives. It does not involve withdrawing food or fluids.
“When I saw my mum in hospital she did seem poorly, but not as if she was about to pass away,” said Lee.
“In fact, she didn't look close to that.
"Yet we were told she had 24 to 48 hours to live and was about to be put on this pathway.
“I was only told about the plan when I went over to see the nurses to ask for painkillers for my mum.
“I was so shocked to be told she was on some pathway. I told the doctor this was not going to happen.”
A spokeswoman for the trust said: “Mrs Edwards was very ill when she was admitted to our Medical Assessment Unit.
“She was put on the Supportive Care Pathway and this was explained to her family.
“Our records show that she was offered food to eat at this time.
“When we became aware of the family’s concerns regarding the pathway, she was taken off at their request.
“We are sorry to hear that Mrs Edwards’ family were unhappy with aspects of her care.
“Our aim is to address concerns when they happen, however, if the family feel they would like more clarification we are more than happy for them to contact us to discuss this further.”

Liverpool Care Pathway - No Gerrymandering!

Thanks go, once again, to Baroness Knight of Collingtree! The Baroness has raised LCP in debate in the House previously 

Liverpool Care Pathway – And Plausible Denial

The Baroness is listed to speak once more on Monday -

Parliament UK

Monday 5 November at 2.30pm

*Baroness Knight of Collingtree to ask Her Majesty’s Government what procedure will be adopted in carrying out the proposed NHS inquiry into the Liverpool Care Pathway.

We hope and we pray that she will be rewarded by her efforts.

WE hope and we pray that she will not be thwarted at every turn as have we.

It is not just the procedure of the proposed inquiry that needs to be looked at; it is the matter of who is to conduct it. Would you ask the fox to investigate the raid on the chicken house? An independent inquiry is called for.

Such an inquiry should be awarded a broader remit to look into the intrusion and spread of the CQUIN payments system across all areas of care. The Mail continues to draw attention to the CQUIN system in the hospital setting but, as has been reported in these pages, this now extends into District Nursing. CQUIN is, no doubt, also involved in the spread of the GP death lists and the use of LCP in St. Mungo's and elsewhere.

An independent and thorough investigation into the intrusion of the CQUIN payments across all care services is demanded now!

We commented previously that, despite her good efforts, the Baroness was
bamboozled with flaccid, blatant denial of what is patently – and well-known to be by its victims - the truth!
We hope and we pray that she will not be so demeaned and dismissed in her attempts to debate the conduct of the proposed inquiry.

From experience, they will pout verbatim the textbook response! 

A letter is reproduced below, sent in response by a representative to her petitioner. What appears in this letter - and this is really quite typical - is the sort of flaccid and limp response the Lady Baroness may expect to encounter in her debate. That is quite clear. At a glance, much of what the representative has written has been 'lifted' word for word from LCP resource documents and DOH statements concerning LCP.

And these people represent us? Really? Really!

The letter follows -

Elizabeth Truss MP
Member of Parliament for South West Norfolk
The Limes
32 Bridge Street, Thetford, Norfolk IP24 3AG
01842 757345

Dear Denise

Thank you for your email, I am extremely sorry to read of the death of your father earlier in the year. My office has no record of you calling either the Westminster office or the constituency office.  You highlight concerns about the The Liverpool Care Pathway (LCP). LCP is an established and respected tool that provides clinicians with an evidence-based framework to guide the delivery of high quality care for people in the last days or hours of their life, to ensure that they die with dignity and respect and minimum distress.

The LCP requires senior doctors and nurses involved in the patient’s care to agree that death is very likely to be imminent and that being placed on the LCP would reduce patient distress, discomfort and pain. That decision should involve the patient if possible, and family members if not. A clinician should always choose the best approach to care for an individual patient, whether curative, palliative, or a mixture of both. The LCP is just one option for managing this care. To ensure it is used properly, the LCP emphasises the importance of staff receiving appropriate training and support in its use as well as accessing relevant end of life care training and education programmes.

However ministers recognise that some people who have been on the LCP have received poor care. The LCP is not of itself a guarantor of the best quality care. It has consistently been made clear in the guidance for implementation of the LCP, or similar tools, that they are in no way a replacement for clinical judgement, and should not be treated as a simple tick box exercise. Rather, the LCP is a useful framework to guide the delivery of care, complementing the skill and expertise of the practitioner using it.

Best wishes

Elizabeth Truss MP

The concluding paragraph implies an acceptance that second-rate care has occurred, does occur, but that this is not an issue and may be tolerated. If it was an issue, the honourable member of Her Majesty's Parliament would surely raise it in response to her petitioner's letter.

This is the very real worry, that LCP may not be questioned in itself and that anything untoward in its connection occurs only through the manner of its application, not the actual application of the LCP itself. In other words, it is the driver, not the vehicle.

And that is the very real worry, that this shall be the finding and the outcome of all these ongoing investigations, both official and journalistic.

Liverpool Care Pathway – A Torturous Road

BBC Radio Nottingham has featured a distressing and harrowing story on the LCP. A transcript is here –

Liverpool Care Pathway – A Heartrending Tale

Philip Charlesworth, 82, the gentleman mentioned in the BBC Radio Nottingham broadcast who fell victim to the LCP, is also mentioned in the following News Derby article.

The following News Derby article headlines with a report from East Midlands Today.

31 October 2012 Last updated at 13:19

Liverpool Care Pathway death prompts 'torture' claim

Care given to a terminally ill woman at a Derby hospital has been compared to "torture" by her family.

Paul Ghuman
Paul Ghuman said his mother was subjected to a
"lingering death" in hospital
Pritnam Kaur Ghuman died last week after a stroke but her son said it was cruel to deny her food and water.
In Nottinghamshire, the family of Philip Charlesworth claim he was put on the same end of life programme without their knowledge.
Both the Royal Derby and King's Mill Hospitals said the Liverpool Care Pathway is designed to limit distress.
The Liverpool Care Pathway (LCP) is a set of guidelines which prompts regular reviews of the treatment given to terminally ill patients.
Sick animals
While this can mean the withdrawal of some intervention, medical professionals insist it is never used to hasten death.
Philip Charlesworth
Philip Charlesworth went into King's Mill hospital
suffering from suspected pneumonia
But some families claim it has lead to food and water being withheld and relatives could have lived for far longer.

Paul Ghuman, who lives in Derby, said he was shocked at the care given to his mother: "To me it is a form of torture. It is a lingering death and you are increasing the torture by denying them the food and drink and drips and medication.
"We don't leave animals which are sick just to die without medication, we don't just leave them to die of their own causes, so why do that to humans?"
'Natural death'
Maelie Swanwick, a consultant in palliative care at Royal Derby Hospital, said: "We are trying to minimise medical intrusion.
"So for patients who perhaps would have preferred to die at home but for whatever reason find themselves dying in hospital, we want to make it a natural death and the best possible death for that person and their family."
Philip Charlesworth, 82, from near Southwell, went into King's Mill hospital suffering from suspected pneumonia, in January.
His daughter Denise Charlesworth-Smith described the LCP as "legalised euthanasia" and insisted they were never consulted about its use.
"There are four criteria for putting someone on the Liverpool Care Pathway which are; that they are bedridden, they are comatose, they can't have a conversation with somebody and they can't swallow to take tablets or liquid," she said.
She added her father was not bedridden or comatose and could hold a conversation and swallow.
"You put your trust in doctors who you think know best but now I feel as if I murdered him because I might have done more," she said.
Bosses at the Sherwood Forest NHS Hospitals Trust who run King's Mill said the family had not raised their concerns directly but they would be happy to meet with them.

Tuesday, 30 October 2012

Liverpool Care Pathway – A Heartrending Tale

BBC Radio Nottingham features a distressing and harrowing story on the LCP.
Scroll forward to 1 hours and 55 minutes, then to 2 hours and 7 minutes

Frances Finn sits in for Andy Whittaker

Full transcription follows:

Frances Finn  1.55
Now, have you heard of something called the Liverpool Care plan? From what we can make of it at BBC Radio Nottingham, it’s a way of looking after a patient who is going to die that really accelerates their death. Eh, water and food can be withdrawn. You’re going to hear from one Nottinghamshire woman who is horrified to find out that her father was put on this plan even though she believes he wasn’t terminally ill. More on this to come -

News follows………………………..

Frances Finn  2.07
A family is criticising Kings Mill Hospital, claiming their father was put on a programme designed to end his life without their consent. Phillip Charlesworth's family says the 83 year-old had been getting better but was still put on what's called the Liverpool care pathway. Now, the idea behind the Pathway is to ease the suffering of the terminally ill patient in their final days. And it can involve upping pain-killers and withdrawing food and drink, effectively, accelerating their death. Phillip's daughter is Denise and can tell you more about it. Good morning, Denise. 

Good morning Frances. My dad was 82, actually, yeah…

Frances Finn 
82, okay. He was admitted to hospital, but you don’t think he was terminally ill.

No, he definitely was not terminally ill. He was admitted with shortage of breath. His doctor was concerned that he had pneumonia. And as such he was being treated for pneumonia in the hospital.

Frances Finn 
Now, this Care Pathway, as I said, it can accelerate a patient’s death and, I think in the case of the terminally ill, you can understand that, for the patient, that can be the best way forward. You know, why elongate the suffering of an individual? But, you had no idea this was on the cards until you began to notice a few signs, didn’t you? What did you notice?                          

Well, we noticed that, em, is the common denominator seems to be people are moved into a side room, there’s no actual monitors on them, they have a mask on them and they have no food and no water. And basically, any sign of movement and the nursing staff come in and up their sedatives and up the morphine. So, basically, eh, it’s almost gassing them.

Frances Finn 
Were you asked if you wanted him to be put on the Pathway?

Not at all, no. No, we, we had absolutely no idea what the Liverpool Care Pathway was until all this came out in the press very recently and it was something that was mentioned in passing like just mentioning, you know, there’s a storm in America. That’s about all we knew about it.

Frances Finn 
And you found out for sure after the coroner made his report, is that right?

Yes, my brother was able to examine the, eh, medical certificate at the crematorium before my father’s funeral and he annotated what was on there because we queried something when we went to the bereathement centre, em and, basically we just wanted to find out what it was that they said dad had died of. At the time, you don’t sort of take things in. So, my brother had made extensive and copious notes about what it actually said on there and the bottom line was that he was put on Liverpool Care Pathway. Well, I couldn’t believe it. I thought that’s tantamount to murder.

Frances Finn 
Because you don’t believe he would have died?

I don’t believe he was that ill that it needed anything like that to actually, em, kill him off, basically, no. My dad, two hours before he died, was trying to get out of bed to go to the bathroom.

Frances Finn 
And you say that he was wanting water, he was asking for water?

Yes, when we were actually there with him on the Wednesday, we weren’t allowed to give him a cup of tea or anything like that. We had these  little doily sponge things to give to him em…and er, when we actually     

Frances Finn 
To wipe the water round the inside of his mouth? (repeats)

Yes. That’s right, yeah. And basically we wetted these things for him and it was like seeing a newborn baby sucking on a bottle. He was gasping for water, or fluids. It was awful to see. I mean, now I know what it’s all about, if I’d known as much as I do now, you know, then, I probably would have created absolute mayhem and, at the moment, I just feel that something more could have been done and I just feel terrible, I really do.
Frances Finn 
I believe that the rules are that accompany the pathway are that if a patient does start to show signs of thirst, movement as you say, that is a situation that demands a review. You know, if that patient on the right plan for their care…

Exactly right

Frances Finn 
They were ignoring those signs?

Exactly right. There are four criteria they should actuall adhering to. One is that they’re comatose. The other one is that they can’t swallow tablets. The other one is that they can’t speak. And also that they can’t get out of bed. Well, you tell me which one my dad was because there’s supposed to be at least two of those which are tantamount to putting people on the pathway. And I have to say, he was none of those. If a man was trying to get out of his bed two hours beforehand then, certainly, he was not bedridden, and certainly he was swallowing, and, you know, whatever… it was just a catalogue of disasters to be quite honest.

Frances Finn 
Denise, the way you describe him just sucking on that little sponge, that must be now so heartbreaking for you. At the time, you thought you were doing your best but, now looking back, how do you feel?

I feel like I murdered him. (pause) It’s… That’s how I feel. I feel so… I’m so… I’m going to get upset, now. I actually feel that there should have been more that we could have done… (sobs) it’s awful to think that my dad won’t be here anymore and I struggle with it every day to try and think, you know, what could I have done. But at the time, you think, you know, you’re putting your trust in a doctor who knows best. And so, therefore, you don’t criticise what they’re doing; you think they’re doing the best for people who are in hospitals. And I have to say, talk about losing faith with the medical profession, having read so many disgusting, absolutely horrific stories about what’s happened to other people’s relatives, I’m sorry, but this, this has to stop and I’ve set up my own Facebook page for people to contact me on. And there are three other Facebook pages which I am also a member of and hearing people on a daily basis coming forward and telling me their stories about what’s been happening is, actually, disgusting. And I’ve actually turned round and said we should contact our MPs, although, having said that, I’ve tried to make contact with two MPs who are pro the er this Dignitas thing. One is Norman Lamb who is actually in Norfolk, one of my MPs, and the other one is Anna Soubry, who is one of your MPs, but as we’re not in their area, neither of them are interested, so how do you actually, em, contact them to tell them that, actually, what’s happening with the Liverpool Care Pathway is actually being abused because…?  People… are making money

Frances Finn 
Well I know that… There is an investigation being carried out into this pathway itself, as a care strategy if you like. We have asked Kings Mill Hospital to comment on what’s happened, Denise. They haven’t been able to provide somebody to speak about it but I will just read you what the statement has been from the Sherwood Forest NHS Hospitals Trust. It says the Liverpool Care Pathway enables healthcare professionals to focus on care in the last hours or days of life. It provides high quality care tailored to the patient’s individual needs when their death is expected. Using the pathway in any environment requires regular assessment and involves regular reflection, challenge, senor decision making, clinical skill in the best interests of the patient. The family of Mr. Charlesworth  hasn’t raised their concerns directly with us but we would be happy to meet with them. Just finally, Denise, will you meet with them?

I definitely will because I want to know why they thought they could play god with my father.

Frances Finn 
I’m so sorry to hear of what you’ve been through, Denise, and as I said there is an investigation now as other patients in other parts of the country have raised their concerns about the pathway. Thankyou for talking to us.

Thankyou, Frances, for listening to me.

Liverpool Care Pathway – CQUIN Quotas

Ask me, Do I want a dignified death? and I will answer, No!

I will reply, I want a dignified life, as a right, for myself and for every individual, from life's beginnings until life's very end. If that means easing pain along the way, then that means easing pain; it does not mean hastening death along some death 'pathway'.

Whatever our status, even the humble may stand proud and walk tall.

The MailOnline stands firm and continues to give their pages over to those without a voice as a platform from which to speak.

The report which follows further on tells another tale of those who know better than we what's best for us and step in and take charge because they are empowered to do so and relatives and next of kin are denied any role and must stand by and watch and speak up at their peril or say nothing thinking that these who know better than we what's best for us would not, could not act or behave in a manner in any way untoward, surely, surely not!

I apologise for that desultory Philippic. Although, meandering and unmanageable, Philippic it was not quite...

There are patterns in all these reports which we, as a family, recognise. This is an absolute disgrace. It is, indeed, a scandal which must end now!

An independent and thorough investigation into the intrusion of the CQUIN payments across all care services is demanded now!

This is -

Liverpool Care Pathway – Intrusion By Stealth

The Nursing Times has published a discussion document on Nursing Practice and District Nursing -
Quality indicators to measure end-of-life care
Author Ben Bowers is professional lead community nursing and Queen’s Nurse, Hertfordshire Community Trust. Abstract Bowers B (2012) Quality indicators to measure end-of-life care. Nursing Times; 108: 34/35, 21-22.This article gives examples of how to use quality indicators to demonstrate and improve effectiveness in supporting people with their end-of-life care needs. 
District nurses deliver a range of nursing care to adults in their own homes. However, practitioners have not effectively demonstrated the value of this care to primary care commissioners (Queen’s Nursing Institute, 2009). As a result, district nursing numbers continue to decline at a time when there is increasing demand from an ageing population for more care to be provided at home (Royal College of Nursing, 2012). If district nursing services are to receive the resources they need, practitioners must measure and communicate the impact of their care through “quality indicators” agreed with commissioners.
In other words, District Nursing, as a profession, must demonstrate that it is implementing the end-of-life care pathways (such as LCP) required by the DOH in order to take advantage of the CQUIN payment incentives which will pay for the resources district nursing services so desperately need.

Box 1. End-Of-Life Quality Indicators 
Outcome indicator
● The percentage of patients on an end-of-life care pathway who die in their preferred place of care 
Process indicators
● Patients are identified and placed on a recognised pathway (Gold Standards Framework or Liverpool Care Pathway)
● District nurses discuss and record the needs of those approaching the end of life at dedicated multidisciplinary team meetings, preferably monthly but quarterly at a minimum
● The team has a register of all patients for whom they are providing end-of-life care, which includes key information such as preferred place of care
● Symptoms are as well controlled as possible
● Newly requested syringe pumps should be set up within four hours after the decision has been made
● When a syringe pump is set up, out-of-hours services are notified by the end of the shift
● Carers have been offered information and advice on practical issues
● Carers felt supported
Source: Davies et al (2011); Department of Health (2011; 2009b); Bowers et al (2010) 
“Patients are identified and placed on a recognised pathway (Gold Standards Framework or Liverpool Care Pathway)”

How else is the Profession to demonstrate implementation of the end-of-life care pathways (such as LCP) except by incepting some sort of quota system in order that targets are met to qualify for CQUIN payments?

This post continues after the MailOnline report.

This is the MailOnline -

MailOnline - news, sport, celebrity, science and health stories

District nurse 'put 90-year-old father on Liverpool Care Pathway in his own HOME without consulting his family'

  • Thomas James died at home after he was given sedatives by the nurse
  • She allegedly claimed that the drug was just to calm him, and reassured his family that it would not make him sleepy


A district nurse put an elderly man on the controversial Liverpool Care Pathway at his home without any consultation with his family, it was claimed last night.

Thomas James, 90, had cancer but insisted he was not ready to die until after his granddaughter's wedding.

But he passed away at home after he was given sedatives by the nurse who allegedly claimed that the drug was just to calm him, and reassured his family that it would not make him sleepy.

Debbie Croston from Braintree, Essex, with her father Thomas James, who died on the Liverpool Care Pathway at his home
Debbie Croston from Braintree, Essex, with her father Thomas James, who died on the
Liverpool Care Pathway at his home

The next day they were unable to wake him to give him food or drink and he fell into a diabetic coma.

His daughter demanded that he was taken off the drug, but he died ten days later, on October 8, from pneumonia.
Last night Mr James's family told how he was determined to go to the wedding and had picked out a red tie to match the bridesmaids' dresses just days before he died.
    The former trombone maker and soldier in the Royal Engineers, who lived near Braintree in Essex, had stomach cancer and diabetes, but was still active and going to the shops on his mobility scooter in the week before he was put on the Pathway.

    His family have made a formal complaint to their NHS Trust. They believe that he was put on the Pathway and given an end-of-life drug without proper informed consultation and that as a result his death was hastened.

    Ironically, the family had chosen to have him treated at home as they believed doctors had tried to put him on the Pathway in hospital two years earlier after he had a leg amputated.

    (File picture) Controversial: The LCP is intended to ease the final hours of patients who are close to death and to spare them the suffering associated with invasive treatment
    (File picture) Controversial: The LCP is intended to ease the final hours of patients who 
    are close to death and to spare them the suffering associated with invasive treatment

    The Liverpool Care Pathway, which can involve the sedation of patients and the withdrawal of foods and fluids, is designed to ease the suffering of dying patients in their final hours.

    But the Mail has highlighted several cases where relatives have not been consulted about the use of the procedure or where patients have turned out not be terminally ill and have gone on to live for up to two years after being taken off the Pathway.

    Mr Thomas's daughter Debbie Croston, 50, said: 'He had a reason to live as my daughter is getting married at Christmas and that was why all he wanted was to survive until December 29.

    'It's all he mentioned. We went out and bought his tie just before he died. He felt rough but he said, “I'm going to be here whatever happens”. He was determined to be there for her and it was snatched away.'

    Mr James was receiving care from district nurses at his home and was being treated with antibiotics for a chest infection.

    'They need to start actually caring for people. Everybody makes out we're such a caring society, but we're not.'
    Mrs Croston

    During one visit a nurse asked to speak to him alone and got him to sign a DNR (do not resuscitate) form. She then suggested that she give him an extra drug.

    Mrs Croston said: 'She said, “I've thought of something else that will make him more comfortable”. I told her that he's not uncomfortable, he's just sitting in the kitchen sleeping, he is 90. But she said, “No, I think I'm going to put this drug Midazolam in”.

    'I asked what it was and she gave us a thing to read and we saw it was a sedative and told her we didn't want him to be more tired. But she said, “No, I can absolutely assure you it's not a sedative, all it's going to do is keep him calm at the dose we use”.

    'Not once did they say to me about the Liverpool Care Pathway, that this was it.

    'That night he had his  dinner and ate some sausages and went to bed.

    'Next morning I rang his carer to see how he was and she said that they were struggling to wake him up. He was almost gone, you could not wake him up, he was just slipping into a coma.'

    Mrs Croston ordered the nurses to take him off the Midazolam and he roused so they could give him tablets and dextrose mixed with fromage frais.

    But after nurses found out that the family were feeding him, they told them to stop and one wrote in his notes: 'Up against the wall with this family'. When the family refused to let nurses administer the drug again, they say one told them: 'To be honest, it's my decision, not yours'.

    Mr James was no longer given any sedatives, but his family say it was too late. Mrs Croston said: 'He never recovered properly, his lungs filled up with fluid as he could no longer get out of bed and he died of pneumonia.'

    Mrs Croston, who owns a hotels business with her husband, said: 'Midazolam is an end-of-life drug. Once people have it they don't come back from it, and they were so insistent on giving it.

    'They just wanted to finish him off as he was a drain on resources, I suppose.

    'I'm convinced he would have made the wedding. I'm not saying he would have been well afterwards, he could have gone the next week, but there's no way he was ready to go on that Friday when they put that stuff in his arm.' 

    Mr James's family had wanted him to be treated at home after they claim doctors tried to put him on the Liverpool Care Pathway two years earlier after he had his leg amputated when he was put on morphine and had his drip taken away.

    Mrs Croston said: 'You think we're safe at home. We'd fought tooth and nail not for him to go to hospital because you don't know if he'd come out. Yet they got rid of him at home.

    'People say he was incredibly old, and he was, but that does not give them the right to decide when their life is finished.

    'Once their last breath has gone out of their body that's it, you can't bring them back. If I'd known it was a natural end, it was his time to go, it would have been easier to accept.

    'They need to start actually caring for people. Everybody makes out we're such a caring society, but we're not.'

    Jane Hentley, director of nursing at Central Essex Community Services, said: 'We would like to offer our condolences to the family at this sad time.

    'Central Essex Community Services is taking this case very seriously and we are conducting a thorough investigation. We are unable to comment further.'

    The post continues here -

    Liverpool Care Pathway – Intrusion By Stealth

    “District nurses discuss and record the needs of those approaching the end of life at dedicated multidisciplinary team meetings, preferably monthly but quarterly at a minimum”
    It is a statistical certainty that every person in their elder years is 'approaching the end of life'. Old age is a 'terminal condition'. If a person of elder years falls seriously ill, however, that does not mean that they are terminally ill; it means only that they require that much more care and attention to improve or to maintain their condition.
    The team has a register of all patients for whom they are providing end-of-life care, which includes key information such as preferred place of care”
     They have your card marked.
    "Symptoms are as well controlled as possible 
    "Newly requested syringe pumps should be set up within four hours after the decision has been made

    "When a syringe pump is set up, out-of-hours services are notified by the end of the shift " 
    Pre-emptive care and acting on the assumptions of LCP guidelines-
    If the symptom is present, prescribe.
    If the symptom is not present, prescribe in any case -
    "..ensuring anticipatory drugs are available at home (Bowers et al, 2010)."
    "Carers have been offered information and advice on practical issues 
    Carers felt supported"
     Carers have been advised that their loved one has been 'diagnosed' as dying and that the protocols of the end-of-life pathway are being adhered to. In practice, this policy is paid only lip-service and patient and carer are kept in ignorance.
    Measuring quality
    Community services have started to demonstrate quality to commissioners through agreed patient safety indicators and patient satisfaction questionnaires.

    Two examples are reducing the percentage of people who develop a pressure ulcer or a catheter-associated infection. By focusing on these issues, practitioners have become aware of how to apply good practice to prevent adverse incidents. However, reducing the frequency of adverse events does not directly measure whether patients received the right care to achieve optimum outcomes (Jull and Griffiths, 2010). 
    Patient satisfaction is a vital measure of quality. Current questionnaires tend to ask patients whether they are happy with practitioners’ mannerisms and care. These are important in identifying whether people have been treated with respect, dignity and felt involved in decisions. However, generic questionnaires often do not identify whether nurses have supported what matters most to patients receiving care at home.

    There is certainly more work to be done in agreeing quality indicators that have value to commissioners, patients and practitioners. There are common features that help when looking for indicators.

    The QNI (2011) found the public want district nurses to be caring, kind and skilled to coordinate and meet their care needs. Commissioners want care to be clinically effective and measurable, cost-effective and meaningful for patients.

    While practitioners understand the need for greater efficiency, they want to deliver effective care focused on meeting patients’ holistic needs (Davies et al, 2011). Quality indicators can encompass these shared values when they are jointly devised by clinicians, patient representatives and commissioners (Raleigh and Foot, 2010).

    In regard to end-of-life care pathways, the patient is no longer around to complete the patient satisfaction questionnaire. The only measure, therefore, may be: Did the patient depart this world in their preferred place of care?
    "While carer questionnaires can be used after patients have died, research shows that feedback can be influenced by feelings of grief, regrets and past experiences unrelated to end-of-life care support"
    The predictable certainty of the care pathway, evidenced to have been religiously adhered to, ensures that - whatever the perception may be or may have been - guidelines are demonstrated to have been followed and boxes have been ticked.

    And the quotas will be met!