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 -
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?
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
By JOHN STEVENS
PUBLISHED: 00:02, 30 October 2012 | UPDATED: 10:02, 30 October 2012
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
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
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 -
“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!
