Thursday, 27 December 2012

Liverpool Care Pathway – "Let's Talk About It..."

Dying is a positive life choice. 

Let's talk about it...

The Government published its NHS National End of Life Care Program in 2008 and invited the NCPC to groom the British public into accepting the idea of dying as a positive life choice. Out of this was formed the Dying Matters Coalition. The NCPC has led the Coalition since 2009.

The Department of Health committed to investing 286 million pounds over the two years to 2011 to support implementation of its National End of Life Care Strategy.

"We are investing £286 million over the two years to 2011 to support implementation of the End of Life Care Strategy to help improve end of life care for all adults, regardless of where they live.” (The Telegraph)

This is NHS North East -

A Good Death logo BHFH Logo Small

A Good Death

Time to think
15 November 2010
NHS North East

"Over 55% of the population die in hospital, but our research shows that 90% of us in the North East would choose somewhere else"

"Better Health, Fairer Health" sounds something really like Communitarian Health... 

According to The National End of Life Care Intelligence Network (NEoLCIN): "Home is the first preferred place of death in England and hospice the second preference. Home and hospices together accounted for the preferences of at least 89% of participants in every region in England." 

The result of any survey will depend largely on how you frame the question(s). If you ask anyone where they would prefer to die, they would, in all probability, say "at home, in my own bed, with my family around me." That isn't to say that they would want all curative options thrown out the window, though.

Persuasive symbolism is employed in these ‘end of life’ documents, rushing water, beach-side strolls...

reminiscent of that 'suicide' scene in that memorable TV comedy...

Shall we no longer strive to fight for life?

Do we surrender entirely to Death's bidding?

On the fallacies and follies of ‘diagnosing death’ and ‘assessing quality of life’:

Lady Jane Campbell, Baroness of Surbiton:
"Don't give up on me"
 "If I should ever seek death - there are several times when my progressive condition challenges me - I want to guarantee that you are there supporting my continued life and its value. The last thing I want is for you to give up on me, especially when I need you most." 
When Lady Jane made her plea, a rare thing occurred: the noble lords were moved. 

What mindset is this?

This is thinking with our hearts, but feeling with our heads.

We are in grave danger of having a compassionate society on paper with all the right boxes ticked, but a cold, clinical society, lacking feeling, seeing our loved ones off on the carousel when the Commissioners deem the time has come..

As a recent study showed, the better the care, the better the outcome. The study, published in the Lancet, says –
Doctors concede that there is simply not the money to provide such a level of care for all patients.

But they say hospitals need to improve care for “high risk” patients, such as the very old.

What the NHS is looking for is an affordable outcome.

The Liverpool Care Pathway is all about affordable healthcare and "how best to apportion care in the circumstance of a scarcity of care provision with 'both procedural and substantive insights for developing a just allocation of health care resources' and the allocation of those scarce resources considered or not considered as basic." (Where Civic Republicanism and Deliberative Democracy Meet and The Lancet)

The NHS is in dire financial straits. Both those of this and those of that political ilk each lay the blame at each other's door. Much of this 'blame' must be laid at the door of the PFI's (Private Finance Initiatives) indulged in frivolously and thoughtlessly by the last Labour government.
What is referred to as 'affordable care' — in the States, Obamacare — by implication, suggests affordable to the individual. In practice, this is healthcare that is affordable to the State. It is the rationing of care to the lowest common denominator of availability.

Last week, the NHS Commissioning Board authorised and established the first 34 clinical commissioning groups (CCGs).

From next April the NHS Commissioning Board will oversee the expenditure of the NHS budget and for 2013/14 the sum is £95.6 billion, with £64.7 billion being given to CCGs Clinical Commissioning Boards) to commission healthcare for their local populations.

Commissioning End of Life Care

This document was jointly written by the National Council for Palliative Care and the National End of Life Care Programme -

The next two years provide a unique opportunity 
for new commissioning organisations to position 
themselves in the best clinical and financial position before they begin business as legal entities, for some at least as early as April 2013.

By targeting end of life care, emergent commissioners can place themselves in a strong position for one of the major required areas of improving quality and safety of care; improving patient and carer experience and making care more cost/resource efficient.

Tackling end of life care early can offer a number of significant ‘quick wins’ in improving the quality of care in your locality. People should be supported to be cared for and to die in their preferred place of care, which is usually their home (End of Life Care Strategy 2008). It may also include other community based settings such as a care home or sheltered housing. This means commissioners should ensure there is planned 24/7 provision of community support, including care co-ordination, nursing and symptom control.

End of life care accounts for a high proportion of NHS spending. The Demos think tank has estimated it as at least a fifth of NHS costs and a total of about £20 billion

There is considerable scope for improvement using interventions such as early identification triggers, advance care planning, co-ordination of care and effective multi disciplinary team (MDT) working.

All the pseudo jargon is in place. What this means is 'identifying' the 'dying' as dying, agreeing an ACP (Advance Care Plan), shipping them home, coercing them to sign an ADRT (a legally binding Advance Decision to Refuse Treatment) and, perhaps, an Advance Statement, and supplying a Just-in-case box of anticipatory medicines.

The National End of Life Care Intelligence Network which is part of the The National End of Life Care Programme aims to improve the collection and analysis of information about end of life care services provided by the NHS, social services and the third sector. Areas of research include quality, volume and costs of care provided to adults approaching the end of life. This intelligence will help drive improvements in the quality and productivity of services.

"Quality and productivity" - an odd, cold, and clinical choice of words, used in systems management but not in the field of life and death medicine, surely.

These are 'unfortunate', inappropriate terminologies to use in the circumstance in which they are being used. Greater productivity in getting more 'end of lifers' onto the Pathway?

According to "The Solid Facts: Palliative Care" edited by Elizabeth Davies and Irene J. Higginson:

"The report highlights a myriad of challenges of mainstreaming palliative care: the fact that most common chronic diseases (unlike cancer) have uncertain prognoses, which makes assessment of the need for palliative care difficult..." (Ethos Perspectives)

However, this is the National End of Life Care Programme -

Identifying people approaching the end of life

Although challenging and emotionally demanding, caring for those approaching the end of life is one of the most important and rewarding areas of care.
However, many health and social care staff have had insufficient training in identifying those who are approaching the end of life, in communicating with them or in delivering optimal care.
To address this, a major workforce development initiative is now underway, with particular emphasis on staff for whom end of life care is only one aspect of their work.
This initiative includes the provision of training programmes based on the skills or “competences” required by different staff groups.
There are some simple ways into identifying which of your patients may be entering the last year of life.

Start with the numbers 

  • If about 1% of your practice population will die in the next year, roughly how many should you have on your register?
  • Death usually occurs in old age: in 2008, 62.6% of all women who died were over 80 years and 43.2% of all men; older people are a priority to consider.
  • Cancer only accounts for about 25% of all deaths – it shouldn’t dominate your register.
  • Almost a quarter of all deaths are now in a residential or nursing home. People are typically already frail by the time they move into registered 24-hour care and on average die within 18 months of admission. All your older patients living in registered homes should have the opportunity to express preferences re their preferred place of care and be actively considered for your register.
  • Some of your deaths will be genuinely 'unexpected': around 16% each year are in under 65-year-olds, but in over 65-year-olds only 0.25% are from 'external causes'. Many of these deaths will occur in older people with established disease, with the main causes being cerebro-vascular, acute respiratory and acute myocardial infarction (Predicting death - estimating the proportion that are 'unexpected'; 
  • In more deprived populations, more deaths occur in the younger ages of the older population for both men and women.

Trust your intuition

  • Ask yourself, “Would I be surprised if this person were to die in the next 12 months?” This simple question is accurate seven times out of ten.
  • If not, talk to them and consider registration.  
  • If it would be a surprise to you if they were to live longer than 6-12 months, they are a high priority for talking and planning.

General clinical indictors of deterioration and frailty

The GSF Prognostic Indicator Guidance has details of clinical indicators by condition, but the presence of any of the following should trigger concern when associated with advanced age and / or disease:
  • Limited self-care and interest in life: in bed or a chair more than 50% of their time.
  • Breathless at rest or on minimal exertion (MRC scale 4/5).
  • Progressive weight loss (>10% over last six months).
  • History of recurring or persistent infections and/or pressure ulcers.

In cancer

Metastatic disease should always trigger consideration of supportive care; WHO states that in cancer patients >50% of time in bed or lying down gives a prognosis of fewer than three months survival.

Triggers and opportunities

  • Take the opportunity during routine consultations or visits to ask yourself the ‘surprise’ question and be alert to indicators of frailty and deterioration.
  • You may then want to create an opportunity for a conversation you can plan in advance.
  • A change in personal circumstances, particularly deterioration of a partner, can be a good trigger and opportunity to initiate a conversation.
  • A clinical change, e.g. a new diagnosis, or a hospital visit.
  • Feedback from a colleague, e.g. a district nurse concerned about a persistent pressure ulcer, or a discussion with a consultant in secondary care.

This is pertinent -

NHS encourages frail patients to die at home rather than seek life-saving treatment to save money
The NHS are requesting GPs draw up ‘Death Lists’ of frail patients who are to be encouraged to die at home rather than seek life-saving treatment at hospital, with the objective of saving the government £1.35 billion a year.
The Liberal Democrat Care Minister Norman Lamb has unveiled the NHS Death List ‘tool kit’ that GPs and Social Workers will use to identify patients to be encouraged to die.  The ‘toolkit’ makes clear that a quarter of all hospital beds are occupied by dying people and said that  four in ten have no medical need to be there.  It goes on to state that if each had one less emergency admission into hospital in their last weeks and  months, that would save the NHS £1.35billion a year.
The ‘tool kit’ tells doctors: ‘After several years of falling, the death rate is about to increase again as the baby boomers reach old age. This is a bad situation, which is going to get worse unless we act now.’
The government’s euthanasia plan is being disguised under the euphemism ‘End of Life Care Registers’ which claim to have patients best interests at heart, so they can die in comfort in their homes.
GPs have been asked to select one in every 100 of their patients likely to die over the next 12 months to go on a ‘Death list’. The GPs will not tell their patients or families that they have been selected for the ‘Death List’ but instead will encourage them to make Living Wills that request that nutrition and hydration are withdrawn if they become incapacitated and that they are not resuscitated.
The NHS is distributing Death ‘tool kits’ not only to GPs but also to health and social workers, which provide guidance on how to select patients for the ‘Death Lists.’
It states that ‘approximately  1 per cent of people on a GP’s list [of all patients] will die each year – this equates to an average of 20 deaths a year. Around 70 per cent to 80 per cent of all deaths are likely to benefit from planned end-of-life care.’
It said: ‘Have your local practices identified the 1 per cent of their practice population who may be likely to die in the next year?’
Doctors are told to pick out such patients during routine consultations that show  ‘indicators of frailty and deterioration’ and are told that  ‘older people are a priority  to consider’.
They are also told to use feedback from district nurses or hospital consultants, while patients in care homes should be ‘actively considered for your register’, the advice states.
Information for GPs on what happens to such patients said they would be ‘less likely to be subject to treatments of limited clinical value’.
The Daily Mail reports:
Thousands of patients have already been placed on ‘death registers’ which single them out to be allowed to die in comfort rather than be given life-saving treatment in hospital, it emerged last night.
Nearly 3,000 doctors have promised to draw up a list of patients they believe are likely to die within a year, Department of Health figures showed yesterday.
Some medical professionals went public with their worries yesterday following the Daily Mail’s disclosure of the NHS request to doctors to put one in every 100 of their patients on death lists.

Dr Peter Saunders, of the Christian Medical Fellowship, warned about the risks of drawing up ‘quotas’ for the dying.
‘We all know that doctors’ estimates of patients’ lifespans can be sometimes accurate but sometimes wildly inaccurate,’ he said.
‘A skilled doctor can in the great majority of cases assess when a patient is within a few hours or days of death. However, once we start to talk about weeks or months we know that we can often be right, but equally very badly wrong.’
NHS plans to creat ‘Death Lists’ emerged at the same time that the government rejected calls from the Catholic Church to review the misuse of the Liverpool Care Pathway:
The Archbishop of Southwark wrote to the Secretary of State for Health last month, urging him to launch a “thorough and urgent investigation” into the controversial care pathway.
In a letter dated September 27, Archbishop Peter Smith expressed concern to the Health Secretary Jeremy Hunt about the growing controversy surrounding the Liverpool Care Pathway (LCP).
He wrote: “It does seem to me that a thorough and urgent investigation needs to take place, examining the evidence on which the criticisms that have been made of the LCP rest, so that conclusions can be reached as to whether any corrective action is needed.”
Archbishop Smith added: “If the allegations that are being made can be substantiated, there is serious cause for concern either that the LCP is in some way structurally unsound and needs to be modified or that some doctors and nurses are failing to implement the guidelines as intended.
“Equally, if the allegations are without substance, dying patients and their loved ones are at risk of being caused needless anxiety as a result of which they may well seek to avoid treatment and care from which they would benefit.”
The LCP, which is used by hospitals as a framework to guide medical care of the dying, faced fresh criticism this week after it was reported that an 85-year-old woman had died alone at the Chelsea and Westminster Hospital because medics allegedly did not consult her family before placing her on the pathway.
According to reports, Olive Goom died without family or friends as hospital staff had assured relatives that there was no urgent need to visit, although they had already removed her tubes, which provided food and fluid.
Dr Anthony Cole, the Catholic chairman of the Medical Ethics Alliance, said: “The LCP is inherently hazardous and it is also unnecessary. Excellent end of life care can be delivered without referring to the LCP framework. It is time for an inquiry by the Department of Health into how the LCP is actually operating.”
But a spokeswoman for the Department of Health told The Catholic Herald that it would not be launching an official inquiry into the LCP.
She said: “We would expect all trusts to investigate any reports of abuse or clinical failure and to act accordingly.
“The Liverpool Care Pathway is supported by leading clinicians and charities such as Marie Curie and is NICE [National Institute for Clinical Excellence] recommended. We continue to fully support its proper use as a way of managing a patient’s care with dignity and respect in their last days.”
Jim Dobbin, a Catholic MP and co-chair of the Dying Well All Party Parliamentary Group, which opposes euthanasia and promotes palliative care, has expressed the group’s support for an inquiry.

"Euthanasia occurs when a doctor, not an illness, kills a patient."

" is one thing to withhold or withdraw extraordinary methods of keeping a person alive when it is no longer sensible to do so; it is another thing to do something, or omit to do something for the purpose of terminating a person's life. In the former case, we are simply allowing a person to die. In the latter case, we are killing."
"Even if it is done for what seems a good reason, (e.g. to prevent suffering), and even if it is done with the patient's consent, it is still killing."  (the Nathaniel Centre)

The Michigan Physician Guide to End-of-Life Care

Making the Transition from 
Curative to Palliative Care

Palliation of symptoms is a primary focus of care 
for terminally ill patients. But that does not mean the 
tools of palliative care should be withheld when a cure 
is still possible. Curative and palliative care can go hand 
in hand. Relieving pain and other difficult symptoms 
is a worthwhile goal at any stage; and doing so may 
also help the body respond more effectively to curative 

Avoiding an either/or approach to palliative and 
curative care can also make decision-making easier when
the time comes to accept that cure is no longer the
goal. Comfort care is less likely to be associated with 
abandonment or giving up hope when it has been part of 
the earlier treatment plan. 

But making the decision to end curative treatments 
will still be difficult in many cases. Physicians, patients 
and families naturally resist accepting the imminence of 
death, and medicine’s inability to predict precisely when 
death will occur may add an element of confusion.
Physicians can follow a suggestion from Americans 
for Better Care of the Dying (ABCD) and ask 
themselves, “Would I be surprised if this patient died 
this year?” When death seems a real possibility, it is 
important to make sure that the goals of care are built 
around the wishes and concerns of the patient.

"Water is a basic nutrient of the human body and is critical to human life" - World Health Organization - Water Sanitation and Health (WSH)

Can provision of hydration be considered to be 'medical treatment', then?

This is a blog post in the Talking Point forum of the Alzheimer's Society website -

Call it whichever what you will, this is still euthanasia..

Help! Being asked to consider end-of-life care.

My mother has Alzheimer's and we have been caring for her at home for the last year. Following a stay in hospital about 2 months ago (suspected TIA and fall) she has almost completely stopped eating and has existed mostly on the 2-3 small bottles of Fortijuice that we try to persuade her to take. She's hasn't lost the ability to swallow but just won't eat, even pureed or soft foods. As a result she's lost a lot of weight (now about 6 stone, she was over 9 stone in the summer). Four days ago she was admitted back into hospital and diagnosed with dehydration. She was on a IV drip for a couple of days and then looked much better and sat and talked a little like her usual self. Since being off the drip though she's worsened again (because she won't drink enough) and yesterday was extremely confused and agitated. Also, for the first time, she's refused her medications and wouldn't let the nurses put a drip back in. My wife finally persuaded her to allow a subcutaneous drip to be put in last night.

The doctors are telling us that this pattern of dehydration/ IV re-hydration is likely to keep on being repeated unless there is a willingness on her part to drink more, which seems unlikely. We're now being asked to decide on the level of medical intervention we want the medics to take next time it happens. i.e. do we ask them re-hydrate her again, or is it time to let nature take its course and switch to palliative care?

Part of me thinks its time to let her go and spare her any further treatment. She's said in the past that she doesn't want to live any longer and she wishes God would just take her. On the other hand, when she's re-hydrated and looking better, she doesn't look to be in such bad shape and pulling the plug on her seems cruel.

Has anyone else been in a similar situation and is willing to share the thought processes they went through before arriving at a decision?

If we do opt for palliative care should be opt for her to stay in hospital or would she be better off in a hospice where staff may have more time to care for her?

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