Sunday, 16 December 2012

Liverpool Care Pathway - The Palliative-Medical Complex

When the State intervenes and starts throwing public money around, lucrative gain calls, the corruptible are corrupted and independence is lost. The charities become tools to promote State policy and State policy becomes a tool of vested interests, indistinguishable, to procure mutual gain. There is a complicity which threatens veracity and integrity.

 This is from the Foreword of "Who Cares? How State Funding and Political Activism Change Charity" by Nick Seddon, published 2007 -
There are confidential meetings and confidential meetings. If a meeting is held under Chatham House rules, those attending can say that the meeting took place and report on what was said, although nothing can be attributed to a named person. If a meeting is private, then nothing said at it can be reported at all. If a meeting is held under Privy Council rules, then those attending must say, if asked, that they are unable to confirm if the meeting took place or not.

Of all the meetings I have attended, under different levels of confidentiality, there is one that stands out in my mind for the paranoia, on the part of those attending, regarding the reporting of anything that was said. This meeting was concerned with the relationship between the state and the voluntary sector, and representatives of different charities were speaking of problems they had experienced. The point was made, not once but over and over again, that if any of these comments were repeated outside the meeting, charities could lose their state funding and in some cases would close.

I had been invited to the meeting because I had recently written a book called The Corrosion of Charity which argued that there were dangers for the voluntary sector if charities got too close to the government. The response to my book from charity representatives had been largely dismissive: there was no cause for concern, the partnership was fruitful and productive, and no one but a hard‐line ideologue could deny that charities benefited from state funding because it enabled them to do so much more good work.

It therefore came as something of a surprise to hear people at this meeting recounting horror stories that were worse than anything I had used in the book. I still have reservations about repeating them ten years later, after the dire warnings, but to give a fairly mild and non‐identifiable example: one organisation which received funding from a government department had to send an advance copy of its newsletter as a condition of the grant. A message was received in response to one such newsletter that, if it went out, there would be no more funding, as it contained criticism of a government bill before parliament.

The intimate relationship between the state and the voluntary sector has now become incestuous. No longer does the government content itself with funding charities as a means of controlling them: it awards charitable status to its own statutory bodies in order to get the best of all worlds—state funding paid for through taxation; donations from the public (remember the Wishing Well Appeal of Great Ormond Street—an NHS hospital?); funding from Lottery boards; plus the kudos that goes with charitable status.

The Charity Commission has very strict rules about what organisations with charitable status may and may not do. They must be constituted for purposes that are wholly charitable and they must not be formed to carry out the wishes and policies of statutory authorities. In chapter 6 Nick Seddon gives a disedifying account of the way in which the Charity Commissioners have tied themselves in verbal knots to allow local authorities to turn their leisure centres into charities, in spite of the fact that such ‘charities’ just happen to have exactly the same aims as the local authority and carry out their functions in exactly the same way.

So much for the bad news. The really bad news is that it is about to get worse. The Charities Act 2006 has altered the legal definition of charitable purposes in a way that awards substantial powers to the Charity Commissioners, who are political appointees, to decide on what does or does not constitute charity.
Big charities have become big businesses engaged in what donors might otherwise consider an actual misdirection of their charitable donations. The 'incestuous' has become the interdependent and symbiotic.

The NCPC (National Council for Palliative Care) actually advertise for sale their publications on the NHS (National-socialist Health Service) National End of Life Care Program website. So what...?

 So what! It is often difficult to see where the long arm of the State ends and the cupped hand of charitable receipts begins. They are virtually part and part of the same corporate superstructure.

 According to The Telegraph,

Department of Health officials have insisted that the payments [CQUIN] are to ensure that patients are “treated with dignity” as they die - and many doctors argue the widespread adoption of the LCP has led to improved care for the dying.
But Mr Lamb said on Monday night that he wanted to ensure the payments were working as they should, and not providing a perverse incentive to put patients on the pathway.He said of the review: "It is clear that everyone wants their loved ones' final hours of life to be as pain free and dignified as possible, and the Liverpool Care Pathway is an important part of achieving this aim.“However as we have seen, there have been too many cases where patients were put on the pathway without a proper explanation or their families being involved. This is simply unacceptable.”Whoever is chosen to chair the process will also oversee three separate reviews of end-of-life care - by the Association of Palliative Medicine, the Dying Matters group and the National End of Life Programme.

The CQUIN payments are to roll out the LCP. This is stated in DOH literature (e.g. The DOH End of Life Care Strategy Third Annual Report, page 57). 

Mr. Lamb is demonstrably prejudiced in favour of LCP - "the Liverpool Care pathway is an important part of achieving this aim." [dying well]. 

The Association of Palliative Medicine, the Dying Matters group and the National End of Life Programme are engaged in three 'separate' reviews. 

The Dying Matters Coalition [group] was set up by the NCPC in 2009. The Coalition is supported by Professor Sir Mike Richards, National Director for Cancer and End of Life Care, and by the NCPC's Board of Trustees. 

The NCPC, itself in a cosy relationship with the NHS, DOH and, by implication, Mr. Lamb who is not against the LCP, is therefore linked to this review.

The DOH is instigatory in rolling out the LCP. By association and by its support of the Pathway; by historic involvement in the Hospice movement, the NCPC is also complicit in this. 

Independent, far-reaching...?  There is a complicity of involvement that nulls any prospect of that. 

Mr Lamb said: "Today I have committed to appoint an independent chair to review how end of life care is working and oversee the reviews into the Liverpool Care Pathway. (The Telegraph) 

Really...? 

These comments have been added to these pages:
Have you seen that the new head of the charities commission has warned against charities becoming too political and a junior partner in the welfare state?

"In William Shawcross' first speech to charity sector at Acevo's annual conference, he said that "charities should not become junior partners in the welfare state", stressing that the independence of the sector is vital.

"Charities which get state grants or contracts from government must be independent and focused on their mission," he warned.

"Independence is about making decisions only on the basis of the best interests of the charity and its beneficiaries. Not the interests of funders - including government. Charities operate in a complex environment and are in ever fiercer competition for funding and contracts to deliver services. This competition is not a problem in and of itself. It may help drive innovation and keep charity trustees on their toes. But I wonder whether this development also places great strain on trustees to make decisions on behalf of their charities. These decision must be independent and reflect the interests of the charity only - not the interest of funders."

He suggested that some charities risk becoming too dependent on the state, adding that most members of the public would say a charity was an organisation funded by private donations not public funds.

Shawcross referred to a recent speech by the chief executive of the Charity Commission, Sam Younger, who warned that the charity brand was becoming "diluted". He said there needed to be a debate on whether the register of charities should make clearer what an organisation does and how it is funded.

In his speech, Shawcross also defended charities' right to campaign, saying such activity had a long tradition in the UK."
  1. I wonder what view Mr Shawcross would take of a leading light of a palliative Care charity giving evidence to a parliamentary Select Committee in favour of palliative care and against euthanasia - thereby influencing government policy making?

    And of the extent to which those in the multi-billion pound palliative care industry have become partners of the EU?

    I also wonder what his view would be of the following:

    Sep 2010 - Nov 2010

    Luther Pendragon provided UK public affairs consultancy services to National Council for Palliative Care. [3]

    Luther Pendragon are a successful public affairs consultancy and lobbying firm.

    http://whoslobbying.com/uk/national_council_for_palliative_care
  1. The Worldwide Palliative Care Alliance

    This seems to be based in UK, it produces a leaflet which includes a guide to Advocacy and lobbying policy makers:

    "PART 1 Introduction to Advocacy
    1.1 Definition
    1.2 Models of Advocacy
    1.3 Potential barriers to change when advocating on palliative care issues
    1.4 Why and when to advocate
    1.5 Targets for Advocacy
    1.6 Who should do advocacy
    1.7 Alliances and networks
    1.8 An Advocacy Framework
    1.9 Four factors are crucial to effective advocacy
    PART 2 Advocacy Tools
    2.1 Directly Influencing Policy.
    2.1.1 Analysing Legislation or Policies
    2.1.2.Position Papers
    2.1.3. Working from Inside the System
    2.1.4 Lobbying
    2.2 Monitoring"

    "[Advocacy] Is a process which can lead to

    change through influence

    Is a way of influencing public policy
    through information and communication

    Can act as a voice of the voiceless

    Is a way of directing decision-makers
    towards a solution

    Can be used to inform influential
    groups and raise their awareness of
    specific issues.

    Advocacy can achieve:

    Increased resources for hospice and
    palliative care and build the case for
    palliative care where it is not yet
    recognised or in existence

    Changes in restrictive policies and
    practices within countries e.g. for
    morphine use

    An increase in palliative care
    organisation’s profile amongst the
    public, the donor community and
    influential groups

    Broadly there are 3 aspects to
    advocacy:

    Lobbying – influencing through direct,
    private communications with decision
    makers

    Campaigning – speaking publicly on
    an issue with a view to generating a
    response from the wider public.
    Educating –building understanding of
    issues to provide a more receptive
    context for change.

    Context for Advocacy

    This document inevitably focuses on how
    to approach advocacy on palliative care
    issues in democratic countries. Most, if
    not all, of the advocacy tools detailed are
    effective because either:

    Policy makers are influenced by public
    opinion.

    Governments are primarily concerned
    with the rights of their citizens.

    People have an influence on the
    media."
  2. From the National Council for Palliative Care's website:

    "Benefits"

    "By subscribing to NCPC you will support our work to research, lobby and campaign on end of life issues across health and social care. Together, we provide a strong voice on behalf of people providing and using end of life care services everywhere. The health and social care landscape is changing, with major reforms to the NHS and the way in which local authorities will work. NCPC will remain at the forefront of discussions. We will continue to help and support health and social care professionals and together with the Dying Matters Coalition we will ensure that good end of life care becomes a public priority too."
It is become problematic as to who is controlling whom. Issues of mutual interest continue to coincide such that there is almost a unity of policy and decision-making. There is a parallel power at work, working alongside the elected power.

Those in the position of propagating these Pathways are now placed in the position of adjudicating on them. There are problems of collusion and self-interest here. The public purse is involved on either side and is being dipped into for promotion of a mutual self-interest.

President Dwight D. Eisenhower's now memorable farewell address, known for its warnings about the growing power of a "military-industrial complex," springs to mind. This growing, misplaced power, however, is in the medical arena rather than the military.

Ike warned us that this misplaced power exists and will persist. In the arena of medical research, as reported here, like names continue to crop up. There are possible problems of self-citation in validation of expressed claims. Whether there are further agendas in place it remains to be discovered.

There is more to be looked into and investigated here. Much more. It is most worrying.
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5 comments:

  1. Harlow blogger18 December 2012 at 13:51

    On the subject of the huge power that the medical profession have and how it can be abused, you might be interested in the following, written by a disabled college professor in the US.

    "Vulnerability in the Medical System

    Unfortunately, many people with disabilities feel particularly vulnerable in medical settings. Medical classification, emphasizing abnormality and deficiency, permeates the public's understanding of life with disability. Doctors and other Healthcare professionals have served as the primary authorities in public policy affecting us, as well as in our personal life histories. Whether we remember them as kindly paternal or frighteningly austere, medical experts have diagnosed our problems, predicted our potential, and prescribed measures to alter our bodies and our futures. That is a lot of power.

    Now, managed care has inserted issues of social utility into this dynamic. Although managed care policies may decentralize some of the authority formerly vested solely in the physician, they have failed to transfer more control to people with disabilities who require substantial assistance to live. In an atmosphere where words like "extraordinary" and even "futile" get attached to the supports we use each day, we feel caught between the power of the medical expert to decide what we need, and the power of the healthcare funding system to judge our needs as excessive.

    For example, in August 2005, the St. Louis Post-Dispatch reported that Missouri Medicaid would no longer pay for such resources as ventilators, feeding tubes, crutches, and wheelchair batteries needed by an estimated 340,000 adult Missourians with disabilities. These services are deemed "optional" under Medicaid rules, and the Missouri legislature opted to cut them. Although an appeals process existed for disabled citizens to plead their case as "exceptions", the newspaper reported, the state failed to mention this option in letters sent to Medicaid recipients informing them of the cuts.

    In this context, disabled people's distrust of the healthcare system has only intensified, impelling them toward hard decisions. Several years ago, I talked with a disabled man who has an important job, many friends, and an impressive list of accomplishments. He told me emphatically that he would never again enter a hospital no matter how critically ill he becomes. I hardly knew how to interpret such a declaration. I found it drastic and disturbing. I wondered if he was severely depressed. Before long, however, I heard other disabled persons take up this theme. Most are individuals commonly described as "severely" disabled. They appear and function in ways judged extraordinary. Some use ventilators and most require technological and human assistance to accomplish the tasks of daily living. In the context of their extensive physical impairments, some observers might read their avoidance of hospitalization as a rational advance directive. But that would be a misinterpretation. Rather than forego life support, they have resolved to protect their lives by bunkering themselves in familiar surroundings until the end. The medical system, they say, is a dangerous place for them.

    My perceptions have changed dramatically since then. In the last four years, I have been hospitalized twice for respiratory problems and once for surgery. I am still traumatized by those experiences.

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  2. Harlow blogger18 December 2012 at 13:56

    Continuation of post above

    "PERSONAL REFLECTIONS ON VULNERABILITY AND DISABILITY"

    "As background, I should mention that I contracted polio the year before the Salk vaccine was approved for public distribution. Since then, I have spent most of my life using a wheelchair for mobility and dealing with respiratory problems. Fifteen years ago, I developed severe sleep apnea and began using a positive pressure mechanical ventilator noninvasively via nasal mask each night. Initially, I was hesitant to accept this remedy for my restless nights, shortness of breath, and soaring blood pressure. But I was fortunate. I was in touch with a community of people with neuromuscular disorders. Many used ventilators, some part time and others full time. They were wonderful role models in that they claimed the right to live fully but in nonnormative ways. In fact, they incorporated assistive technology and human assistance into their daily routines so matter-of-factly, so gracefully, that these supports became a "normal," almost trivial, part of their lives. These friends understood that I had been conditioned by popular cultural images to equate ventilator use with dying, suffering, entrapment. The ubiquitous phrase "hooked up to a machine" haunted me. My friends deprogrammed me and helped me view ventilators as the benign, useful devices they are. They gave me information and encouragement. They introduced me to doctors who were familiar with people like us, and the doctors provided additional information and encouragement. Together, this network allowed me to see that, in the greater scheme of things, noninvasive ventilator use is not a big deal. Their reasonable stance saved my life.

    A very different reception greeted me when I was hospitalized with my first bout of pneumonia four years ago. Arriving with my own ventilator, I was immediately treated as if I were a hopeless case. Hospital staff came in and out of my room, inspecting my ventilator, sometimes riddling with its controls without explanation and without addressing me personally in any way. One nurse threw back my blanket, lifted my hospital gown, and shouted into the hallway, "Why isn't she catheterized?" Apparently, she thought anyone with limited mobility also had impaired sensation and lack of bladder control, neither of which is true for most people who have had polio. Sometimes, in self-defence, I tried actively to engage staff in conversation, to signal my conscious humanity before they did something demeaning to me. Although this strategy helped in some cases, a few of the conversations that ensued were more unnerving than being ignored. In one instance, a pulmonary specialist seemed startled to find me capable of intelligent conversation. A look of pity swept across his face. He patted my shoulder and said he would do his best to help me get through this, but.... He did not complete the sentence and, by that point, I did not want to hear its conclusion. As it turned out, my chest X-ray and other tests revealed that my condition actually was not critical. The doctor who had been taken off guard by my intelligence was equally surprised by my viability."

    ReplyDelete
  3. Harlow blogger18 December 2012 at 13:59

    Continuation of above post

    "Other conversations I had with healthcare professionals during that hospitalization and subsequent ones conveyed their disturbing lack of familiarity with living long-term with extensive impairments, as well as scepticism about the value of such a life. Most expressed surprise that I had a job, let alone a job as a professor who could teach people things. They were also surprised to learn that I lived in my own home, was married, and had young grandchildren. On their own, they could not conceive of my life being ordinary or lived outside of a healthcare facility. As we discussed these facts of my existence, I noticed that theirs eyes would dart to my ventilator and back again repeatedly. They were trying to fit both my physical condition and the fullness of my world into their narrow conception of life with a disability. Most could not reconcile the two domains.

    Although my needs for physical assistance in activities of daily living (ADL) sometimes elicited pity and other negative reactions (such as irritation from overworked nursing staff over the extra time it took me to eat, bathe, transfer in and out of bed, and use the bathroom), it was my ventilator that prompted the most comment during my hospitalizations. A sweet young medical resident sympathetically exclaimed that it "must be awful to be dependent on that." I told her, in my best upbeat conversational tone, that, actually, it was not. Rather, it was quite comfortable and helpful, and, furthermore, I did not think of myself as dependent on it but saw myself as simply using it. Her fixed expression told me that this last point about my agency was lost on her. Nor did she seem persuaded that the ventilator was not an instrument of torture. She left my room with her prejudgments intact.

    In addition to sympathy, conversations with health professionals about my ventilator revealed a frightening lack of knowledge. Many physicians and nurses thought that my ventilator pumped oxygen into my lungs, when, in fact, it just gives me breaths of room air. Actually, polio specialists have warned me that breathing substantial amounts of oxygen can possibly be dangerous for me, decreasing my respiratory drive. My primary problem is underventilation. If I am adequately ventilated, my oxygen saturations are fine. Yet, during each of my last three hospitalizations, professionals have tried to give me oxygen "to help me out." Some respiratory therapists thought my ventilator was a CPAP device, a machine that uses a constant stream of air to keep breathing passages open. Others thought that my ventilator was set to deliver breaths only when I triggered them by my own breathing. Neither is the case. I have central apnea as well as the obstructive type. To avoid hypoventilation, my ventilator pushes air into my lungs at regular intervals. Although I can breathe well during the day, I let the ventilator breathe for me at night. When I tried to correct misperceptions about my respiratory set-up, some therapists insisted they knew best and argued with me about how my ventilator functioned. One therapist allowed that I might be right about the current set up, but that the ventilator settings should be changed to withhold breaths unless I triggered them first. This therapist's response stands out in my mind because I realized, part way through the conversation, that he was underestimating my respiratory insufficiency because he thought I was too "with it" to need full cycled ventilation. Again, it was difficult for his imagination to encompass both facts at the same time-that I was a fully engaged, competent agent and that I needed to use a ventilator each night to stay alive."

    ReplyDelete
  4. Harlow blogger18 December 2012 at 14:03

    Continuation of post above.

    ALIENATION, DEVALUATION, AND BURDENSOMENESS

    I offer this level of detail about my personal experiences to flesh out what vulnerability means for many people with disabilities in healthcare settings. Several factors construct our vulnerability. One is the "alien" factor. When people with disabilities enter the medical system, we often feel like unexpected aliens whom no one understands. Our efforts to communicate who we are and what we need are unsuccessful, and we experience a disquieting sense of isolation. During all three of my recent hospitalizations, I met only a couple of hospital professionals who had any familiarity with people who live with disability. They were the only ones who seemed to expect me to have a life.

    A related factor concerns judgments about quality of life. As medical and public discourse expands about "death with dignity," it seems increasingly permissible to question whether some forms of living are too burdensome, too hopeless, or too unaesthetic to merit support.

    This rush to judgment about "how awful" it is to have incurable impairments, in a society with decreasing tolerance for human limitations and imperfections in general, sends a message that our lives are untenable. Media stories of nonsentient or suffering people helplessly tethered to tubes and machines are the horror tales of our age. Although no one pities the scuba diver or astronaut who uses a breathing device, ventilators used quite comfortably by people with respiratory insufficiency are viewed as the definitive mark of a subhuman existence. If only Nike or Apple would launch an advertising campaign to rehabilitate that image!"


    ReplyDelete
  5. Harlow blogger18 December 2012 at 14:06

    I should have provided a link to the above article, which is entitled: Social Construction of Disabled People'e Vulnerability. The link is given below

    http://www.umanitoba.ca/outreach/vpnet/articles/DisabilityConstructedVulnerability-SociallyConsciousPalliativeCare.rtf

    ReplyDelete

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