Friday, 1 March 2013

Liverpool Care Pathway - When Doctors Lack Capacity

Doctors gave Lady Campbell a year to live when she was born. Seven years ago they put a DNR notice on her medical records, as if her life was not worth living. 

Baroness Campbell of Surbiton, founder of Not Dead Yet, was once told by doctors that they “presumed” she would not want resuscitation if she experienced complications during treatment.

Doctors, whose occupational requirement is to remain objective, actually make subjective  life and death decisions on assumptions based upon their own life experience and expectations. That is a disgrace. How dare they? It is such doctors who, all too readily, embark their patients upon the Pathway.

Along the Pathway - if the doctor/nurse clinician is doing their job, although that is not always the case - observations are made. Again, these are subjective, not objective -

The LCP precludes 'unnecessarily burdensome tests'. The LCP, apparently, provides for review, but -

The Big Question -
Baroness Finlay -  
When somebody looks as if they’re dying and you have done all you can to exclude all reversible causes, then, whatever you do, you must go back and review and review and review.
Dr. Philip Howard –
"One of the problems about the Liverpool Care Pathway is that a decision is made and then, very often, observations are stopped, nursing observations are stopped, simple blood tests are stopped and further interventions are usually stopped – with the exception of oxygen, interestingly enough; that’s continued in 45% of cases. But most other interventions are stopped and very rarely started. When… How can the patient be properly reviewed if you don’t have basic nurse observations, basic blood tests and so on? After three days, em… three quarters of the patients have died, but of those that are still alive, according to the audit that was done of 7,000 patients two years ago, only 20% were reassessed."
No-one answered. There is no proper medical 'review' except one based on subjective observation.

It is these doctors who lack capacity. It is these doctors who would have chosen the pathway of the Quisling rather than the Churchill; whereas Churchill chose to confront his 'black dog' of depression, they would have urged him to succumb.

Such is the mettle of those who, lacking that courage themselves, deny and question that courage in others.

Two brave US astronauts forced to land their lunar module manually when their on-board computer systems, which lacked the capacity of a modern laptop, crashed with an information overload?

"How could they have gone to the Moon?" they ask. 

The bravery of those US astronauts is not exceptional. It is part of the human spirit to struggle to survive and to appreciate and understand life for the precious gift it is and not to be readily surrendered.

Lady Jane Campbell has that determination to live her life to the full. This day and each day of her life, this brave lady has proven just how wrong those doctors were. It is they who lack capacity. This lady is living testimony to the courage of the human spirit.

This is Dea Birkett in The Guardian in 2009 -

And this week in the House of Lords, her powerful speech was credited with squashing an amendment to the coroners and justice bill which would have granted those accompanying people going abroad for assisted suicide immunity from prosecution. Does she feel victorious? "No. I just thought they had to hear the truth."

Her impact has been profound. When she said in the debate, "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," a rare thing occurred: the noble lords were moved.

Would she ever consider ending her life? Just last year, she says, she became dangerously ill with septicemia." I could have stopped. But I looked at my husband's face. I couldn't do that to him." But what about those people who don't have anyone? It's our role, as a caring society, to be that someone, she says.

Towards the end of our time together, she asks if I'll consider writing her autobiography. She wants to do this because she's had such an extraordinary life - expected to die young, living so fully. So what would I write up as her legacy? "I'd like to think I helped people to think again." Adding, as if from nowhere: "Life is sweet."

This is Lady Jane, Baroness Campbell of Surbiton -

“Living with dignity is what we ask for ourselves and for others. We all deserve to achieve it and not to have it taken from us.”

Living with dignity requires us to both take control of our lives and to enable others to do the same by offering and receiving the right support when needed. Life presents many problems, solutions are seldom easy but they are always there when we are willing to look hard enough. This web site is dedicated to making that process a reality.
Baroness Campbell is an active Independent Crossbench Peer, currently working on the Equality Bill and implementation of the Welfare Reform Act, Right to Control section. Jane has been a member of the House of Lords Appointments Commission since 2008. This year she took over the Chair of the All Party Parliamentary Disability Group from Lord Ashley, with Roger Berry MP.
In addition, she is Chair of two expert panels on Welfare Reform and Independent Living for the Government’s Department of Work and Pensions (DWP). 
Jane Campbell has a long history of parliamentary lobbying for disabled people’s civil and human rights. She has been particularly active in creating structures which encourage disabled people from all sectors of society to take control of their lives and influence political and social change. Jane was a Commissioner at the Equality and Human Rights Commission (EHRC) from 2006-2009, and a Commissioner of the Disability Rights Commission (DRC) from its inception in 2000. 
Among her publications, Jane co-authored Disability Politics (with Mike Oliver) in 1996; and contributed a chapter to Disabled People and the Right to Life (ed Luke Clements and Janet Read) in 2008. 
Jane Campbell has been recognised for her work twice in the Queen’s birthday honours (in 2000 with an MBE and again in 2006 when she was made a Dame), and is the recipient of three honorary doctorate degrees.


  1. Shame is a powerful tool used by many healthcare staff. They use it to silence and shame families, particularly families of the elderly. I struggled with this undermining behaviour for the entire time my mother spent in an acute-care hospital. It was disheartening and disturbing. My mother had paid into our system – the Canadian healthcare system – since 1955 and had barely needed it, her health was that good. I felt disgusted by the behaviour of staff members who clearly wanted me to feel we were “asking for too much” when we asked them to save my mother. I've written about shame in healthcare settings here:


    Excellent writing. This blog moved me to tears. At my Dad's funeral my cousin read the poem "Do not go gentle into that goodnight" by the great Welsh poet Dylan Thomas, which expressed perfectly Dad's brave fight to hold on to life which he loved so dearly.

    Many people, when speaking of 'dying with dignity' imply that no death can be dignified other than one under deep sedation. That is not true. There is no greater dignity for me than dying whilst 'raging against the dying of the light'.

    "Do not go gentle into that good night,
    Old age should burn and rave at close of day;
    Rage, rage against the dying of the light.


    And you, my father, there on that sad height,
    Curse, bless, me now with your fierce tears, I pray.
    Do not go gentle into that good night.
    Rage, rage against the dying of the light."