Liverpool Care Pathway

Jim Shannon Excerpts

Tuesday 8th January 2013 Westminster Hall

[Sir Tony Baldry (Banbury) (Con)]

When I first entered the House of Commons some 30 years ago, I became the founder secretary of the all-party hospice support group, and Jack Ashley was the founder chairman. I am glad to say that that group has now become the all-party parliamentary group on hospice and palliative care. During those 30 years, an enormous amount of work has been done on enhancing palliative care in hospitals. We are fortunate in this country in having an outstanding hospice movement. Part of the purpose of the Liverpool care pathway was to ensure that the good practice of palliative care, which had been developed in hospices, could be spread to other health care settings, such as hospitals and care homes. Extending it to people’s own homes was also important because if people are asked where they would like to die, most say at home. The reality for each one of us is that we will die.

The Liverpool care pathway requires staff to ensure that all decisions to continue or to stop treatment are taken in the best interests of each patient, and emphasises that patients should be involved in decisions about their care and that carers and families should always be included in the decision-making process. An evaluation in 2011 showed that in 94% of cases, there had been such involvement. The idea of documenting conversations, which the hon. Member for West Lancashire (Rosie Cooper) mentioned, is sensible. In our own professional lives, and, indeed, as Members of Parliament, we all know that people, especially family members, do not always take on board news that may be distressing. Often it is quite a shock to be told that a loved one is near to death. Very often, the instinctive reaction is to want to ensure that life can be preserved for as long as possible, but we also have a duty of care to ensure that in people’s last days and hours they die well and painlessly and with as much dignity as possible.

I was very struck by two contributions in the Library briefing. One was a brave article by a specialist registrar who herself is a terminally ill cancer patient. Of the Liverpool care pathway, she said:

“It prompts us to have open discussions with relatives, and, if possible, patients, to stop unnecessary medication, to discontinue futile medical interventions, and to shift our focus of care to symptom-control, comfort and dignity… Most patients on the LCP, in my experience, are too poorly to eat or drink, but where a patient is alert enough to swallow we certainly continue to offer them food and fluids in my hospital. They are not ‘starved to death’. The problem with intravenous fluids is that cannulae need to be inserted to administer them. This is painful, often very difficult and sometimes near impossible in patients who have been in hospital for a number of weeks.”

[Jim Shannon (Strangford) (DUP)]

Although the hon. Gentleman makes a pertinent point, surely the issue must also be about those people who are not convinced about the system and who are suspicious and worried about what they have been told. There are people who have been denied fluids, and also drink and food. Does the hon. Gentleman think that there should be some protection in the system for such families so that they can feel assured that there is care? The point I am trying to make is that this should be about care and not killing, but many of us suspect that there is more emphasis on the killing than on the care.

[Sir Tony Baldry]

Very few of us can have the confidence of Cardinal Basil Hume who, in his book “The Mystery of the Cross”, observed:

“Death is a formidable foe until we learn to make it a friend. Death is to be feared if we do not learn to welcome it. Death is the ultimate absurdity if we do not see it as fulfilment. Death haunts us when viewed as a journey into nothingness rather than a pilgrimage to a place where true happiness is found . . . Death is not the end of the road, but a gateway to a better place.”

Few of us, irrespective of our faith, have that clear courage and confidence, but we all recognise that we will die. There is nothing about 21st century medicine that is going to keep the hon. Gentleman or myself, or any of us, alive for ever. Death, and the process of death, can be extremely painful, and it is our collective duty and responsibility to try to ensure that people die as painlessly as possible and with as much dignity as possible.

I can assure the hon. Gentleman that people do not go into the medical profession to kill. My father became a doctor and my mother a nurse to ensure that they could give people the best quality of care. Although the press have published a number of stories about relatives who have expressed concern about how the local care pathway has been used, there is no systemic evidence to suggest that the policy is being abused. A consensus statement was published last year by several non-governmental organisations and charities, all of which are much respected in this House, supporting the Liverpool care pathway. They include Age UK, the Alzheimer’s Society, the British Heart Foundation, Help the Hospices, Macmillan Cancer Support, Marie Curie Cancer Care, the Royal College of General Practitioners, the Royal College of Nursing, the Multiple Sclerosis Society and the Royal College of Physicians.

[Jim Shannon]

rose—

[Sir Tony Baldry]

No, I will not give way because others want to speak. This is an important issue, but we must ensure that we put it in perspective. If we are not careful, all the work that has been done over the past 30 years by a whole number of organisations, including those that I have just mentioned, to enhance and improve palliative care could be undone. Sadly, people die every day; that is the reality. It is not a failure of the NHS that people die. It is only a failure of the NHS if people do not die well. We need to ensure that all improvements, whether they be to records or to communication with patients and their families, are undertaken, but nothing should deter us from trying to ensure that everyone in this country gets the best possible end of life and the best possible palliative care.

--- Later in debate ---

[Jim Shannon]

I congratulate the hon. Lady on the passionate way in which she has dealt with this issue. Does she agree that it is important that those who work in the Liverpool pathway are highly skilled? If such care is left in the hands of those who are less skilled, there is a possibility that what could be termed voluntary euthanasia will take place. Does she agree that only highly skilled people should be involved in the Liverpool care pathway?

[Fiona Bruce]

I do, and this is where training is so important. Without the proper application of the Liverpool care pathway, death can be hastened, and that is not the intent of the pathway. Occasionally, even with correct application, it can be the unintended consequence—for example, through the use of narcotics to alleviate severe discomfort and facilitate a more peaceful passing.

I wholeheartedly welcome the Minister’s decision to hold an independent public inquiry into the LCP. I have met him, and I thank him for his open-minded, calm and reasoned approach and for the fact that he has had ears to hear concerns about the LCP. Without wishing to prejudge the terms of the inquiry, may I make the following suggestions for it to consider?

First, a number of pressures might subvert the proper implementation of the LCP, and I am grateful to Professor David Albert Jones of Oxford, who is an authority on this topic, for highlighting them. He says they are:

“the subjective character of judgments about how soon someone is going to die…the fact that the LCP may be initiated by people who are not senior clinicians familiar with the individual patient’s case and have not consulted with palliative care physicians… the influence of managerial pressures to reduce bed occupancy …reluctance to face the difficulties of continuing care of certain difficult patients…the euthanasiast outlook of some clinicians…the possibility of doctors or nurses regarding the LCP as a set of ‘tick boxes’…rather than assessing the needs of the patient…Other NHS organizational/staffing procedures or constraints”.

He adds:

“Research shows that care of the dying is poorest in the hospital setting”

in contrast to care in hospices, which I believe we all admire.

I also urge that the inquiry consider the following measures: that no patient should be placed on the LCP unless they are imminently, irreversibly and inevitably dying, which I understand to mean perhaps within 36 hours; no one should be placed on the LCP without its being discussed with a designated relative or carer; every patient placed on the LCP must be continuously monitored and reviewed by a multi-disciplinary team; documentation must be simplified and standardised, so that those implementing the LCP can easily follow the guidelines; training and supervision should be mandatory, as well as standardised and improved; non-clinical priorities in the use of the pathway must be eradicated and every patient must be treated solely according to their needs; payment for such care must be reconsidered; and the communication to relatives should be substantially improved.

I believe that, if it is well used, the LCP can improve standards of end-of-life care, especially in hospitals. It should promote better palliative care and support the kind of good death that we would all wish for ourselves and our loved ones. I sincerely hope that the independent inquiry will be a major step in facilitating that.