I imagine many people had not heard of the Liverpool Care Pathway before it hit the headlines a couple of weeks ago with allegations of patients denied drugs, liquid and sustenance and families experiencing real distress. Set up in the late 1990s, its intention was to help spread elements of the hospice model of care into other settings: hospitals, care homes and people’s own homes. We all want to know that our loved ones – no matter where they are – will receive dignified and appropriate care in the last hours and days of their life.
Used properly, the Pathway ensures that individuals receive whatever treatments are right for them in their final days. The Liverpool Care Pathway itself is very clear that patients should be involved in decisions about their care if possible, and that carers and families should always be included in the decision-making process.
There is a public statement about the Pathway which you can read online here. The statement sets out what the Pathway is and, crucially, what it is not. It has been signed by more than 20 leading organisations including Age UK, Marie Curie Cancer Care and Macmillan Cancer Support. They would not support any programme that denied dignity to people at the end of their life.
If, as it appears, the Pathway has not been used appropriately then that is a matter for serious concern. I have been deeply troubled by media reports of cases where families have not been properly involved, and by the distressing stories of people who have contacted me directly about this issue to relate their own personal experiences. The National End of Life Care Programme will be looking into complaints about end of life care and I will be meeting with doctors and patient groups to hear firsthand about their experiences and to talk about how to ensure that end of life care is as good as it can be.
The Liverpool Care Pathway is not about ending life, but about supporting the delivery of excellent end of life care. I will continue to support its appropriate use. However, I will not shy away from challenging where this has not been the case.
One step to help address the concerns that have been raised is contained in the draft updated NHS Constitution. We have launched a consultation on this today. For the first time it reinforces the importance of patients and their loved ones being involved in decisions about end of life care.
This is a hugely emotive and hugely important issue. We need to get it right, for the best interests of patients and for the peace of mind of their families.
* Norman Lamb MP is Liberal Democrat Minister of State at the Department of Health