End of Life Care

Baroness Meacher Excerpts

Tuesday 14th March 2017 Lords Chamber

[Baroness Meacher (CB)]

My Lords, I am most grateful to my noble friend Lady Finlay for initiating this debate. I declare my interest as chair of Dignity in Dying, the sister organisation of Compassion in Dying, which is a slightly separate charity. Ensuring that people have genuine, meaningful choice at the end of life is central to improving care. Over the past decades, much of our NHS has shifted significantly from a somewhat paternalistic model of care, where the doctor is assumed to know best, to one where the patient’s wishes are paramount. This trend was strikingly evident in mental health care, where I worked for about 25 years. End-of-life care is lagging behind far too often.

Ben Gummer MP, Parliamentary Under-Secretary of State for Care Quality, in his foreword to the government response to the review of end-of-life care pointed out that,

“our care of dying people is … variable, haphazard and at times shockingly poor”.

The Government’s response also says:

“We know that too many people are not involved enough in decisions about their care … care is not sufficiently focused on the person’s individual needs and preferences”.


That seems profoundly true.

Dying people must be aware of their legal right to plan ahead for their own care and, crucially, their right to exercise their choice step by step along the way. Polling shows the enormous job that lies ahead to achieve those objectives. According to a YouGov poll in 2014, 82% of us have strong views about end-of-life care, yet only 4% of us have made an advance decision or appointed a lasting power of attorney. The Macmillan briefing points out that 73% of people with cancer would prefer to die at home, yet only one-third actually do so. Healthcare professionals and providers still too often impose their own views about what is best for their patients. My principles for end-of-life care come very much from the five years I spent chairing a clinical ethics committee. The principles of compassion and patient choice dominated then and, for me, they dominate today. A very important tool for patients and their end-of-life clinicians is, of course, the advance care planning process. One key message from this debate is surely the importance of commissioners funding the promotion and implementation of that process.

What are the benefits of advance care planning? Why does it really matter? Research shows that, when people are able to make informed decisions about their own treatment and care, those patients are far more satisfied. A 2015 YouGov poll revealed that when a patient’s wishes are not documented, 53% are likely to receive treatment they do not actually want—a complete waste of money. Academic research shows the potential of patient choice to produce significant financial savings to the NHS, a reduction in unplanned hospital admissions and the length of time spent in hospital in the last 12 months of life when, of course, most hospital care takes place. A real culture change towards patient choice, which involves planning ahead, is not only better for individuals but absolutely vital if the NHS is to cope with the financial pressures ahead. It is disappointing that only a minority of sustainability and transformation plans have laid out clear plans for addressing improvements at the end of life. Can the Minister assure the House that NHS England will insist that plans which fail to address end-of-life care—and preparation for advance care planning in particular—will be revised?

It is encouraging that the Government asked for advance decision-making to be central to the remit of the National Mental Capacity Forum. A recent study by the charity Compassion in Dying again emphasised the importance and benefits of making advance decisions. The report received widespread public support. Patients need information if they are to make informed decisions. Compassion in Dying recently commissioned qualitative research interviews with dying people. The results are worrying. One respondent—we will call her Sally—had ovarian cancer. She said:

“There are so many people out there who are certainly not getting the information they need from the professionals they’re dealing with, not about benefits, not about prognosis, not about symptoms, not about support, not about end of life care or the choices. Nothing. Nothing, unless you bring the subject up”.


The Government’s response to the choice review pledged that people would be able to have honest discussions about their needs and preferences. Clearly, this is often not happening. Commissioners need to ensure that doctors are trained to have difficult conversations with patients, and that doctors understand that patient choice is not a luxury add-on to good care but central to it.