Health: End of Life

Baroness Meacher Excerpts

Thursday 12th December 2013 Lords Chamber

[Baroness Meacher (CB)]

My Lords, I, too, applaud the noble Lord, Lord Dubs, for moving today’s Motion. I strongly support his position that every individual should have the right to decide how much suffering they must bear. Of course, we acknowledge that right for those who want to continue until the end point and take any suffering that life throws at them. We just ask for the same right for those of us who wish to take advantage of it. Patient autonomy is a well established principle in medical ethics, enshrined in professional guidance. How can we justify removing the right of choice—the autonomy—at the end of life when people most need it? I simply do not understand that. To respond to the noble Baroness, Lady Nicholson, we are not here talking about euthanasia, yet most of her contribution was devoted to that.

I shall not repeat the very eloquent points made by many noble Lords but will instead focus my comments on two other end-of-life issues, particularly the right of choice. One is the right not to be resuscitated when life has become unbearable and the second is the right to decide where we die. When a person has capacity, there is no excuse at all for not doing what they wish. Yet, routinely, patients are resuscitated against their wishes and do not die in the place of their choice. The Mental Capacity Act 2005 created advance directives that should ensure that patients’ wishes are known and followed should they lose capacity. However, even when a patient completes an advance directive and a copy is included in their medical records, too often it proves useless because we do not have in place procedures that ensure as far as possible that emergency services and hospital staff know that an advance directive exists, let alone what it says. We need a national policy that governs exactly how and where advance directives are documented. It sounds a trivial point, yet there is really no use in having a document hidden away in some GP’s surgery when the ambulance men turn up and have to make decisions.

One suggestion is a register of advance directives similar to the organ donor register. Of course, it should be electronic for easy access. That would greatly increase the likelihood that emergency services have the information they need when they need it. Will the Minister consider whether NICE should publish guidance on the detail of these advance directive procedures, such as how they should be recorded and stored, and what procedures the emergency services should follow to make sure that they access that crucial information? I understand that, shortly, electronic medical records should include advance directives. Again, these must be user-friendly and accessible quickly. Will ambulance men have access quickly to that information? Also, will the Minister propose to the CQC that it gives priority to inspecting these procedures? In mental health services, the CQC gives terrific focus and priority to how documentation is preserved, kept and stored in relation to detentions in hospital. If the CQC gave anything like that priority to advance directives, the care of elderly people towards the end of life could be radically enhanced.

Now I turn to the issue of where patients die—I will do this rather quickly. The issues are raised very clearly in the Macmillan Cancer Support briefing. The fact is that 73% of cancer patients want to die at home but only 29% are able to do so. There are all sorts of reasons for this, such as a lack of free social care at the end of life. Can the Minister say a little about that? There is also the lack of 24/7 care, most particularly nursing care. Again, what does NHS England plan to do about that? Thirdly, there is the need for the early identification of people at the end of life. Is the Minister able to provide some statistics about the projected numbers of domiciliary nurses available over the next five years relative to last year? I hope that the Minister can provide some reassurance to this House.