NHS: Death at Home

Viscount Craigavon Excerpts

Thursday 8th November 2012 Lords Chamber

[Viscount Craigavon]

I am pleased to support the arguments made by the noble Lord, Lord Warner, and I am grateful to him for giving us the chance of this debate.

This is a very difficult area in which to bring about change or certainty, and one of the themes of what I say will be its complexity and confusion. I hope it is not too unrealistic to say that we should be aiming, perhaps in the long term, for simplicity and honesty. Despite that, I believe considerable progress has been made recently with, among other things, the Liverpool care pathway. We have heard about the scale on which it has been adopted to massively positive effect, but with some few negative instances and, as the Times editorial said recently, some mischievous controversy.

Research shows that poor communication around the LCP is not the norm. National Care of the Dying Audit – Hospitals assessed the LCP and found that 94% of relatives and carers were given a full explanation of it and that healthcare professionals discussed it with 56% of dying people. The LCP is a helpful process to minimise suffering at the end of life.

We should be grateful for what Marie Curie Cancer Care has done in this field, particularly in terms of highlighting the timing and cost of hospital in-patient care versus home care. Even with the clear cost advantage of home care, it is known to be quite difficult to set up all the elements satisfactorily, particularly for a patient or family already under stress. We have been given figures on the shortfall between those wishing to die at home and those actually able to do so: 60% want to, but only 21% achieve their wish. According to the National Audit Office, 40% of end-of-life patients had no medical need to be in hospital. In that respect, the message of this debate should be clear. On the NHS Constitution, while I broadly support the recent firming-up of some wording, it might be providing another level of complexity in shared decision-making.

How patients become active and equal partners with their clinicians about their care is still hard to define in any great detail, but that might be the direction in which we should be going. In complex cases, it may be that consultants might be too frightened of being sued to give advice or take action. We have heard tell of what might be called the Shipman effect seeming to inhibit common sense action. Maybe until recently there was a problem of nurses or health workers giving any response to patients who wanted what you might call a normal conversation or guidance on end-of-life matters. The LCP would seem to open the door to some sensible discussion, but it might be difficult for a passing nurse to know the medical status of the person who is asking questions. On the particular matter of assisted dying, I understand that the Royal College of Nursing has given some guidelines in a booklet, but they are understandably not exhaustive. Similarly the GMC has produced useful written guidelines to treatment and care towards the end of life. In understanding and researching this subject, as I said at the beginning, I am struck by the confusing multiplicity of differing sources of advice in this field. It is encouraging that discussion and dialogue are taking place but, for an individual trying to understand what options are available, choices are indeed complex.

In recording and co-ordinating patients’ wishes, we learn that there is something called advanced decisions, lasting power of attorney, advance statements and advance care planning. We learn that in the primary care field, care can be centred on the gold-standard framework, which sounds desirable. There are electronic palliative care co-ordination systems—recording a patient's wishes, one example of which is Coordinate My Care, which is being apparently implemented in London, and is available in addition to about half of ambulance trusts.

With some of this available, and most highly commendable, it is understandable that research shows that patients' misunderstanding and confusion is widespread, as to what their real choices are. I believe, however, that we are moving along with the NHS Constitution, in the right direction. It may be that in advancing the debate and options in this difficult area, such imperfect language and choices are bound to be complex and confusing. Finally, one of the welcome new additions to the NHS Constitution, apparently from April, is what is called the “duty of candour”; meaning that staff must be open and honest if things go wrong or mistakes are made. I hope that this candour might eventually spill over to a more general honesty in end-of-life discussions about achieving a good death.