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Health: End-of-life Care

Volume 734: debated on Monday 16 January 2012


Asked By

To ask Her Majesty’s Government what measures are in place to inform people of the steps they need to take to ensure their wishes regarding medical treatment at the end of life are respected if they lose capacity.

My Lords, the Department of Health makes annual resources available to the NHS and local authorities to implement the Mental Capacity Act. These resources are for them to inform and support people who may have lost or be about to lose capacity about their wishes regarding treatment and care. The department’s end-of-life care strategy provides further guidance in this area.

I thank the Minister for that helpful reply. Advance directives are now well established in this country, and it is accepted that patients’ wishes in this respect should be followed wherever possible. What systems does the NHS use to record the existence of advance directives and to ensure that they are accessible to doctors as well as available to them so that patients’ wishes can be respected? Where patients have made an advance decision in this regard, what evidence does the Department of Health have on the degree of adherence to their end-of-life medical preferences?

My Lords, the department does not hold information about the degree of adherence to advance decisions, but I can tell the noble Baroness that there are a number of systems available in the NHS that enable patients to record their preferences for care at the end of life and the choices that they would like to make, including saying where, if possible, they want to be when they die. We know that there is widespread use in the NHS of the Preferred Priorities for Care tool that supports decisions about preferences.

We have also supported the piloting of electronic palliative care co-ordination systems to ensure that a person’s wishes and preferences for care are taken into account and to improve communication between the professions and organisations. The Information Standards Board is currently considering a proposed standard setting out a core data set to support the implementation of those systems.

My Lords, what evidence do the Government have regarding the number of elderly people in the population who have taken advantage, as I have, of signing an advance directive and lodging it with my general practitioner to specify what forms of treatment I would and would not wish to have if I became incompetent? What is the present position of the legal right of an individual to specify while competent a proxy who could fulfil a similar role if the individual in turn became incompetent?

Unfortunately, my Lords, we do not hold information about how many advance decisions have been made out or pursued; those statistics are not collected centrally. However, I am aware that lasting powers of attorney, which the noble Lord will know came in under the Mental Capacity Act, are growing in popularity and number. The numbers are rising, although I do not have those statistics in my brief. We are encouraged by the fact that people are now aware that they can delegate to a loved one—a family friend or whoever—to take decisions in their best interests should they lose capacity later on.

Given that people on the whole now know that they have a right to decide when treatment can be withdrawn, and to ask for that to happen, what advice is in place for medical staff who, faced with such a decision, still hesitate to carry out the wishes for fear of prosecution?

My Lords, the end-of-life care strategy that we are pursuing, published by the previous Government, highlighted the need for a cultural shift in attitude and behaviour related to end-of-life care within the health and social care workforce. The noble Baroness is quite right that this is an issue. In partnership with the national end-of-life care programme, we have taken forward a number of initiatives to develop the workforce’s understanding. We have commissioned the development of an e-learning package, which is turning out to be popular, that includes advance care planning and communication skills. Core competences and principles for end-of-life care have been developed, and a number of pilots have been taken forward in that area. A document called Talking About End of Life Care: Right Conversations, Right People, Right Time has been published and was completed early last year. There are a number of initiatives in this area.

Does my noble friend agree that the new NHS commissioning arrangements are such that they give an opportunity for advance directives to be collected and collated in a coherent way by general practitioners? Will he also confirm that, whatever advance directives are given, the need to provide comfort to patients remains a duty on clinicians?

My Lords, in considering better enhanced provision for end-of-life care for those who have lost capacity, will the Minister note that our opinions and attitudes change with the perspective of time? A young boy may consider that upon reaching the age of 60 or 70, life would not be worth living. I think that a 60 year-old—and most of us here—would differ from that opinion. It is very important that advance directives—living wills—should be considered and should be important. However, they should be tempered with proper questioning and proper care.

I agree fully with the noble Lord. Advance care planning is not a one-time issue, it is an ongoing process. It requires regular reviews of a patient’s wishes and assessments of their needs. Support, training and education for staff in understanding that, and taking forward care planning, are being made available through the end-of-life care strategy. People’s wishes and needs change throughout life, and that is to be expected.