Real Lives: Real Choices

Ethics & Decision-Making in Palliative Care

4th July 2006, London

This event, held on the 4th of July, was the latest in a series of conferences organised jointly by the Ethics Committees of NCPC and the Association of Palliative Medicine (APM). The day focused on three key challenging and highly relevant areas:

• The Mental Capacity Act (MCA)
• Withholding and Withdrawing Treatment: Consent and Capacity
• Resource Allocation

All sessions were held in plenary, to enable maximum participation from the delegates. Both the expert speakers’ presentations and the discussions that followed generated widespread contributions from different professional and service user perspectives, as well as key learning points for future practice.

In the first session, Simon Chapman, NCPC’s Ethics Advisor explained the key points of the MCA and its implications both for patients and those making decisions on their behalf. Linda McEnhill, co-ordinator of the National Network for Palliative Care of People with Learning Disabilities, followed with a discussion focusing on the health experiences of people with learning difficulties, using case studies of bad practice to highlight the need for more attention in this area. Key points raised by the speakers and audience included:

• Capacity must be assessed on a decision by decision basis. Wherever possible, patients should first and foremost be supported to make their own decisions. Practitioners will need to develop communication skills to enable them to support people with impaired capacity so that they can make decisions for themselves.

• The MCA means that written statements by patients about the preferences for future care and treatment must be taken into account when assessing their best interests, should they subsequently lose capacity. This gives legal weight to advance care planning.

• Under the MCA there is a duty to consult next of kin about a patient’s best interests if that is practicable. A patient can go further, and give a Lasting Power of Attorney to a family member, which covers making decisions about his/her welfare as well as their property. Patients should ensure they have a strong trusting relationship with anybody they give an LPA to. Like everybody else, the holder of an LPA will have to make decisions based on the patient’s best interests.

• Patients may not have the capacity to consent to or refuse treatment, but they may still possess the capacity to refuse to have family members involved in the decision making process.

• The MCA will have a huge impact on health and social care. All commissioners and providers of care will need to gain a comprehensive understanding of the MCA in order to understand the legal, practical and ethical framework within which they will have to operate when the law changes on 1 April 2007.

In the second session Dr Andrew Thorns (Pilgrim’s Hospice) and Dr Roger Worthington (GMC – standards & ethics) presented three case studies that were then made open for discussion from the floor. These highlighted decision-making involving the withdrawal or with-holding of fluids, CPR, and ventilation. Common to all three case studies was the need to engage as completely as possible with the patient and family to understand the motivations that might lie behind their approaches to care and treatment. Good communication between care professionals, patients and family is vital.

The day ended with a plenary on prioritisation and resource allocation. Ursula Gallagher used her experience as Director of Quality, Clinical Governance & Clinical Practice at Ealing PCT as a case study to explain the hard reality of the choices faced by service commissioners. Dr. Jim Gilbert (Exeter & District Hospice) followed with a thought-provoking presentation focusing on the need for a creative tension between equality and fairness in resource allocation and the use of ethical reasoning to achieve this. The session explored the tension between using resources efficiently across a whole community, and promoting and honouring individual patient choice. Both speakers agreed that “every resource decision is a clinical decision and every clinical decision is a resource decision”.

NCPC’s and the APM’s Ethics Committees will be publishing updated guidance on Artificial Nutrition and Hydration in the Autumn. NCPC is also organising two further conferences on the Mental Capacity Act with Help the Hospices. These will be held on 28 November (Bristol) and 11 January (London). For further details, please click here.

If you would like to know more about the MCA, NCPC has published Guidance on the Mental Capacity Act 2005 which provides a commentary on the MCA and its impact on palliative care services together with advice about how to prepare for its implementation. The book is available to buy at a cost of £15. To order a copy, or for more information click here. Alternatively contact Alexa Gainsbury on 020 7697 1520 or publications@ncpc.org.uk

Speakers' Presentations:

Programme of the day   (17KB)

Simon Chapman    (43KB)

Linda McEnhill   (60KB)

Roger Worthington & Andrew Thorns (75KB)

Handout 1 (64KB) Handout 2 (18KB) by Roger Worthington & Andrew Thorns

Jim Gilbert   (108KB)

Ursula Gallagher   (268KB)

For any further information, please email Mridu Rana, or telephone her on 020 7697 1520.