Features: Difficult conversations, difficult choices
25 March 2009
Looking at the draft guidance End of life treatment and care: Good practice in decision making and some of the complex and sensitive issues involved.
Most doctors will, at some point in their career, be involved in caring for patients who are dying. End of life care raises particular emotional, practical and ethical challenges which may mean facing difficult discussions with patients and their relatives.
There may be uncertainties and misunderstandingsabout the benefits and burdens of treatments, and hard decisions where resources are limited. The GMC’s draft guidance sets out the ethical principles underpinning end of life care, and aims to provide practical advice that supports doctors in approaching these often complex and difficult situations.
To ensure that the guidance reflects a consensus about how doctors should approach end of life care, we are seeking views from a wide range of professional, public and patient groups as well as from individual doctors, patients and carers.
The role of patients and carers
Here Dr Dominic Bell, Consultant in Intensive Care at the General Infirmary at Leeds, and Jo Black, User and Carer Involvement Project Manager for the National Council for Palliative Care, explore the role of patients and carers in end of life decisions.
Jo Black
User and carer Involvement Project Manager at the National Council for Palliative Care
There is a certain irony in my writing this article. I, a professional, am telling you (also a professional) about the role of a patient, family member or carer in their end of life experience. I can almost hear my ‘service user’ contacts gasping at the concept! (The term ‘service user’ describes those who have personal experience of palliative or end of life care either as a patient or carer.) As one person recently said, ‘the professional team wouldn’t exist if it weren’t for the patient’.
This starting point has fuelled both the palliative care ethos (‘You matter because you are you. You matter to the last moment of your life.’ Dame Cicelely Saunders) and that of ‘user involvement’. Service users are acknowledged as central in end of life care and their expertise, both in their condition and services, is seen as equal (but not identical) to that of professionals.
The concept is not difficult to grasp, but acting on it can be tricky. Asking a person with the life-limiting condition about their views is often dismissed as ‘insensitive’. Current or former carers are enlisted as proxies, raising questions about representativeness of views. Consequently, it’s all too easy to put user involvement on the ‘too difficult’ pile.
However, if we are serious about improving service users’ experience, we need to find creative ways to enable them to express their choices and preferences. NCPC draws on service-user expertise alongside that of professionals across all activities. Through this, service-users shape national initiatives, such as the Department of Health’s End of Life Care Strategy. NCPC’s user involvement project (www.ncpc.org.uk /project) explores the practicalities of ‘user involvement’ in end of life care and shares learning with other organisations.
To answer the question: the role of patients and carers should be central, with professionals in ‘best supporting’ roles. For many, this is still ‘work in progress’. But the most important thing is to take it off the ‘too difficult’ pile. Service users deserve a say in their end of life experience.
Dr Dominic Bell
Consultant in Intensive Care
End of life care poses many challenges for the medical profession and the ambiguous role of the next of kin in decision making compounds those difficulties. The primary ethical responsibility to respect individual autonomy, even when capacity is compromised, coupled with the duty of confidentiality, could theoretically exclude their involvement. Current law, furthermore, limits the authority for decision making on behalf of an incompetent adult to nominated individuals endorsed by the court with a very specific lasting power of attorney for personal welfare.
However, with increasing age, illness or disability, even competent adults become dependent on friends and family to varying degrees and most individuals would seek the views and support of their immediate circle on such important matters.
The law, moreover, restricts medical authority to the ‘best interests’ of the patient, a concept extending beyond medical best interests and incorporating their broader values and beliefs. In the absence of a comprehensive advance directive, a ‘best interests’ determination requires exploration with the next of kin, as endorsed by regulatory and governmental bodies.1
In engaging the next of kin in these scenarios, it is important to explain the above principles and emphasise that their views will inform a decision rather than be determinative. This is essential to avoid transferring responsibility onto the next of kin for a decision on a subject in which they have no expertise, on an issue where their emotional involvement could inappropriately skew the result, and potentially trigger longer-term guilt if they believed themselves responsible for either limiting life-sustaining medical treatment (LSMT) prematurely or forcing the burden of protracted and ultimately ineffective support on the patient.
It is also important to review the reasoning behind the opinion of the next of kin in all cases but particularly if this favours provision of LSMT against the consensus recommendations of the healthcare team. Many factors such as religious and cultural views, guilt over actual or perceived previous neglect of the patient, or beliefs that decisions are being driven by resource limitations or discrimination, can all contribute to rapidly escalating conflict.
A pragmatic perspective on this issue is that if the medical profession is to maintain public trust, both patients and their next of kin must be confident that those who share or understand the patient’s values and belief at this most vulnerable stage of their lives will be listened to and their views respected. Finding the correct balance may be challenging at times, but should be achievable with empathy, high standards of communication, and patience.
1. General Medical Council. Consent: patients and doctors making decisions together. London: General Medical Council, 2008.
The consultation runs until 13 July 2009. You can read the draft guidance and submit comments online at
http://www.gmc-uk.org/. We will also be holding a series of meetings and events across the UK. For more information, email
standards@gmc-uk.org or write to the Standards and Ethics Team, GMC, Regents Place, 350 Euston Road, London NW1 3JN.