Advance care planning under the Mental Capacity Act 2005 in primary care

INTRODUCTION

The past two decades have seen substantial change in the way medicine is practised in the UK, with a decisive shift away from paternalistic medicine. This has involved an increasing emphasis on the rights, views, and choices of patients, and on respect for their autonomy in decision making with regards to their health care. At the same time, however, has come the recognition that there are situations where patients are unable to make decisions for themselves; that is, where they lack capacity.

Introduced in April 2007, the Mental Capacity Act 2005, in addition to defining the test for mental incapacity, is primarily intended to address this problem, establishing a framework for decision making on behalf of incapacitated patients, aiming to ensure that all decisions are made in such patients' best interests. In doing so, it places on statutory footing various elements of anticipatory decision making or advance care planning (ACP). Already practised for some time in the US, Canada and Australia, ACP is based on the belief that personal autonomy in decision making should be preserved wherever possible, and aims to give patients a way to continue to exercise their autonomy once they are unable to make decisions for themselves. ACP is now strongly promoted in UK healthcare policy,1 with professional guidance governing its use from both the Royal College of Physicians (RCP)2 and the General Medical Council (GMC).3 A means of clarifying decision making while empowering patients and enhancing choice,4 it may also provide financial benefits in reducing inappropriate hospital admissions and use of services.5,6

This article examines the concept of ACP as described in the Mental Capacity Act 2005 and recent professional guidance, looking at evidence of its benefits as well as providing practical information on its use, in order to inform primary care professionals on this important emerging area of medical practice.

WHAT IS ACP?

ACP can be defined as a process of formal decision making that aims to help patients to establish decisions about future care which take effect when they lose capacity. Usually involving a series of face-to-face discussions between patient and doctor, with time in between for the patient to talk to relatives, carers and friends, the ACP process seeks to clarify understanding of illness and treatment, as well as beliefs, values and goals of care, before considering future wishes. From the point of view of healthcare professionals, ACP may also be seen as a means to ‘inform’ decision making on behalf of patients who lack capacity, allowing doctors more accurately to assess the ‘best interests’ of their patients.

Although the term ACP is not used in statute, the concept is clearly contained in the Mental Capacity Act 2005, which reinforces the common law principle, based on the right of any individualto consent to or refuse treatment, and that refusals of treatment made in advance by a patient with capacity will be binding.7,8 Replacing previous terms such as ‘living wills’ and ‘advance directives’, the Mental Capacity Act 2005 essentially allows for three possible outcomes of ACP, each of which takes effect when the person loses capacity:

1. Advance statement of wishes: allows the person to state preferences or wishes for future care, which are later considered when assessing their ‘best interests’. This may take the form of a general list of beliefs and values, or describe more specific preferences for treatment.

2. Advance decision to refuse treatment: a legally binding refusal of treatment in advance. This can include refusal of life-sustaining treatment if specifically stated, but does not allow the patient to refuse ‘basic care’ such as warmth, shelter, and the offer of food or water by mouth.9

3. Lasting power of attorney (LPA) for health and welfare decisions: the appointment of someone to make decisions, subject to ‘best interest’ criteria, on the patient's behalf when they lose capacity. There are two different types of LPA, ‘property and financial affairs’ and ‘health and welfare’. A health and welfare LPA can give authority for both decisions about medical treatment and personal welfare decisions such as where to live. This can also include the ability to make decisions regarding life-sustaining treatment if specifically stated.

It is worth stressing that the legally binding nature of decisions made as part of ACP refers only to advance refusals.10 Although requests made in advance should be considered as part of an assessment of the person's best interests, they cannot require healthcare professionals to provide particular treatments.11 In addition, although decisions may include refusal of life-sustaining treatment, this does not of course allow any action with the aim or intention of hastening death: the Mental Capacity Act 2005 does not change the law relating to homicide or assisted suicide.

POLICY CONTEXT

The idea of an intervention that is seen as empowering patients and enabling them to retain some autonomy when they have lost capacity, while at the same time simplifying and enhancing the quality of decision making and potentially saving health services money in reducing hospital admissions and use of services, has gained substantial support, and NHS policy is strongly in favour of ACP. The NHS End of Life Programme1,12 provides information and training on ACP, and promotes initiatives for its use. Renewed focus on patient choice and shared decision making with the government's White Paper (Equity and Excellence: Liberating the NHS)13 is likely to further increase support for the concept.

In addition there now exists a growing body of professional guidance relating to ACP. The GMC has produced detailed new guidance6 on end-of-life care that includes advice for doctors on ACP, detailing their legal and professional obligations and recommending discussion of ACP with patients who may die of their current condition or those who have a condition that is likely to result in impaired mental capacity. The RCP has also recently produced good practice guidance specifically for ACP,2 providing recommendations on its use, including its implementation in primary care, while the British Medical Association (BMA) has published guidance on advance decisions and proxy decision making.14

ATTITUDES TO ACP

Several studies have demonstrated positive attitudes to the concept of ACP among both healthcare professionals and patients,15,16 with widespread agreement on the strength of ACP in extending patients' autonomy.17,18 In addition it was felt that ACP:

• gives patients a greater feeling of control,17 and peace of mind;18

• facilitates decision making,19 relieves the burden of decision making on family,17and aids discussions about end-of-life care;19

• makes disputes easier to resolve;20

• establishes open discussion between patients, doctors, and relatives;18,20,21

• protects patients from ‘over intervention’ driven by loved ones;18

• makes doctors less likely to practice ‘defensive medicine’;21 and

• makes it psychologically easier for clinicians to withdraw futile treatment.21

DOES ACP WORK?

Various criticisms have been levied at ACP: it has been argued that patients do not engage with ACP,22 that if they do, it makes no difference to their end-of-life care,23 and that it has no impact on use of resources.24 One very large observational study of 4000 patients, demonstrated poor uptake of ACP,25 but others have since successfully demonstrated high levels of ACP completion following education or promotional programmes.26-28 In addition, there is evidence that ACP does in fact make a difference to end-of-life care, with one retrospective study finding that treatment decisions made in advance were consistently followed in making end-of-life decisions,29 while another study of nearly 4000 patients found that those who made advance directives received care that was strongly associated with their preferences.28 ACP can also be of benefit to patients' families and carers: a recent prospective study demonstrated that ACP improved end-of-life care and patient and family satisfaction, and reduced stress, anxiety, and depression in surviving relatives.30

Finally, evidence exists for the belief that ACP can reduce utilisation of health service resources. One study showed that advance directives reduced utilisation of health services, including hospitalisation, without affecting patient or family satisfaction with care,26 while another found that educating GPs, nursing home staff, patients and families about ACP resulted in reduced ambulance use, hospital admission and even mortality.6

WHY PRIMARY CARE?

So why should we carry out ACP in primary care? Evidence has suggested that ACP is best initiated early,31 and at a time of relative wellness for the patient,32 making the primary care environment seem more suitable than secondary care at the time of an acute admission. In addition, the fact that most patients still have a single GP who oversees much of their care provides an essential element of continuity lacking in any other setting.33 Patients arealso likely to know and trust their GPs, and to be willing to discuss sensitive issues with them.32

Furthermore, GPs are likely to have a good knowledge of their patients, in terms of medical, psychological, and social background, enabling a more accurate assessment of their capacity to take part in the ACP process as well as a greater understanding of their needs. Primary care gives the opportunity for ACP to be an ongoing process, rather than a single event, with the potential for multiple appointments giving time foraccurate assessment as well as true understanding to develop between patient and doctor. A systematic review of studies aimed at increasing completion of advance directives34 found that the most successful interventions were those that incorporated direct patient-healthcare professional interaction over multiple visits.

While primary care may provide a familiar environment which could be of help with ACP,32 there may also be the opportunity to discuss care in the patient's own environment with home visits, and to provide additional support with decision making with the help of the wider primary care team including hospice and palliative care teams and district nurses. Finally, the primary care setting offers an unrivalled opportunity for follow-up and review of ACP, especially now that most practices have computerised records and are accustomed to regular follow-up and review of their patients as part of their general care.

BARRIERS TO ACP

A number of studies have investigated possible barriers to the implementation and uptake of ACP. One group systematically reviewed studies designed to increase advance directive completion in primary care and identified a number of common themes in terms of barriers.34 Physicians tended to blame ‘lack of time’, ‘low health literacy of patients’, ‘lack of necessary skills’, ‘lack of privacy for discussion’ and ‘patients not sick enough’ for lack of success in implementing ACP, while patients cited ‘deferring decisions to physicians or family’, ‘inconsistency with religious beliefs’, ‘too distressing to discuss’, ‘documents too complicated’ and ‘plan to do it later’.

Other studies have suggested that patients' own assumptions regarding knowledge of their healthcare preferences present a barrier to ACP; older patients in particular may assume that their preferences are known to their trusted friends, family, and healthcare providers, even though they have not discussed or documented these preferences explicitly.32,35 Assessment of capacity in ACP may also form a substantial barrier; methodological and procedural difficulties in determining individuals' capacity to participate in ACP,36 as well as assumptions made regarding their capacity,37 may lead to large numbers of patients being unfairly excluded from the process. Discomfort on the part of healthcare professionals in initiating the discussion of ACP may similarly result in patients missing the opportunity to participate.36

OTHER CONCERNS

A number of commentators have raised ethical concerns about the process of ACP. Several studies have found significant differences in uptake and completion of ACP, depending on the background of participants, with lower rates of completion in certain ethnic groups as well as those with less formal education.34 In addition, the fact that ACP may save health services money, and in particular that care following life-sustaining treatment tends to be highly expensive, raises concerns that economic drivers towards reduced intervention in end-of-life care may play a part in promotion and support of ACP in healthcare systems.38 Finally, there is the question of the accuracy of prediction of future wishes: ACP is based on the assumption that patients can reliably anticipate their choices in the future. Some commentators argue that there is little evidence that decisions when healthy predict decisions when death is imminent;38 individuals can never really know what their future healthcare wishes will be, and therefore current wishes of patients, regardless of capacity, should take precedence over competent historic decisions.39

WHAT DO GPs NEED TO DO?

Increasing promotion of ACP in the UK, particularly with reference to its application in primary care, is likely to have raised public awareness, and GPs can expect growing numbers of enquiries from patients and carers regarding this process. With this in mind, it is hoped that the following points will be of practical assistance to GPs in ACP with their patients. (Box 1).

CONCLUSION

The subject of a number of Department of Health initiatives as well as specific guidance from professional bodies, ACP is promoted as a means of allowing patients to continue to exercise their autonomy once they have lost the mental capacity to make decisions. Generally viewed positively by both doctors and patients, it is supported by a growing body of evidence which demonstrates its ability to improve end-of-life care, enhancing patient and family satisfaction, while reducing use of healthcare resources.

Nevertheless, there remain significant barriers to the use of ACP, as well as ethical concerns, and more research is needed to resolve some of this uncertainty. Professionals would be advised to have these issues in mind when considering and discussing ACP with their patients and may also wish to consult colleagues for views and make their experiences the subject of practice team discussions.

Now firmly on the public and professional agenda, ACP may be expected to play an increasing role in day-to-day medical practice, particularly in primary care, which is seen as an ideal environment for its use. As both an important source of information for patients, and as instigators of the process of ACP, GPs need to develop knowledge and experience in this area to provide the best care to those who want or need to undertake these difficult but meaningful discussions.