Advance care planning
Key Points
Hospital physicians, with their specialist knowledge of the course and timescales of advanced progressive disease, have a vital role to play in end-of-life care planning
Advance care planning (ACP) is a voluntary process whereby patients can express their preferences and goals for future care should they lose capacity
ACP is most effective when it develops collaboratively between patient and healthcare team, and is reviewed regularly in light of changing circumstances
Tools to support ACP are available and may or may not be used. However, they cannot replace open, honest, timely and sensitive discussion and sound clinical judgement
ACP may be a general statement of wishes and preferences regarding the direction and location of care and/or decisions regarding refusal/s of specific medical interventions (eg cardiopulmonary resuscitation, ventilation and artificial nutrition)
Advance care planning (ACP) is a process of discussion about future care between an individual, their care providers and often those close to them. It provides a framework for patients to inform decision making should they lose capacity.1 ACP spans the documentation of conversations that happen as a part of good end-of-life care between patient and healthcare team regarding treatment preferences, goals and location of care, through to formal, legally binding advance decisions.
There are excellent national guidelines on ACP,1,2 although significant effort will be required to implement them. Annually, 1% of the UK population dies, with only 15% dying suddenly.3 Most people wish to die at home, yet over half will die in hospital. Ever greater medical interventions available to manage advanced, progressive disease broaden the options, and therefore decisions that patients and doctors must make.
The End-of-Life Care Strategy
The End-of-Life Care Strategy (DH 2008) recognises that quality and choice in end-of-life care are far from equitable and sets out an ambitious, far-reaching agenda to address this (Table 1).4 ACP is a key element within this, with the aim of fulfilling goals held by many patients including:4,5
participation in decisions about treatment preferences
preparation for death
achieving a sense of completion
being in familiar surroundings in the company of close family and friends.
Palliative care provision
Most care is delivered by primary and/or secondary care teams who are not specialists in palliative care. Initiatives, such as the Gold Standards Framework6 and Liverpool Care Pathway for the dying,7 have been implemented to support care in these settings (Table 2). The need for all health professionals to have skills in assessment, symptom management, communication and ACP for the end of life is now recognised4 and is reflected in undergraduate curricula.
Specialist palliative care (SPC) is available for patients with complex needs (physical, psychological, social or spiritual) which cannot be met by their usual teams. Referral requires patient consent – hence discussion about the palliative nature of treatment. SPC services are available on the basis of need, rather than diagnosis, and include inpatient units (such as hospices), community and hospital advisory teams, daycare and outpatients.
Starting the conversation
The role of the physician in ACP is established, but much remains to be learned in the key skills of prognostication, communication, goal setting and documentation (Table 3).
Prognostication
Prognostication is difficult, even with well-defined disease trajectories, such as in many cancers and motor neurone disease (MND). It is even harder in progressive disease with a relapsing and remitting course, such as chronic heart failure and obstructive pulmonary disease. The question ‘Would I be surprised if my patient died in the next 12 months?’8 can help identify those with whom to start the conversation about end-of-life care. Other possible triggers include:
a new diagnosis of a life-limiting condition
a deterioration in prognostic markers
a step change in treatment
multiple hospital admissions
admission to a care home, or
whenever a thorough reassessment of the patient's needs is required.2
Within specialties, experienced physicians will usually be able to characterise a set of clinical features representing the onset of end-stage disease which can be used to guide decision making.
Communication
Doctors may feel nervous about starting the conversation and patients may be waiting for the doctor to initiate this. There are perceived and real barriers to communication on both sides and facilitatory factors can be hard to achieve organisationally (Table 4). Many fear that addressing end of life will take away hope, and an approach of ‘hoping for the best, preparing for the worst’ can be useful.
Engagement in discussion will be determined by the degree of patient insight that death is near. For some patients, this will prove impossible while others will welcome the opportunity. Patients may wish to discuss some aspects of care but not others. Patients may initiate discussion themselves. The question ‘How long have I got?’ provides an opportunity to discuss progress and expectations and to set realistic goals, even if a precise answer is impossible and often inappropriate.
The most effective ACP is achieved when patient and physician work collaboratively. For this, preferred styles of decision making and information exchange need to be aligned. Clinicians have been found to underestimate patients' desire for information and discussion but to overestimate patients' desire to make decisions.9 Informed ACP requires the doctor to know the medical facts, treatment options and the local resources and services available, and to communicate them effectively to the patient. Patients may choose a supportive or palliative care approach if this is presented to them as a positive choice.
ACP is best viewed as a process, with time between discussions for reflection and clarification of questions. Conversations may continue with other healthcare professionals. Once bad news has been absorbed, concerns can be elicited and addressed, and individual priorities, preferences and goals identified. The patient must feel in control of the timing, place and pace of discussion with the option to stop at any time.
Documentation
Documentation of discussions is essential. Currently, most patients are content with recording a verbal statement but a minority may wish to draw up a formal legal document.1
Legal framework
The Mental Capacity Act (MCA) 2005 10 provides the framework for decision making when patients lack capacity – a common consideration in end-of-life care. Doctors are expected to be conversant with the act10 and the Code of Practice.11 The legal status of advance statements and decisions, and the role and responsibilities of lasting powers of attorney are clearly explained.
Advance statement
An advance statement is a general statement regarding wishes, preferences, beliefs and goals that an individual makes in order to clarify decision making should they lose capacity in the future. For example, ‘When my MND progresses such that I need increasing admissions and my ability to communicate is limited, I would like the emphasis to be on comfort care at home rather than on life-sustaining medical interventions’. Another example is the Preferred Priorities for Care document.12 While not legally binding, such statements must inform best interests decisions.
Advance decision to refuse treatment
An advance decision to refuse treatment (ADRT) states what a patient does not want to happen to them and must relate to a specific treatment and a specific circumstance. An ADRT comes into force when the patient loses capacity to consent to or refuse treatment. It is legally binding if constituted according to the conditions in the MCA and if it meets the specific clinical circumstances. An ADRT for life-sustaining treatment must be in writing, signed and witnessed and state that it should be enforced even if life is at risk.
There are restrictions on an ADRT, for example:
basic nursing care cannot be refused
inappropriate treatment or an illegal course of action (such as euthanasia) cannot be demanded.
Lasting power of attorney
An individual with capacity can appoint a lasting power of attorney (LPA) to make health decisions on their behalf if they lack capacity in the future. The LPA must be registered with the Office of the Public Guardian. This body is legally bound to act according to the best interests of the individual. Their jurisdiction extends only to decisions regarding life-sustaining treatment if this is expressly stated in the original application. A valid ADRT drawn up after the appointment of an LPA must be honoured.10
Sharing information
ACPs need to be accessible at the point of care, reviewed regularly and up to date. Up to a third of those with formal ACPs will change them over time due to evolving circumstances.1
Healthcare professionals also need to communicate with one another on the progress of discussions.
Patients are responsible for keeping and presenting formal ACPs. Ideally, there should also be a local repository for information, accessible to all healthcare providers and including emergency services. Locality palliative care registers are advocated to hold key patient data, note of advance decisions and preferred priorities of care.4 Various models are being piloted.
Conclusions
Many patients welcome open discussion of end-of-life issues at a time, place and pace suited to them, with the potential for their preferences and priorities to be identified and realised. The choice of others not to engage in this process must be respected.
All patients known to be dying should have a care plan in place. Some patients will also wish to record advance statements or draw up a formal ADRT. The skills and sensitivities required in ACP are subtle and complex, and training, experience and fine tuning are required. The current strategic focus on ACP is welcomed, but ACP must not become a tick box exercise in a target-oriented culture.
Hospital physicians have a vital role in identifying patients who have reached the last year of life, in initiating discussion and in communicating with the primary care team. As a voluntary process which progresses at the patient's pace, it is likely that ACP will need to be supported in both primary and secondary care. Processes to support this collaboration between patient, carer and healthcare teams need to be developed and training in ACP made available.
- © 2010 Royal College of Physicians
References
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- Royal College of Physicians
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- NHS End of life Care Programme
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- Department of Health
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- Murray SA,
- Boyd K,
- Sheikh A
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- Robinson A,
- Thomson R
- ↵ Mental Capacity Act 2005. www.opsi.gov.uk/acts/acts2005.
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- Department for Constitutional Affairs
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- National Audit Office
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- Spence A,
- Hasson F,
- Waldron M,
- et al
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- Rogers AE,
- Addington-Hall JM,
- Abery AJ,
- et al
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- Murray SA,
- Boyd K,
- Kendall M,
- et al
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