How to help your patients plan

Good planning is the basis for building trust and teamwork between the GP, patient and carers. It reduces uncertainty and anxiety, helps avoid future confusion and conflict, and helps all involved to understand the wishes of the patient and their loved ones.

Planning can help patients achieve the preferred place of death. In most cases (though not all) this will be their usual home (which for many people at the end of life may be a care home). Emerging evidence from across the country suggests that good planning, which secures the right community support, can realise 70% of deaths at home and halve hospital admissions.

Good Planning – Core Principles

It is always a challenge in the consultation to manage the tension between the time available, the risks to be explored and communicated, and the relationship with the patient (and the others waiting outside…). You will know from your work on long-term conditions that good management is grounded in good planning; characterised by working in partnership with the patient, sharing decisions and documenting decisions and care. Different models exist which give different emphasis according to whether the focus is shared decision-making, personalised planning, support to self-management etc. They have common features, which are all highly relevant to planning at the end of life.

For good planning, the consultation process tends to follow a clear goal oriented trajectory and is characterised by:

• Establishing an open and empathetic style
• Negotiated agenda setting and the identification of priorities which meet both parties’ expectations and concerns
• Information sharing: from the patient re their context, concerns, beliefs and preferences and from the professional re options and limitations
• Discussion of potential for risk/harm with different options and exploration of the patient’s personal comfort with handling different levels of risk
• Deliberation leading to critical decisions or goals, with clear checking of understanding and agreement
• Decisions clearly documented in all records, and used as a basis for goal / progress / impact review.

(With thanks to Angela Coulter / Alf Collins ‘Making shared decision-making a reality’ (2011) The King’s Fund)

At the end of life, some of these decisions will be genuinely critical, and many of the principles of good planning have been captured in a formal approach to specific planning at the end of life, called advance care planning.

What is advance care planning?

Advance care planning (ACP) is a voluntary process, in which patients can set on record choices about their care and treatment and, in particular, any advance decision to refuse a treatment in specific circumstances, including those where they may have lost capacity in future. Under the terms of the Mental Capacity Act (2005), formal outcomes of advance care planning might include one or more of the following: 

• Advance statements. These are not legally binding, but can include a discussion of people's preferences, wishes and likely plans, ie what they wish might happen to them, type of medical treatment they would want or not want, where they would prefer to live or how they wish to be cared for. There are no set formats for these, but there are local and national examples available, such as Preferred Priorities for Care.
• Advance decisions to refuse treatment. These are potentially legally binding. They clarify refusal of treatment or what patients do NOT wish to happen, and involve assessment of mental competency to make that decision at the time. The Mental Capacity Act Code of Practice provides detailed advice about professional responsibilities and issues to consider in relation to advance decisions to refuse treatment, including how to check that one exists, and guidance on making, updating and cancelling them. The publication Advance Decisions to Refuse Treatment: A Guide for Health and Social Care Professionals gives guidance on this area.
• Lasting power of attorney (LPA). This allows patients to appoint someone to take decisions on their behalf if they subsequently lose capacity. It is in a prescribed form. Visit DirectGov: Making and registering a Lasting Power of Attorney. 

Not everyone will wish to make such records. Less formally, the person may wish to name someone whom they wish to be consulted if they lose capacity. For those people who have capacity and who wish to participate, advance care planning can be an integral part of the wider care planning process, particularly in allaying anxieties that they will be subject to invasive procedures and / or denied access to appropriate care at a time when they may not be able to express their wishes.

Documenting ACP

ACP involves a series of conversations in which a patient's wishes are explored, identified and then recorded. There should be locally agreed policies about where care planning documentation (including any formal outcomes of advance care planning) is kept and systems in place to enable sharing between the health and social professionals involved in the care of the individual, including out of hours providers and ambulance services. If you are not sure about local arrangements, contact your local end of life care lead at PCT or SHA level to find out what they are.

GPs may not have to lead ACP discussions; a competent case manager, such as a community matron or other specialist nurse, could start the process. But discussions should be documented, regularly reviewed and communicated to all key persons involved in a patient's care.

ACP information should be added to the patient's clinical records and practice-based GSF or other end of life registers. Information should also be made available to other care providers, with the appropriate consent.

The emerging core minimum data set (developed by national pilot sites for locality end of life registers) includes the following items:

• Record creation and review dates
• Patient name and address
• Consent to share/add details to register
• Name of usual GP and details of practice
• Key worker details
• Carer details
• Hospice details (if applicable)
• Diagnosis and complications
• Secondary diagnoses (if applicable)
• Resuscitation status (or other formal decisions arising from ACP discussions)
• Preferred place of death.

Later this year, the Information Standards Board will make recommendations for a core minimum data set at end of life to be adopted as a national data set.

Useful resources 

Capacity, care planning and advance care planning in life limiting illness, a guide for Health and Social Care Staff has a wealth of information and instruction on how to undertake ACP. 

General Medical Council guidance on end of life care advance planning. 

Gold Standards Framework: Advance Care Planning guidance. 

There is a good overview of ACP on the End of Life Care for All e-learning website.

National End of Life Care Programme (NEOLCP) has produced a useful Advance Care Planning support sheet (PDF). 

Advance Decisions to Refuse Treatment: A Guide for Health and Social Care Professionals.

For patients, Planning for Your Future Care explains ACP and outlines the different options available to them. 

Wagner EH, Austin BT, Von KM (1996) “Improving outcomes in chronic illness” Managed care Quarterly  vol 4 no2, pp12-25

Best Interests at End of Life has practical guidance for carers supporting people at the end of life who lack capacity to make their own decisions. 

The Mental Capacity Act (2005) can be found at www.legislation.gov.uk.  

Dying Matters leaflets for patients and public; posters and postcards for practice waiting rooms; materials for the homeless and hard to reach groups; resources for presentations including DVDs downloadable from the Dying Matters website  or freephone 08000 214466.

Respiratory diseases

Deaths from Respiratory Diseases, also produced by NEoLCP, analyses the latest data on place of death for those with respiratory disease and how this varies with gender, age and socioeconomic circumstances.