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This chapter discusses concept of advance care planning (ACP) in end of life care and explains the responsibilities of health care professionals in ACP. Properly conducted, ACP is likely to enable patients' previously stated preferences to be understood and taken into account once they have lost capacity. However, there is a risk that the ACP process may give rise to unrealistic patient expectations and in some patients to avoidable emotional distress.

This chapter discusses the purpose and use of advance directives (ADs) and advance care planning (ACP) within the context of ESRD. It also presents empirical evidence about the degree to which ADs and ACP have met their intended goals, interventions to enhance the use and value of ADs and ACP, and new research that helps define how to initiate and facilitate effective ACP for patients with ESRD.

This chapter first provides brief introductions and an outline of development of ACP. Then, it surveys the evidence base, providing a selective summary of ACP research. Next, it presents a discussion of the social and cultural challenges with ACP and how ACP facilitates a process of shared decision making. It also cites practice and policy developments to promote ACP in England. ACP developed in the latter half of the twentieth century alongside concerns about the risks of futile and inappropriate use of life prolonging medical technologies. A new perspective has begun to emerge in which emphasis is placed less on leaving an instruction to guide medical care and more on the potential for ACP discussions to help patients and their families prepare for death, review their immediate goals and hopes for the future, and strengthen their relationships.

This chapter presents an overview, introduction, and definition of ACP; the Canadian landscape and current legislation; and professional recognition for ACP/directives. It also reviews professional education, public awareness and education, other national activities, and adaptations and specialized ACP. Canada's multiple jurisdictions with differing health care services and laws create an extra layer of challenge in creating portable Advance Care Plans, and in educating Canadians about them. Professional education initiatives have led to the inclusion of end of life care competencies into the medical school curriculum and licensing and certification exams, as well as to the creation of resources for the education of currently practicing professionals. Public awareness has been growing from the grass-roots level up to the national level, with a new national awareness strategy planned for within the next few years. Growing recognition of specialized Advance Care Plans has led to adaptations for cultural groups, specific diseases, and paediatrics.

This chapter describes the care home setting, aspects that have an impact on use of Advanced Care Planning (ACP) in care homes, examples of issues, use of ACP in the GSF Care Homes Training Programme, ACP with dementia patients, and changing the care home culture. ACP discussions are especially important for residents in care homes in order to clarify and implement wishes and preferences for end of life care. Care homes lead the way in their extensive use of ACP discussions. ACP is more routinely used by care home staff than is often recognized, and can be easier to introduce in care homes than in other settings. Key challenges for residents include poor means of communication due to dementia/cognitive impairment or physical deterioration.

This chapter discusses the challenges of end of life, the ethical and legal foundations of advance directives (ADs) and Advance Care Planning (ACP) in the United States, the evidence base regarding the application of ADs and ACP in clinical settings in the USA, the lessons learned from the failure of the AD process in the US and the future of ACP. It notes that the history of the development of ACP in USA began with refusals of treatment and ADs but has now moved towards a greater emphasis on statements of preferences and wishes. ACP is more than documenting life-sustaining treatment choices or identifying a surrogate decision-maker; it is a comprehensive, continuing communication and ‘shared decision-making’ process between the patient, family, and providers designed to elicit patient values and health-related quality of life goals for treatment.

Decisions about whether to authorize potentially life-prolonging treatments for patients with dementia are amongst the most difficult choices facing families today. Typically, adult children who very much want to do the right thing for their parents feel conflicted: they are ambivalent about sustaining a dependent, regressed parent who bears little resemblance to the strong, independent figure they grew up with; they do not regard dementia as a terminal disease, analogous to advanced cancer, and thus feel obligated to authorize treatment; they would not want aggressive treatment if they themselves had dementia, but recognize that their parent seems content despite her diminished state; they do not want to inflict painful tests and treatments on an uncomprehending older person, but realize they would not hesitate to expose their children to equally unpleasant but life-prolonging medical procedures. This chapter focuses on an under-utilized way to help family decision-makers: advance care planning. Systematic advance care planning — beginning when an older adult is cognitively intact, addressed again when the earliest symptoms of dementia appear, and then revisited with the surrogate at each stage of the illness — can avoid both under-treatment and over-treatment of the individual with dementia. It allows physicians to respect the patient's wishes and provides support to caregivers over the many years that the disease unfolds.

This chapter provides an overview of the MCA's impact on end of life care. It situates the MCA in the current context of policy and practice. It describes how the MCA can be used to improve care, enable people to express and protect choices, and empower and enable the professional and/or the proxy decision maker. It also presents an introduction and explanation of the role of the IMCA and how it might apply to Advance Care Planning (ACP) and End of Life decision making, and an explanation of the legal and ethical process involved in reaching best interest decisions, especially for potentially vulnerable people in care homes and other settings.

This chapter provides clarification of communication skills and Advance Care Planning (ACP), evidence for the value of effective communication in ACP, key communication skills with useful examples of opening gambits, examples of blocking behaviours, models of communication and suggestions for implementation, workforce issues, and recommendations for further education and training. It notes that communicating about end of life care is challenging but essential. Defining communication and communication skills can be a complex business. There is plenty of evidence to suggest that effective communication is a key element in allowing patients to decide how they are cared for at the end of life. Specific communication skills and models can be instrumental in encouraging patients to share concerns, ideas, and expectations, while some communication behaviours can inhibit patient disclosure. Meanwhile, a systematic approach to developing a workforce skilled in end of life communication is achievable and desirable.

This chapter describes the role of the commissioner, commissioning of end of life care services, commissioning to deliver Advanced Care Planning (ACP), engaging commissioners to support delivery of ACP, and the challenges for delivery. It notes that commissioners have a duty to ensure efficient and effective use of finite resources to deliver the best possible outcomes for the local community. Commissioners as well as providers must culture quality, innovation, and productivity to better deliver these outcomes. Health and Social Care stakeholders and their communities need to work in strategic partnerships and with transparency and probity. ACP as part of end of life care has become a strategic and clinical priority, especially in care homes or specific pathways e.g. cancer, dementia, and long term conditions.

This chapter provides an introduction to and national context for the importance of Advance Care Planning (ACP) in the Department of Health End of Life Care Strategy in England. It also presents background publications which have highlighted the need for ACP, issues surrounding ACP, resources to support the process of ACP, the practicalities of implementation, and further developments. ACP is delivered as a process of discussion between an individual and their care provider, irrespective of discipline, with or without their carer/family involvement. Outputs may include a statement of wishes and preferences, decisions to refuse treatment, and/or Lasting Power of Attorney. Meanwhile, guidance from Health and Social Care Staff has been published. Further work is underway in areas of education, communication, and information transfer.

This chapter discusses the background of Advance Care Planning discussions (ACP) from an Australian perspective; the Australian policy and development of national ACP guidelines in 2007; consensus recommendations for clinical practice, including timing of ACP discussions, and ways to open the discussion; suggested means to improve communication using the PREPARED framework; and dissemination of guidelines and next steps. It notes that discussions about death and dying are difficult and sensitive discussions about end of life issues are a very important aspect of care for patients with advanced life limiting illnesses. ACP discussions, including discussions about no CPR orders, should take place in the general context of a conversation about the person's values, goals etc. One should also consider the recommendations conveyed by the acronym PREPARED and involve key proxy decision-makers in ACP discussions.

This chapter examines the importance of ensuring that end of life care patients' preferences for location of care and death are achieved. Preferred place of care and death are included in advance care planning documents (ACP). However, attempts to achieve patients' previously stated preferences on this matter may not always be in their best interests in the later situation when they have lost capacity and making decisions on the basis of their best interests is a legal requirement of the Mental Capacity Act.

This chapter presents an overview of issues surrounding Advance Care Planning (ACP) in the community. It examines when should one start ACP in the community and which patients, when, and who should be involved. It looks at the barriers to ACP in the community and how to overcome them. It reviews outcomes and benefits for patients, carers, and practitioners; what are they and how can one measure them. The discussion holds ACP should be used in the community for patients with all progressive illnesses. ACP should be commenced as early as the patient wishes, but certain triggers are suggested. There are significant barriers to the widespread use of ACP in the community such as staff resistance, difficulty identifying the appropriate time, and time pressures. The greatest enabling factor in ACP is a pre-existing relationship between patient and health care professional.

This chapter describes linking spirituality and Advanced Care Planning (ACP); fear and ACP; how thinking about death changes people; religious views of ACP; denial and ACP; personal control and ACP; the spiritual work of ACP; adaptation and ACP; and ritual, sacrament, and ACP. The discussion holds that dying is not primarily a medical event. The process of thinking about end of life issues can significantly impact on an individual's attitudes, values, and belief systems. Dying patients can challenge the cultural illusion that life is going to last forever. This can be hard for families and professionals to accept and challenges their own fears around mortality. The importance and wisdom of religious rituals and religious symbolism cannot be ignored even in the most secular of contexts as they bring comfort to many.

This chapter acts as a guide on implementing ACP practices in a local area, utilizing the Plan-Do-Study-Act (PDSA) Quality Improvement model, based on extensive experience from the USA and is adapted from the Common Sense Guide to Improving Palliative Care, Oxford University Press, 2007. It presents an introduction, definition of ACP and ‘doing’ ACP; the PDSA quality improvement process; the three fundamental questions and necessary steps to improvement; how to accelerate improvement and spread the gains; examples of ACP, changes to try and common barriers to ACP; frequently asked questions; and communication strategies to initiate and target ACP. The discussion notes that ensuring the centrality of the patient's and family's voices in treatment decision-making is one of the most important goals for achieving patient and family-centred late life care.

This section presents guidelines for advance care planning and advance directives. The term “advance care planning” describes a process initiated by a patient or a health care provider and designed to achieve three goals: to elicit a patient's values and preferences concerning future treatment and record the patient's treatment preferences; to use a patient's values and preferences to establish goals of future care, often in light of a patient's established diagnosis, prognosis, and treatment options; and to develop a future care plan that reflects a patient's preferences and goals, and to modify the care plan so it remains consistent with changes in goals.

This chapter describes the synopsis of evolution of Advance Care Planning (ACP) in Australia, the results of a randomized controlled trial of ACP in elderly inpatients, and the key elements to successful Advance Care Planning. ACP improves end of life care and patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives. Despite the intentions of good legislation, the provision of good end of life care is still inadequate. ACP only occurs if health professionals are trained to facilitate it with patients and their families and if system changes are made to support and authorize a change in clinical practice.

This chapter holds that the oldest old are a rapidly growing section of society, in whom conditions affecting capacity are prevalent. Advance Care Planning (ACP) may be helpful in allowing frail older people to exert greater control over their care. Case managers are ideally placed to help initiate ACP, preferably in primary care in anticipation of future events which may impair capacity. Professionals involved in helping people draft Advance Care Plans should be aware of their own area of competence and ask for help when necessary. ACP may not be for everyone, but it is potentially a very useful tool for opening up discussions about difficult subjects. A sensitive approach, based on an established relationship, is more likely to be effective. For older people, case managers initiating discussions in primary care may be especially helpful in this regard.