advance care planning

When you or someone close to you becomes ill, injured, disabled, or goes through a life-changing event, it can make you think about many things. Some of them aren’t easy to dwell on, such as what might happen in the future if you’re no longer able to make decisions for yourself. If you haven’t already thought about this, now might be the time to do so. The first step in advance care planning is thinking about it. For example, you might like to consider your preferences for future health care and treatment and what would be important to you at the end of life. You might also like to consider where you want to live, types of home services you want, and even planning the type of funeral you want.

9) If I live in another state or spend extended periods of time in another state, will my New York or other state-specific advance directives be honored in that state? Each state has its own laws governing Advance Care Planning and the use of Health Care Proxy forms, Living Wills, MOLST and DNR Orders. Therefore, it is important that you investigate that state’s laws on Advance Care Planning. You may want to begin by checking out the state’s Department of Health website or going to caringinfo.org where you can find Advance Directives from other States.

the terminology surrounding the concept of ACP can be confusing for both health care professionals and the public. This document, Advance Care Planning: A guide for the New Zealand health care workforce, was prepared in response to an increasing sector focus on the need for clear and accurate information and guidance regarding ACP in the New Zealand context. The intended audience encompasses providers, funders and planners in all areas of health care. The document is not aimed at the general public. The document provides standardised information about ACP principles and legislation in New Zealand and aims to promote consistency in practice. It will assist in the development of local policies, guidelines and education and training programmes in ACP. Well-implemented ACP policies and pathways will ensure that the treatment and care of each individual are aligned with their personal preferences, values and beliefs. It is also acknowledged that greater use of ACP will assist the community to recognise the limits of modern medicine and the roles that palliative care and ACP have in promoting quality care at the end of life through symptom management, social support, community participation, health and death education, and reducing harm (Kellehear 1999).

Remember, if you don’t make the decisions, others will have to make them for you. It is certainly easier for your family or significant other if you let them know your wishes in advance. In the absence of advance care planning, families find making treatment decisions for terminally ill loved ones to be among the most stressful decisions in life and patients are much more likely to receive ineffective, painful, and expensive treatments prior to death. 4 Advance care planning is a blessing to you and your family.

What is an Advance Care Plan? Advance Care Planning is a process that supports patients at any stage of health, and is a means of extending autonomy, by planning for future care in the event if someone becomes unable to make their decisions or wishes known (Izumi, (2017), Brinkman – Stoppelenburg, Rietjens and Heide (2014). In essence, it is a process of discussions about treatment and no treatment options, and recording the preferences of care of patients who may lose capacity or the ability to communicate in the future (Fig 1).

attribution: “Reprinted by permission from the Foundation for Healthy Communities copyright © 2001. All rights reserved.” These materials may not be reproduced for resale. Why Advance Care Planning? M aking decisions about medical care is not always easy – especially now that machines can keep patients alive even when there is no hope for recovery. It's your right to participate and plan for your care. But at some point, you may become unable to make your own health care decisions. That's why it's important to think and talk about your feelings and beliefs with your loved ones – long before critical decisions must be made.

Advance care planning is: • An opportunity for you to reflect on your values, beliefs and wishes for care; • Conversations with family and friends to let them know your future health and personal care wishes in case you become unable to speak for yourself;

• The development of quality metrics and standards for clinician- patient communication and advance care planning, with insurance reimbursement tied to performance on these standards. • Federal and regulatory action to establish financial incentives for integrating medical and social services for people nearing the end of life, including electronic health records that incorporate

Strategies for Advance Care Planning Gail Austin Cooney, M.D., and William L. Allen, J. D. D eciding to have an ad- vance directive is only the first of several key decisions about end-of-life care. Once a person makes this decision, a number of questions arise about the best approach to take. However, the best approach may vary from one individual to another. This article identifies the benefits as well as the potential problems with various approaches. This information is intended to help you determine which avenue is best suited to your situation.

NHPCO Recommendations: NHPCO strongly supports the implementation of these two CPT codes by CMS, providing reimbursement for these services as approved by the CPT Editorial Panel and the AMA-RUC. We also ask CMS to make clear that completion of a particular form, such as an advance directive, during the advance care planning visit is not a prerequisite to billing for the service. Beneficiaries may want to initiate a discussion of advance care planning with their health care provider before they are ready to document their wishes on a standard form.

Advance care planning is a process that helps you to plan for future medical care. This process involves thinking about your values and beliefs and your wishes about the medical care you would like to have if you became critically ill or injured. It is a way to make sure that people involved in your life understand your wishes about medical treatment and care. You may choose to write down an Advance Care Directive that records your specific wishes in the event of serious illness, and any treatments you would refuse.

Table 1. Hypothetical scenarios for advance care planning Scenario 1A You are an older adult with a chronic disease in your lungs and take medication every day. You live alone in your own home, but require homemaking help, and you can walk only a few blocks due to shortness of breath. In the past year you have been in the hospital several times when this condition got worse due to a lung infection (pneumonia). Now you are sick again, and when you are admitted to the hospital, your breathing is so diffi cult that there is a chance you could die. You could be connected to a respirator to breathe for you. This would mean being in the intensive care unit, unable to speak or eat due to the tube in your lungs. You would be given medication to calm you while the machine breathes for you. You would use a respirator for several days to a week while the infection is treated, but there is a good chance (>50%) that you would recover well enough to leave the hospital. After discharge you likely would not have the same energy and ability to care for yourself that you did before, and you might have to live in a facility where you can get nursing care.

pACP — pediatric advance care planning RC — Respecting Choices RCT — randomized controlled trial Ms Lotz developed the conception of the review, constructed the search strategy, screened the studies, extracted the data, synthesized the results, and drafted the article; Drs Jox and Führer signi fi cantly contributed to the conception of the review, reviewed the study abstracts, checked the data synthesis, and revised the article; Dr Borasio contributed to the conception of the review, supervised the whole review process, and revised the article; and all authors participated in regular discussions and approved the fi nal version of the article.

OBJECTIVES: To determine the effect of family-centered pediatric advance care planning (FACE pACP) on HIV-specific symptoms. METHODS: In this single-blinded, randomized controlled trial conducted at 6 US hospital- based HIV clinics, 105 adolescent-family dyads, randomly assigned from July 2011 to June 2014, received 3 weekly sessions in either the FACE pACP arm ([1] pediatric advance care planning survey, [2] Respecting Choices interview, and [3] 5 Wishes directive) or the control arm ([1] developmental history, [2] safety tips, and [3] nutrition and exercise tips). The General Health Assessment for Children measured patient-reported HIV-specific symptoms. Latent class analyses clustered individual patients based on symptom patterns.

CHAPTER FOUR: THE RATIONALE FOR ADVANCE CARE PLANNING 34 4.1 Introduction This chapter will focus on the relative advantages and challenges of advance care planning and advance healthcare directives. The advantages of the broader notion of advance planning, as described in chapter one, are assumed to be self-evident. Thus, while we are not aware of any evidence that indicates people who plan ahead for financial, legal, or social issues are happier or live a better quality life than others who do not engage in such planning, there are many stories of the difficult and sometimes dire consequences that can result from a lack of planning e.g., family disputes over assets of a deceased person, funeral arrangements, organ donation, location of assets etc. It is also acknowledged that in spite of the self-evident benefits of advanced planning, people are generally reluctant to engage in advance planning for a variety of reasons, such as financial, cultural and expediency. Financial planning requires resources and a willingness to delay the use of personal resources. Furthermore, it is clear that many people cannot afford or are unwilling to invest in a private pension, especially since the recession began in 2008 (Moloney and Whelan, 2009). Equally, for a variety of cultural reasons, Irish people are not used to planning ahead in making wills or detailing their funeral preferences in case they ‘tempt fate’. The remainder of this chapter will concern itself with advance healthcare planning.

RESEARCH Barriers to and enablers of advance care planning with patients in primary care I nterest has emerged in improving the provision of health care during serious illness or near the end of life; research shows that patients and families wish to be engaged in communication and decision mak- ing about treatments with health care professionals. 1,2 Hospital care near the end of life often involves the use of technology-laden, invasive, life-sustaining treat- ment, 3-5 yet patients and families often have strong pref- erences at the end of life for care that is focused on comfort rather than invasive treatments. 2,5,6 Previous engagement in advance care planning (ACP) is associ- ated with improved patient and family experiences with health care near the end of life, greater concordance between patient wishes and the health care they receive, and fewer unwanted intensive treatments. 7,8 Advance care planning is defined as a communication process wherein people plan for a time when they cannot make decisions for themselves. It includes reflection, delibera- tion, and determination of a person’s values and prefer- ences for treatments at the end of life, identification of a substitute decision maker, and communication among an individual and his or her loved ones, future substi- tute decision makers, and health care providers about these values and preferences. 9 It can result in a written expression of wishes. 9

Caring for people at the end of their lives is an important role for many health and social care professionals. One of the aspects of this role is to discuss with individuals their preferences regarding the type of care they would wish to receive and where they wish to be cared for in case they lose capacity or are unable to express a preference in the future. These discussions clearly need to be handled with skill and sensitivity. The outcomes of such discussions may then need to be documented, regularly reviewed and communicated to other relevant people, subject to the individual’s agreement. This is the process of Advance Care Planning (ACP). This document highlights the key issues and challenges of incorporating ACP into patient care. It contains useful information on the key principles of ACP and on the definitions of ACP and related terms. It also indicates how ACP links to the Mental Capacity Act (2005).

Ruth Piers 1,2 , Gwenda Albers 3 , Joni Gilissen 2,9* , Jan De Lepeleire 4 , Jan Steyaert 5,6 , Wouter Van Mechelen 4 , Els Steeman 7 , Let Dillen 8 , Paul Vanden Berghe 3 and Lieve Van den Block 2,9* Abstract Background: Advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual ’ s preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care.

Results: Participants from the pilot study did not encounter any problems in answering the Advance Care Planning Questionnaire. Hence, no further modifications were made. Flesch reading ease was 71. The final version of the Advance Care Planning Questionnaire consists of 66 items: 30 items were measured on a nominal scale, whilst 36 items were measured on a Likert-like scale; of which we were only able to validate 22 items, as the remaining 14 items were descriptive in nature. A total of 245 eligible participants were approached; of which 230 agreed to participate (response rate = 93.9 %). Factor analysis on the 22 items measured on a Likert-scale revealed four domains:

abstract PURPOSE Advance directives (AD) have been heralded as vehicles to promote patient autonomy and have been decried as ineffective. Efforts to improve advance care planning (ACP) and AD documents are wide ranging but have not been prospectively studied. MATERIALS AND METHODS In an institutional review board –approved, single-blind, randomized, controlled trial, we compared an interactive, educational ACP decision aid to standard ACP among patients with advanced cancer. We hypothesized that use of the decision aid would increase physician awareness of patients ’ health care wishes and increase physician adherence to patients ’ end-of-life wishes compared with standard ACP.