Difficult but necessary conversations — the case for advance care planning (original) (raw)
Related papers
Advance care planning: Let's start sooner
PubMed, 2015
dvance care planning (ACP) is a communication process wherein people plan for a time when they cannot make decisions for themselves. It includes reflection, deliberation, and determination of a person's values and wishes or preferences for treatments at the end of life. Advance care planning should also include communication between an individual and his or her loved ones, future substitute decision makers (SDMs), and health care providers about these values and wishes. Evidence supports the effectiveness of ACP to improve the end-of-life experiences of patients and families. 1,2 Despite the known benefits of ACP, 3 often people with life-limiting illnesses facing an acute health crisis have not spoken up about their preferences. 4 It is estimated that approximately half of Canadian adults have engaged in some type of end-of-life discussion with family members or friends. 5 However, it is much less common for people to communicate their preferences to health care providers. In one Canadian survey, only 9% of respondents had discussed their preferences with health care providers. 5 Research on the extent of engagement in ACP in Canadian health care settings has been done largely from the acute care perspective. One study reported that the documented medical orders for life-sustaining treatments in Canadian hospitals reflected the expressed preferences of patients only one-third of the time. 4 This finding is surprising, as a study about family practices in Canada found that nearly all patients were familiar with the term do not resuscitate, 86% were interested in discussing wishes with their family physicians, and most wanted to have the discussion while they were healthy. 6 Clearly there is a communication gap between patients and health care providers.
The Singapore Family Physician, 2016
Advance Care Planning (ACP) was introduced as part of patient care in the acute hospitals in Singapore in 2010, and has been gaining traction among hospital providers and their patients. The Agency for Integrated Care (AIC) hopes to strengthen ACP training and awareness in the social and community care sectors. Primary care physicians play an important role to introduce ACP, provide relevant information based on patients' health status, and offer advice, encouragement and guidance to enhance understanding, reflection and discussion. They can help patients and their loved ones identify issues in coping with chronic diseases or possible life-threatening conditions. When done well, ACP can uphold the respect and dignity of patients and allow for patient-centric care continuation. ACP conversation often begins by listening and exploring the patient's story. Physicians should be attuned to their patients' fears, worries and concerns, and identify triggers for opportunistic discussions about ACP with them. With adequate ACP and communication training, primary care physicians are probably best placed for timely ACP initiation.
Palliative Medicine, 2018
Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients’ experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. Results: Of the 3555 articles found, 20 were included. We identified three themes in patients’ experiences with advance care planning. ‘Ambivalence’ refers to patients simultaneously experi...
British Journal of Cancer, 2018
BACKGROUND: We modified and evaluated an advance care planning (ACP) intervention, which had been shown to improve compliance with patient's end of life (EoL) wishes, in a different patient population. METHODS: Patients with incurable cancer, and a Family Member (FM), were randomised one-to-one to usual care or usual care plus an ACP intervention, between April 2014 and January 2017. Oncologists and participants were non-blinded. ACP was based on the Respecting Patient Choices model, with an offer to provide individualised ranges for typical, best-case and worst-case scenarios for survival time. Seven facilitators (two oncology nurses, two nurses and three allied health professionals) delivered the intervention within 2 weeks of study enrolment. The primary outcome measure, assessed by interviewing the FM 3 months after patient death, was the FM perception that the patient's wishes were discussed, and met. RESULTS: Six hundred and sixty-five patients from seven Australian metropolitan oncology centres were referred for consideration by their oncologists, 444 (67%) met the study inclusion criteria and were approached by a study researcher. Two hundred and eight patients (47%) and their FM entered the trial as dyads. Fifty-three (46%) dyads in the ACP group and 63 (54%) dyads in the usualcare group had complete primary outcome data (p = 0.16). Seventy-nine patients and 53 FMs attended an ACP discussion. Mean length of discussion was 57 min. FMs from 23 (43%) dyads allocated to ACP and 21 (33%) dyads allocated usual care reported the patient's EoL wishes were discussed and met (difference 10%, 95% CI: −2 to 8, p = 0.27). There were no differences in EoL care received, patient satisfaction with care; FM satisfaction with care or with death; or FM well being. Rates of palliative care referral were high in both groups (97% vs 96%). CONCLUSIONS: A formal ACP intervention did not increase the likelihood that EoL care was consistent with patients' preferences.
ESMO Clinical Practice Guidelines on palliative care: advanced care planning
Annals of oncology : official journal of the European Society for Medical Oncology / ESMO, 2014
Advanced care planning (ACP) is a process of reflection and communication about a person's values and wishes concerning future health issues and personal care preferences in the event that one becomes incapable of consenting to or refusing treatment or other care [1]. It is based on a person's priorities, beliefs and values and involves taking time to learn about end-of-life care options and services before a health crisis occurs. When one cannot express one's own wishes, professional care providers (e.g. treating physician, other health care professionals) and/or other people (e.g. family members, spouse) are forced to take decisions during such a crisis that may differ from the patient's wishes. The outcome of ACP must be written down in a source document or other means of communication tool. ACP can be discussed with family and friends, a substitute decision maker-the person who will be the spokesperson when one cannot express one's wishes-and professional care providers (e.g. treating physician, general practitioner, other health professionals). † Approved by the ESMO Guidelines Working Group: July 2014.
Advance care planning conversations with palliative patients: looking through the GP’s eyes
BMC Family Practice
Background: Although it is often recommended that general practitioners (GPs) initiate advance care planning (ACP), little is known about their experiences with ACP. This study aimed to identify GP experiences when conducting ACP conversations with palliative patients, and what factors influence these experiences. Methods: Dutch GPs (N = 17) who had participated in a training on timely ACP were interviewed. Data from these interviews were analysed using direct content analysis. Results: Four themes were identified: ACP and society, the GP's perceived role in ACP, initiating ACP and tailor-made ACP. ACP was regarded as a 'hot topic'. At the same time, a tendency towards a society in which death is not a natural part of life was recognized, making it difficult to start ACP discussions. Interviewees perceived having ACP discussions as a typical GP task. They found initiating and timing ACP easier with proactive patients, e.g. who are anxious of losing capacity, and much more challenging when it concerned patients with COPD or heart failure. Patients still being treated in hospital posed another difficulty, because they often times are not open to discussion. Furthermore, interviewees emphasized that taking into account changing wishes and the fact that not everything can be anticipated, is of the utmost importance. Moreover, when patients are not open to ACP, at a certain point it should be granted that choosing not to know, for example about where things are going or what possible ways of care planning might be, is also a form of autonomy. Conclusions: ACP currently is a hot topic, which has favourable as well as unfavourable effects. As GPs experience difficulties in initiating ACP if patients are being treated in the hospital, future research could focus on a multidisciplinary ACP approach and the role of medical specialists in ACP. Furthermore, when starting ACP with palliative patients, we recommend starting with current issues. In doing so, a start can be made with future issues kept in view. Although the tension between ACP's focus on the patient's direction and the right not to know can be difficult, ACP has to be tailored to each individual patient.
Asian Bioethics Review, 2018
Since the concept of the living wills emerged nearly 50 years ago, there have been practical challenges in translating the concept of an advance directive (AD) into documents that are clinically useful across various healthcare settings and among different patient populations and cultures. Especially, challenging has been the reliance in most ADs on pre-selected Bchoices^about specific interventions which either revolve around broad themes (e.g., Bprolong life / do not prolong life^) or whether or not to utilize particular interventions (e.g., CPR, mechanical ventilation), both of which about most laypersons know little and, more importantly, lacking context, prove to be of limited meaningfulness. Moreover, whether by foundational frame, decade-long misunderstanding in medicine and bioethics, or different societal customs, these ADs present decision-making responsibility for initiating, continuing, or withdrawing medical interventions as a patient responsibility-creating a burden for which most patients are unprepared-and hence reducing healthcare providers' responsibility to mere technical application or customer service. At our institution, significant efforts have focused on embracing the unique and complementary responsibilities of patients (articulating their goals, values, and preferences) and physicians (using medical expertise to reach patient goals) for enabling appropriate plans of care. This includes restructuring our AD form to more accurately represent patient's values as the frame within which physicians are responsible for determining appropriate care. Rather than specifying interventions, the AD makes patients responsible for specifying what matters to them as well as what they value in terms of function, interaction, and level of acceptable burden, thus providing clear goals for clinicians to pursue-or when goals are not reachable by available medical interventions, to acknowledge and allow for logical shifts to what may be achieved, including, in end of life contexts, care focused on respect and dignity.