Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care

Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68–100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research

Insight into the management of actinic keratosis: a qualitative interview study among general practitioners and dermatologists

_Background_ The increasing incidence of actinic keratosis (AK) is causing a large burden on healthcare systems. The current management of patients with AK seems to vary within and between primary and secondary care; however, an in-depth understanding of healthcare providers’ management of AK is currently lacking. Objectives To gain insight into the management of AK by exploring the underlying motives of current practices among general practitioners (GPs) and dermatologists in the Netherlands. _Methods_ A qualitative study was conducted consisting of semistructured individual interviews with 22 GPs and 18 dermatologists focusing on the underlying motives regarding AK management. A predefined topic list was used. All interviews were audiotaped, transcribed verbatim and inductively analysed by two researchers drawing on elements of grounded theory. _Results_ GPs reported conducting limited proactive clinical assessments of cutaneous photodamage due to a perceived lack of value, varying in their method of diagnosing AK. They mainly applied cryotherapy or referred to secondary care due to lack of experience, varying in their applications and providing mostly patient-driven follow-up care. They also reported a great need for guidelines due to a lack of knowledge of AK management. Dermatologists indicated pursuing proactive clinical assessments of cutaneous photodamage and the goal of providing guideline-driven AK care. However, patient preferences still largely influence both treatment choices and follow-up regimens. Furthermore, dermatologists reported the need to improve AK and skin cancer management in primary care. _Conclusions_ For AK care to become more standardized and uniform in Dutch primary care, the implementation of guidelines and (continuing) education are needed to address the commonly reported barriers of lack of value, experience and knowledge among GPs. For efficient use of care among dermatologists, shared decision-making tools along with adequate (framing of) patient information may be useful

Ventilation and outcomes following robotic-assisted abdominal surgery: an international, multicentre observational study

Background: International data on the epidemiology, ventilation practice, and outcomes in patients undergoing abdominal robotic-assisted surgery (RAS) are lacking. The aim of the study was to assess the incidence of postoperative pulmonary complications (PPCs), and to describe ventilator management after abdominal RAS. Methods: This was an international, multicentre, prospective study in 34 centres in nine countries. Patients ≥18 yr of age undergoing abdominal RAS were enrolled between April 2017 and March 2019. The Assess Respiratory Risk in Surgical Patients in Catalonia (ARISCAT) score was used to stratify for higher risk of PPCs (≥26). The primary outcome was the incidence of PPCs. Secondary endpoints included the preoperative risk for PPCs and ventilator management. Results: Of 1167 subjects screened, 905 abdominal RAS patients were included. Overall, 590 (65.2%) patients were at increased risk for PPCs. Meanwhile, 172 (19%) patients sustained PPCs, which occurred more frequently in 132 (22.4%) patients at increased risk, compared with 40 (12.7%) patients at lower risk of PPCs (absolute risk difference: 12.2% [95% confidence intervals (CI), 6.8–17.6%]; P<0.001). Plateau and driving pressures were higher in patients at increased risk, compared with patients at low risk of PPCs, but no ventilatory variables were independently associated with increased occurrence of PPCs. Development of PPCs was associated with a longer hospital stay. Conclusions: One in five patients developed one or more PPCs (chiefly unplanned oxygen requirement), which was associated with a longer hospital stay. No ventilatory variables were independently associated with PPCs. Clinical trial registration: NCT02989415

Nocturnal seizure detection:What are the needs and expectations of adults with epilepsy receiving secondary care?

Introduction: Seizure detection devices (SDDs) may lower the risk of sudden unexpected death in epilepsy (SUDEP) and provide reassurance to people with epilepsy and their relatives. We aimed to explore the perspectives of those receiving secondary care on nocturnal SDDs and epilepsy in general. Materials and methods: We recruited adults with tonic or tonic-clonic seizures who had at least one nocturnal seizure in the preceding year. We used semi-structured interviews and questionnaires to explore their views on SDDs and their experiences of living with epilepsy. None of the participants had any previous experience with SDDs. We analyzed the data using qualitative content analysis. Results: Eleven participants were included with a nocturnal seizure frequency ranging from once every few weeks to less than once a year. Some participants experienced little burden of disease, whereas others were extremely impaired. Opinions on the perceived benefit of seizure detection varied widely and did not always match the clinical profile. Some participants with high SUDEP risk displayed no interest at all, whereas others with a low risk for unattended seizures displayed a strong interest. Reasons for wanting to use SDDs included providing reassurance, SUDEP prevention, and improving night rest. Reasons for not wanting to use SDDs included not being able to afford it, having to deal with false alarms, not having anyone to act upon the alarms, having a relative that will notice any seizures, not feeling like the epilepsy is severe enough to warrant SDD usage or not trusting the device. Conclusions: The interest in nocturnal seizure detection varies among participants with low seizure frequencies and does not always match the added value one would expect based on the clinical profile. Further developments should account for the heterogeneity in user groups.</p

How to Deal With Relatives of Patients Dying in the Hospital? Qualitative Content Analysis of Relatives' Experiences

Context. Hospital care and communication tend to be focused on the individual patient, and decision making is typically based on the principle of individual autonomy. It can be questioned whether this approach is adequate when a patient is terminally ill. Objectives. Our aim was to explore the involvement and experiences of relatives in the hospital during the patient's last phase of life. Methods. This study was embedded in a retrospective questionnaire study on the quality of dying of a consecutive sample of patients who died in a general university hospital in The Netherlands. We performed a secondary qualitative analysis of relatives' comments and answers to open questions. Relatives of 951 deceased adult patients were asked to complete a questionnaire; 451 questionnaires were returned and analyzed for this study. Results. Relatives expressed a need for 1) comprehensible, timely, and sensitive information and communication, 2) involvement in decision making, 3) acknowledgment of their position, 4) being able to trust health care staff, and 5) rest and privacy. When relatives felt that their role had sufficiently been acknowledged by health care professionals ( HCPs), their experiences were more positive. Conclusion. Relatives emphasized their relation with the patient and their involvement in care of the patient dying in the hospital. An approach of HCPs to care based on the concept of individual autonomy seems inadequate. The role of relatives might be better addressed by the concept of relational autonomy, which provides HCPs with opportunities to create a relationship with relatives in care that optimally addresses the needs of patients. (C) 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved