Preserving the integrity of personhood in people with advanced cancer: An in-depth qualitative study among patients, relatives, and care professionals.

Background: Every advanced cancer diagnosis brings enormous challenges to patients and their relatives on numerous levels: be it physical, practical, social challenges, or on a more personal level. While specific aspects have been researched before, an overarching approach is lacking.

Aim: To understand the lived experiences of people with advanced cancer, to identify gaps along the cancer care continuum, to identify potential opportunities for meaningful interventions and to develop a theoretical framework for practitioners and researchers.

End-of-Life Care Preferences of Patients with Advanced Urological Malignancies: An Explorative Survey Study at a Tertiary Referral Center.

Many people want to die at home, but it is often not possible because they do not share their wishes with family members. This study was conducted to find out the extent to which patients with advanced urological malignancies had wishes regarding their final stage of life, made arrangements accordingly, and communicated their wishes to relatives and health care professionals. We conducted a survey among advanced urological tumor patients during their clinic visit at a German university hospital using a 31-item questionnaire.

End-of-life wishes and care planning for patients with advanced skin cancer.

Background: Patients with advanced or metastatic skin cancer have a limited life expectancy and the majority die as a result of the tumor despite modern treatment options. The preferences of these patients concerning care during their last phase of life are currently unknown.

Patients And Methods: 150 patients with advanced skin cancer (AJCC/UICC stage III or IV) were interviewed using a structured questionnaire.

NEO-SPEAK: A conceptual framework that underpins breaking bad news in neonatology.

Objective: Breaking bad news in neonatology is a frequent and difficult challenge. Although there are guidelines for communicating with parents in pediatrics and neonatology, the specific framework for breaking bad news in neonatology has not been studied in more detail. Therefore, we aimed to identify determinants that are important for successful managing breaking bad news in neonatology from professionals' perspective and to develop a conceptual framework that underpins this challenging task.

How Safe Do Dying People Feel at Home? Patients' Perception of Safety While Receiving Specialist Community Palliative Care.

Background: There is a research gap regarding safety concerns of patients at the end of life. The aim of this study was, therefore, to explore whether patients under specialist community palliative care feel safe at home and which factors affect the perceived safety. Furthermore, we investigated if perception of safety is associated with different aspects of subsequent care.

Developing a care pathway for hospital-based advance care planning for cancer patients: A modified Delphi study.

Objectives: The objective of this study is to develop a care pathway for a hospital-based advance care planning service for cancer patients.

Methods: A web-based modified Delphi study consulted an expert panel consisting of a convenience sample of stakeholders including professionals with a special interest in advance care planning as well as a 'public and patient involvement group'. After generating ideas for core elements of a care pathway in the first round, numerical ratings and rankings informed the multi-professional research steering group's decision process eventually resulting in a final pathway.

Factors associated with hospitalisations of patients with chronic heart failure approaching the end of life: A systematic review.

Background: Heart failure has high mortality and is linked to substantial burden for patients, carers and health care systems. Patients with chronic heart failure frequently experience recurrent hospitalisations peaking at the end of life, but most prefer to avoid hospital. The drivers of hospitalisations are not well understood.

Measuring Quality of Life in Parkinson's Disease-A Call to Rethink Conceptualizations and Assessments.

Parkinson's disease (PD) is a chronic condition that considerably impacts the perception of quality of life (QoL) in both patients and their caregivers. Modern therapeutic approaches and social efforts strive at maintaining and promoting QoL. It has emerged as a fundamental parameter for clinical follow-up and poses one of the most important endpoints in scientific and economic evaluations of new care models.

': A qualitative evaluation of a collaborative advance care planning-approach.

Background: Impaired readiness may hinder purposeful advance care planning in cancer patients. To reduce barriers to participation in end-of-life decision-making, a collaborative intervention was developed combining a psycho-oncological approach of dignity-based and cognitive-behavioural interventions, followed by a standardised advance care planning-process.

Aim: To evaluate the novel collaborative advance care planning-approach by synthetising cancer patient and carer perspectives on communicational and relational effects.

Non-lesional treatment options for tremor in idiopathic Parkinson syndrome: a protocol for a systematic literature review.

Introduction: Idiopathic Parkinson syndrome (iPS) is one of the most common neurodegenerative disorders characterised by the triad of bradykinesia, rigidity and tremor. Tremor at rest predominantly at one side is often perceived by patients as severely disabling and yet ranges among the most difficult symptoms to treat. In medically refractory cases, lesional approaches have proven to be effective alternatives.

Patient Safety in Palliative and End-of-Life Care: A Text Mining Approach and Systematic Review of Definitions.

Background: Patient safety has gained an increasing profile as a crucial element of healthcare. However, not only is there little evidence on the relevance of the term in the palliative and end-of-life care literature but also a lack of a precise and uniform definition.

Method: With a text mining approach occurrence of the term patient safety was determined in all available abstracts of 10 palliative and end-of-life care journals.

Changes in Pain Medication Profile among Patients Admitted to Specialized Home Palliative Care in Relation to Referral Source: An Exploratory Study.

Pain is a common symptom leading to referrals to specialized home palliative care (SHPC) services and is known to affect patients' quality of life. To date, little is known about the impact of referral source on its management. To assess changes to pain medication profile in the course of SHPC and to identify potential differences in relation to referral source.

Management of constipation in patients with Parkinson's disease.

A considerable body of research has recently emerged around nonmotor symptoms in Parkinson's disease (PD) and their substantial impact on patients' well-being. A prominent example is constipation which occurs in up to two thirds of all PD-patients thereby effecting psychological and social distress and consequently reducing quality of life. Despite the significant clinical relevance of constipation, unfortunately little knowledge exists on effective treatments.