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BackgroundInhalers are essential for managing asthma and chronic obstructive pulmonary disease; however, their environmental effects vary significantly. Pressurised metered-dose inhalers (pMDIs) contain potent greenhouse gases (GHGs), resulting in a much higher carbon footprint (CF) than non-propellant inhalers (NPIs). Consequently, reducing the use of pMDIs is seen as an important contribution to reduce the healthcare sector’s effect on climate change. This study analyses inhaler dispensing trends in Germany, estimates their resulting CF and quantifies the potential GHG savings from increased NPI use.MethodsDispensing data at the expense of statutory health insurances, covering nearly 90% of the German population, were analysed from 2013 to 2022 across three age groups. Annual dispensing shares and CF estimates based on life cycle assessment-derived CF values were calculated for four inhaler types: pMDIs with hydrofluorocarbon (HFC)-134a, pMDIs with HFC-227ea, dry powder inhalers (DPIs), and soft mist inhalers (SMIs). Two scenario calculations estimated the potential GHG savings.ResultsBetween 2013 and 2022, the total number of dispensed defined daily doses of inhalers increased by 14%, with no significant shift towards lower-emission inhalers (2013, 55% NPIs; 2022, 52% NPIs). Consequently, the total CF increased from 459 kilotonnes of carbon dioxide equivalent (kt CO2eq) in 2013 to 525 kt CO2eq in 2022 (+14%). More than 95% of the inhaler-related CF was attributable to pMDIs. A GHG-saving scenario assuming 85% NPI use among patients aged 10–79 years projected an annual CF reduction of 55% (288 kt CO2eq).ConclusionDespite climate neutrality goals, inhaler-related CF has continued to rise because of stable pMDI usage rates. The substantial potential for GHG reduction highlights the necessity and feasibility of a sustainable change in clinical prescription practice. Our insights could support the promotion of climate-friendly inhalers across other European countries with similar prescription patterns.

Background An increasing number of patients in the palliative phase of their disease are cared for at home by palliative home care services. A sense of security, normality of everyday life and symptom control are found to be active factors of quality of care in Specialized Palliative Home Care. Whether this also applies to General Palliative Home Care has not yet been systematically investigated. The aim of this study was to identify distinctions between General and Specialized Palliative Home Care from a healthcare professional’s perspective concerning those factors. Methods With a qualitative approach, we conducted 11 semi-structured interviews with healthcare professionals from different professional backgrounds in General and/or Specialized Palliative Home Care. Results In both General and Specialized Palliative Home Care, healthcare-professionals (HCP) found a sense of security (through availability ) to be most relevant for the patients. The majority saw aspects of normality of everyday life as a key component for high-quality palliative home care, especially having time for the patient and the family caregiver(s). However, statements about symptom control are mainly related to Specialized Palliative Home Care. The subcodes availability , having time and competence, symptom burden and financial resources were the main distinguishing factors between General and Specialized Palliative Home Care in sense of security , normality of everyday life and symptom control, respectively. Conclusions Our results provide the basis for a clearer definition of GPHC and SPHC and contribute to identifying factors for a transferal between the two services to provide best care for the patient. Distinguishing (sub)factors revealed challenges and short-term solutions. Providing (financial) incentives to guarantee time and availability in General Palliative Home Care would lead to more effective care.

The progressive nature of heart failure (HF) coupled with high mortality and poor quality-of-life (QoL) mandates greater attention to palliative care (PC) as a routine component of HF management. Limited evidence exists from randomized controlled trials supporting the use of interdisciplinary palliative care in the progressive course of HF. The early palliative care in heart failure trial (EPCHF) is a prospective, controlled, nonblinded, multicenter study of an interdisciplinary palliative care intervention in 200 patients with symptomatic HF characterized by NYHA ≥ 2. The 12-month EPCHF intervention includes monthly consultations by a palliative care team focusing on physical and psychosocial symptom relief, attention to spiritual concerns and advance care planning. The primary endpoint is evaluated by health-related QoL questionnaires after 12 months of treatment. First the functional assessment of chronic illness therapy palliative care (FACIT-Pal) score evaluating QoL living with a chronic disease and second the Kansas City cardiomyopathy questionnaire (KCCQ) measuring QoL living with heart failure will be determined. Secondary endpoints are changes in anxiety/depression (HADS), symptom burden score (MIDOS), spiritual well-being functional assessment of chronic illness therapy spiritual well-being scale (FACIT-Sp), medical resource and cost assessment. EPCHF will help evaluate the efficacy and cost-effectiveness of palliative care in symptomatic HF using a patient-centered outcome as well as clinical and economic endpoints. EPCHF is funded by the Bundesministerium für Bildung und Forschung (BMBF, 01GY17).

Aim: We find several interventions in palliative care to cover psychosocial needs and to relieve distress of patients. There is a growing interest in therapies using biographical approaches, but discussion about interventions is sparse, and there is no concept for comprehensive and sustainable provision. Research on interventions with a single biographical approach is available, but there is no systematic review that tests a range of interventions. Therefore, we look at all studies using biographical approaches for patients and/or caregivers. Methods: In May 2017, the electronic databases of Medline, PubMed, EMBASE, Central, and PsycINFO were searched for qualitative and quantitative empirical reports. Interventions for patients, dyads of patient and caregiver, and bereaved caregivers were included. Data analysis follows the guideline PRISMA. Results: Twenty-seven studies were included - 12 using a quantitative evaluation and 15 using a qualitative evaluation. Interventions using biographical approach are widespread and show broad variations in comprehension and performance. The scope of interest lays on patient and family in trajectory of illness and bereavement. The most common interventions used were life review, short life review, dignity therapy, and bereaved life review. Biographical approaches increase quality of life and spiritual well-being and reduce depression. Interventions show effects independently of the number of sessions or provider. Conclusions: Transferability of concepts seems limited due to the implications of culture on themes emerging in interventions. In some case, there were predicting factors for responders and nonresponders. Further research is needed.

Background: Caring for terminally ill patients with minor children can be very stressful. The perceived quality of life is significantly influenced by the Meaning in Life (MiL). No studies were found that focus on the prioritized special needs of this patient group. Objectives: The aim is to compare and contrast terminally ill parents with minor children and palliative care patients in Germany, in order to provide appropriate support beyond medical, nursing or therapeutic interventions. Methods: Terminally ill parents diagnosed were surveyed using a validated instrument ‘Schedule for Meaning in Life Evaluation (SMiLE)’. The study listed various areas that contribute to the MiL, followed by an evaluation of their importance and satisfaction levels. The researchers then compared these findings with data collected from palliative care patients. Results: In Germany, 54 patients, mostly female and with a mean age of 43, were included in this study between February 2017 and September 2020. The median age of the 96 children during the survey phase was 7 years. The comparison group consists of 100 palliative care patients in Germany; mostly aged 50 years and older. For terminally ill patients most important areas were in decreasing order family (100%), social relations (80%), leisure time (61%), nature/animals (39%) and home/garden (30%). Although the overall indices are close between both groups, there are significant and highly correlated differences between them. Parents felt limited by their illness in being a mother or father, as they wanted to be. Conclusion: The involvement with SMiLE led patients to consider their coping resources. The areas relevant to terminally ill parents differed from those relevant to palliative care patients. All participants identified family as the most important factor for MiL. The results suggest that evaluating MiL can serve as a coping strategy and help terminally ill parents with minor children. Plain language summary A comparison of answers to the meaning in life from seriously ill parents with young children with the answers of other seriously ill patients Background: Caring for seriously ill patients with young children can be very stressful. The quality of life depends on meaning in life. No studies were found that focus on the needs of this patients. Objectives: The aim was to explore similarities and differences between seriously ill parents with young children and palliative care patients in Germany to find the best way to support them. Methods: The Meaning in Life questions were used to find this out. Two researchers asked seriously ill parents about different things that make their lives meaningful. The researchers then compared the results with data from other seriously ill patients in need of palliative care. In Germany, 54 seriously ill parents with young children were interviewed between February 2017 and September 2020. The children were usually seven years old. The compared group consisted of 100 palliative care patients and was mostly older than 49 years. For seriously ill patients most important were family, social relations, leisure time, nature/animals, and home/garden. The values seemed similar, but there are clear differences between the groups. Parents felt their illness limited them in being a mother or a father. Conclusion: The questions helped patients helped to remember meaning in life and set goals. The things that mattered to seriously ill parents were different from those that mattered to palliative care patients. All participants said that family was the most important thing for meaning in life. The results show that thinking about meaning in life can help.

Background Improving the quality of life is one of the main objectives of palliative care. Biographical approaches are often used in combination with leaving a legacy in a range of different interventions such as Dignity Therapy or Life Review. This study presents an evaluation of audiobook biographies for palliative care patients with young children. Methods Young parents diagnosed with a life-limiting disease could participate and create an audiobook for their young children. The audiobook itself was recorded over several days and edited by qualified radio journalists. After providing informed consent participants were interviewed twice over the course of the intervention regarding expectations, concerns, motivation, and experiences. Interviews and notes were transcribed verbatim and were analyzed using content analysis. The contents of the audiobooks are not part of the evaluation. Results The data were collected from February 2017 till September 2020. Fifty-four patients with ninety-six children at a mean age of 7 years were included and created an audiobook. The main theme of all interviews were the children. Within this field identified main topics were legacy, motivation, usage, benefit, aims, difficulties and worries in descending order. All patients would recommend the intervention. Conclusion Creating an audiobook as a legacy to their children seemed to help the diseased parents to cope with their limited life span.

Background Increasing the quality of life with short interventions for vulnerable patients is one of the objectives of palliative care. Biographical approaches are used in a range of different interventions which may require considerable resources of staff time and energy. This study evaluated the feasibility of training hospice volunteers in biographical interviews of patients confronted with a life-limiting disease. For the purpose of this study, we evaluated resources such as time needed for training, coordination and supervision, outcome such as completion of the intervention in appropriate time and risks such as causing distress in patients or volunteers as major determinants of feasibility. Methods Nine volunteers from a hospice service attended an advanced training with an introduction to palliative care, biography work, interview techniques, transcribing and writing. Volunteers interviewed a patient and developed a written narrative from the interview. Volunteers completed a questionnaire before training and were interviewed at the end of the project. The interviews were audiotaped, transcribed, and evaluated using descriptive and qualitative content analysis. Results Patients provided positive feedback from the intervention. Volunteers felt that their involvement was personally rewarding and were moved by the courage and confidence of the patients. There were no systematic problems or negative experiences reported neither by volunteers nor by patients. Conclusions We found the use of volunteers for biography work with patients in palliative care feasible and effective in this study. Volunteers needed supervision and ongoing support in providing this intervention.

Background: Reminiscence is used in a range of different interventions in palliative care, for example, Dignity Therapy or Life Review. However, literature has focused mainly on the methodology, and little has been published on patients’ priorities and primary concerns. Objective: This study looks at themes emerging in a reminiscence intervention with patients confronted with a life-limiting disease. Interviews were audiotaped and transcribed verbatim. Transcripts were analysed using thematic analysis. Setting/subjects: Seventeen patients who were receiving palliative care at the University Hospital Bonn participated in interviews reviewing parts or phases of their lives. Results: Patients expressed satisfaction and a sense of well-being with the intervention. Major themes emerging in the interviews were the factors involved in the development and expression of personality, such as character-forming influences, self-image, self-awareness, and philosophy of life. Talking about personality was entangled with influences from growing up, qualification/job, partner/spouse, children, resources, twists of fate/crossroads, and coping. Conclusion: The topics emerging from the interviews differed from the scope of guiding questions in common reminiscence methods like Life Review or Dignity Therapy. The underlying motivation of patients seemed to be the search for identity and continuity in one’s life.

Background Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice. The family audiobook is a professionally supported, voluntary, free service that is unique in Germany. There is little research on digital memories for children. The study aims to understand how this service is used and its influence on children through responses of terminally ill parents and close persons. Methods An anonymous online survey, accessible between September 2023 and November 2023, was conducted among terminally ill parents and their close persons with support from the Family Audiobook Association in Germany. Analyses were carried out using SPSS. Results 186 respondents, 95 terminally ill parents, and 91 close persons completed the online survey. Almost all terminally ill parents felt eased to have recorded a family audiobook. The two groups showed differences in how they used the family audiobook and how often they listened to it. While some children listen to the family audiobook with their bereaved parents or friends, other children are not yet ready for this, according to the open-ended responses of terminally ill parents and close persons. Conclusions The family audiobook provides a valuable opportunity for terminally ill parents with dependent children under the age of 18 to tell their own biographical story, offer support to the bereaved in remembering, and preserve the voice of the deceased for the children. In addition, this approach could help healthcare professionals to reduce the stress associated with providing end-of-life care for terminally ill parents.

A sense of security is important in palliative home care. Yet, knowledge about which components contribute most to feeling secure from the patients' and family caregivers' perspectives, especially since the introduction of specialist palliative home care, is sparse. The goal of the current study was to determine the key components contributing to a sense of security and how they relate to each other as experienced by patients and family caregivers in specialist and generalist palliative home care. The current sub-study, as part of a larger study, was performed in different regions in Germany. Palliative care patients and family caregivers of at least 18 years of age, being cared for at home were interviewed using semi-structured interview guides following a three-factor model and analyzed by using a combined quantitative-qualitative-content approach. One hundred and ninty-seven patients and 10 carers completed interviews between December 2017 and April 2019. The majority of patients were diagnosed with an oncological disease. Sense of security was mentioned particularly often suggesting its high relevance. We identified nine subcategories that were all mentioned more frequently by specialist than generalist palliative home care recipients in the following order of priority and relation: (i) patient-centeredness: availability, provision of information/education, professional competence, patient empowerment, and trust (ii) organizational work: comprehensive responsibility, external collaboration, and internal cooperation, and (iii) direct communication. The work of specialist palliative home care services in particular was perceived as very effective and beneficial. Our findings confirm a previously developed three-factor model allowing for generalizability and revealed that availability was most important for improving the sense of security for effective palliative home care.