Levels and Determinants of Place-Of-Death Congruence in Palliative Patients: A Systematic Review

Introduction: Congruence, understood as the agreement between the patient's preferred place of death and their actual place of death, is emerging as one of the main variables indicating the quality of end-of-life care. The aim of this research was to conduct a systematic literature review on levels and determinants of congruence in palliative patients over the period 2010–2021.Method: A systematic review of the literature in the databases of PubMed, Scopus, Web of Science, PsycINFO, CINAHL, Cuiden, the Cochrane Library, CSIC Indexes, and IBECS. Information was extracted on research characteristics, congruence, and associated factors.Results: A total of 30 studies were identified, mainly of retrospective observational design. The congruence values varied substantially between the various studies, ranging from 21 to 100%. The main predictors of congruence include illness-related factors (functional status, treatments and diagnosis), individual factors (age, gender, marital status, and end of life preferences), and environmental factors (place of residence, availability of health, and palliative care services).Conclusion: This review, in comparison with previous studies, shows that treatment-related factors such as physical pain control, marital status, having a non-working relative, age, discussing preferred place of death with a healthcare professional, and caregiver's preference have been associated with higher levels of congruence. Depending on the study, other factors have been associated with either higher or lower congruence, such as the patient's diagnosis, gender, or place of residence. This information is useful for designing interventions aimed towards greater congruence at the end of life.

Satisfaction and Experience of Palliative Patients with 24/7 Hotline Service During the COVID-19 Pandemic in Saudi Arabia

Background: The COVID-19 pandemic prompted a number of shifts on healthcare. Conventional face-to-face visits were shifted during lockdown to virtual ones. Palliative care (PC) virtual visits have had high satisfaction rates, especially with patients in remote areas. Due to a number of factors, further studies are needed to develop tools that can be helpful and cost effective in improving patient’s quality of life. Objective: Our aim is to learn the main reasons palliative patients in Saudi Arabia sought help via calling the free 24/7 hotline and to discuss the hotline’s satisfaction and effectiveness in solving the palliative patient’s concerns during COVID-19. Methods: A cross-sectional sample analysis was obtained from 214 patients from different regions in Saudi Arabia. A total number of 843 calls were made to the 24/7 PC hotlines from the period of 17 April 2020 to 28 February 2021, shortly after COVID-19 pandemic began. The purpose of the call, the caller's relationship to the patient, the status of the complaint, and the satisfaction rate were collected at the end of the call through a voluntary phone survey. Results: The primary reasons that palliative patients called the hotline were: 30% for medication refills, (n=247), 24.7% for medical complaints, (n=205), 15.8% were for booking a new appointment (n=131). Patients themselves accounted for 27.8% of the callers and patient’s sons/daughters accounted for 51.3%. 85% of patients said that their issue had been resolved by the end of the call and 89% of our sample were happy with the service provided through the hotline. Conclusion: The 24/7 hotline service for PC patients in Saudi Arabia was successful in its application and resulted in a high level of satisfaction among a wide sample of participants. The main reasons palliative patients reached out were to request medication refills, seek assistance with a medical complaint, and to book a new appointment. Our hotline service effectively solved 85% of patients' issues.

Is trained communication about desire to die harmful for patients receiving palliative care? A cohort study

Background: Palliative patients frequently express a desire to die. Health professionals report uncertainty regarding potential risks of addressing it. Aim: We aim to evaluate effects of desire to die-conversations on palliative patients. Design: Within a prospective mixed-methods cohort study, we trained health professionals in dealing with desire to die. Afterwards, they held conversations about it with patients. Effects on depressiveness, hopelessness, wish to hasten death, death anxiety, patient-health professional-relationship, and will to live were evaluated at baseline (t0), 1 (t1), and 6 weeks afterwards (t2). Results were analyzed descriptively. Setting/participants: From April 2018 to March 2020, 43 health professionals asked 173 patients from all stationary and ambulatory palliative care settings (within 80 km radius) for participation. Complete assessments were obtained from n = 85 (t0), n = 64 (t1), and n = 46 (t2). Results: At t1, patients scored significantly lower on depressiveness (med = 8, M = 8.1, SD = 5.4) than at t0 (med = 9.5, M = 10.5, SD = 5.8) with Z = −3.220, p = 0.001 and Cohen’s d = 0.42. This was due to medium-severely depressed patients: At t1, their depressiveness scores decreased significantly (med = 9, M = 9.8; SD = 5.1) compared to t0 (med = 14, M = 15.2; SD = 3.9) with Z = −3.730, p ⩽ 0.000 and Cohen’s d = 1.2, but others’ did not. All other outcomes showed positive descriptive trends. Conclusions: Desire to die-conversations through trained health professionals do not harm palliative patients. Results cautiously suggest temporary improvement.

The GP’s perceived role and use of language concerning the existential dimension of palliative patients

Background: Palliative patients have to cope with their disease and impending death. Knowing what this means for a patient is crucial for person-centrered care. Although guidelines state it is a GP core task to explore existential issues of palliative patients, this is not standard practice.Aim: Exploring Dutch GPs’ perceived role regarding addressing the existential dimension of palliative patients, and which vocabulary is used.Design and Setting: Qualitative study among Dutch GPs. Participants were recruited by purposive sampling and snowballing, considering gender, working experience and world view.Method: Semi-structured in-depth interviews were performed, transcribed and analysed using content analysis.Results: Seventeen GPs participated. Three themes were identified: Language, Perceived role and Practice. Interviewees generally saw it as their role to pay attention to the existential dimension of their palliative patients. However, not all knew how to define this role, or how to refer patients with existential struggles to a spiritual counsellor. The multidisciplinary Dutch guideline ‘Existential and Spiritual Aspects of Palliative Care’ seemed largely unknown. Interviewees mostly fulfilled their role in an intuitive, pragmatic way. Questions such as “What does it mean for you to be seriously ill?” or “Do you have support from someone or something?” fitted daily practice.Conclusion: This study emphasizes the importance of basic GP education in exploring existential issues. The coexistence of a professionally obliged attention and an intuitive approach seems to be in conflict. We recommend enhancing collaboration between GPs and spiritual counsellors, appropriate training, and implementation of the relevant guideline on well-known platforms.

Scientific and practical approaches to optimizing the pharmaceutical supply of pediatric palliative patients with paralytic syndromes

Today, palliative care (PC) as a system has a complex structure with stable orderliness, interrelated elements and subsystems. The problem of providing PD with an appropriate level and quality to the children population is particularly acute; it is due to differences in the duration of provision, the necessity to provide educational services, and the socialization of palliative children. At the same time, an important aspect in achieving an appropriate quality of life for children and their families related to health is the assessment of not only medical and social, but also pharmaceutical provision. The aim of the work is to substantiate the approaches to optimization of pharmaceutical support of pediatric palliative patients with paralytic syndromes. The study objects were data from medical records, theactual consumption of medicines by pediatric patients of the Kharkiv healthcare institution where palliative care was provided, as well as data on the state registration of medicines in Ukraine. During the study, clinical and anamnestic, sociological, and marketing methods were used. Based on the results of the analysis of clinical and anamnestic data and the overall assessment of symptoms in a sample group of palliative children with paralytic syndromes, which was 115 people, pathological conditions that led to frequent or permanent distress were identified. Among them, the spastic syndrome prevailed in 100% of cases, the pain syndrome in 66% of cases, the convulsive syndrome in 59%, respectively, and digestive disorders were observed in 82.6% of patients in the sample. It was found that a large proportions of drugs for pharmacological correction of symptoms in the sample of patients were formed by antiepileptic drugs, laxatives and centrally acting muscle relaxants. The results of the marketing analysis of a definite segment of the pharmaceutical market showed a rather limited range of drugs for pediatric dosage forms and concentrations, and it on average ranged from 3.1% to 25% in the pharmacotherapeutic groups studied. Thus, the results obtained prove the need to develop mechanisms for optimizing the pharmaceutical supply of pediatric palliative patients, in particular, expanding the range of medicines approved for use in pediatric practice.

Stoma-related considerations in palliative patients

In the community there are about 200 000 people with a stoma. Some of these may have been performed as a palliative procedure to relieve a bowel obstruction, for example. Alternatively, the condition of the patient may have altered. A person with a stoma may, for many reasons, be approaching the end of life. There are a number of stoma-related issues that can occur at the end of life as a result of cancer treatment, such as skin around the stoma being damaged as a result of chemotherapy or changes in weight. In the palliative setting, patients may no longer be able to independently care for their stoma and may require assistance from the community nurse. Input from the community nurse may include information on changing stool consistency, as a result of disease progression or cancer treatment. Alternatively, nursing input might be necessary to train carers to perform stoma care. Community nurses can also provide knowledge to patients to improve understanding and decrease anxiety at the end of life.