La pratique de l'assistance spirituelle en milieu hospitalier consiste, selon les textes législatifs, à répondre aux besoins spirituels du patient. Mais l'attente qu'éprouve un patient en fin de vie ne peut se réduire ni à un pur besoin, ni à un pur désir. A partir d'un travail anthropologique, philosophique et d'analyse des dialogues d'accompagnement, les notions d'hospitalité, de silence, de soin, de désir et d'éveil éclairent cette recherche. La présence siliencieuse répond en premier lieu à un appel exprimé par le patient. Cette hospitalité est un espace ouvert à une reconnaissance mutuelle de la vulnérabilité présente dans l'altérité. Le soin spirituel met en jeu le courage d'un travail intérieur. Il représente un secours capable de faire basculer la souffrance en clarté même en fin de vie ; il est une invitation au repos, à la confiance. Seul le silence peut signifier au patient, la nature de ce souffle qui l'habite et le transcende. Dans son accueil de l'impuissance, la présence silencieuse, comme soin spirituel, révèle la capacité d'éveil de la vie du patient jusqu'au dernier souffle comme un don.
Background: Few studies have specifically assessed the scope, nature and challenges of palliative and end-of-life care in rural general practice. These knowledge gaps limit the development of evidence-based policies and services for patients in the last months of life. This study aimed to explore the perspectives of general practitioners (GPs) and other stakeholders on rural GPs' involvement and challenges in providing palliative and end-of-life care in regional Australia.
Methods: A qualitative study involving five focus groups with 26 GPs based in rural/regional Western Australia together with 15 individual telephone interviews with four GPs and 11 other stakeholders involved in end-of-life care across Australia.
Results: The rural GPs' central role in end-of-life care was recognized by the majority of participants but multiple challenges were also identified. Some challenges were comparable to those found in urban settings but others were more pronounced, including resource limitations and lack of training. Inappropriate payment models discouraged GPs' involvement in some aspects of end-of-life care, such as case conferences and home visits. Compared to GPs in urban settings, those in rural/regional communities often reported closer doctor-patient relationships and better care integration and collaboration. These positive aspects of care could be further developed to enhance service provision. Our study highlighted the importance of regular interactions with other professionals and patients in providing end-of-life care, but many GPs and other stakeholders found such interactions more challenging than the more "technical" aspects of care.
Conclusions: Rural/regional GPs appear to be disproportionately affected by inappropriate payment models and limited resources, but may benefit from closer doctor-patient relationships and better care integration and collaboration relative to urban GPs. Systematic collection of empirical data on GP management at end-of-life is required to build on these strengths and address the challenges.
OBJECTIVES: Older patients with end-stage renal disease are willing participants in advance care planning but just over 10% are engaged in this process. Nephrologists fear such conversations may upset patients and so tend to avoid these discussions. This approach denies patients the opportunity to discuss their end-of-life care preferences. Many patients endure medically intensive end-of-life scenarios as a result. This study aims to explore the rationale underpinning nephrologists' clinical decision-making in the management of older patients with end-stage renal disease and to make recommendations that inform policymakers and enhance advance care planning for this patient group.
METHODS: A qualitative interview study of 20 nephrologists was undertaken. Nephrologists were asked about their management of end-stage renal disease in older patients, conservative management, dialysis withdrawal and end-of-life care. Eligible participants were nephrologists working in Ireland. Five nephrologists participated in a recorded focus group and 15 nephrologists participated in individual digitally recorded telephone interviews. Semistructured interviews were conducted; thematic analysis was used to distil the results.
RESULTS: Three key themes emerged: barriers to advance care planning; barriers to shared decision-making; and avoidance of end-of-life care discussion.
CONCLUSIONS: Advance care planning is not an integral part of the routine care of older patients with end-stage renal disease. Absence of formal training of nephrologists in how to communicate with patients contributes to poor advance care planning. Nephrologists lack clinical experience of conservatively managing end-stage renal disease and end-of-life care in older patients. Key policy recommendations include formal communication skills training for nephrologists and development of the conservative management service.
Background: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID).
Method: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33).
Results: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP.
Conclusions: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.
Background: Palliative care (PC) is an essential component of comprehensive care of patients with intracerebral hemorrhage (ICH). In the present study, we sought to characterize the variability of PC use after ICH among US hospitals.
Methods: ICH admissions from hospitals with at least 12 annual ICH cases were identified in the Nationwide Inpatient Sample between 2008 and 2011. We used multilevel logistic regression modeling to estimate between-hospital variance in PC use. We calculated the intraclass correlation coefficient (ICC), proportional variance change, and median OR after accounting for individual-level and hospital-level covariates.
Results: Among 26,791 ICH admissions, 12.5% received PC (95% CI 11.5-13.5). Among the 629 included hospitals, the median rate of PC use was 9.1 (interquartile range 1.5-19.3) per 100 ICH admissions, and 150 (23.9%) hospitals had no recorded PC use. The ICC of the random intercept (null) model was 0.274, suggesting that 27.4% of the overall variability in PC use was due to between-hospital variability. Adding hospital-level covariates to the model accounted for 25.8% of the between-hospital variance observed in the null model, with 74.2% of between-hospital variance remaining unexplained. The median OR of the fully adjusted model was 2.62 (95% CI 2.41-2.89), indicating that a patient moving from 1 hospital to another with a higher intrinsic propensity of PC use had a 2.63-fold median increase in the odds of receiving PC, independent of patient and hospital factors.
Conclusions: Substantial variation in PC use after ICH exists among US hospitals. A substantial proportion of this between-hospital variability remains unexplained even after accounting for patient and hospital characteristics.
Objective: To improve understandings of the enablers and barriers to maintaining good quality of life for people dying, caring and grieving in rural areas.
Design and setting: In-depth interviews designed on participatory research principles were held with bereaved carers living in a small community in rural Tasmania. Participants had cared for someone until their death within the 3-year period prior.
Participants: Nineteen participants comprising 18 bereaved former carers and one person with a life-limiting illness, and all but four were over retirement age.
Study aim: To explore experiences of end-of-life care in a rural community.
Results: Participants discussed the challenges they experienced during end-of-life caring, including transport into the city for treatment, and access to basic and specialised services. However, they also reported positive aspects of formal and informal palliative care, and described experiences of personable, expert, flexible and innovative caregiving.
Conclusions: The rural location enabled personalised and innovative expressions of care. This research adds new insight into rural end-of-life palliation, as a complex intersection of supererogation, innovation and place-driven care.
Background: With growing expense in chronic illness and end-of-life (EOL) care, population-based interventions are needed to reduce the health care cost and improve patients' quality of life. The authors believe that promotion of palliative medicine is one such intervention and this promotion depends on the acceptance of palliative medicine concepts by health care professionals.
Aims of the studies: Perception of palliative medicine in chronic illness and in EOL care by health care professionals was learned in two studies carried out at a teaching community hospital 14 years apart.
Participants and methods: Voluntary and anonymous surveys were randomly distributed among physicians, nurses, and social workers/case managers. Participants in the two studies presented two different groups of health care providers.
Results of the studies: Results of the two studies were essentially similar. On most of the issues, respondents' perceptions were consistent with palliative medicine concepts and confidence in palliation grew over the 14-year period. The authors call this approach a "palliative attitude." Physicians with greater experience performed better in care planning. Younger physicians were more perceptive to withdrawal of care in futile cases. Participants' religion had no influence on perception of palliative medicine. Attendance of educational activities did not influence attitudes of health care professionals. Health care providers who favored involvement of palliative care teams in patients' management were better in care planning, interpretation of the DNR consent, use of opioids at the EOL, use of intensive care, and evaluation of the disease trajectory.
Conclusion: The authors conclude that direct interaction between palliative and interdisciplinary teams in clinical practice is the key factor in the education of health care professionals, in the development of a "palliative attitude," and in the promotion of palliative medicine.
Context: Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).
Objectives: The objective of this study was to examine features of subspecialty PPC involvement for children with AHD.
Methods: This is a retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016.
Results: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/nonstructural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year before. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n = 109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (P = 0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (P = 0.008).
Conclusion: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.
Cancer is the most common cause of mortality worldwide. Although recent advances of multiple modality cancer management have significantly improved the cure and control rates, a significant proportion of patients are still refractory to the standard and available treatments. Early initiation of palliative care can reduce cancer suffering, improve health-related quality of life and possibly prolong survival. It also allows patients and their caretakers to perceive the trajectory of their cancer, so that better and advanced care planning can be contemplated and implemented. The traditional beliefs and perceptions of cancer also differ significantly between the East and the West, which may also affect the preferential approach to palliative care. This review provides an overview of palliative care services in Hong Kong, as compared with other parts of the world. In addition, we shall also explore how cancer perceptions affect the decision-making on palliative care.
Objective: Little data about the management of drugs in terminally ill palliative care cancer patients is available. The present study aimed at describing the evolution of anticancer and non-anticancer treatments (NACTs) in cancer patients in palliative care units. The second objective was to identify factors leading to the medical decision to withdraw or not NACTs.
Methods: Data from 1,091 cancer patients hospitalized in palliative care units were prospectively collected in 2010-2011, through a multicenter, observational French cohort.
Results: The median overall survival after admittance in palliative care units was 15 days. Specific anticancer treatments were systematically stopped in the first 24 h in palliative care units, but for 4.5% of patients. Regarding NACTs, patients were heavily treated with strong opioids (74%), corticosteroids (51%), and antidepressants (21.8%) until death. Antiulcer agents (63.4%), antibiotics (25.7%), thrombosis prevention (21.8%), antidiabetics (7.6%), and transfusions (4%) were often also continuously prescribed. In multivariate analysis, ECOG PS 4 was an independent predictor of continuous prescription of morphine and an independent predictor of discontinuation of corticosteroids, proton-pump inhibitors, antidiabetics, and preventive anticoagulant therapy. Infection symptoms independently predicted continuous prescription of paracetamol. Paralysis and cancer palpable mass independently predicted corticosteroid withdrawal. Brain metastases independently predicted antiulcer withdrawal. Hemorrhage independently predicted preventive anticoagulant withdrawal. Availability to a venous access independently predicted paracetamol and antiulcer continuous prescriptions. Co-prescriptions independently predicted continuous prescriptions (antibiotics with antiulcer, antifungals with antibiotics) or withdrawal (preventive anticoagulant with antiplatelets and antifungals).
Conclusions: NACT prescription remained commonplace in terminally ill palliative cancer patients, although their benefit is questionable.
Purpose: This study aimed to clarify the experiences of caregivers desiring to refuse life-prolonging treatment for their elderly parents at the end of life.
Methods: A semi-structured interview was performed for four family caregivers who wanted to refuse life-prolonging treatment suggested by the physicians.
Results: In this study, four caregivers who refused life-prolonging treatment suggested by the physicians for their elderly parents completed semi-structured interviews. The obtained data were analyzed in relation to the theme "Experiences of caregivers who desire to refuse life-prolonging treatment for their elderly parents at the end of life." As a result, 38 subcategories and 12 categories were extracted.
Conclusions: Participants in this study initially had a negative view of life-prolonging treatment. However, they agonized over the decision when they received conflicting advice from the physicians. The participants indicated that physicians' advice and attitudes complicated their decisions to reject life-prolonging treatment for their elderly parents.
The purpose of this study was to investigate choice of and comfort with health care proxy among older adults (N = 240). Results indicated that choice of proxy follows a hierarchical compensation model. Perceived similarity regarding end-of-life preferences and political views were not associated with comfort with proxy; however, perceived similarity with regards to religious values was associated with comfort with proxy. Attempts to promote advance care planning and advance directives may benefit from emphasizing individuals’ choice and autonomy but also their opportunity to designate a health care proxy who they feel represents their religious values.
Background: An essential aspect of palliative care nursing is to conserve the dignity of the patient. A Dignity Care Intervention (DCI) has been developed in Scotland to facilitate this role for nurses. The DCI is now being adapted to a Swedish context (DCI-SWE) and a central step is to identify culturally relevant, dignity-conserving care actions. These care actions will be incorporated into the DCI-SWE. Therefore, the aim of this study was to suggest care actions for conserving dignity in palliative care from the perspectives of the patients, significant others (SOs), and health care professionals (HPs) in municipality care in Sweden.
Methods: This study used a descriptive design with a qualitative approach. Data from 20 participants were collected through semi-structured individual interviews with patients (n = 3), SOs (n = 4), two focus groups with nurses (n = 9) and one focus group with physicians (n = 4) in two Swedish municipalities. These data were deductively analysed using qualitative content analysis with the Chochinov model of dignity as framework.
Results: With the Chochinov model of dignity as a framework, care actions based on suggestions from the participants were identified and presented under three themes: Illness related concerns, Dignity conserving repertoire, and Social dignity inventory. The study found both specific concrete care actions and more general approaches. Such general approaches were found to be relevant for several dignity related issues as all-embracing attitudes and behaviours. However, these general approaches could also be relevant as specific care actions to conserve dignity in relation to certain issues. Care actions were also found to be linked to each other, showing the importance of a holistic perspective in conserving dignity.
Conclusions: As part of the adaption of the DCI from a Scottish to a Swedish context, this study added relevant care actions for collaborative planning of individualised care in mutual dialogues between nurses and those they care for. The adapted intervention, DCI-SWE, has the potential to help the nurses in providing palliative care of evidence-based quality.
BACKGROUND: Goal of palliative care is to experience a good death. Understanding the perceptions of elderly patients and their relatives about this issue should provide healthcare professionals with practical guidance in order to achieve this goal.
OBJECTIVES: To determine and compare the perceptions of elderly patients and relatives regarding wishes during their end-of-life (EOL) period.
METHODS: This was a cross-sectional study conducted at Siriraj and Srinagarind Hospital in Thailand from September 2017 to February 2018. A questionnaire was given to elderly patients and the relatives of them. The patients were asked to respond to the questions as though they were terminally-ill patients, and relatives were asked to imagine how elderly people would respond to the questions.
RESULTS: We recruited 608 elderly patients and 607 relatives. The most important issue in both groups was"receiving the full truth about their illnesses". The perceptions of the patients and relatives differed significantly in 8/13 areas covered in the questionnaire. Independent factors associated with preference for home death were elderly from Khon Kaen (adjusted odds ratio (AOR) 2.6;95%CI 1.7,4.1), previous self-employed/general work compared to individuals who did not work (AOR 0.5;95%CI 0.3,0.9), low educational level (AOR 2.3;95%CI 1.3,4.0), low income (AOR 1.7;95%CI 1.1,2.5), greater family size (AOR 1.7;95%CI 1.1,2.6) and dissatisfaction in life (AOR 2.5;95%CI 1.1,5.4).
CONCLUSION: Receiving the full truth about their illnesses was the most important issue for participants in both groups. The major differences between the two groups had to do with autonomy. Factors influencing place of death were location of patients, previous occupation, educational level, family income, family size and dissatisfaction in life.
General practitioners (GPs) play a key role in the timely diagnosis of dementia and also in advance care planning (ACP). They often have known patients and their families for decades and are familiar with their values and treatment preferences; they are, therefore, in a position to initiate the ACP process even before the appearance of the first symptoms of dementia and certainly following disclosure of the diagnosis. To do so, they should recognise whether patients are receptive to an ACP consultation or whether they might reject it for personal, social or cultural reasons. Under no circumstances should the patient or their family be coerced into making these provisions. In most countries, the current framework does not provide enough time and money for GPs to carry out actual ACP consultations completely on their own. There is evidence that specially trained health professionals are able to more effectively discuss treatment goals and limits of life-prolonging measures than GPs who are well acquainted with their patients. Consequently, we suggest that it will be the GPs' task to seize the right moment for starting an ACP process, to raise awareness of patients and their relatives about ACP, to test the patient's decision-making capacity and, finally, to involve appropriately trained healthcare professionals in the actual ACP consultation process. Care should be taken that these professionals delivering time-intensive ACP consultations are not only able to reflect on the patient's values but are also familiar with the course of the disease, the expected complications and the decisions that can be anticipated. The GP will ensure an active exchange with the ACP professional and should have access to the documentation drawn up in the ACP consultation process (treatment plan and advance directive including instructions for medical emergencies) as soon as possible. GPs as coordinators of healthcare provision should document appropriately all specialists involved in the care and ensure that treatment decisions are implemented in accordance with the patient's preferences for future care or the presumed will of the patient.
Background: Family members are involved in the decision-making process of advance care planning (ACP). However, there is limited evidence about how family caregiving situations affect engagement in ACP.
Objective: To understand how agreement on caregiving situations and caregiving burdens are predictive of engagement in ACP of older adults.
Design: Cross-sectional secondary data.
Setting/Subjects: Subjects were nationally representative of adults ages 65 or older from the National Health and Aging Trends Study.
Measurements: Informal engagement in ACP was measured based on whether respondents had discussed an end-of-life care option. The study involving formal engagement in ACP asked whether respondents have completed durable powers of attorney or living wills. Family members' agreement on caregiving situations and caregiving burdens were used to measure caregiving situations. We also include sociodemographic and health-related variables.
Results: Higher levels of disagreement between family members concerning care for older adults were associated with engagement in formal ACP (odds ratio [OR] = 0.5); there were higher levels of caregiver burdens with engagement in formal ACP (OR = 1.1). The factors of being age 85 or older (OR = 2.2) and having fallen down in the previous year (OR = 1.9) were also related to formal engagement in ACP. Being white and having high school diplomas were associated with both informal and formal engagement in ACP.
Conclusions: Caregiving situations may affect care recipients' decision-making regarding informal and formal engagement in ACP in different ways, suggesting different intervention strategies for different types of ACP.
Background: Breathlessness, a common symptom in advanced disease, is a distressing, complex symptom that can profoundly affect the quality of one's life. Evidence suggests that specialist palliative care breathlessness intervention services can improve physical well-being, personal coping strategies and quality of life. In the UK, the use of quality improvement methods is well documented in the National Health Service. However, within the independent hospice sector there is a lack of published evidence of using such methods to improve service provision.
Aim: The aim of this project was to reduce the waiting time from referral to service commencement for a hospice breathlessness service by 40%-from a median of 19.5 to 11.5 working days.
Methods: Using a quality planning and systems thinking approach staff identified barriers and blockages in the current system and undertook plan-do-study-act cycles to test change ideas. The ideas tested included offering home visits to patients on long-term oxygen, using weekly team 'huddles', streamlining the internal referral process and reallocating staff resources.
Results: Using quality improvement methods enabled staff to proactively engage in positive changes to improve the service provided to people living with chronic breathlessness. Offering alternatives to morning appointments; using staff time more efficiently and introducing accurate data collection enabled staff to monitor waiting times in real time. The reduction achieved in the median waiting time from referral to service commencement exceeded the project aim.
Conclusions: This project demonstrates that quality improvement methodologies can be successfully used in a hospice setting to improve waiting times and meet the specific needs of people receiving specialist palliative care.
The purpose of this article is to explain the strategies used in the "Set-up" phase of developing computer-based education on the care and management of incarcerated people who are older and/or dying. Public health nurses have an opportunity to support efforts in educating corrections staff to enhance health care for older and dying inmates. Such endeavors can promote social justice through inmates receiving evidence-based care that parallels that received by the community at large. "Set-up" is the first of four phases in the Institute for Healthcare Improvement's Framework for Going to Full Scale. Our design approach was threefold and included an environmental scan, a modified Delphi survey, and a usability study. An expert advisory board was consulted throughout the Set-up Phase. Participants for the Delphi Survey had expertise in geriatrics and corrections health care. Usability testing was conducted at two State Correctional Institutions. The Delphi Survey consisted of three Qualtrics surveys. Usability testing examined navigability; detected problems; observed time spent solving problems; identified problem severity; and developed recovery strategies. The Set-up established proof of concept, three prototype modules, and a specifications document to guide future programming. In addition, a Technology Niche Analyses® provided a preliminary commercialization plan (NIH, 2017). The Set-up phase has been instrumental in exposing the available infrastructure for dissemination of an educational product within corrections and may be a first step in addressing public health concerns on issues in aging. Commercial feasibility of the program and the need for continued research for Developing the Scalable Unit were established.
BACKGROUND AND PURPOSE: Huntington disease (HD) is a progressive neurodegenerative disorder. There are no HD-specific measures to assess for end-of-life (EOL) preferences that have been validated for clinical use. The purpose of this study is to demonstrate reliability and validity of three HD-specific EOL measures for use in and clinical research settings.
METHODS: We examined internal reliability, test-retest reliability, floor and ceiling effects, convergent and discriminant validity, known groups' validity, measurement error, and change over time to systematically examine reliability and validity of the HDQLIFE EOL measures.
RESULTS: Internal consistency and test-retest reliability were >0.70. The measures were generally free of floor and ceiling effects and measurement error was minimal. Convergent and discriminant validity were consistent with well-known constructs in the field. Hypotheses for known groups validity were partially supported (there were generally group differences for the EOL planning measures, but not for meaning and purpose or concern with death and dying). Measurement error was acceptable and there were minimal changes over time across the EOL measures.
CONCLUSIONS: Results support the clinical utility of the HDQLIFE EOL measures in persons with HD.
As part of the health care reforms and transformation project of the Vision 2030, a group of expert healthcare professionals was tasked with the development of a model of care for patients with life-shortening illnesses in Saudi Arabia. This Care Design Group (CDG 1-3) held a series of workshops and conducted surveys and online discussions to systematically document and develop a model of care. These interventions were aimed at achieving a national standard of care. This short article is a description of this very successful process of development.