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To explore how a palliative approach to care is operationalized in primary care, through the description of clinical practices used by primary care clinicians to identify and care for patients with progressive life-limiting illness (PLLI).
Increasing numbers of people are living with PLLI but are often not recognized as needing a palliative approach to care. To meet growing needs, generalists such as family physicians will need to adopt a palliative approach to care in their own setting. Practical descriptions of a palliative approach in non-specialist settings have been lacking.
We conducted a qualitative descriptive study design using in-depth semi-structured interviews with 11 key informant participants (6 physicians, 3 nurse practitioners, 1 registered nurse, and 1 registered practical nurse) known to be providing comprehensive care to patients with PLLI in family practices in Ontario, Canada. We asked about their approach to identifying patients with PLLI and the strategies used in their care. We employed content analysis to develop themes.
Participants identified patients by functional decline, change in needs, increased acuity, and the specifics of a condition/diagnosis. Care strategies included concretizing commitment to care, eliciting goals of care, shifting care to the home, broadening team members including leveraging the support of family and community resources, and shifting to a ‘proactive’ approach involving increased follow-up, flexibility, and intensity.
Primary care providers articulated strategies for identifying and providing care to patients with PLLI that illuminate an upstream approach tailored to their setting.
The purpose of this study was to evaluate views and attitudes concerning the legality of assisted death and euthanasia in the UK and to identify the circumstances in which individuals would or would not consider assisted death.
Materials and methods:
The views of a sample of the general population in the UK were sought through the use of a mixed methods questionnaire open to the public for 3 weeks.
The responses of 117 participants were analysed using an SPSS MANOVA statistical test for quantitative data and an in-depth content coding analysis for qualitative responses.
The majority of respondents, 85·5%, believed that Physician-Assisted Death (PAD) should be legalised in the UK and that individuals should be able to choose when, 88%, and where, 88·9%, they die. Qualitative analysis revealed that more people would consider a PAD for a severe physical terminal illness over mental illness. There was no statistical significance for variables for quantitative data when considering overall demographics, professional and educational backgrounds of the respondents.
The majority of respondents in this study indicated that they believe assisted suicide should be made legal and that the option should be available for those who are terminally ill. Views indicated that if assisted dying was legal, it would allow terminally ill patients to die with dignity and without prolonging pain.
Environmental conditions have changed in the past of our planet but were not hostile enough to extinguish life. In the future, an aged Earth and a more luminous Sun may lead to harsh or even uninhabitable conditions for life. In order to estimate the life span of the biosphere we built a minimal model of the co-evolution of the geosphere, atmosphere and biosphere of our planet, taking into account temperature boundaries, CO2 partial pressure lower limits for C3 and C4 plants, and the presence of enough surface water. Our results indicate that the end of the biosphere will happen long before the Sun becomes a red giant, as the biosphere faces increasingly more difficult conditions in the future until its collapse due to high temperatures. The lower limit for CO2 partial pressure for C3 plants will be reached in 170(+ 320, − 110) Myr, followed by the C4 plants limit in 840(+ 270, − 100) Myr. The mean surface temperature will reach 373 K in 1.63(+ 0.14, − 0.05) Gyr, a point that would mark the extinction of the biosphere. Water loss due to internal geophysical processes will not be dramatic, implying almost no variation in the surface ocean mass and ocean depth for the next 1.5 billion years. Our predictions show qualitative convergence and some quantitative agreement with results found in the literature, but there is considerable scattering in the scale of hundreds of millions of years for all the criteria devised. Even considering these uncertainties, the end of the biosphere will hardly happen sooner than 1.5 Gyr.
The unique needs of caregivers of those with advanced heart failure (HF) are not effectively being met, and reports of physical and mental health challenges are common. The objective is to identify the current state of the literature related to family caregivers of persons with advanced HF, ascertain gaps that require further exploration, and provide preliminary practice recommendations based on the results.
Systematic review of quantitative and qualitative literature. A search of CINAHL, Medline, EMBASE, and PubMed identified 24 articles that met inclusion criteria. Data were analyzed using the constant comparison method and coded. Thematic analysis was used to develop themes.
Sixteen qualitative and seven quantitative studies met inclusion criteria. Analysis of these studies identified six key areas: (1) undertaking a journey in a state of flux, (2) gaining strength, (3) forgetting oneself along the way, (4) seeking out sources of support, (5) preparing for end of life, and (6) finding closure.
Significance of results
The healthcare system currently struggles to meet the care demands of patients with chronic conditions such as advanced HF; as such, informal caregivers are undertaking key roles in the management of symptoms and promotion of the health of those with advanced HF. When caregivers are not adequately prepared for their role, both patient and caregiver well-being is compromised; therefore, a deeper understanding of the caregiving experience could assist in identifying the cause of caregiver anxiety and result in the development of strategies to minimize its effects. Overall, this review will also contribute to improving the current practice when working with caregivers of persons with advanced HF and serve as a basis for development of evidence informed interventions in the future.
The life expectancy of people with Down syndrome (DS) has increased significantly over the last few decades. Consequently, they and their families face new ageing-related challenges, the first signs of which appear in people with DS around the age of 30. The goal of this study was to explore the perceptions of adults with DS regarding their own and their parents’ ageing and end of life, and to examine the views and concerns of the parents regarding the ageing of their children with DS. The unique approach used in our study was to convene not only the ageing people with DS but also their parents, to discuss the subject together. A total of 33 people with DS participated in the study. Most of them were interviewed with one or two parents. Participants with DS found it difficult to talk about their own old age and addressed the issue mainly through the decline in the functioning of an older person they knew. The parents emphasised the changes needed in terms of the official regulations, so as to ensure that their children with DS age with dignity and quality of life. Our study identifies the increasingly pressing need to prepare adults with DS for their own and their parents’ ageing and end of life in a timely manner.
The purpose of this study was to analyse the consistency and extent of palliative content across high-level guiding documents related to the care of persons residing in Canadian long-term care homes. A systematic search was conducted examining documents at the national level and across five provinces (Alberta, Ontario, Saskatchewan, Manitoba, and Quebec). Twenty-five documents were selected based on inclusion criteria from 273 documents identified in the systematic search. The majority of these documents were created nationally (48%) or in Ontario (28%). Documents varied in palliative topics discussed, and long-term care was discussed minimally. A minimal number of palliative care guiding documents were found. Long-term care specific documents were absent, and all documents lacked consistency on palliative topics. It is imperative that palliative principles are present and consistent in high-level documents in order to improve the quality of life and care for long-term care residents across Canada.
In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations—children between 1 and 12 years old—is undesirable. These children should have the same right to end their suffering as adults and newborn infants. An extended debate on pediatric euthanasia ensued, and currently the debate is ongoing as to whether legislation should be altered in order to allow pediatric euthanasia. An emerging major question regards the active ending of life in the context of palliative care: How does a request for active ending of life relate to the care that is given to children in the palliative phase? Until now, the distinction between palliative care and end-of-life decisions continues to remain unclear, making any discussion about their mutual in- and exclusiveness hazardous at best. In this report, therefore, we aim to provide insight into the relationship between pediatric palliative care and end-of-life decisions, as understood in the Netherlands. We do so by first providing an overview of the (legal) rules and regulations regarding euthanasia and active ending of life, followed by an analysis of the relationship between these two, using the Dutch National Guidelines for Palliative Care for Children. The results of this analysis revealed two major and related features of palliative care and end-of-life decisions for children: (1) palliative care and end-of-life decisions are part of the same process, one that focuses both on quality of living and quality of dying, and (2) although physicians are seen as ultimately responsible for making end-of-life decisions, the involvement of parents and children in this decision is of the utmost importance and should be regarded as such.
Introduction: Many patients with advanced or end-stage diseases spend months or years in need of optimal physical, spiritual, psychological, and social care. Despite efforts to provide community care, those with severe illness often present to emergency departments (EDs). This abstract presents preliminary results on the qualitative component of an ED-based mixed methods pilot study. The objective of this qualitative component is to develop and test an interview guide to collect qualitative data on physicians perceptions about unmet palliative care (PC) and end of life care (EOLC) needs in EDs. Methods: A scan of the literature on PC and EOLC in EDs was conducted to develop propositions about what might be expected through the clinician interviews, as well as an interview guide. The interview guide will be piloted with up to four ED physicians. During the interview each physician will describe a case where a PC patient had unmet care needs and the impacts they believe these unmet needs had on patients and families. Interview transcripts will be coded descriptively and then conceptually themed by the researcher who conducted the interview. Interpretations drawn from the interview data, with supporting quotations and comparison to initial propositions, will be presented to members of the research team with experience providing ED care, for further interpretation. Advice of a second trained qualitative researcher will be sought on the richness and relevance of data obtained and how the interview guide could be improved to elicit richer and/or more relevant data. A revised interview guide will be produced alongside rationales for why the proposed revisions will elicit richer data. Results: After reviewing 27 articles on PC and EOLC, propositions and an initial interview guide were developed based on themes from the literature and the study groups experiences. One of the primary results of this pilot work will be an enhanced understanding of PC and EOLC in our local ED context, as reflected in an interview guide revised to elicit richer data than achieved through the initial interview guide. Conclusion: The comparison between our propositions and the study findings will help identify how biases may have influenced interview questions and/or the interpretation of the data. This pilot work to develop an interview guide enhances the rigour of this qualitative work on unmet PC and EOLC needs in EDs.
Professional boundaries may help care staff to clarify their role, manage risk and safeguard vulnerable clients. Yet there is a scarcity of evidence on how professional boundaries are negotiated in a non-clinical environment (e.g. the home) by the home-care workforce in the context of complex care needs (e.g. dementia, end-of-life care). Through analysis of semi-structured interviews, we investigated the experiences of home-care workers (N = 30) and their managers (N = 13) working for a range of home-care services in the South-East and London regions of England in 2016–17. Findings from this study indicate that home-care workers and their managers have clear perceptions of job role boundaries, yet these are modified in dementia care, particularly at end of life which routinely requires adaptability and flexibility. As a lone worker in a client's home, there may be challenges relating to safeguarding and risk to both clients and workers. The working environment exacerbates this, particularly during end-of-life care where emotional attachments to both clients and their family may affect the maintenance of professional boundaries. There is a need to adopt context-specific, flexible and inclusive attitudes to professional boundaries, which reconceptualise these to include relational care and atypical workplace conventions. Pre-set boundaries which safeguard clients and workers through psychological contracts may help to alleviate to some extent the pressure of the emotional labour undertaken by home-care workers.
End-of-life (EoL) communication in long-term care (LTC) homes is often inadequate and delayed, leaving residents dying with unknown preferences or goals of care. Poor communication with staff contributes to families feeling unprepared, distressed, and dissatisfied with care. Family care conferences (FCCs) aim to increase structured systematic communication around goals and plans for the end of life. As part of the Strengthening a Palliative Approach to Care (SPA–LTC) project, FCCs were implemented in four LTC sites in Ontario, Canada. The purpose of this substudy was to examine FCC content and such guiding processes as documentation and multidisciplinary staff participation.
A total of 24 FCCs were held for residents with a Palliative Performance Scale score of 40% (nearing death). Data were collected from conference forms (i.e., Family Questionnaires, Care Plan Conference Summaries), site-specific electronic chart documents, and fieldnotes. Directed content analysis of data was informed by the Canadian Hospice Palliative Care Association's Square of Care Model, which describes eight domains of care: disease management, physical, psychological, social, practical, spiritual, EoL, and loss/bereavement.
The FCCs addressed an average of 71% of the content domains, with physical and EoL care addressed most frequently and loss/bereavement addressed the least. Two goals and five interventions were documented and planned on average per FCC. Examination of the processes supporting EoL communication found: (1) advantages to using FCC forms versus electronic charts; and (2) high levels of multidisciplinary participation overall but limited participation of personal support workers (PSWs) and physicians.
Significance of Results:
Communication around the end of life in LTC can be supported through the use of FCCs. Description of content and FCC processes provides guidance to persons implementing FCCs. Recommendations for tailoring conferences to optimize communication include use of specific conference forms, increased bereavement discussion, and further engagement of PSWs and physicians.
The working ages (25–65 years) are a period when most people have significant work, financial, and family responsibilities. A small proportion of working age people will face an expected premature death from cancer or other life-limiting illness. Understanding the impact an expected premature death has on this population is important for informing support. The current study set out to summarize research describing the effects that facing an expected premature death has on employment, financial, and lifestyle of working age people and their families.
A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment, and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children.
Fifteen quantitative and 12 qualitative studies were included. Two-thirds (n = 18) were focused on cancer. All studies identified adverse effects on workforce participation, finances, and lifestyle. Many patients were forced to work less or give up work/retire early because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with nonmalignant disease.
Significance of results:
Working age people facing an expected premature death and their families have significant unmet financial, employment, and lifestyle needs. Comparing and contrasting their severity, timing, and priority for people with nonmalignant conditions is required to better understand their unique needs.
Fear of life, fear of death, and fear of causing death form a combination that prevents reasoned changes in laws concerning end-of-life situations. This is shown systematically in this article using the methods of conceptual analysis. Prevalent fears are explicated and interpreted to see how their meanings differ depending on the chosen normative stance. When the meanings have been clarified, the impact of the fears on the motivations and justifications of potential legislative reforms are assessed. Two main normative stances are evoked. The first makes an appeal to individual self-determination, or autonomy, and the second to the traditional professional ethics of physicians. These views partly share qualifying elements, including incurability and irreversibility of the patient’s medical condition, proximity of death, the unbearable nature of suffering, and issues of voluntariness further shade the matter. The conclusion is that although many motives to change end-of-life laws are admirable, they are partly contradictory, as are calls for autonomy and appeals to professional ethics; to a degree that good, principled legislative solutions remain improbable in the foreseeable future.
This study aimed to (1) explore how palliative care in long-term care (LTC) addresses the tensions associated with caring for the living and dying within one care community, and (2) to inform how palliative care practices may be improved to better address the needs of all residents living and dying in LTC as well as those of the families and support staff. This article reports findings from 19 focus groups and 117 participants. Study findings reveal that LTC home staff, resident, and family perspectives of end-of-life comfort applied to those who were actively dying and to their families. Our findings further suggest that eliciting residents’ perceptions of end-of-life comfort, sharing information about a fellow resident’s death more personally, and ensuring that residents, families, and staff can constructively participate in providing comfort care to dying residents could extend the purview of end-of-life comfort and support expanded integration of palliative principles within LTC.
We used a web-based mixed methods survey (HowsYourHealth – Frail) to explore the health of frail older (78% age 80 or older) adults enrolled in a home-based primary care program in Vancouver, Canada. Sixty per cent of eligible respondents participated, representing over one quarter (92/350, 26.2%) of all individuals receiving the service. Despite high levels of co-morbidity and functional dependence, 50 per cent rated their health as good, very good, or excellent. Adjusted odds ratios for positive self-rated health were 7.50, 95 per cent CI [1.09, 51.81] and 4.85, 95 per cent CI [1.02, 22.95] for absence of bothersome symptoms and being able to talk to family or friends respectively. Narrative responses to questions about end of life and living with illness are also described. Results suggest that greater focus on symptom management, and supporting social contact, may improve frail seniors’ health.
As the older U.S. population becomes more ethnically diverse, there will be an increased need for culturally sensitive hospice care services. Hispanics often experience multiple barriers to quality end-of-life care services.
To address the underlying disparities in the cultural, emotional, and spiritual aspects of hospice care, the objective of the present qualitative study was to examine the emotional and spiritual needs of Hispanic patients' families while in hospice.
Semistructured in-person interviews were conducted with 29 Hispanic patients' families regarding their perceived experience of the hospice-based emotional and spiritual support received. Demographic information was collected on both the family member and the patient. Interviews were digitally recorded, transcribed, and analyzed using thematic content analysis.
Participant narratives fell into five main themes: (1) the influence of Hispanic culture in the relationship with hospice care providers; (2) types of social support received from hospice; (3) barriers to receiving support; (4) lack of health literacy regarding hospice care; and (5) cultural preferences for religious/spiritual support in hospice.
Significance of Results:
Our results provide insight into the specific emotional and spiritual needs of Hispanic families receiving hospice services. Our findings highlight that cultural values play an important role in the hospice care experiences of Hispanic families.
Objective: Multiple system atrophy (MSA) is an incurable neurodegenerative illness in which progressive symptoms, including stridor and acute laryngeal obstruction, occur. Advanced care planning and palliative care discussions in people living with MSA are not well defined. The aim of the present study is to evaluate advanced care planning and current practices in palliative care in MSA to identify opportunities for improving quality of care. Methods: The study is a retrospective chart review assessing the focus and timing of palliative care discussions in people living with MSA. Some 22 charts were reviewed. Results: A total of 22 patients were included. The most common symptoms were parkinsonism, orthostatic hypotension, GI/GU dysfunction, ataxia and gait impairment. Six patients had stridor. Of the palliative care discussions that took place, the most common topics were diagnosis, symptoms or symptom management, and prognosis. In the majority of patients who died and who had a do-not-attempt-resuscitation order, discussions surrounding resuscitation and goals of care took place only hours before death. Conclusions: There is no standard approach to advanced care planning and palliative care discussions in people living with MSA. We propose a framework to guide advanced care planning and palliative care discussions in MSA.
Researchers sought to determine the extent to which burden related to patients' symptom subtypes could predict informal hospice caregiver depression, and to illustrate the differences between caregivers who experience suicidal ideation and those who do not.
Informal caregivers recruited from a not-for-profit community-based hospice agency participated in a cross-sectional survey. Self-report questionnaires assessed caregiver burden associated with patient symptomatology (via a modified version of the Memorial Symptom Assessment Scale–Short Form) and caregiver depressive symptoms, including suicidal ideation (measured by the Patient Health Questionnaire–9). Multiple regressions evaluated the unique predictability of patients' symptom subtypes on caregiver depression. Exploratory analyses examined mean differences of study variables between participants who did and did not endorse suicidal ideation.
Caregiver burden related to patients' psychological symptoms accounted for significant variance in caregiver depression scores when controlling for burden related to physical symptoms. Among 229 caregivers (M age = 61.4 years), 12 reported suicidal ideation, where 6 of the 12 were male, despite male caregivers comprising less than 20% of the total sample.
Significance of results:
Burden associated with patients' psychological symptoms uniquely contributed to caregiver depression, further highlighting the clinical utility and necessity for hospice providers to address the emotional needs of patients and their caregivers alike. Developing clinical procedures to identify and respond to such needs would not only behoove hospice agencies, but it would likely enhance the caregiving experience holistically, which might be particularly imperative for male caregivers.
Our aim was to describe physicians' perceptions of the suffering of their patients who are dying with dementia, many of whom are incompetent with regard to decision making and have difficulty with communicating about the source of their distress and with identifying related factors.
We analyzed data from the nationally representative observational Dutch End-of-Life in Dementia (DEOLD) cohort study (2007–2011), which involved 34 long-term care facilities. A total of 103 physicians completed questionnaires about 330 patients with dementia who had died in a participating facility. Suffering during the last six hours of life was defined as “a patient being disturbed by or aware of symptoms,” “suffering until the end or death was a struggle”—all related to objective indicators of lack of comfort. We employed generalized estimating equation models to assess associations of suffering with the characteristics of physicians and patients, the patient's death, and the decision-making process.
In 13.8% of cases, the physician felt that the patient had suffered. An unexpected death and death with pneumonia were strongly (an odds ratios close to 6) associated with suffering, and suffering was also independently associated with the physician's perception of worse quality of end-of-life care, death with cardiovascular disease, a less experienced physician, no palliative sedation, and a younger patient.
Significance of Results:
Most patients with dementia did not suffer during their final hours of life, according to their physicians. There are a number of factors associated with suffering, among them death with pneumonia and unexpected death. We may not be able to have much influence on death from pneumonia, but quality of care and an unexpected death are reasonable targets for intervention. Earlier identification of the beginning of the dying process would allow time to better prepare for approaching death, which would provide a source of comfort.
The objective of this study was to examine the religious/spiritual beliefs of followers of the five major world religions about frequently encountered medical situations at the end of life (EoL).
This was a systematic review of observational studies on the religious aspects of commonly encountered EoL situations. The databases used for retrieving studies were: Ovid MEDLINE In-Process & Other Non-Indexed Citations, Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus. Observational studies, including surveys from healthcare providers or the general population, and case studies were included for review. Articles written from a purely theoretical or philosophical perspective were excluded.
Our search strategy generated 968 references, 40 of which were included for review, while 5 studies were added from reference lists. Whenever possible, we organized the results into five categories that would be clinically meaningful for palliative care practices at the EoL: advanced directives, euthanasia and physician-assisted suicide, physical requirements (artificial nutrition, hydration, and pain management), autopsy practices, and other EoL religious considerations. A wide degree of heterogeneity was observed within religions, depending on the country of origin, level of education, and degree of intrinsic religiosity.
Significance of results:
Our review describes the religious practices pertaining to major EoL issues and explains the variations in EoL decision making by clinicians and patients based on their religious teachings and beliefs. Prospective studies with validated tools for religiosity should be performed in the future to assess the impact of religion on EoL care.
Our aim was to explore preparation for the end of life (EoL) and life closure among persons with advanced metastatic lung cancer. Understanding quality of life through the lens of preparation and completion is important since the trajectory of lung cancer can be relatively short, often leading to application of cancer-directed therapies near death without the opportunity for advance planning or palliative care. Clinical research is needed to understand the kinds of distress specific to older adults with advanced lung cancer that are amendable to palliative care interventions.
We employed an exploratory cross-sectional design to examine psychosocial and existential concerns among a purposive sample (N = 30) of advanced lung cancer patients using the “end-of-life preparation” and “life completion” subscales of the Quality of Life at the End of Life (QUAL–E) questionnaire. Nonparametric methods were employed to analyze preparation, completion, global quality of life (QoL), and the associations among depressive symptoms, preparation, completion, and global QoL.
Higher scores on life completion were associated with better global QoL, and with items related to transcendence, communicative acts, and interpersonal relationships demonstrating important contributions. The perception of being a future burden on family members was the greatest concern within the preparation domain. Depressive symptoms were not associated with preparation, completion, or global QoL.
Significance of Results:
Psychosocial and existential issues contribute to QoL at the EoL among older adults with late-stage lung cancer during cancer-directed therapy, concurrent care, and hospice. The role of preparation, especially self-perceived burden, merits further research early on in the oncological setting. The preparation and life completion subscales of the QUAL–E are feasible clinical tools for facilitating dyadic communication about sensitive topics in the palliative care setting.