Palliative Care Plan Research Articles

Palliative and End-of-Life Care Conversations with Older People with Chronic Obstructive Pulmonary Disease in Croatia-A Pilot Study.

Despite the progressive nature of chronic obstructive pulmonary disease (COPD), its association of high morbidity and mortality with severe COPD, and the view that discussions between patients and clinicians about palliative care plans should be grounded in patients’ preferences, many older patients do not receive timely end-of-life care (EOLC) discussions with healthcare professionals (HPs), potentially risking inadequate care at the advanced stages of the disease. The aim of this pilot study was to evaluate EOLC discussions and resuscitation issues as a representative and illustrative part within EOLC in older patients with COPD in the University Hospital Center Osijek, Slavonia (Eastern Region), Croatia, as such data have not yet been explored. The study was designed as cross-sectional research. Two groups of participants, namely, patients at least 65 years old with COPD and healthcare professionals, were interviewed anonymously. In total, 83 participants (22 HPs and 61 patients with COPD) were included in the study. According to the results, 77% of patients reported that they had not had EOLC discussions with HPs, 64% expressed the opinion that they would like such conversations, and the best timing for such discussion would be during frequent hospital admissions. Furthermore, 77% of HPs thought that EOLC communication is important, but only 14% actually discussed such issues with their patients because most of them felt uncomfortable starting such a topic. The majority of older patients with COPD did not discuss advanced care planning with their HPs, even though the majority of them would like to have such a discussion. EOLC between HPs and older patients with COPD should be encouraged in line with patients’ wishes, with the aim to improve their quality of care by anticipating patients’ likely future needs in a timely manner and thereby providing proactive support in accordance with patients’ preferences.

The preferences of patients with chronic obstructive pulmonary disease are to discuss palliative care plans with familiar respiratory clinicians, but to delay conversations until their condition deteriorates: A study guided by interpretative phenomenological analysis

Background: Chronic obstructive pulmonary disease is associated with an uncertain trajectory, which challenges prognostication and means that most patients are not involved in advance care planning and do not receive palliative and end-of-life care. Aim: To understand the preferences of patients with chronic obstructive pulmonary disease for discussions about palliative and advance care planning with clinicians. Design: Semi-structured interviews were conducted with patients with chronic obstructive pulmonary disease. Data analysis was guided by principles of interpretative phenomenological analysis, of which symbolic interactionism and interpretation principles were employed throughout. Setting/Participants: A total of 33 British patients with chronic obstructive pulmonary disease at different stages of their disease trajectory were recruited. Results: Patients preferred to discuss palliative care with clinicians they perceived had greater levels of competency and authority in care and with whom they had an established relationship, usually a specialist. Patients favoured large amounts of information about treatments and care, but reported a lack of illness-related information and problems accessing appointments with clinicians. Consequently, patients deferred discussions to the future, usually once their condition had deteriorated significantly or planned to wait for clinicians to initiate conversations. This was not rooted in patient preferences, but related to clinicians’ lack of time, absence of an established relationship and belief that appointments were for managing current symptoms, exacerbations and disease factors rather than future care and preferences. Conclusion: Different perceptions, competing priorities and service rationing inhibit patients from initiating early discussions with clinicians, so palliative care conversations should be initiated by respiratory-expert clinicians who know the patient well. After a sudden deterioration in the patient’s condition may be a suitable time.

"How Long Can I Carry On?" The Need for Palliative Care in Parkinson's Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers.

Background:Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life.Objective:We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD.Methods:Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed.Results:We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided.Conclusion:These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

Sociocultural Factors Associated with Awareness of Palliative Care and Advanced Care Planning among Asian Populations.

Underutilization of palliative care (PC) among racial/ethnic minorities remains consistent despite projected demand. The purpose of this study was to examine knowledge of palliative care and advanced care planning (ACP) and potential variations among subgroups of Asian Americans. A survey was conducted to collect information about awareness, knowledge, and perspective of PC and ACP in the southwestern region of the United States, from October 2018 to February 2019. A total of 212 surveys were collected from the general public at such places as health fairs, New Year celebration events, church, and community centers; 154 surveys were included in the descriptive and multivariate data analysis. About 46.1% and 40.3% participants reported having heard of palliative care and advanced care planning, respectively. The average score of the Knowledge of Care Options Instrument (KOCO) was 6.03 out of 11 and the average score of the Palliative Care Knowledge Scale (PaCKS) was 4.38 out of 13. Among those who have heard of PC, both Chinese (odds ratio (OR) .19 [CI, .05, .73]) and Vietnamese (.22 [.06, .84]) were less likely to have heard of palliative care compared with Filipinos (1.00). Among those who have ever heard of advanced care planning, age (.60 [.43, .84]) was negatively and education level (1.91 [1.18, 3.08]) was positively associated with awareness about advanced care planning. The majority of survey participants preferred family members to serve as their power attorneys. The low levels of palliative care and advanced care planning awareness and knowledge in the diverse Asian groups living in the United States raise concerns and shed light on the critical need for culturally appropriate education programs.

Relational autonomy in end-of-life care ethics: a contextualized approach to real-life complexities

BackgroundRespect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients’ preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of ‘relational autonomy’ may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.Main bodyHere, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.ConclusionThis article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices.

Attitude and Barriers in Palliative Care and Advance Care Planning in Nonmalignant Chronic Lung Disease: Results From a Danish National Survey

Patients with chronic obstructive pulmonary disease and interstitial lung disease have a significant burden of symptoms. Many are not offered palliative care (PC). Our aim was to investigate the attitudes to and barriers for PC among physicians. A web-based survey was conducted among members of the Danish Respiratory Society. The questionnaire included contextual (gender, age, clinical experience, type of center, patient caseload) and outcome questions (knowledge and use of statements for PC and advance care planning [ACP], practice of communication about end-of-life decisions, practice for referral to PC, barriers regarding structural surroundings, clinical skills, and organization). One hundred fifty-six (45%) physicians responded. Median age was 40 - 49 years and 55% were female. Fifty-two percent were specialists; 71% worked at a university hospital. The majority of physicians (60%) reported barriers for discussions about PC and ACP; 63% reported lack of time, 52% lack of multidisciplinary staff settings, 63% reported the unpredictability of the prognosis, and 20% insufficient awareness of patient's culture, religion, or spirituality. Fewer specialists than nonspecialists reported barriers toward ACP. The majority had knowledge of guidelines in PC and ACP, but only a minority used these in daily clinical practice. The attitude toward PC and ACP conversations was positive and implementation was regarded as important, but only a minority performed these conversations in practice. Main barriers were lack of time and staff. Palliative care guidelines were known but only scarcely used. Structural changes at the organizational level to improve access to palliation for patients with nonmalignant chronic lung diseases are needed.

Lack of Truth-Telling in Palliative Care and Its Effects among Nurses and Nursing Students.

Unclear communication of inauspicious prognoses may disorientate both patients and their relatives, drastically jeopardizing the planning of palliative care. This paper considers the issue of truth-telling in the communicative problems of nurses and students of nursing with terminally ill patients. The fundamental objective is the analysis of the difficulties related to the lack of truth-telling and how it might impact their professional and personal lives. A qualitative study was realized, involving 47 participants, both nurses (25) and nursing students (22), working in palliative care units or in associations of volunteers for the assistance of oncological patients. The exploration was focused on the way they relate to patients who are not aware of their real health conditions and their consequences. Particular attention was paid to their opinions concerning what could be done in order to manage such problematic situations in the near future.

Care Right Where You Are: Treating in Place to Avoid an Emergency Department Visit or Hospitalization

Care Right Where You Are: Treating in Place to Avoid an Emergency Department Visit or Hospitalization

Analysis of Regional Palliative Care Strategies: Do Health Policies Influence the Development of Assistance Coverage?

In Spain, health competencies are decentralized, and each autonomous community implements its own plans. Our aim is to determine if the existence of regional palliative care plans implies an improvement in health care coverage. We reviewed regional palliative care plans published in Spain and analyzed the following variables: number and profile of palliative care resources, guidelines and objectives of implementation of resources of these plans, and compliance with European standards. The publication of regional plans is associated with an increase in specific resources in the following years. From 2004 to 2009, the implementation of plans in 6 autonomous communities was associated with an increase in palliative care resources compared to those without a strategy (odds ratio: 1.58, P = .02) or with a settled plan (odds ratio: 1.40, P = .07). The same phenomenon was observed between 2009 and 2015 in 4 autonomous communities and 2 autonomous cities compared with those without a strategy (odds ratio: 2.49, P = .001) and those that implemented a plan before 2009 (odds ratio: 2.62, P < .001). Updating and evaluating these regional plans are also associated with the growth of palliative care resources.

Population-based palliative care planning in Ireland: how many people will live and die with serious illness to 2046?

Background: All countries face growing demand for palliative care services. Projections of need are essential to plan care in an era of demographic change. We aim to estimate palliative care needs in the Republic of Ireland from 2016 to 2046. Methods: Static modelling of secondary data. First, we estimate the numbers of people who will die from a disease associated with palliative care need. We combine government statistics on cause of death (2007-2015) and projected mortality (2016-2046). Second, we combine these statistics with survey data to estimate numbers of people aged 50+ living and dying with diseases associated with palliative care need. Third, we use these projections and survey data to estimate disability burden, pain prevalence and health care utilisation among people aged 50+ living and dying with serious medical illness. Results: In 2016, the number of people dying annually from a disease indicating palliative care need was estimated as 22,806, and the number of people not in the last year of life aged 50+ with a relevant diagnosis was estimated as 290,185. Equivalent estimates for 2046 are up to 40,355 and 548,105, increases of 84% and 89% respectively. These groups account disproportionately for disability burden, pain prevalence and health care use among older people, meaning that population health burdens and health care use will increase significantly in the next three decades. Conclusion: The global population is ageing, although significant differences in intensity of ageing can be seen between countries. Prevalence of palliative care need will nearly double over 30 years, reflecting Ireland’s relatively young population. Older people living with a serious disease outnumber those in the last year of life by approximately 12:1, necessitating implementation of integrated palliative care across the disease trajectory. Urgent steps on funding, workforce development and service provision are required to address these challenges.

Population-based palliative care planning in Ireland: how many people will live and die with serious illness to 2046?

Background: All countries face growing demand for palliative care services. Projections of need are essential to plan care in an era of demographic change. We aim to estimate palliative care needs in Ireland from 2016 to 2046. Methods: Static modelling of secondary data. First, we estimate the numbers of people in Ireland who will die from a disease associated with palliative care need. We combine government statistics on cause of death (2007-2015) and projected mortality (2016-2046). Second, we combine these statistics with survey data to estimate numbers of people aged 50+ living and dying with diseases associated with palliative care need. Third, we use these projections and survey data to estimate disability burden, pain prevalence and health care utilisation among people aged 50+ living and dying with serious medical illness. Results: In 2016, the number of people dying annually from a disease indicating palliative care need was estimated as 22,806, and the number of people not in the last year of life aged 50+ with a relevant diagnosis was estimated as 290,185. Equivalent estimates for 2046 are 40,355 and 548,105, increases of 84% and 89% respectively. These groups account disproportionately for disability burden, pain prevalence and health care use among older people, meaning that population health burdens and health care use will increase significantly in the next three decades. Conclusion: The global population is ageing, although significant differences in intensity of ageing can be seen between countries. Prevalence of palliative care need in Ireland will nearly double over 30 years, reflecting Ireland’s relatively young population. People living with a serious disease outnumber those in the last year of life by approximately 12:1, necessitating implementation of integrated palliative care across the disease trajectory. Urgent steps on funding, workforce development and service provision are required to address these challenges.

Establishing a Denominator for Palliative Care Quality Metrics for Patients with Advanced Cancer.

Background: Measurement and monitoring of palliative care quality metrics for patients with advanced cancer promote early integration of palliative care within the oncology clinic. Accurately identifying the subset of advanced cancer patients within a population of cancer patients who would most benefit from palliative care is critical to the development of palliative care-relevant quality improvement activities. Methods: We evaluated two automated approaches to identifying patients with solid tumors sufficiently advanced to warrant discussions of palliative care and advanced care planning. These approaches included (1) pattern matching of words indicating an advanced cancer in oncology notes, radiology imaging, and active problem lists and (2) International Classification of Diseases (ICD-10) codes. We randomly selected 586 charts of patients with active cancer who are patients in our health system to establish a gold standard for advanced cancer through expert chart review. We evaluated the sensitivity and specificity of these automated approaches to identify advanced cancer patients compared with the gold standard. Results: We found that the highest performing pattern matching method had a specificity of 76% and a sensitivity of 81%. Using our final ICD-10 algorithm, we achieved a specificity of 92% and a sensitivity of 68%. We improved our sensitivity to 76% while maintaining our specificity at 91% when we excluded patients assigned to oncologists who predominantly see hematological malignancies. Conclusions: We achieved high specificity and reasonable sensitivity for an advanced cancer quality metric denominator using an ICD-10 algorithm within an academic oncology practice. This concrete definition will help inform quality improvement efforts locally and beyond.

Attitudes to Palliative Care in Patients With Neck-of-Femur Fracture-A Multicenter Survey.

Introduction:The mortality of patients with neck-of-femur (NOF) fractures remains high, with increasing recognition of a subgroup of patients with predictable mortality. The role of palliative care in this group is poorly understood and underdeveloped. This research aims to investigate current clinician attitudes toward palliative care for patients with NOF fracture, and explore processes in place for early identification for patients nearing the end of life.Materials and Methods:An online survey was constructed with reference to National Institute for Health and Clinical Excellence end-of-life guidelines (CG13) and distributed to multidisciplinary teams involved in the care of NOF fracture patients in 4 hospitals of contrasting size and location in the United Kingdom.Results:Forty health-care professionals with a broad range of seniority and roles responded. The palliative care team was felt to have several potential roles in the care of NOF fracture patients, but there was difference of opinion between specialties about what these were. A number of barriers to palliative referral were identified, including stigma and active surgical management. The majority (75%) felt that all NOF fracture patients should have a discussion about ceiling of care, with difference of opinion about who should do so, and when.Discussion:As the elderly population has grown, so too has the volume of NOF fracture patients. It is increasingly important to identify and escalate patients who have poor prognosis following hip fracture and ensure they benefit from palliative care where appropriate. This survey demonstrates a barrier to addressing the care of these patients and a lack of consensus on identification and referral to appropriate palliative care planning.Conclusions:There should be close communication between specialties with regard to requirements for palliative care in NOF fracture patients, with ongoing education and clear local and national guidance to ensure they receive the right care at the right time.

Palliative care plan of the patient with advanced heart failure

Palliative care plan of the patient with advanced heart failure

‘Take more laxatives was their answer to everything’: A qualitative exploration of the patient, carer and healthcare professional experience of constipation in specialist palliative care

Background: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. Aim: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. Design: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. Setting/participants: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. Results: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. Conclusion: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this.

Population-based palliative care planning in Ireland: how many people will live and die with serious illness to 2046?

Background: All countries face growing demand for palliative care services. Projections of need are essential to plan care in an era of demographic change. We aim to estimate palliative care needs in Ireland from 2016 to 2046. Methods: Static modelling of secondary data. First, we estimate the numbers of people in Ireland who will die from a disease associated with palliative care need. We combine government statistics on cause of death (2007-2015) and projected mortality (2016-2046). Second, we combine these statistics with survey data to estimate numbers of people aged 50+ living and dying with diseases associated with palliative care need. Third, we use these projections and survey data to estimate disability burden, pain prevalence and health care utilisation among people aged 50+ living and dying with serious medical illness. Results: In 2016, the number of people dying annually from a disease indicating palliative care need was estimated as 22,806, and the number of people not in the last year of life aged 50+ with a relevant diagnosis was estimated as 290,185. Equivalent estimates for 2046 are 40,355 and 548,105, increases of 84% and 89% respectively. These groups account disproportionately for disability burden, pain prevalence and health care use among older people, meaning that population health burdens and health care use will increase significantly in the next three decades. Conclusion: The global population is ageing, although significant differences in intensity of ageing can be seen between countries. Prevalence of palliative care need in Ireland will nearly double over 30 years, reflecting Ireland's relatively young population. People living with a serious disease outnumber those in the last year of life by approximately 12:1, necessitating implementation of integrated palliative care across the disease trajectory. Urgent steps on funding, workforce development and service provision are required to address these challenges.

ADVANCED ILLNESS AMONG ELDERLY NURSING HOME RESIDENTS WITH ALZHEIMER’S DISEASE AND RELATED DEMENTIA

Alzheimer’s disease and related dementia (AD/ADRD) are leading causes of mortality in the United States. Identifying advanced illness (AI) in NH residents is key for developing therapeutic and palliative care plans for end of life. We refined and extended existing measures of AI in NH residents with AD/ADRD and described patterns of survival for each measure. Using the Minimum Data Set (MDS; 2011 to 2013) linked to vital status (through 2016), we defined categories of AD/ADRD residents at AI onset: (1) those with ADRD, (2) and those with both, AD and ADRD. We estimated survival functions and multivariable duration models to describe patterns of survival from AI onset until death, stratified by AD/ADRD classifications, sex and functional status at AI onset, conditional on socio-demographics and co-morbidities. We limited our sample to adults ages >64 for whom we observed the incident AI assessment in the MDS. Median survival was 229 days for all classifications of AI, but higher for those with only ADRD (300 days). Survival declined substantially for residents with eating difficulties; to 122 days for residents with AD and ADRD. A stark survival decline (40 days) occurred among residents with shortness of breath. Across all AI classifications, survival was negatively associated with male sex, age, diabetes, substantial weight-loss and events such as heart failure. Depression, hypertension, and UTI were associated with small or insignificant increases in mortality risk. AI can be defined using MDS data, allowing for examination of policies designed to improve end of life care.

Improving Pediatric Palliative Care communication with Primary Care Providers: Development and implementation of a discharge letter writing system and palliative care plan

Improving Pediatric Palliative Care communication with Primary Care Providers: Development and implementation of a discharge letter writing system and palliative care plan

Improving Pediatric Palliative Care communication with Primary Care Providers: Development and implementation of a discharge letter writing system and palliative care plan

Introduction: Pediatric palliative care (PPC) seeks longitudinal relationships with patients facing life threatening conditions. Optimal PPC navigates between both inpatient and outpatient domains thus making the patient’s primary care physician (PCP) an integral member of the PPC care team. However, PPC to PCP communication is often lacking. This project sought to improve the communication between PPC teams and primary …

Dementia, End of Life, and Euthanasia: A Survey Among Dementia Specialists Organized by the Belgian Dementia Council.

Palliative care and Advance Care Planning (ACP) are increasingly recommended for an optimal management of late-stage dementia. In Belgium, euthanasia has been decriminalized in 2002 for patients who are "mentally competent" (interpreted as non-demented). It has been suggested that advance directives for euthanasia (ADE) should be made possible for dementia patients. This study presents the results of an internet survey among Belgian dementia specialists. In 2013, the Belgian Dementia Council (BeDeCo) organized a debate on end of life decisions in dementia. Participants were medical doctors who are specialists in the dementia field. After the debate, an anonymous internet survey was organized. The participation rate was 55%. The sample was representative of the BeDeCo members. The results showed consensus in favor of palliative care and ACP, although ACP is not systematically addressed in practice. Few patients with dementia have requested euthanasia, but for those who did the participants had agreed to implement it for some patients. A majority of participants (94%) believe that most patients and their families are poorly informed about euthanasia. Although most participants (77%) said they approved the Law on euthanasia, 65% said they were against an extension of the Law to allow ADE for dementia. Palliative care and ACP are clearly accepted by professionals, although a gap between recommendation and practice remain. Euthanasia is a much more debated issue, even if a majority of professionals are, in principle, in favor of the current Law and seem to disapprove with a Law change allowing ADE for dementia. A better education for both health professionals and the lay public will be a key element in the future.