Heart failure is a complex entity, with high morbidity and mortality. The clinical course and outcome are uncertain and difficult to predict. This document, instigated by the Heart Failure and Geriatric Cardiology Working Groups of the Spanish Society of Cardiology, addresses various aspects related to palliative care, where most cardiovascular disease will eventually converge. The document also establishes a consensus and a series of recommendations with the aim of recognizing and understanding the need to implement and progressively apply palliative care throughout the course of the disease, not only in the advanced stages, thus improving the care provided and quality of life. The purpose is to improve and adapt treatment to the needs and wishes of each patient, who must have adequate information and participate in decision-making.
Aggressive resource utilization for patients with cancer at the end of life has been associated with poor outcomes for patients and their families. To our knowledge, no previous studies have characterized resource utilization as a proxy for quality end-of-life care in hospitalized patients awaiting discharge to hospice by physician and advanced practice providers (APPs). We conducted a retrospective cohort study to examine resource utilization and the quality metrics for end-of-life care in patients at Memorial Sloan Kettering Cancer Center from the date of hospice decision to discharge. Patients under the care of APP teams were less likely to receive laboratory testing (50% vs 59%, P = .046) and received fewer tests than those with house staff teams, though performance on end-of-life quality metrics was similar. Our findings suggest APPs may improve quality of end-of-life care by avoiding unnecessary or aggressive measures compared to house staff.
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. However, teams with specific expertise for children are not available all over the country. Families without this support need to use the hospital to get specialists' assistance.
Objective: To explore how parents of children and adolescents with life-limiting conditions think about the hospital as place of care.
Design: We conducted narrative interviews with parents and analyzed these by using a grounded theory approach.
Setting/Subjects: we interviewed 13 parents (4 fathers and 9 mothers) of 9 children with life-limiting conditions receiving or having received pediatric specialized outpatient palliative care (SOPPC) in Germany.
Results: Parents reported feelings of vulnerability, heteronomy, and disablement associated with hospital care and were afraid that their children's needs were not adequately addressed. These perceptions resulted from hospitals' standardized care structures and over- and undertreatment, a lack of continuity of care, hospital pathogens, a lack of a palliative mindset, insensitive hospital staff, the exclusion of parents from the treatment and parental care of their children, the hospital stay as a permanent state of emergency, and a waste of limited life time.
Conclusion: Pediatric hospital staff needs training in identifying and responding to palliative care needs. SOPPC structures should be expanded all over Germany to meet the needs of families of children with life-limiting conditions.
PURPOSE: To examine quality indicators of end-of-life (EOL) care among privately insured people with cancer in Brazil.
METHODS: We evaluated medical records linked to health insurance databank to study consecutive patients who died of cancer. We collected information about demographics, cancer type, and quality indicators of EOL care including emergency department (ED) visits, intensive care unit (ICU) admissions, chemotherapy use, medical imaging utilization, blood transfusions, home care support, days of inpatient care, and hospital deaths.
RESULTS: We included 865 patients in the study. In the last 30 days of life, 62% visited the ED, 33% were admitted to the ICU, 24% received blood transfusions, and 51% underwent medical imaging. Only 1% had home care support in the last 60 days of life, and 29% used chemotherapy in the last 14 days of life. Patients had an average of 8 days of inpatient care and 52% died in the hospital. Patients with advanced cancer who used chemotherapy were more likely to visit the ED (78% vs 59%; P < .001), undergo medical imaging (67% vs 51%; P < .001), and die in the hospital (73% vs 50%; P = .03) than patients who did not use chemotherapy. In the multivariate analysis, chemotherapy use near death and advanced cancer were associated with ED visits and ICU admissions, respectively (odds ratio >1).
CONCLUSION: Our study suggests that privately insured people with cancer receive poor quality EOL care in Brazil. Further research is needed to assess the impact of improvements in palliative care provision in this population.
Background: To identify the necessary care for dying patients in intensive care units (ICUs), we designed a retrospective study to evaluate the quality of dying and death (QODD) experienced by the surrogates of patients with medical illness who died in the ICU of a tertiary referral hospital.
Methods: To achieve our objective, the authors compared the QODD scores as appraised by the relatives of patients who died of cancer under hospice care with those who died in the ICU. For this study, a Korean version of the QODD questionnaire was developed, and individual interviews were also conducted.
Results: Sixteen people from the intensive care group and 23 people from the hospice care group participated in the survey and completed the questionnaire. The family members of patients who died in the ICU declined participation at a high rate (50%), with the primary reason being to avoid bringing back painful memories (14 people, 87.5%). The relatives of the intensive care group obtained an average total score on the 17-item QODD questionnaire, which was significantly lower than that of the relatives of the hospice group (48.7±15.5 vs. 60.3±14.8, P=0.03).
Conclusions: This work implies that there are unmet needs for the care of dying patients and for the QODD in tertiary hospital ICUs. This result suggests that shared decision making for advance care planning should be encouraged and that education on caring for dying patients should be provided to healthcare professionals to improve the QODD in Korean ICUs.
While end-of-life (EOL) care has been a relatively common option for patients with terminal cancer, the utilization of EOL care in Alzheimer disease and other dementias has become available more recently. By the time end-stage dementia is present, the clinicians and caregivers become faced with multiple clinical issues-their inability to provide subjective complaints of pain and discomfort, behavioral symptoms, delirium, food refusal, and so on. In addition to providing quality EOL care to the patients, clinicians need to work with their families in an open and empathic manner, assuring that their loved ones will receive supportive measures to keep them comfortable.
Background: Communication between clinicians and patients fundamentally shapes the experience of serious illness. There is increasing recognition that health systems should routinely implement structures and processes to assure high-quality serious illness communication (SIC) and measure the effectiveness of their efforts on key outcomes. The absence, underdevelopment, or limited applicability of quality measures related specifically to SIC, and their limited application only to those seen by specialist palliative and hospice care teams, hinder efforts to improve care planning, service delivery, and health outcomes for all seriously ill patients.
Objective: We convened an expert stakeholder symposium and subsequently surveyed participants to consider challenges, opportunities, priorities, and strategies to improve quality measurement specific to SIC. Results: We identified several barriers and opportunities to improving quality measurement of SIC. These include issues related to the definition of SIC, methodological challenges related to measuring SIC and related outcomes, underutilization of technologies that can facilitate measurement, and measurement development, and dissemination. Conclusions: Patients, clinicians, and health systems increasingly align around the importance of high-quality communication in serious illness. We offer recommendations for various stakeholder groups to advance SIC quality measurement. Enthusiasm and a sense of urgency among health systems to drive and measure communication improvements inform our proposal for a set of example measures for implementation now.
BACKGROUND: Many hospitalized older adults require family surrogates to make decisions, but surrogates may perceive that the quality of medical decisions is low and may have poor psychological outcomes after the patient's hospitalization.
OBJECTIVE: To determine the relationship between communication quality and high-quality medical decisions, psychological well-being, and satisfaction for surrogates of hospitalized older adults.
DESIGN: Observational study at three hospitals in a Midwest metropolitan area.
PARTICIPANTS: Hospitalized older adults (65+ years) admitted to medicine and medical intensive care units who were unable to make medical decisions, and their family surrogates. Among 799 eligible dyads, 364 (45.6%) completed the study.
MAIN MEASURES: Communication was assessed during hospitalization using the information and emotional support subscales of the Family Inpatient Communication Survey. Decision quality was assessed with the Decisional Conflict Scale. Outcomes assessed at baseline and 4-6 weeks post-discharge included anxiety (Generalized Anxiety Disorder-7), depression (Patient Health Questionnaire-9), post-traumatic stress (Impact of Event Scale-Revised), and satisfaction (Hospital Consumer Assessment of Healthcare Providers and Systems).
KEY RESULTS: The mean patient age was 81.9 years (SD 8.32); 62% were women, and 28% African American. Among surrogates, 67% were adult children. Six to eight weeks post-discharge, 22.6% of surrogates reported anxiety (11.3% moderate–severe anxiety); 29% reported depression, (14.0% moderate–severe), and 14.6% had high levels of post-traumatic stress. Emotional support was associated with lower odds of anxiety (adjusted odds ratio [AOR] = 0.65, 95% CI 0.50, 0.85) and depression (AOR = 0.80, 95% CI 0.65, 0.99) at follow-up. In multivariable linear regression, emotional support was associated with lower post-traumatic stress (ß = -0.30, p = 0.003) and higher decision quality (ß = -0.44, p < 0.0001). Information was associated with higher post-traumatic stress (ß = 0.23, p = 0.022) but also higher satisfaction (ß = 0.61, p < 0.001).
CONCLUSIONS: Emotional support of hospital surrogates is consistently associated with better psychological outcomes and decision quality, suggesting an opportunity to improve decision making and well-being.
Objective: To assess appropriateness of end-of-life treatments provided to actively dying patients attending the emergency department of a primary care hospital.
Methods: Retrospective cohort study of patients who died in the emergency department of a French primary care hospital between January 2014 and January 2017. The deceased were identified through the admissions register. Then, electronic medical records were screened for bio-demographic data, data relative to decisions to withhold or withdraw treatments, to diagnosis and to the care provided. Patients were clustered into two categories, actively dying or non-actively dying, using clinical opinion based on their medical records. Appropriateness of care was appraised following French guidelines.
Results: One hundred and forty-six deaths were recorded. Actively dying patients mostly suffered from vascular conditions (29.4%). When compared to the overall sample, they were more likely to have decisions to withhold or withdraw treatments (OR = 5.3 [1.56; 20.7], p-value = 0.003), to have strong opioids (OR = 5.32 [2.1; 13.9], p-value <0.0001), hypnotics (OR = 2.6 [0.95; 8.39], p-value = 0.05), and scopolamine (OR = 2.5 [1.1; 6.13], p-value = 0.03). Moreover, they were less likely to have unbeneficial treatments in terminal conditions, such as resuscitation care (OR = 0.06 [0.001; 0.52], p = 0.002) and antibiotics (OR = 0.42 [0.19; 0.92], p-value = 0.022). There were no differences in rate of hydration, venous access and use of tracheal aspirations.
Conclusions: Overall, actively dying patients were appropriately supported. However, several issues regarding hydration management, drug administration routes, and broncho-pulmonary secretions management remain to be addressed.
BACKGROUND: In the Netherlands, general practitioners (GPs) and community nurses play a central role in the palliative care for home-dwelling patients with advanced cancer and their relatives. To optimize the palliative care provision at home, it is important to have insight in the elements that patients and relatives consider essential for high-quality palliative care, and whether these essentials are present in the actual care they receive.
METHODS: Qualitative semi-structured interviews were conducted with 13 patients with advanced cancer and 14 relatives. The participants discussed their experiences with the care and support they received from the GP and community nurses, and their views on met and unmet needs. Interview data were analysed according to the principles of thematic analysis.
RESULTS: Patients as well as relatives considered it important that their GP and community nursing staff are medically proficient, available, person-focused and proactive. Also, proper information transfer between care professionals and clear procedures when asking for certain resources or services were considered essential for good palliative care at home. Most interviewees indicated that these essential elements were generally present in the care they received. However, the requirements of 'proper information transfer between professionals' and 'clear and rapid procedures' were mentioned as more difficult to meet in actual practice. Patients and relatives also emphasized that an alert and assertive attitude on their own part was vital in ensuring they received the care they need. They expressed worries about other people who are less vigilant regarding the care they receive, or who have no family to support them in this.
CONCLUSIONS: Medical proficiency, availability, a focus on the person, proper information transfer between professionals, clear procedures and proactivity on the part of GPs and community nursing staff are considered essential for good palliative care at home. Improvements are particularly warranted with regard to collaboration and information transfer between professionals, and current bureaucratic procedures. It is important for care professionals to ensure that the identified essential elements for high-quality palliative care at home are met, particularly for patients and relatives who are not so alert and assertive.
BACKGROUND: Palliative care consultation during serious life-limiting illness can reduce symptom burden and improve quality of care. However, quantifying the impact of palliative care is hindered by the limitations of manual chart review and administrative coding.
OBJECTIVES: Using novel natural language process (NLP) techniques, we examined associations between palliative care consultations and performance on nationally endorsed metrics for high-quality end-of-life (EOL) care in patients with leptomeningeal disease (LMD) secondary to metastatic breast cancer.
METHODS: Patients with breast cancer with LMD were identified using administrative billing codes and NLP review of magnetic resonance imaging reports at 2 tertiary care centers between 2010 and 2016. Next, NLP was used to review clinical notes to (1) determine the presence of palliative care consultations and (2) determine the performance of process measures associated with high-quality EOL care, including discussions of goals of care, code status limitations, and hospice. Associations between palliative care consultation and documentation of EOL process measures were assessed using logistic regression.
RESULTS: We identified 183 cases of LMD. Median age was 56 (interquartile range [IQR]: 46-64) years and median survival was 150 days (IQR: 67-350). Within 6 months of diagnosis, 88.5% of patients had documentation of =1 process measure, including discussions of goals of care (63.4%), code status limitations (62.8%), or hospice (72.1%). Palliative care consultation was a predictor of subsequent documentation of goals of care (odds ratio [OR], 3.15; 95% confidence interval [CI], 1.58-6.27) and hospice discussions (OR, 4.61; 95% CI, 2.12-10.03).
CONCLUSION: Palliative care involvement is associated with increased performance of EOL process measures in patients with breast cancer with LMD.
Objective: To quantitatively assess the factors associated with non-beneficial treatments (NBTs) in hospital admissions at the end of life.
Design: Retrospective multicentre cohort study.
Setting Three large, metropolitan tertiary hospitals in Australia.
Participants: 831 adult patients who died as inpatients following admission to the study hospitals over a 6-month period in 2012.
Main outcome measures: Odds ratios (ORs) of NBT derived from logistic regression models.
Results: Overall, 103 (12.4%) admissions involved NBTs. Admissions that involved conflict within a patient’s family (OR 8.9, 95% CI 4.1 to 18.9) or conflict within the medical team (OR 6.5, 95% CI 2.4 to 17.8) had the strongest associations with NBTs in the all subsets regression model. A positive association was observed in older patients, with each 10-year increment in age increasing the likelihood of NBT by approximately 50% (OR 1.5, 95% CI 1.2 to 1.9). There was also a statistically significant hospital effect.
Conclusions: This paper presents the first statistical modelling results to assess the factors associated with NBT in hospital, beyond an intensive care setting. Our findings highlight potential areas for intervention to reduce the likelihood of NBTs.
The increased demand for palliative care services has led to concerns surrounding workforce knowledge and resiliency, specifically with regard to palliative pain management for patients with life-limiting illnesses. Educational preparedness of nurses along with best processes and practices is necessary to promote optimal care for patients requiring palliative pain management. Through analyzing Veterans Administration Strategic Analytics for Improvement and Learning data, a deficiency in short-stay self-reported palliative patient pain management at the Southwestern Veterans Administration Medical Center, a level 1B, tertiary care referral center was defined. Best practices in the palliative care industry were then identified, and a quality improvement plan in the form of a nurse-driven palliative care pain education hands-on simulation was generated to promote excellence in care. Quality improvement for short-stay palliative pain management at the Southwestern Veterans Administration Medical Center was the end goal.
Background: Heart failure is the final common pathway of many cardiovascular diseases, and yet many individuals with heart failure die hospitalised, suffering needlessly and experiencing what could be termed a ‘bad death’. While it is essential to address the wishes of individuals and their families in improving the quality of end-of-life care for patients with heart failure, their unmet needs remain poorly understood.
Aim: to systematically review the literature describing a good death or end-of-life care in heart failure and to synthesise identified studies to describe how elements of heart failure care may contribute to a good death.
Methods: PubMed and Scopus were searched from January 2001 to April 2018. The method of Whittemore and Knafl guided this review to identify emergent themes.
Findings: Of the 436 studies identified, 43 met the inclusion criteria. Five themes associated with end-of-life care in heart failure and a good death were generated: (1) location of death, (2) preferred care, (3) palliative care utilisation, (4) interventions to improve the likelihood of a good death, (5) the intersection of individual, family, healthcare providers, and community-level factors.
Discussion: This integrative review highlights a number of factors that prevent patients with heart failure from receiving palliative care, such as difficulty predicting mortality, late referral misconception of the role of palliative care and low availability of resources.
Conclusion: This review has identified modifiable barriers and facilitator of a good death and emphasised the importance of considering the intersection of patient, provider and healthcare system issues in facilitating a good death for patients with heart failure.
Background: There are significant policy imperatives to involve consumers at the outset of and throughout research. How best to achieve this in an authentic and meaningful way is elusive, particularly within the palliative care population.
Aim: To determine how best to engage people with palliative care needs and their families in co-designing a qualitative study to better understand how to improve care of the dying in the acute care setting.
Methods: A case study design informed this work, informed by pre-determined research questions that focused on consumers advising on participant experience within the research, rather than research methodology per se.
Findings: Eleven consumers contributed across five panel meetings. Analysis of documented feedback led to four key areas of protocol change: Getting the language in the recruitment materials and information and consent forms right; Developing a feasible and acceptable recruitment strategy; Opportunities to more clearly articulate the explicit value of this research for patients and families; Support strategies for participants.
Discussion: Authentic consumer engagement requires time and effort; however, the outcomes are well worth the invested time and energy. Key foci outlined within this case study to enhance authenticity included: collaboration; preferencing the consumer voice; adequate preparation to support consumer engagement; and openness to all feedback provided.
Conclusion: Co-designing research with consumers enabled the outcome to be feasible for implementation, without any modifications required. Ensuring relevance and consumer-centredness for the expanding palliative care evidence base is essential and can only be achieved through meaningful partnerships with consumer representatives.
Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of early mortality throughout their lifespan, particularly during their first year of life. Due to the intense care needed for these children and families, pediatric palliative care (PPC) team consults should be routine; however, medical staff are often reluctant to broach the idea of PPC to families. The involvement of PPC for many carries with it an association to end-of-life (EOL) care. Setting the standard of PPC involvement from the time of admission for the first palliative surgery led to increased family support, decreased days to consult, improved acceptance and communication. The purpose of this article is to describe a quality improvement project of early integration of PPC with families of children with SVCHD. Lessons learned will be presented, including the resources needed and the barriers encountered in assimilating PPC into the standard of care for all patients with SVCHD. The single ventricle (SV) and PPC teams collaborated to enhance the support given to SV families. Education was initiated with cardiology and PPC providers to understand the goal of consistent PPC consults beginning after birth for patients with SVCHD. Parents were educated during fetal consultation regarding the involvement of the PPC team. The SV team ensured compliance with the PPC initiative by identifying eligible patients and requesting consult orders from the primary providers. PPC consultation increased significantly over the 40 month study period to nearly 100% compliance for children with SVCHD who are undergoing pre-Fontan surgery. In addition, mean days to consult decreased dramatically during the study to a current average of 3 days into the patient's hospitalization; the data likely suggest that more PPC consults were routinely ordered versus urgently placed for unexpected complications. Data indicate that patients are being followed by the PPC team at an earlier age and stage in their SV journey which allows for more opportunity to provide meaningful support to these patients and families. The early involvement of the PPC team for children with SV physiology was operationally feasible and was accepted by families, thus allowing PPC providers to establish a therapeutic relationship early in the disease trajectory with the family. It allowed more continuity throughout the SV journey in a proactive fashion rather than a reactive manner.
OBJECTIVES: Mortality in care homes is high, but care of dying residents is often suboptimal, and many services do not have easy access to specialist palliative care. This study examined the impact of providing specialist palliative care on residents' quality of death and dying.
DESIGN: Using a stepped wedge randomized control trial, care homes were randomly assigned to crossover from control to intervention using a random number generator. Analysis used a generalized linear and latent mixed model. The trial was registered with ANZCTR: ACTRN12617000080325.
SETTING: Twelve Australian care homes in Canberra, Australia.
PARTICIPANTS: A total of 1700 non-respite residents were reviewed from the 12 participating care homes. Of these residents, 537 died and 471 had complete data for analysis. The trial ran between February 2017 and June 2018.
INTERVENTION: Palliative Care Needs Rounds (hereafter Needs Rounds) are monthly hour-long staff-only triage meetings to discuss residents at risk of dying without a plan in place. They are chaired by a specialist palliative care clinician and attended by care home staff. A checklist is followed to guide discussions and outcomes, focused on anticipatory planning.
MEASUREMENTS: This article reports secondary outcomes of staff perceptions of residents' quality of death and dying, care home staff confidence, and completion of advance care planning documentation. We assessed (1) quality of death and dying, and (2) staff capability of adopting a palliative approach, completion of advance care plans, and medical power of attorney.
RESULTS: Needs Rounds are associated with staff perceptions that residents had a better quality of death and dying (P < .01; 95% confidence interval [CI] = 1.83-12.21), particularly in the 10 facilities that complied with the intervention protocol (P < .01; 95% CI = 6.37-13.32). Staff self-reported perceptions of capability increased (P < .01; 95% CI = 2.73-6.72).
CONCLUSION: The data offer evidence for monthly triage meetings to transform the lives, deaths, and care of older people residing in care homes.
Objective: To systematically capture patient- and family-centered data to understand variability and opportunities in end-of-life care delivery across settings in an integrated health care delivery system.
Background: Improving the quality of end-of-life care requires assessing patient and family experiences across settings where care occurs, but we found no existing instrument suitable for this purpose.
Methods: We conducted a cross-sectional survey with 10,308 surviving respondents (usually next of kin) of decedents in five Kaiser Permanente operating regions. The survey included eight items from an existing validated survey and three original items.
Results: The overall response rate was 26% (2631). Most respondents reported that they were knowledgeable about decedents' end-of-life care and preferences. Across regions, 80% of respondents reported overall end-of-life care as excellent or very good. The proportion of excellent and very good responses was 74–84% across regions for items assessing attributes of end-of-life care, with statistically significant differences (p < 0.05). The proportion of positive responses was 69–89%. Overall, end-of-life care was rated as excellent or very good for a greater proportion of patients who received palliative care, hospice care, or both (78–82%), compared to those who did not (69%, p < 0.05 for all).
Discussion: Regions are using data to inform end-of-life care initiatives. Assessing patient and family experiences of end-of-life care across settings with a single survey was feasible and provided valuable information supporting quality improvement. The survey met our need for a general purpose survey on end-of-life care experience.
Aim: Aim was to describe how Registered Nurses (RNs) and assistant nurses (ANs) working in residential care homes and home care perceived quality end-of-life care after implementation of the Liverpool Care Pathway (LCP) in terms of subjective importance of care aspects and actual care given.
Design: Descriptive cross-sectional.
Methods: Registered Nurses (N = 22; 100% response rate) and ANs (N = 120; 59% response rate) working in a Swedish municipality. Data collection with a study-specific questionnaire (50 items) about perceived reality (PR) and subjective importance (SI). Non-parametric statistics.
Results: Implementation of the LCP ensured systematic assessment and alleviation of patients' symptoms and needs. The ANs, more than the RNs, perceived that the patients received the best possible nursing and medical care (p = .01). Both groups considered that communication with patients and families as well as the information exchange between the team members was facilitated. Areas for improvement were identified about psychological and existential support and patients and families' participation in care.
Background: Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals.
Methods: Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate).
Results: The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support.
Conclusions: This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative’s priorities for EoLC in acute hospitals and can advance care providers’, policy makers’ and educationalists’ priorities for service improvement.