OBJECTIVE: To know the facilities and difficulties the palliative care team professionals experience in the implementation process of advance healthcare directives.
METHOD: Exploratory-descriptive study with a qualitative approach, involving 51 professionals from seven palliative care teams in the state of Rio Grande do Sul, Brazil. The data were collected between December 2018 and April 2019 and discursive textual analysis was applied.
RESULTS: The facilities found were: the approach by the palliative care team; listening and respecting patients' wishes; effective communication between professionals, patients, and family members and resolution of difficult situations. The difficulties reported were: legal issues; the lack of knowledge of professionals about the subject; the lack of institutional protocols; the difficulty in talking about death and the family barrier.
CONCLUSION: Despite the perceived facilities and difficulties, palliative care professionals intend to work based on the patients' desires and will, aiming to offer dignity in the dying process.
Background: Emergency Medical Services (EMS) are often involved in end-of-life circumstances, yet little is known about how EMS interfaces with advance directives to forego unwanted resuscitation (Do Not Attempt Resuscitation (DNAR)). We evaluated the frequency of these directives involved in out-of-hospital cardiac arrest (OHCA) and how they impact care.
Methods: We conducted a cohort investigation of adult, EMS-attended OHCA from January 1 to December 31, 2018 in King County, WA. DNAR status was ascertained from dispatch, EMS, and hospital records. Resuscitation was classified according to DNAR status: not initiated, initiated but ceased due to the DNAR, or full efforts.
Results: Of 3152 EMS-attended OHCA, 314 (9.9%) had a DNAR directive. DNAR was present more often among those for whom EMS did not attempt resuscitation compared to when EMS provided some resuscitation (13.2% [212/1611] vs 6.6% [101/1541], (p < 0.05).
Of those receiving resuscitation with a DNAR directive (n = 101), the DNAR was presented on average 6 min following EMS arrival. A total of 82% (n = 83) had EMS efforts ceased as a consequence of the DNAR while 18% (n = 18) received full efforts. Full-efforts compared to ceased-efforts were more likely to have a witnessed arrest (67% vs 36%), present with shockable rhythm (22% vs 6%), achieve spontaneous circulation by time of DNAR presentation (50% vs 4%), and have family contradict the DNAR (33% vs 0%) (p < 0.05 for each comparison).
Conclusions: Approximately 10% of EMS-attended OHCA involved DNAR. EMS typically fulfilled this end-of-life preference, though wishes were challenged by delayed directive presentation or contradictory family wishes.
BACKGROUND: In Spain, there has been great effort by lawmakers to put Advance Directives (ADs) into practice since 2002. At the same time, the field of bioethics has been on the rise, a discipline that has spurred debate on the right of patients to exercise their autonomy. Despite all this, the implementation of ADs can be said to have failed in Spain, because its prevalence is very low, there is a great lack of knowledge about them and they have very little impact on clinical decisions. The purpose of this article is to analyze and discuss the main reasons for the failure of ADs in Spain.
MAIN BODY: The main reasons why ADs have no impact on clinical practice in Spain have been fundamentally four: (1) the training of health professionals about the end of life and AD is lacking; (2) there has been no public process to increase awareness about AD, and therefore people (with the exception of specific highly sensitized groups) know little about them; (3) the bureaucratic procedure to document and implement ADs is excessively complex and cumbersome, creating a significant barrier to their application; (4) in Spain, the remnants of a paternalistic medical culture continue to exist, which causes shared decision-making to be difficult.
CONCLUSION: Due to the four reasons mentioned above, AD have not been a useful tool to help honor patients' autonomous decisions about their future care and, therefore, they have not achieved their objective. However, despite the difficulties and problems identified, it has also been observed that health care professionals and the Spanish public have a very positive view of AD. Having identified the problems which have kept AD from being successful, strategies must be developed to help improve their implementation into the future.
BACKGROUND: The low completion rate of advance directives (ADs) has received attention in Japan and the United States, as policy makers and health care professionals face aging populations with multiple comorbidities. Among the barriers to AD planning, cultural values and attitudes appear to be particularly influential. A comparison of culturally distinct societies provides a deeper understanding of these barriers. Through such an approach, this study identifies strategies for increasing AD planning among late-middle-age Japanese and US individuals.
METHODS: After giving informed consent for the Institutional Review Board-approved study, Japanese and US respondents (45-65 y; 50% female) without ADs completed a language-appropriate online survey. Participants were asked to review a decision aid as part of a scenario-based physician consultation regarding artificial nutrition and hydration (ANH). Hypotheses were analyzed using multigroup structural equation modeling.
RESULTS: Important similarities were identified across the 2 groups. After reviewing the decision aid, both samples strongly preferred "no ANH." Respondents who strongly valued either self-reliance or interpersonal relationships experienced greater preparedness for AD planning. In both countries, greater decision preparedness and positive death attitude predicted greater confidence to discuss care options with a provider. Finally, cultural values predicted preference for family participation: respondents with a strong interdependent self-concept desired more family involvement, whereas high independents preferred less.
CONCLUSIONS: Findings indicate the importance of documenting care preferences and accounting for individual differences. To increase AD adoption, providers should identify patient segments likely to benefit most from the interventions. Targeting individuals in both countries who value self-reliance and interpersonal relationships appears to be a good place to begin. Such individuals can be identified clinically through administration of validated measures used in this study.
OBJECTIVE: This study aimed to investigate the association between professional characteristics and the prevalence of advance directives among palliative care professionals.
METHODS: This is a descriptive cross-sectional study. A diverse sample of 327 healthcare professionals completed an online survey investigating demographic variables, length of time working in palliative care, post-graduate qualifications in palliative care, and development of their own advance directives.
RESULTS: The prevalence of advance directives among professionals working in palliative care was associated with factors such as higher academic qualifications, holding a post-graduate qualification in palliative care, and working in palliative care for a longer time. Furthermore, psychologists were most likely to have registered their own advance directives, compared with other healthcare professionals.
SIGNIFICANCE OF RESULTS: Post-graduate palliative care education and professional experience in this area appear to be important factors associated with palliative care professionals writing of their own advance directives. However, our study suggests that just being involved in or familiar with the context of palliative and end-of-life care does not guarantee that health professionals register their advance directives.
Advance care directives (ACDs) are instructions regarding what types of medical treatments a patient desires and/or who they would like to designate as a healthcare surrogate to make important healthcare decisions when the patient is mentally incapacitated. At end-of-life, when faced with poor prognosis for a meaningful health-related quality of life, most patients indicate their preference to abstain from aggressive, life-sustaining treatments. Patients whose wishes are left unsaid often receive burdensome life sustain therapy by default, prolonging patient suffering. The CoVID pandemic has strained our healthcare resources and raised the need for prioritization of life-sustaining therapy. This highlights the urgency of ACDs more than ever. Despite ACDs' potential to provide patients with care that aligns with their values and preferences and reduce resource competition, there has been relatively little conversation regarding the overlap of ACDs and CoVID-19. There is low uptake among patients, lack of training for healthcare professionals, and inequitable adoption in vulnerable populations. However, solutions are forthcoming and may include electronic medical record completion, patient outreach efforts, healthcare worker programs to increase awareness of at-risk minority patients, and restructuring of incentives and reimbursement policies. This review carefully describes the above challenges and unique opportunities to address them in the CoVID-19 era. If solutions are leveraged appropriately, ACDs have the potential to address the described challenges and ethically resolve resource conflicts during the current crisis and beyond.
PURPOSE: The Oncology Care Model (OCM) was developed to improve care while also supporting patient-centered practices. This model could significantly affect experiences of patients with cancer; however, previous studies have not explored patient perspectives.
PATIENTS AND METHODS: This cross-sectional study used focus group and survey methodology to explore patient experiences in the OCM. The sample included 213 patients (OCM patients, n = 130 recruited within OCM practices; non-OCM patients, n = 83 recruited via e-mail from the Cancer Support Community Cancer Experience Registry).
RESULTS: Findings suggest that patients in OCM practices were more likely to report that their cancer care team asked about social/emotional distress or concerns and more likely to have social/emotional resources offered. OCM patients were also more likely to have discussed advance directives with providers. They were also more likely to be satisfied with provider explanations of treatment benefits as well as treatment risks and adverse effects. Lastly, OCM patients were significantly more satisfied with discussion of treatment costs and provided higher ratings of preparation by their cancer care team for management of adverse effects.
CONCLUSION: Patients in this study reported experiences consistent with many of the key goals of the OCM. This is promising and may indicate the need to expand the model. However, because of the potential selection bias of our sampling method, more research is needed.
Introduction : La plupart des Français souhaitent mourir à domicile mais peu d’entre eux y décèdent réellement. L’expression par le patient de son souhait sur le lieu de son décès en favorise le respect, mais les médecins connaissent peu ces souhaits. L’objectif de l’étude est de recueillir la façon dont les personnes en situation palliative à domicile envisagent d’aborder le lieu de décès avec leur médecin généraliste.
Méthode : Une étude qualitative a été réalisée par entretiens individuels semi-dirigés au domicile des personnes atteintes d’une pathologie incurable avec un pronostic vital entre 4 semaines et 2 ans.
Résultats : 15 entretiens ont été menés. La plupart des personnes interrogées souhaitent mourir à la maison, proche des leurs, mais le besoin d’être accompagné et de préserver leur entourage semble être plus important pour elles. Elles attendent que le médecin traitant aborde la fin de vie et le lieu de décès avec disponibilité, écoute et bienveillance, et qu’il y montre de l’intérêt. L’émergence de trois profils (paternaliste, autonomiste et intermédiaire) illustre la façon dont elles envisagent ces discussions avec leur médecin traitant.
Discussion : Les personnes en situation palliative à domicile attendent que le médecin traitant aborde la fin de vie avec une attitude adaptée au profil de chacun. Une consultation dédiée permettrait au médecin généraliste de créer des conditions favorables afin de donner au malade une opportunité d’aborder ce sujet sensible et de respecter ses souhaits.
Conclusion : Les malades souhaitent une implication du médecin généraliste dans les discussions anticipées.
INTRODUCTION: We hypothesized that trauma providers are reticent to consider palliative measures in acute trauma care.
METHODS: An electronic survey based on four patient scenarios with identical vital signs and serious blunt injuries, but differing ages and frailty scores was sent to WTA and EAST members.
RESULTS: 509 (24%) providers completed the survey. Providers supported early transition to comfort care in 85% old-frail, 53% old-fit, 77% young-frail, and 30% young-fit patients. Providers were more likely to transition frail vs. fit patients with (OR = 4.8 [3.8-6.3], p < 0.001) or without (OR = 16.7 [12.5-25.0], p < 0.001) an advanced directive (AD) and more likely to transition old vs. young patients with (OR = 2.0 [1.6-2.6], p < 0.001) or without (OR = 4.2 [2.8-5.0], p < 0.001) an AD.
CONCLUSIONS: In specific clinical situations, there was wide acceptance among trauma providers for the early institution of palliative measures. Provider decision-making was primarily based on patient frailty and age. ADs were helpful for fit or young patients. Provider demographics did not impact decision-making.
This article considers a particular aspect of palliative psychology that is inherent to the needs in the area of attitudes concerning Advance Healthcare Directives (AHDs) among Italian physicians and nurses after the promulgation of Law No. 219/2017 on AHDs and informed consent in 2018. The study utilized a mixed-method approach. The group of participants was composed of 102 healthcare professionals (63 females and 39 males). The quantitative part utilized the following scales: Attitudes toward Euthanasia, the Religious Orientation Scale, the Balanced Inventory of Desirable Responding, and the Testoni Death Representation Scale. The results were mostly in line with the current literature, especially concerning a positive correlation between religiosity and the participants' rejection of the idea of euthanasia. However, the qualitative results showed both positive and negative attitudes towards AHDs, with four main thematic areas: "Positive aspects of the new law and of AHDs", "Negative aspects of the new law and of AHDs", "Changes that occurred in the professional context and critical incidents", and "Attitudes towards euthanasia requests." It emerged that there is not any polarization between Catholics or religious people and secularists: Their positions are substantially similar with respect to all aspects, including with regard to euthanasia. The general result is that the law is not sufficiently understood, and so a quarter of the participants associate AHDs with euthanasia. Discussions on the opportunity for palliative psychologists to help health professionals to better manage these issues through death education courses are presented.
BACKGROUND: Advance care planning and advance directives play a key role in the care of life-threatening illnesses such as amyotrophic lateral sclerosis.
AIM: The aim of the present study is to explore how the introduction of these features by law improves the experience of end-of-life care.
DESIGN: Five focus groups were conducted in Italy 1 year after the new law on advance directives was introduced.
SETTING/PARTICIPANTS: Purposive sampling was used to recruit 24 health professionals and 23 family caregivers of patients with amyotrophic lateral sclerosis, for a total of 47 participants.
RESULTS: The thematic analysis, conducted through the use of ATLAS.ti software, identified four thematic areas: best practices, managing difficulties, care relationships and proposals. The results indicated a lack of organization, collaboration and continuity on the part of healthcare services and professionals, a lack of information on palliative care, advance care planning, and advance directives. End-of-life care is often left to the good will of the individual professional. Difficulties can also derive from ethical dilemmas concerning end-of-life decision-making and from a lack of communication and relationships between health professionals, patients and their families.
CONCLUSION: The introduction of advance directives by law has not been sufficient to improve end-of-life care. In order to make legal regulation effective, the organization of healthcare services needs to be improved and clearer procedures have to be implemented and shared with patients and families.
PURPOSE: Cancer treatment for those nearing death has become increasingly aggressive over time despite evidence that less aggressive approaches are associated with better quality of life and sometimes longer survival. Chemotherapy administration in the last 14 days of life is one of the proposed benchmarks for quality of cancer care. The purpose of our study is to evaluate factors associated with aggressive cancer treatment in patients who died within 2 weeks of receiving chemotherapy.
METHODS: This retrospective cohort study evaluated adult patients who died between 1 February 2018 and 1 March 2019 after receiving cancer treatment in the preceding 14 days at the Prisma Health Cancer Institute. This project was approved by our institutional review board. Data was obtained by review of electronic medical records and analyzed using commercial software.
RESULTS: We identified 92 patients who met inclusion criteria for the study. Of those who were staged, 57% had metastatic disease. A majority received treatments with only palliative intent (54%). These patients overwhelmingly died in the hospital (62%). Few had documented advanced directives (28%) or dedicated palliative care for longer than 1 week (28%). Overall, this cohort reflects a rate of 11.7% of patients who received cancer treatment during the study time period.
SIGNIFICANCE OF RESULTS: Patients receiving aggressive cancer treatment at the end of life elucidate significant gaps in quality cancer care, particularly the early involvement of dedicated palliative care. Systematic review helped identify multiple gaps and assisted in implementing interventions to improve this outcome.
BACKGROUND: Previous research has found racial differences in hospice knowledge and misconceptions about hospice care, which may hinder access to hospice care. Asian Indians are a rapidly growing population in the United States, yet limited research has focused on their beliefs toward end-of-life care. This project investigates Indian Americans' knowledge of and attitudes toward hospice care and advance care planning.
PROCEDURES: A cross-sectional design was employed using surveys about participants' knowledge of and attitudes toward hospice care and advance care planning. Surveys were conducted among Indian Americans, age 60 and over, recruited from Indian cultural centers in Northern California. The participants were first asked questions about hospice care. They were then given a summary explanation of hospice care and later asked about their attitudes toward hospice care. Data were analyzed using descriptive and bivariate analyses.
RESULTS: Surveys were completed by 82 participants. Findings revealed that 42.5% of respondents had an advance directive and 57.1% had named a health care proxy. Only 10% of respondents had known someone on hospice care and 10.4% correctly answered 4-5 of the knowledge questions. After being informed about hospice care, 69.6% of participants agreed that if a family member was extremely ill, they would consider enrolling him/her in hospice.
CONCLUSIONS: This study's results present a need for greater education about hospice services among older Asian Indians. Health practitioners should remain cognizant of potential misconceptions of hospice and cultural barriers that Asian Indians may have toward hospice care, so they can tailor conversations accordingly.
Background: Many patients with heart failure (HF) have not addressed end-of-life planning.
Objective: Evaluate the impact of an advance care planning (ACP) intervention on patients hospitalized with acute decompensated HF.
Methods: A convenience sample of patients hospitalized with HF completed the Advance Directive Attitude Survey (ADAS) before The Conversation Project intervention. Post-intervention scores were collected after 30 days.
Results: All participants (n = 30) had positive pre-intervention ADAS scores. Post-intervention scores revealed no significant change (p = 0.53). Twenty eight percent completed an advance directive (AD), 64% discussed the AD with a significant other, 40% established a surrogate decision maker, and 12% discussed the AD with a provider.
Conclusions: Advance directive completion rates were low despite participants having positive attitudes regarding their value. Discussion of goals between the patient and significant other is an important factor in end-of-life planning. Further studies are needed on strategies to improve provider discussions and AD completion.
As life expectancy increases, long periods of comorbidity and low quality of life commonly precede death. Advance care planning within primary care settings is necessary to increase patient agency and prioritize personal wishes. This article disseminates a quality improvement initiative within a federally qualified health center. New procedures were developed to systematically track advance directive conversations using current procedural terminology codes. The systems change resulted in a substantial and sustained increase in advance directive conversation documentation. The increase was presumably due to the implementation of small-scale changes, providers' commitment to geriatric primary care, increases in appointment times, allocation of tasks across disciplines, availability of Spanish speaking staff and translated forms, and the change to record keeping that enabled codes to be easily captured and tracked in the electronic medical record. This work may inform future quality improvement efforts to boost advance care planning among underserved populations in diverse settings.
The field of clinical bioethics strongly advocates for the use of advance directives to promote patient autonomy, particularly at the end of life. This paper reports a study of clinical bioethicists' perceptions of the professional consensus about advance directives, as well as their personal advance care planning practices. We find that clinical bioethicists are often sceptical about the value of advance directives, and their personal choices about advance directives often deviate from what clinical ethicists acknowledge to be their profession's recommendations. Moreover, our respondents identified a pluralistic set of justifications for completing treatment directives and designating surrogates, even while the consensus view focuses on patient autonomy. Our results suggest important revisions to academic discussion and public-facing advocacy about advance care planning.
Background: The growing trend in providing palliative care and end-of-life services has dictated that healthcare providers be adequately trained to care for people with serious illnesses, such as multiple sclerosis (MS) and neuromyelitis optica spectrum disorder (NMOSD). These progressive inflammatory diseases lead to physical, cognitive and emotional deficits and have exceptionally high care demands leading to high levels of distress. Because the impact on the delivery of patient care is influenced by the specialists' knowledge and comfort discussing end-of-life issues, it is concerning that interventions to address unmet palliative care needs in MS and NMOSD rarely include clinician-patient dyads.
Objectives: To evaluate the neurology clinicians' knowledge and level of comfort discussing palliative care and end-of-life issues.
Design: A cross sectional survey was conducted. The statistical analyses included frequencies, chi square statistics and logistic regression.
Setting/Subjects: 414 MS specialists answered an online anonymous survey. The survey was conducted using email distributions to MS professionals through the Consortium of MS Centers (CMSC), the International Organization of MS Nurses (IOMSN) and the UK Nurses' MS Organization.
Measurement: The "End of Life Professional Caregiver Survey" (EPCS) was used to collect data.
Results: The majority of the multidisciplinary professionals were female, white, nurses, and older than 40 years of age. 41% had their own advance directives and 57.6% had end-of-life basic training. There was a statistically significant association between end-of-life training or having advance directives and comfort discussing palliative care and end of life issues. Professionals that had basic end-of-life training and their own advance directives had higher comfort discussing code status, specific end-of-life issues, and advance directive planning.
Conclusions: Basic end-of-life training and having advance directives among MS professionals were associated with better communication of palliative care and end-of-life domains with patients and their care partners.
Advance directives (ADs) allow individuals to legally determine their preferences for end-of-life (EOL) medical treatment and designate a health-care proxy to act on their behalf prior to losing the cognitive ability to make informed decisions for themselves. An interprofessional group of researchers (law, nursing, medicine, and social work) conducted an exploratory study to identify the differences in quality-of-life (QOL) language found within the AD state statutes from 50 US states and the District of Columbia. Data were coded using constant comparative analysis. Identified concepts were grouped into 2 focus areas for EOL discussions: communication/awareness of surroundings and activities of daily living. Language regarding communication/awareness of surroundings was present in the half of the statutes. Activities of daily living were addressed in only 18% of the statutes. Only 3 states (Arkansas, Nevada, and Tennessee) specifically addressed QOL. Patients are best served when professionals, regardless of discipline, can share and transform knowledge for patients in times of crisis and loss in ways that are empathetic and precise. Interprofessional collaborative practice (IPCP) comprises multiple health workers from different professional backgrounds working together with patients, families, and communities to deliver the highest quality of care. One of the major competencies of IPCP encompasses values and ethics. Interprofessional collaborative practice is offered as the means to deliver person-centered value-based care when facilitating these crucial dialogs and making recommendations for change.
CONTEXT: COVID-19 led to increased attention nationally on advance care planning.
OBJECTIVES: To describe the impact COVID-19 had on advance care planning based on changes in the calls to the WV Center for End-of-Life Care (Center) and in the volume and types of documents requested from and submitted to the Center and its e-Directive Registry (Registry).
METHODS: A retrospective, observational analysis between January 1, 2020 and June 30, 2020 of 1) calls to the Center, 2) advance directives downloaded from the Center's website as well as mailed to the public and medical orders mailed to health care professionals upon request to the Center, and 3) advance directives and medical orders submitted to the Registry.
RESULTS: The nature of calls changed to COVID-19-related topics including confirmation of forms on the Registry, urgent desire to initiate advance care planning, temporary rescindment of treatment-limiting forms, and questions on how to honor patients' wishes in advance directives and medical orders in light of their COVID-19 status. Also in the first six months of 2020, the Center distributed more advance directives than it had during the same months in the last five years and more medical orders than it had in the preceding four years when there were not revisions to the medical order forms required by changes to the state law.
CONCLUSIONS: COVID-19 resulted in a new sense of urgency regarding advance care planning by West Virginians with increased attention to document their wishes and ensure that they were in the Registry.
Background: In 2017, the American College of Surgeons' Trauma Quality Improvement Program adopted a Palliative Care Best Practices Guidelines that calls for early palliative care for hospitalized injured patients.
Objective: To develop an educational intervention to address the palliative needs of injured patients.
Design: Palliative faculty presented a three-part monthly lecture series focused on core primary palliative skills, including the components of palliative care; conducting family conferences; communication skills for complex medical decision making; pain management; and, end-of-life planning. Additionally a palliative provider joined trauma team rounds every other week to highlight opportunities for enhanced palliative assessments, identify appropriate consults, and provide just-in-time teaching.
Setting: Urban, level-1 trauma center.
Measurements: Surgical residents completed a survey at the beginning and end of the academic year, during which the intervention took place. All survey questions were answered with a 5-point Likert scale. Rate of palliative care consultation was also tracked.
Results: There were statistically significant perceived improvements in goals-of-care discussions (initial discussion—4.30 vs. 3.52, p = 0.4; follow-up discussion—3.89 vs. 3.05, p = 0.021) and documentation (3.89 vs. 2.9, p = 0.032), incorporation of patient preferences into decision making (4.20 vs. 3.43, p = 0.04), discussion of palliative needs during rounds (4.30 vs. 2.81; p < 0.001) and care transitions (3.90 vs. 3.05, p = 0.008), respect for decisions to forgo life-sustaining treatments (4.40 vs. 3.52, p = 0.004), and identification of advance directives (4.11 vs. 3.05, p = 0.002) and surrogate decision maker (4.44 vs. 3.60, p = 0.015). The overall rate of palliative specialist consultation also increased (8.4% vs. 16.1%, p < 0.001).
Conclusion: Embedding primary palliative education into usual didactic and rounding time for an inpatient trauma team is an effective way to help residents develop palliative skills and foster culture change. Educational partnerships such as this may serve as an example to other trauma programs.