The Coronavirus disease 2019 (COVID-19) pandemic has led to high numbers of critically ill and dying patients in need of expert management of dyspnea, delirium, and serious illness communication. The rapid spread of severe acute respiratory syndrome-Coronavirus-2 creates surges of infected patients requiring hospitalization and puts palliative care programs at risk of being overwhelmed by patients, families, and clinicians seeking help. In response to this unprecedented need for palliative care, our program sought to create a collection of palliative care resources for nonpalliative care clinicians. A workgroup of interdisciplinary palliative care clinicians developed the Palliative Care Toolkit, consisting of a detailed chapter in a COVID-19 online resource, a mobile and desktop Web application, one-page guides, pocket cards, and communication skills training videos. The suite of resources provides expert and evidence-based guidance on symptom management including dyspnea, pain, and delirium, as well as on serious illness communication, including conversations about goals of care, code status, and end of life. We also created a nurse resource hotline staffed by palliative care nurse practitioners and virtual office hours staffed by a palliative care attending physician. Since its development, the Toolkit has helped us disseminate best practices to nonpalliative care clinicians delivering primary palliative care, allowing our team to focus on the highest-need consults and increasing acceptance of palliative care across hospital settings.
BACKGROUND: Family caregivers of patients on prolonged mechanical ventilation (PMV) may encounter challenges concerning medical decision-making besides witnessing patient suffering. Palliative care (PC) should be a good support for both patients and caregivers; however, for PMV families, PC is not always a choice through long companion time. This qualitative study clarifies family caregivers' burden of assisting patients on PMV and evaluates the need for PC information and support.
METHODS: Interviews were caregivers of patients on ventilator support for more than 60 days in five hospitals of the Taipei City Hospital System. Based on phenomenology, this study was conducted by using a semistructured questionnaire comprising three questions: (I) what was the most crucial moment of deciding to intubate? (II) how would you describe the quality of life of your ventilator-dependent family member? (III) what type of assistance do you expect from the PC team for your ventilator-dependent family member?
RESULTS: Twenty-one caregivers of patients on PMV in five hospitals of the Taipei City Hospital System agreed to participate in face-to-face interviews. The identified themes, including stressful decision-making, companion pain/discomfort, and unwillingness to accept PC, elucidated the difficulties experienced by caregivers when providing care.
CONCLUSIONS: Understanding family caregivers' experiences can enable physicians to improve communication with them, encourage the PC team to support them during surrogate decision-making for patients on PMV during critical moments, and enhance the overall PC service.
Making known one's end-of-life (EOL) care wishes via the processes of advance care planning (ACP) and advance directive (AD) completion is associated with many positive outcomes for patients including lower healthcare costs, greater patient-provider relationship satisfaction, increased quality of life, and more. Despite these benefits, fewer than 30% of patients in the United States engage in ACP or complete ADs. These low numbers are most likely due to several causes, including low self-efficacy and low motivation to engage in the process. Several researchers have examined the persuasive power of using worry to motivate patients to engage in preventive health behaviors. The present study expands upon this body of literature by examining patient intentions to seek information related to ACP and AD after being exposed to stimuli intended to arouse differing levels of worry regarding bad EOL outcomes. Participants (N = 804) were randomly assigned to either the high worry, low worry, or control group and asked to complete a questionnaire examining beliefs and information seeking intentions regarding ACP and AD completion. Additionally, to control for participants' level of trait worry, each participant completed the Penn State Worry Questionnaire, which was treated as a covariate in the final analysis. A repeated measures MANCOVA found a statistically significant increase for the worrying conditions on the participants' intention to seek information about ACP and ADs from time 1 to time 2 for those in the worry experimental conditions. However, those in the control group did not show a statistically significant increase. Additionally, exposure to the high worry condition was predictive of engaging in actual information seeking behavior about EOL care. Results of the experiment indicate worry is associated with greater motivation to engage in information seeking about ACP and AD. This study contributes to the literature on worry as a persuasive mechanism to motivate patients to engage in important preventative health behaviors.
CONTEXT: Providing hospice and palliative care (HPC) early in the course of care for patients with life-threatening illness is important for improving patient quality of life. However, little literature exists for factors affecting to the intention to use early palliative care (EPC) of general population.
OBJECTIVES: This study aimed to identify the sources of information about HPC, investigate whether they affect intention to use HPC and EPC, and examine the relationship between the components of a good death and the intention to use HPC and EPC.
METHODS: A stratified nationwide cross-sectional survey including 1,500 participants, 20 to 74 years old, was conducted to investigate their intentions to use HPC and EPC, available information sources, and perceived components of a good death.
RESULTS: The main sources of information about HPC were television and radio. Information acquired from health professionals was positively associated with the intention to use EPC. While regarding a good relationship with family as a component of a good death was related to low intention to use EPC, being able to trust medical staff, being involved in decisions about care, and being respected as an individual were associated with high intention to use EPC.
CONCLUSION: Information from healthcare providers and public awareness through education and publicity efforts are necessary to inform the public about the benefits of EPC. Furthermore, it is essential that medical staff cultivate the skills necessary to secure public trust and provide care that respects patients until the end of their lives.
Face à la masse de documents disponibles, l’utilisateur peut vite se sentir perdu lorsqu’il veut trouver de l’information pertinente. Malgré des moteurs de recherche de plus en plus performants, il est nécessaire de recourir à des outils spécialisés comme les thésaurus afin de gagner en temps et en pertinence. Nous présentons dans cet article comment sont construits les thésaurus, quand et comment les utiliser pour rendre une recherche documentaire plus efficace.
Les documentalistes sont des professionnels que les équipes soignantes croisent essentiellement au cours de leur formation initiale et de leur formation continue. Dans l’intervalle, au cours de leur carrière, les professionnels de santé voient peu de liens possibles à entretenir avec les documentalistes. Or, ceux-ci, grâce à leur analyse de l’information en soins palliatifs, sont une excellente ressource, tant pour les professionnels de santé que pour les patients. Cet article a pour objectif de décrire les bénéfices que peuvent tirer et les patients et les soignants d’une collaboration impliquant les documentalistes. Des pistes de réflexion sur des liens possibles sont également discutées.
Children's experiences of information and family communication when a parent has a life-threatening illness have been sparsely studied, though such information is important for the child's wellbeing. The aim of this study was to explore children's reports of illness-related information and family communication when living with a parent with a life-threatening illness. Forty-eight children, aged 7 to 19 years, were recruited from four specialized palliative home care units in Stockholm, Sweden. All but one child reported that someone had told them about the parent's life-threatening illness; however, two thirds wanted more information. A quarter of the teenagers reported that they had questions about the illness that they did not dare to ask. Half of the children, aged 8 to 12, reported that they felt partially or completely unable to talk about how they felt or show their feelings to someone in the family. Interventions are needed that promote greater family communication and family-professional communication.
Health information and communication are key elements that allow patients and family members to make decisions about end-of-life care and guarantee a death with dignity.
Objective: To understand caregivers' experiences regarding health information and communication during the illness and death of family members.
Methods: This qualitative study was conducted in Andalusia based on the paradigm of hermeneutic phenomenology. Participants were caregivers who had accompanied a family member at the end of life for over 2 months and less than 2 years. Five nominal groups and five discussion groups were established, and 41 in-depth interviews with 123 participants were conducted. Atlas.ti 7.0 software was used to analyze the discourses. A comprehensive reading was carried out along with a second reading. The most relevant units of meaning were identified, and the categories were extracted. The categories were then grouped in dimensions and, finally, the contents of each dimension were interpreted and described given the appropriate clarifications.
Results: Four dimensions of the dying process emerged: differences in caregivers' perceptions of information and communication, a conspiracy of silence, consequences of the absence or presence of information, and the need for a culture change.
Conclusions: Poor management of health information and communication at the end of life increased the suffering and discomfort of patients and their families. The culture of denying and avoiding death is still present today. A change in education about death would better enable health professionals to care for patients at the end of life.
BACKGROUND: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making.
OBJECTIVES: To understand the decisional needs of patients and families making decisions about hospice care.
METHODS: We conducted focus groups with family caregivers and hospice providers and one-on-one interviews with patients considering or enrolled in hospice care. We identified participants through purposeful and snowball sampling methods. All interviews were transcribed verbatim and analyzed using a grounded theory approach.
RESULTS: Four patients, 32 family caregivers, and 27 hospice providers participated in the study. Four main themes around decisional needs emerged from the interviews and focus groups: (1) What is hospice care?; (2) Why might hospice care be helpful?; (3) Where is hospice care provided?; and (4) How is hospice care paid for?
DISCUSSION: Hospice may not be the right treatment choice for all with terminal illness. Our study highlights where patients' and families' understanding could be enhanced to assure that they have the opportunity to benefit from hospice, if they so desire.
Objective: Acceptance of palliative care (PC) in the USA has increased in recent decades with the growing number of recommendations for adoption from professional organisations. However, there are prevalent public misperceptions of PC that may prevent broader utilisation. This study seeks to identify the primary sources for PC information, which may help identify sources of misperception and improve PC messaging.
Methods: We analysed the 2018 Health Information National Trends Survey (HINTS), a representative survey of USA population knowledge regarding cancer-related information. This is the first iteration to include questions on PC. Prevalence of preferred PC information sources was estimated; multivariable logistic regression invoking stepwise variable selection was used to determine associations with information-seeking behaviour.
Results Our study cohort consisted of 1127 American adults who were familiar with PC. Overall, 59.3% and 34.0% relied primarily on healthcare providers and internet or printed media, respectively. In stepwise regression models of seeking information from healthcare providers, predictors and their relative contributions to the multivariable model were higher education attainment (58.7%), age =60 years (21.5%) and female sex (15.0%). Higher income was the most robust predictor (35.1%) of reliance on internet and printed media for information, followed by being currently married (26.2%).
Conclusions Overall, American adults rely on healthcare providers and media for PC information, with significant sociodemographic differences in information-seeking behaviour. These findings may be used to inform strategies to promote accurate PC awareness.
Background: Differences in perception and potential disagreements between parents and professionals regarding the attitude for resuscitation at the limit of viability are common. This study evaluated in healthcare professionals whether the decision to resuscitate at the limit of viability (intensive care versus comfort care) are influenced by the way information on incurred risks is given or received.
Methods: This is a prospective randomized controlled study. This study evaluated the attitude of healthcare professionals by testing the effect of information given through graphic fact sheets formulated either optimistically or pessimistically. The written educational fact sheet included three graphical presentations of survival and complication/morbidity by gestational age. The questionnaire was submitted over a period of 4 months to 5 and 6-year medical students from the Geneva University as well as physicians and nurses of the neonatal unit at the University Hospitals of Geneva. Our sample included 102 healthcare professionals.
Results: Forty-nine responders (48%) were students (response rate of 33.1%), 32 (31%) paediatricians (response rate of 91.4%) and 21 (20%) nurses in NICU (response rate of 50%). The received risk tended to be more severe in both groups compared to the graphically presented facts and current guidelines, although optimistic representation favoured the perception of “survival without disability” at 23 to 25 weeks. Therapeutic attitudes did not differ between groups, but healthcare professionals with children were more restrained and students more aggressive at very low gestational ages.
Conclusion: Written information on mortality and morbidity given to healthcare professionals in graphic form encourages them to overestimate the risk. However, perception in healthcare staff may not be directly transferable to parental perception during counselling as the later are usually naïve to the data received. This parental information are always communicated in ways that subtly shape the decisions that follow.
BACKGROUND: Considerable gains are being made in data-driven efforts to advance quality improvement in health care. However, organizations providing hospice-oriented palliative care for structurally vulnerable persons with terminal illnesses may not have the enabling data infrastructure or framework to derive such benefits.
METHODS: We conducted a pilot cross-sectional qualitative study involving a convenience sample of hospice organizations across North America providing palliative care services for structurally vulnerable patients. Through semistructured interviews, we surveyed organizations on the types of data collected, the information systems used, and the challenges they faced.
RESULTS: We contacted 13 organizations across North America and interviewed 9. All organizations served structurally vulnerable populations, including the homeless and vulnerably housed, socially isolated, and HIV-positive patients. Common examples of collected data included the number of referrals, the number of admissions, length of stay, and diagnosis. More than half of the organizations (n = 5) used an electronic medical record, although none of the record systems were specifically designed for palliative care. All (n = 9) the organizations used the built-in reporting capacity of their information management systems and more than half (n = 6) augmented this capacity with chart reviews.
DISCUSSION: A number of themes emerged from our discussions. Present data collection is heterogeneous, and storage of these data is highly fragmented within and across organizations. Funding appeared to be a key enabler of more robust data collection and use. Future work should address these gaps and examine opportunities for innovative ways of analysis and reporting to improve care for structurally vulnerable populations.
BACKGROUND: Many people receiving palliative care wish to die at home. Often, support from family or friends is key to ensuring that this wish is fulfilled. However, carers report feeling underprepared to undertake this role. This paper describes the process of developing a consensus and evidence based website to provide core information to help people support someone receiving palliative care on the island of Ireland.
METHODS: The project comprised three phases: (1) a review of systematic reviews facilitated the identification of core information needs; (2) content was developed in collaboration with a Virtual Reference Group (VRG) comprising patients, carers and professionals; and, (3) subject experts within the project team worked with a web developer to précis the agreed content and ensure it was in a format that was appropriate for a website. Members of the VRG were then invited to test and approve the website before it was made available to the general public.
RESULTS: Nineteen systematic reviews identified nine consensus areas of core information required by carers; a description of palliative care; prognosis and treatment of the condition; medication and pain management; personal care; specialist equipment; locally available support services; what to do in an emergency; nutrition; and, support for the carer. This information was shared with the VRG and used to develop website content.
CONCLUSIONS: We engaged with service users and professionals to develop an evidence-based website addressing the agreed core information needs of non-professional carers who wish to provide palliative care to a friend or relative.
Cet article a pour objectif de présenter un livret d’information destiné aux patients d’une maladie lysosomale, à leurs familles et aux professionnels prenant soin d’eux. Ce livret tend à sensibiliser sur l’impact de la douleur chronique sur la qualité de vie et sur la démarche palliative. Les auteurs présentent le contexte de la construction de ce livret, son contenu et sa diffusion.
CONTEXT: Research Medical Donation (RMD), which entails collecting human tissue within hours after death, benefits cancer research but data are limited regarding barriers institutions face accruing patients to RMD programs.
OBJECTIVES: Generate stakeholder perspectives to best inform the complex RMD process, which includes communicating with patients and their proxies and procuring tissue in a timely manner, all the while respecting end-of-life care sensitivities.
METHODS: We explored perceived core needs and challenges of RMD by engaging stakeholders (cancer clinicians, patients, and their caregivers) in 8 teleconference focus groups. Breast, pancreatic, and lung cancer clinicians comprised 2 groups. Each cancer separately had 2 groups for patients and their caregivers combined. Qualitative analysis of focus group transcripts included identifying and reaching group consensus on transcript themes and establishing agreement on consensus templates to identify primary common and divergent themes.
RESULTS: A total of 45 people (13 clinicians, 24 patients, 8 caregivers) participated in the groups. The themes identified were: 1) clinicians and patients had limited previous knowledge about RMD; 2) RMD was perceived to mainly benefit research; 3) logistical and privacy questions arose; 4) introducing RMD was deemed sensitive, with patient-specific timing; 5) rare and/or virulent cancers appeared associated with willingness to participate in RMD.
CONCLUSION: Patients, families and cancer clinicians have generally low knowledge of RMD but upon learning about it, deem it valuable for scientific advancement (particularly for rare and virulent cancers), necessary to be carried out with individualized sensitivity to end-of-life issues, and through training programs with involved clinical staff.
OBJECTIVES: To evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased.
METHODS: A cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers. Flemish family carers of people who had made use of specialised palliative care services at home or in hospital were contacted.
RESULTS: Of all primary family carers (response rate of 53.5% resulting in n=1504), 77.7% indicated they were asked frequently by professionals how they were feeling. Around 75% indicated they had been informed about specific end-of-life topics and around 90% felt sufficiently supported before and immediately after the death. Family carers of people who had died in a palliative care unit, compared with other types of specialised palliative care services, indicated having received more information, support and aftercare.
CONCLUSIONS: Family carers evaluate the professional assistance provided more positively when death occurred in a palliative care unit. Policy changes might be needed to reach the same level of care across all specialised palliative care services.
Hospice documentation is an integral part of patient care as it not only paints the picture of hospice eligibility, but also tells the final chapter of a patient’s life. Increasingly, hospices are under scrutiny by regulators to clearly define the admission and ongoing eligibility of the hospice patient. There is a lack of national standardization of documentation. The World Health Organization, in an effort to develop a common language among providers, developed the International Classification of Functioning, Disability and Health (ICF). Utilizing the ICF can assist with the documentation that establishes the eligibility of the hospice patient. Concepts from the ICF are applied to a case study of a patient with Parkinson’s disease. The ICF has barriers and limitations for documentation of the eligibility of the hospice patient, but overall, its use is recommended by the hospice interdisciplinary team.
People with an inherited condition who receive palliative care may be missing out on the opportunity to store a DNA sample for future use by their families and offspring. A DNA sample from a family member affected with an inherited condition can help at-risk relatives to access accurate risk assessment and, where relevant, enhanced surveillance and risk-reducing measures. As genetic and genomic testing becomes increasingly important in all aspects of healthcare, health professionals specialising in palliative care will be asked to communicate about family history risk and testing. This article highlights the importance of discussing genetics and genomics issues for people receiving palliative care, their families and the health professionals caring for them.
The sudden and unexpected nature of fatal work incidents can leave family members with a strong need to know how and why the worker died. Forty Australian family members were interviewed to identify the information sought following fatal work incidents and explore the factors enhancing or impairing satisfaction with the account of the death. Findings demonstrated that employers tended to divert responsibility to the worker, to mask underlying systemic failures. Satisfaction was enhanced if family members believed a sense of justice was attained and formal investigations were able to expose the truth and those responsible for the death were identified.
Objectifs: L’implication des proches dans les soins palliatifs est considérée comme un élément essentiel de la qualité de la prise en charge du patient. Leur intégration est tributaire de leurs attentes vis à vis de l’unité de soins palliatifs et de leurs représentations des soins palliatifs. Dans un contexte où la population se dit peu informée, cette étude pilote visait à interroger la dynamique des attentes et des représentations des proches en unité de soins palliatifs dans le but d’améliorer la qualité de vie des patients et de leur famille.
Matériel et méthodes : L’approche compréhensive par une méthodologie qualitative a été privilégiée. Des entretiens semi-directifs auprès des proches ont été menés au sein d’une unité de soins palliatifs, à l’entrée puis quelques jours après.
Résultats : Huit proches de patients en soins palliatifs ont été inclus dans l’étude et deux d’entre eux ont pu participer au second entretien. Les proches témoignaient à leur entrée dans l’unité une attente commune, celle d’une prise en charge différente de celle vécue pendant les précédentes hospitalisations. Le besoin de sécurité apparaît en lien avec la crainte de l’abandon du patient et de ses proches et révèle un manque de connaissance sur le rôle de l’unité de soins palliatifs. La qualité des échanges instaurés d’emblée, grâce au premier entretien d’accueil avec le médecin, semble initier une réponse appropriée.
Conclusion: La dimension relationnelle apparaît comme un levier pour soutenir les proches dans leur besoin de sécurisation et d’informations. Une étude à plus grande échelle permettrait de comprendre davantage et plus précisément comment les proches traitent une période qui demeure insupportable et de proposer aux équipes soignantes des éléments d’une réponse mieux adaptée aux besoins et aux attentes.