Purpose: Visitor restrictions during the COVID-19 pandemic limit in-person family meetings for hospitalized patients. We aimed to evaluate the quantity of family meetings by telephone, video and in-person during the COVID-19 pandemic by manual chart review. Secondary outcomes included rate of change in patient goals of care between video and in-person meetings, the timing of family meetings, and variability in meetings by race and ethnicity.
Methods: A retrospective cohort study evaluated patients admitted to the intensive care unit at an urban academic hospital between March and June 2020. Patients lacking decision-making capacity and receiving a referral for a video meeting were included in this study.
Results: Most patients meeting inclusion criteria (N = 61/481, 13%) had COVID-19 pneumonia (n = 57/61, 93%). A total of 650 documented family meetings occurred. Few occurred in-person (n = 70/650, 11%) or discussed goals of care (n = 233/650, 36%). For meetings discussing goals of care, changes in patient goals of care occurred more often for in-person meetings rather than by video (36% vs. 11%, p = 0.0006). The average time to the first goals of care family meeting was 11.4 days from admission. More documented telephone meetings per admission were observed for White (10.5, SD 9.5) and Black/African-American (7.1, SD 6.6) patients compared to Hispanic or Latino patients (4.9, SD 4.9) (p = 0.02).
Conclusions: During this period of strict visitor restrictions, few family meetings occurred in-person. Statistically significant fewer changes in patient goals of care occurred following video meetings compared to in-person meetings, providing support limiting in-person meetings may affect patient care.
Background: Emergency department (ED) visits are common for older patients with chronic, life-limiting illnesses and may offer a valuable opportunity for clinicians to initiate proactive goals of care conversations (GoCC) to ensure end-of-life care that aligns with the patients' values, goals, and preferences.
Objectives: The purpose of this study is to assess whether GoCC are occurring with patients in Department of Veteran Affairs (VA) EDs, to characterize these patients' goals of care and life-sustaining treatment (LST) decisions, and to examine the extent to which palliative or hospice consultations occur following the ED visit.
Design: We conducted a cross-sectional retrospective study using health record data.
Settings/Subjects: A total of 10,780 patients receiving care in VA, whose first GoCC occurred during an ED visit.
Results: Of the patients in the study, approximately half were at least 70 years of age, three-quarters were white, and half had multiple serious disease comorbidities. The percentage of patients who desired cardiopulmonary resuscitation was lower among the highest risk (i.e., of hospitalization and death) patients (64% vs. 51%). The percentage of patients wanting other LSTs (e.g., mechanical ventilation) was higher among the lowest risk patients; and the percentage of patients requesting limits to LSTs was highest among higher risk patients. Eighteen percent of patients had a palliative or hospice care consult within three months of their ED visit.
Conclusions: In this study, we verified that GoCC are being initiated in the ED with Veterans at differing stages in their illness trajectory and that higher proportions of higher risk patients preferred to limit LSTs.
Purpose of Review: Communication skills in the ICU are an essential part of the care of trauma patients. The goal of this review is to summarize key aspects of our understanding of communication with injured patients in the ICU.
Recent Findings: The need to communicate effectively and empathetically with patients and identify primary goals of care is an essential part of trauma care in the ICU. The optimal design to support complex communication in the ICU will be dependent on institutional experience and resources. The best/worst/most likely model provides a structural model for communication.
Summary: We have an imperative to improve the communication for all patients, not just those at the end of their life. A structured approach is important as is involving family at all stages of care. Communication skills can and should be taught to trainees.
This article presents the case of a mother of young children who has terminal stage IV cancer with whom providers had not discussed goals of care and prognostication. Communications about prognostication and goals of care are commonly initiated by physicians. Adolescents and young and middle-age adults with complex chronic or terminal illness often are not provided with timely, clear, complete information or palliative care support. Early palliative care for chronically ill patients facilitates discussions of prognostication and goals of care, in addition to providing symptom management. Such discussions do not diminish hope but rather allow patients to adjust hope to attain an optimal quality of life. Nurses can become active, confident advocates for patients with terminal illness of any age, and they are well positioned to assess patients and engage in goals of care and end-of-life conversations. It is especially important that palliative care nurses promote and maintain these early and comprehensive discussions during the COVID-19 pandemic because this population is at a high risk of complications from the coronavirus.
Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professionals anticipate the future of the child and family in pediatric palliative care. Single and repeated interviews were undertaken with 42 parents and 35 healthcare professionals of 24 children, receiving palliative care. Anticipating the future was seen in three forms: goal-directed conversations, anticipated care, and guidance on the job. Goal-directed conversations were initiated by either parents or healthcare professionals to ensure others could align with their perspective regarding the future. Anticipated care meant healthcare professionals or parents organized practical care arrangements for future scenarios with or without informing each other. Guidance on the job was a form of short-term anticipation, whereby healthcare professionals guide parents ad hoc through difficult situations.
Conclusion: Anticipating the future of the child and family is mainly focused on achievement of individual care goals of both families and healthcare professionals, practical arrangements in advance, and short-term anticipation when a child deteriorates. A more open approach early in disease trajectories exploring perspectives on the future could allow parents to anticipate more gradually and to integrate their preferences into the care of their child. What is Known: ; Anticipating the future in pediatric palliative care occurs infrequently and too late. What is New: ; Healthcare professionals and parents use different strategies to anticipate the future of children receiving palliative care, both intentionally and unwittingly. Strategies to anticipate the future are goal-directed conversations, anticipated care, and guidance on the job. ; Parents and healthcare professionals are engaged to a limited extent in ongoing explorative conversations that support shared decision-making regarding future care and treatment.
CONTEXT: Cancer prognosis data often comes from clinical trials which exclude patients with acute illness.
OBJECTIVES: For patients with Stage IV cancer and acute illness hospitalization, to 1) describe predictors of 60-day mortality, and 2) compare documented decision-making for survivors and decedents.
METHODS: Investigators studied a consecutive prospective cohort of patients with Stage IV cancer and acute illness hospitalization. Structured health record and obituary reviews provided data on 60-day mortality (outcome), demographics, health status, and treatment; logistic regression models identified mortality predictors.
RESULTS: 492 patients with Stage IV cancer and acute illness hospitalization had median age of 60.2 (51% female, 38% minority race/ethnicity); 156 (32%) died within 60 days and median survival for decedents was 28 days. Nutritional insufficiency (OR 1.83), serum albumin (OR 2.15 per 1.0 g/dL) and hospital days (OR 1.04) were associated with mortality; age, gender, race, cancer and acute illness type were not predictive. On admission 79% of patients had orders indicating Full Code. During 60-day follow-up 42% of patients discussed goals of care. Documented goals of care discussions were more common for decedents than survivors (70% vs 28%, p<0.001), as were orders for DNR / DNI (68% vs 24%, p<0.001), stopping cancer-directed therapy (29% vs 10%, p<0.001), specialty Palliative Care (79% vs 44%, p<0.001) and Hospice (68% vs 14%, p<0.001).
CONCLUSION: Acute illness hospitalization is a sentinel event in Stage IV cancer. Short-term mortality is high; nutritional decline increases risk. For patients with Stage IV cancer, acute illness hospitalization should trigger goals of care discussions.
BACKGROUND: Individuals with advanced cancer and their families have negative end-of-life experiences when the care they receive is not aligned with their values and preferences.
OBJECTIVE: To obtain in-depth information on how patients with advanced cancer and the oncology and palliative care (PC) clinicians who care for them discuss goals of care (GoC).
DESIGN: The research team conducted in-depth interviews and qualitative data analysis using open coding to identify how perspectives on GoC discussions vary by stage of illness, and experience with PC teams.
SETTING/SUBJECTS: Twenty-five patients and 25 oncology and PC team members in a large multi-specialty group in Northern California.
RESULTS: At the time of diagnosis participants described having establishing GoC conversations about understanding the goal of treatment (e.g. to extend life), and prognosis ("How much time do I have?"). Patients whose disease progressed or pain/symptoms increased reported changing GoC conversations about stopping treatment, introducing hospice care, prognostic awareness, quality of life, advance care planning, and end-of-life planning. Participants believed in the fluidity of prognosis and preferences for prognostic communication varied. Patients appreciated how PC teams facilitated changing GoC conversations. Timing was challenging; some patients desired earlier conversations and PC involvement, others wanted to wait until things were "going downhill."
CONCLUSION: Patients and clinical teams acknowledged the complexity and importance of GoC conversations, and that PC teams enhanced conversations. The frequency, quality, and content of GoC conversations were shaped by patient receptivity, stage of illness, clinician attitudes and predispositions toward PC, and early integration of PC.
Elderly patients with advanced chronic kidney disease have high symptom burden, despite the progress in renal replacement therapy. Dialysis is not a good option especially for frail elderly patients with higher comorbidity rate. Integration of palliative and supportive care to conservative management improves quality of life and prolongs survival of these patients. Conservative management of symptoms, prognostication, communication of advance care plans and shared-decision making should be a part of physicians skills. There are some recommended prognostication systems in nephrology, which can help to facilitate the physician-patient communication about therapeutic goals of care. Ethical and jural aspects of the process are also very important.
A transitional care pathway (TCP) could improve care for older patients in the last months of life. However, barriers exist such as unidentified palliative care needs and suboptimal collaboration between care settings. The aim of this study was to determine the feasibility of a TCP, named PalliSupport, for older patients at the end of life, prior to a stepped-wedge randomized controlled trial.
BACKGROUND: Many patients receive unwanted, low-value, high-intensity care at the end of life because of poor communication with health care providers. Our aim was to evaluate the feasibility of using a physician assistant and an electronic tool to facilitate discussions about goals of care.
METHOD: We conducted a pilot study for the intervention (physician assistant-led discussion using an electronic tool) from Apr. 1 to Aug. 31, 2019. Patients aged 79 years or older admitted to the Royal Victoria Hospital (Barrie, Ontario) with either (i) no documented resuscitation preferences or (ii) a request for life-sustaining treatments in the event of a life-threatening illness were eligible for the intervention. The goal of this study was to complete more than 30 interventions. The primary outcomes included the proportion of consenting eligible patients, the time required and the proportion of patients changing their resuscitation preferences.
RESULTS: A total of 763 patients met the inclusion criteria, with 337 eligible for the intervention. Of these, 49 cases were contacted for consent, and 37 interventions were completed (75.5%, 95% confidence interval [CI] 61.1%-86.6%). On average, the intervention required 50 minutes (standard deviation 21) to complete. Overall, 31 interventions resulted in a change in resuscitation preferences (83.7%, 95% CI 68.0%-93.8%), with 22 patients choosing to forgo any access to life-sustaining treatments in the event of a life-threatening illness (59.4%, 95% CI 42.1%-75.2%).
INTERPRETATION: In this pilot study, the intervention was completed in a minority of eligible patients and required substantial time; however, it led to many changes in resuscitation preferences. Before designing a study to evaluate its impact, the intervention needs to be revised to make it more efficient to administer.
BACKGROUND: Medical Assistance in Dying (MAID) became legal in Canada in June 2016. As part of a project designed to improve end-of-life care for those requesting MAID, qualitative data from patients, families, and providers were used to assess opportunities to enhance patient-and family-centered care (PFCC) in this program.
METHODS: Thirty interviews were conducted with patients, families, and healthcare providers. Five patients who requested an assessment for MAID, 11 family members, and 14 healthcare providers were interviewed about their experiences in 2017. Comparative coding and thematic analysis were completed with the support of NVivo12.
RESULTS: Emotional PFCC considerations included: exploring and validating the emotional journey, navigating the uncertain, judgmental experiences, and the emotional impact on families and the care team. Physical PFCC considerations included: sensitivity in eligibility assessments, weaving in interdisciplinary care, provision of anticipatory guidance, and death location. Spiritual PFCC considerations included: honoring choice, listening to life stories, supporting spiritual needs, and acknowledging loss. Relational PFCC considerations included: defining the circle of support, supporting the circle, and relational investments.
CONCLUSION: Fundamental to a PFCC MAID program, practitioners must be afforded time to provide holistic care. Program-related suggestions include incorporating interdisciplinary care early, and throughout the illness trajectory, consistency in care providers, appropriate anticipatory guidance, and bereavement supports for family, and dedicate space for MAID provisions. Patients and families must be included in the ongoing development and re-evaluation of MAID programs to ensure continued focus on quality end-of-life care.
The choice to utilize hospice care in the nursing home when residents are experiencing progressive decline can promote positive quality of care and comfort for residents at the end of life. Concurrent hospice and nursing home care can be less aggressive, and improve symptom management and perceived quality by family members. Using a secondary analysis of retrospective data from the electronic medical record, this study identified predictors of hospice use among 300 nursing home decedents using a six-month look back period. Findings showed that having poorer physical status (weight loss), cognitive status, and having had a "goals of care" conversation were significantly associated with greater likelihood of using hospice in the nursing home in the last six months of life. Interdisciplinary team members who provide care on a daily basis and are in a position to detect worsening medical condition of residents and can facilitate advance planning. Care planning that includes examining goals of care and communication with hospice providers when multiple care providers are involved is essential.
Purpose: The purpose of the study is to capture goals expressed by older adults with functional limitations and their caregivers.
Methods: Through focus groups and interviews, 76 older adults with =1 activity of daily living limitation and 28 family/friend caregivers were asked about what mattered most to them and their goals for care. Transcripts were coded using an existing taxonomy. Goals that did not fit the taxonomy were assigned new codes.
Results: We identified more than 50 goals in eight domains. Domains included (a) Medical Care; (b) Quality of Life: Physical; (c) Quality of Life: Social and Emotional; (d) Access to Services and Supports; (e) Caregiver Needs and Concerns; (f) End of Life; (g) Independence; and (h) Acceptable Housing.
Conclusion: While there is overlap between identified goals and the existing taxonomy, new goals emerged. The goal domains identified could serve as a framework to improve and measure the quality of goal-oriented care for older adults with complex needs.
Background: Although there is growing evidence that close reading of literature and reflective writing can improve providers' appreciation of the patient experience, foster physician development, and combat burnout, there has been less work on the experience of reading literature with patients, and even less literature about its effect on those facing serious or life-threatening illness. In addition, longer form reading may be unsuitable for some patient populations, given high burden of fatigue and possible contribution of delirium. Time pressure may also preclude discussion by a practitioner working in a busy clinical context.
Hypothesis: We feel the condensed medium of poetry presents a natural opportunity to engage patients with the medical humanities, helping them to articulate difficult or joyful experiences, and/or serving as necessary diversion when facing serious illness.
Project Description: Poetry for patients-a project developed through collaboration between Northwestern Memorial Hospital, The Jesse Brown VA, and the Poetry Foundation in Chicago, an independent literary organization committed to a vigorous presence for poetry in our culture-has developed three short collections of poems, and an accompanying discussion guides for use specifically with patients and families. Hereunder, we present three case examples of a short (10-30 minutes) reading session with patients demonstrating that it is feasible to incorporate reading poetry with patients facing serious illness. Potential therapeutic value includes helping patients to articulate pain and joy, giving patients a vehicle to recapture their creative voice, and altering the power dynamics inherit to the provider-patient relationship. We have also noted enhanced life review, often on themes otherwise difficult to access. In turn, these readings have deepened our ability to see out patients as creative, intellectual, and larger than their medical illness.
Advances in the treatment of cancer have improved both the quantity and quality of life for patients in recent years. Better supportive care, improved therapies to moderate side effects and symptom management, the understanding of molecular mechanisms, and the advent of targeted agents and immunotherapy have all improved the outcome for many cancer patients. Yet, the sad reality is that most patients will eventually succomb to their disease.
[Début de l'article]
The COVID-19 pandemic has precipitated the need for frequent end-of-life discussions. The circumstances surrounding these conversations are quite atypical. Here, I describe one such goals-of-care discussion during the pandemic and how I relied on the precedent of prior goals-of-care discussions to guide me through an unprecedented situation.
BACKGROUND: Despite increased annual mortality in long-term care (LTC) homes, research has shown that care of dying residents and their families is currently suboptimal in these settings. The purpose of this study was to evaluate resident and family outcomes associated with the Strengthening a Palliative Approach in LTC (SPA-LTC) program, developed to help encourage meaningful end of life discussions and planning.
METHODS: The study employs a mixed method design in four LTC homes across Southern Ontario. Data were collected from residents and families of the LTC homes through chart reviews, interviews, and focus groups. Interviews with family who attended a Palliative Care Conference included both closed-ended and open-ended questions.
RESULTS: In total, 39 residents/families agreed to participate in the study. Positive intervention outcomes included a reduction in the proportion of emergency department use at end of life and hospital deaths for those participating in SPA-LTC, improved support for families, and increased family involvement in the care of residents. For families who attended a Palliative Care Conference, both quantitative and qualitative findings revealed that families benefited from attending them. Residents stated that they appreciated learning about a palliative approach to care and being informed about their current status.
CONCLUSIONS: The benefits of SPA-LTC for residents and families justify its continued use within LTC. Study results also suggest that certain enhancements of the program could further promote future integration of best practices within a palliative approach to care within the LTC context. However, the generalizability of these results across LTC homes in different regions and countries is limited given the small sample size.
We propose that the palliative care team response will occur in two ways: first, communication and second, symptom management. Our experience with discussing goals of care with the family of a COVID-positive patient highlighted some expected and unexpected challenges. We describe these challenges along with recommendations for approaching these conversations. We also propose a framework for proactively mobilizing the palliative care workforce to aggressively address goals of care in all patients, with the aim of reducing the need for rationing of resources.
BACKGROUND: The 3 Wishes Project (3WP) is an end-of-life program that honors the dignity of dying patients by fostering meaningful connections among patients, families, and clinicians. Since 2013, it has become embedded in the culture of end-of-life care in over 20 ICUs across North America. The purpose of the current study is to describe the variation in implementation of 3WP across sites, in order to ascertain which factors facilitated multicenter implementation, which factors remain consistent across sites, and which may be adapted to suit local needs.
METHODS: Using the methodology of qualitative description, we collected interview and focus group data from 85 clinicians who participated in the successful initiation and sustainment of 3WP in 9 ICUs. We describe the transition between different models of 3WP implementation, from core clinical program to the incorporation of various research activities. We describe various sources of financial and in-kind resources accessed to support the program.
RESULTS: Beyond sharing a common goal of improving end-of-life care, sites varied considerably in organizational context, staff complement, and resources. Despite these differences, the program was successfully implemented at each site and eventually evolved from a clinical or research intervention to a general approach to end-of-life care. Key to this success was flexibility and the empowerment of frontline staff to tailor the program to address identified needs with available resources. This adaptability was fueled by cross-pollination of ideas within and outside of each site, resulting in the establishment of a network of like-minded individuals with a shared purpose.
CONCLUSIONS: The successful initiation and sustainment of 3WP relied on local adaptations to suit organizational needs and resources. The semi-structured nature of the program facilitated these adaptations, encouraged creative and important ways of relating within local clinical cultures, and reinforced the main tenet of the program: meaningful human connection at the end of life. Local adaptations also encouraged a team approach to care, supplementing the typical patient-clinician dyad by explicitly empowering the healthcare team to collectively recognize and respond to the needs of dying patients, families, and each other.
Anyone’s life can turn upside down. Illness, disease, and accidents can jeopardize the life of anyone at any time. For families and their loved ones who fall victim to a serious medical crisis or disease, a little preparation can make a big difference. A 2018 survey revealed that 92% of adults know it is important to share their medical preferences with family and medical providers in preparation for end of life. Only 32% report they have shared their wishes.
[Début de l'article]