Abstract
Research indicates that the increasing population of >25 million people in the United States who have limited English proficiency experience differences in decision making and subsequent care at end of life in the ICU when compared with the general population. The objective of this qualitative study was to assess the perceptions of health care team members about the factors that influence discussions and decision making about end of life for patients and family members with limited English proficiency in the ICU. Forty semistructured interviews with ICU physicians, nurses, and interpreters were conducted at three ICUs at Mayo Clinic Rochester. Results demonstrated that six key differences in end-of-life decision making for patients with limited English proficiency compared with patients without limited English proficiency were identified: (1) clinician communication is modified and less frequent, (2) clinician ability to assess patient and family understanding is impaired, (3) relationship building is impaired, (4) patient and family understanding of decision-making concepts (e.g., palliative care) is impaired, (5) treatment limitations are often perceived to be unacceptable due to faith-based and cultural beliefs, and (6) patient and family decision-making styles are different. Facilitators of high-quality decision making in patients with limited English proficiency included (1) premeeting between clinician and interpreter, (2) interpretation that communicates empathy and caring, (3) bidirectional communication of cultural perspectives, (4) interpretation that improves messaging including appropriate word choice, and (5) clinician cultural humility. The authors conclude that end-of-life decision making is significantly different for ICU patients with limited English proficiency. Participants identified several barriers and facilitators to high-quality end-of-life decision making for ICU patients and families with limited English proficiency. Awareness of these factors can facilitate interventions to improve high-quality, compassionate, and culturally sensitive decision making for patients and families with limited English proficiency.
Madelaire C, Gustafsson F, Kristensen SL, et al. Burden and causes of hospital admissions in heart failure during the last year of life. JACC: Heart Failure 2019;7:561–570
Hospitalizations in heart failure (HF) are common, especially in the last period of the lives of patients with HF, but little is known about hospitalization burden and causes during this phase of the disease. This study aimed to evaluate the incidence and causes of hospitalization in the year preceding death of patients with HF. From Danish nationwide registries, the authors identified 32,157 patients who died in the period 2001 to 2016 after having experienced HF for at least one year, and examined hospitalizations during the last year of life in age- and gender-stratified analyses. Results demonstrated that median age at time of death was 81 years; 39% were women. A total of 26,561 (84%) patients were hospitalized at least once during the last year of life. The patients experienced a median of 2 (1–3) hospitalizations and spent 14 (3–31) days in the hospital. Of all hospitalizations (n = 80,362), 9644 (12%) were due to HF, 14,738 (18%) due to other cardiovascular (CV) causes, and 51,696 (64%) due to non-CV causes (p < 0.001). The frequency of hospitalizations increased toward death, but the domination of non-CV causes remained consistent throughout the year, regardless of age and gender. If the authors included diagnoses covering renal insufficiency in the definition of HF hospitalizations, non-CV hospitalizations remained dominant (58%). The authors conclude that during the last year alive, patients with HF were more often hospitalized due to non-CV causes rather than HF. These findings warrant more focus on a multidisciplinary approach toward end-of-life care in patients with HF.
Antonacci R, Baxter S, Henderson JD, et al. Hospice palliative care (HPC) and medical assistance in dying (MAiD): Results from a Canada-wide survey. J Palliat Care 2019. [E-pub ahead of print], doi.org/10.1177/0825859719865548
With the legalization of medical assistance in dying (MAiD) in Canada, physicians and nurse practitioners now have another option within their scope of practice to consider alongside hospice palliative care to support the patient and family regardless of their choice toward natural or medically assisted death. To elucidate insights and experiences with MAiD since its inception and to help adjust to this new end-of-life care environment, the membership of the Canadian Hospice Palliative Care Association (CHPCA) was surveyed. The CHPCA developed and distributed a 16-item survey to its membership in June 2017, one year after the legalization of MAiD. Data were arranged in Microsoft® Excel and open-ended responses were analyzed thematically using NVivo 12 software. Results demonstrated that across Canada, 452 responses were received (response rate: 15%). The majority of individuals worked as nurses (n = 161, 33%), administrators (n = 79, 16%), volunteers (n = 76, 16%), and physicians (n = 56, 11%). Almost 75% (n = 320) of all respondents indicated that they had experienced a patient in their program who had requested MAiD. Participants expressed dissatisfaction with the current psychological and professional support being provided by their health care organization and Ministry of Health—during and after the MAiD procedure. The authors conclude that the new complexities of MAiD present unique challenges to those working in the health-care field. There needs to be an increased focus on educating and training providers, because without proper support, health-care workers will be unable to perform to their full potential and scope of practice while also providing patients with holistic and accessible care.
Tarberg AS, Kvangarsnes M, Hole T, et al. Silent voices: Family caregivers' narratives of involvement in palliative care. NursingOpen 2019. https://doi.org/10.1002/nop2.344
The aim of this qualitative study was to explore how family caregivers experience involvement in palliative care. Eleven bereaved family caregivers for patients with cancer receiving palliative care were interviewed in Mid-Norway between November 2016 and May 2017. Results demonstrated that four themes were identified related to family caregivers' experiences of involvement in the early, middle, terminal, and bereavement phases of palliative care: (1) limited involvement in the early phase, (2) emphasis on patient-centered care in the middle phase, (3) lack of preparation for the dying phase, and (4) lack of systematic follow-up after death. Family caregivers experienced low level of involvement throughout the palliative pathway. The authors conclude that the involvement of family caregivers in palliative care may not be proportional to their responsibilities. The needs of family caregivers should be addressed in nursing education to give nurses competence to support family caregivers in providing home-based care.
Taber JM, Ellis EM, Reblin M, et al. Knowledge of and beliefs about palliative care in a nationally-representative U.S. sample. PLoS One 2019. doi.org/10.1371/journal.pone.0219074
Palliative care aims to improve quality of life for people with serious illness and their families. One potential barrier to palliative care uptake is inaccurate knowledge and/or negative beliefs among the general population, which may inhibit early interest in, communication about, and integration of palliative care after subsequent illness diagnosis. The authors explored knowledge and beliefs about palliative care among the general public using nationally representative data collected in 2018 as part of the cross-sectional Health Information National Trends Survey. Only individuals who had heard of palliative care (n = 1162) were queried on knowledge and beliefs. The authors examined whether self-assessed level of awareness of palliative care (i.e., knowing a little vs. enough to explain it) was associated with the relative likelihood of having accurate/positive beliefs, inaccurate/negative beliefs, or responding “don't know” to questions about palliative care. Respondents who indicated knowing a lot about palliative care had more accurate versus inaccurate knowledge than those who knew a little on only two of six items and more positive attitudes on only one of three items. In particular, respondents with greater awareness were equally likely to report that palliative care is the same as hospice and requires stopping other treatments, and equally likely to believe that palliative care means giving up and to associate palliative care with death. Those with higher awareness were less likely than those with lower awareness to respond “don't know,” but greater awareness was not necessarily associated with having accurate or positive beliefs about palliative care as opposed to inaccurate or negative beliefs. Thus, even members of the general public who perceived themselves to know a lot about palliative care were often no less likely to report inaccurate knowledge or negative beliefs (vs. accurate and positive, respectively).
Laurent A, Reignier J, Le Gouge A, et al. “You helped me keep my head above water”—experience of bereavement research after loss of a loved one in the ICU: insights from the ARREVE study. Int Care Med 2019;45:1252–1261
Bereavement research has helped to improve end-of-life practices in the ICU. However, few studies have explored bereaved relatives experience of research participation in this context. In this study, the authors aimed to explore the experience of bereaved relatives' participation in the ARREVE study, which included three telephone follow-up calls to complete several quantitative tools. Volunteer relatives who participated in the 12-month follow-up call completed a questionnaire about research participation that included 10 open-ended questions so that respondents could use their own words and thoughts. These open-ended questions were analyzed using qualitative analysis that examines themes within the data. Results demonstrated that 175 of 311 relatives completed the questionnaire. Three themes were derived from the thematic analysis, (1) struggling: reactivation of emotional distress associated with the ICU experience and the loss is frequent, specifically during the first follow-up call. (2) Resilience: as time goes by, research participation becomes increasingly positive. The calls are a help both in giving meaning to the relatives' experience and in accepting the loss. (3) Recognition: research calls can compensate for the absence of support during bereavement. The authors conclude that although some emotional difficulties must be acknowledged, bereavement research is overall associated with benefits, by facilitating emotional adjustments, meaning making, and resilience. Lack of support and social isolation during bereavement are frequent experiences, revealing that support strategies for bereaved relatives should be developed after the loss of a loved one in the ICU.