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1.
BMJ Lead ; 2024 Mar 29.
Article in English | MEDLINE | ID: mdl-38553036

ABSTRACT

OBJECTIVES: To understand the impact of public discourse and reaction around the COVID-19 pandemic on healthcare worker (HCW) experiences and well-being caring for patients with COVID-19. METHODS: We conducted 60 min in-depth interviews with 11 physicians and 12 nurses who were providing care to patients with COVID-19 in acute care settings at two health systems in the Western USA. Interviews were conducted in Spring-Summer 2022 using a semi-structured interview protocol that guided respondents through different stages of the pandemic. RESULTS: Three themes emerged from the data around providing care in the unique social context of the COVID-19 pandemic including: (1) public polarisation and disagreement with science; (2) feelings of hope and optimism during the pandemic and (3) the compounded strain of providing care within this unique social context of the pandemic. CONCLUSIONS: To prepare for future pandemics, improved public health communications and social-emotional supports for HCWs are critical to ameliorate the physical and emotional impacts related to the social context of modern US pandemic response.

2.
J Healthc Manag ; 69(1): 59-73, 2024.
Article in English | MEDLINE | ID: mdl-38175535

ABSTRACT

GOAL: This article explores how broad, contextual factors may be influential in the retention of direct care workers (DCWs; i.e., entry-level caregivers) who provide vital support to patients in healthcare settings. We reflect on lessons learned from an evaluation of a multisite intervention to improve retention among DCWs employed primarily in hospital settings at three health systems. METHODS: We evaluated a multitiered program for entry-level caregivers that included a risk assessment, a 4-day curriculum, and follow-up sessions, as well as workforce coaching at the three health systems. As part of our evaluation, we collected data on roughly 3,000 DCWs from the three health systems; the information included hiring date, any transfer date, and any termination date for each new DCW, as well as demographic information, position characteristics, and termination status and reasons for any termination. In addition, we collected information about organizational characteristics, including staffing and number of employees. We also conducted interviews with 56 DCWs and 21 staff members who implemented a retention program across each of the three health systems and remotely conducted virtual observations of the curriculum sessions at each system. PRINCIPAL FINDINGS: Although the program we evaluated focused on individual-level factors that may affect retention, our findings revealed other broader, contextual challenges faced by DCWs that they said would have an impact on their willingness to stay in their positions. These challenges included (1) job-related factors including limited compensation, aspects of the job itself, and the inability to advance in one's position; (2) health system challenges including the mission, policies, staffing, and organizational culture; and (3) external factors including federal policies and the ongoing COVID-19 pandemic. PRACTICAL APPLICATIONS: As the direct care workforce continues to grow, interventions to improve retention should consider the interconnectedness of these multilevel factors rather than solely individual-level factors. In addition, further research is needed to rigorously evaluate any potential intervention and consider how such an approach can target DCWs in hospital-based settings who are most affected by the multilevel challenges identified. Finally, any intervention to improve retention must be also aligned to ensure equity, especially in this population of low-wage DCWs, many of whom are marginalized women and individuals of color.


Subject(s)
COVID-19 , Pandemics , Humans , Female , Workforce , Curriculum , Health Facilities
3.
Am J Crit Care ; 32(5): 368-374, 2023 09 01.
Article in English | MEDLINE | ID: mdl-37652873

ABSTRACT

BACKGROUND: The COVID-19 pandemic created unprecedented conditions for clinicians providing end-of-life care in acute care settings, yet almost 2 years since the start of the pandemic, little is known about its impact on clinicians. OBJECTIVES: To qualitatively explore how clinicians experienced their role as they cared for dying patients with COVID-19 during the pandemic and the impact of these experiences on their lives as health care professionals. METHODS: In-depth, hour-long interviews were conducted by phone in the spring of 2022 at a single time point with 23 physicians and nurses in critical care and emergency department settings from 2 health systems in California. The goal was to elicit perspectives on experiences with end-of-life care and the long-term impact of these experiences. Clinicians were asked to reflect on the different stages of the pandemic, and interviews were analyzed using a thematic analysis. RESULTS: The interviews highlighted 2 primary themes around provision of end-of-life care during the COVID-19 pandemic. First, clinicians described challenges around their clinical duties of providing care to dying patients, which included decision-making dilemmas and professionalism challenges. Second, clinicians described the emotional aspects around end-of-life care situations they experienced, including communication with family members, "being patients' family members" at the end of life, and various degrees of meaning-making and remembrance of these experiences. CONCLUSIONS: The findings highlight the sustained and cumulative emotional challenges and burden clinicians are still shouldering more than 2 years after the start of the pandemic.


Subject(s)
COVID-19 , Terminal Care , Humans , Pandemics , Qualitative Research , Critical Care
4.
HEC Forum ; 35(4): 371-388, 2023 Dec.
Article in English | MEDLINE | ID: mdl-35290566

ABSTRACT

While a significant literature has appeared discussing theoretical ethical concerns regarding COVID-19, particularly regarding resource prioritization, as well as a number of personal reflections on providing patient care during the early stages of the pandemic, systematic analysis of the actual ethical issues involving patient care during this time is limited. This single-center retrospective cohort mixed methods study of ethics consultations during the first surge of the COVID 19 pandemic in Massachusetts between March 15, 2020 through June 15, 2020 aim to fill this gap. Results indicate that there was no significant difference in the median number of monthly consultation cases during the first COVID-19 surge compared to the same period the year prior and that the characteristics of the ethics consults during the COVID-19 surge and same period the year prior were also similar. Through inductive analysis, we identified four themes related to ethics consults during the first COVID-19 surge including (1) prognostic difficulty for COVID-19 positive patients, (2) challenges related to visitor restrictions, (3) end of life scenarios, and (4) family members who were also positive for COVID-19. Cases were complex and often aligned with multiple themes. These patient case-related sources of ethical issues were managed against the backdrop of intense systemic ethical issues and a near lockdown of daily life. Healthcare ethics consultants can learn from this experience to enhance training to be ready for future disasters.


Subject(s)
COVID-19 , Ethics Consultation , Humans , COVID-19/epidemiology , Pandemics , Retrospective Studies , Communicable Disease Control , Academic Medical Centers
5.
J Palliat Med ; 26(2): 220-227, 2023 02.
Article in English | MEDLINE | ID: mdl-35969381

ABSTRACT

Background: Racial and ethnic disparities are well-documented in health care but generally understudied in palliative care. Objective: The goal of this mixed-methods study was to examine differences in patient experiences by race/ethnicity in palliative care and to qualitatively explore minoritized patient experiences with care for a serious illness. The data for this study were collected as part of a larger national effort to develop quality measures for outpatient palliative care. Setting/Subjects: Patients receiving outpatient palliative care (n = 153 Black patients and 2215 White patients) from 44 palliative care programs across the United States completed the survey; 14 patients and family caregivers who identified as racial/ethnic minorities participated in an in-depth qualitative interview. Measurements: We measured patients' experiences of (1) feeling heard and understood by their palliative care provider and team and (2) receiving desired help for pain using items developed from the larger quality measures project. We also conducted in-depth interviews with 14 patients and family caregivers to understand their experiences of palliative or hospice care to provide additional insight and understand nuances around minoritized patient experiences with palliative care. Results: Survey responses demonstrated that a similar proportion of Black patients and White patients (62.9% vs. 69.3%, p = 0.104) responded "completely true" to feeling heard and understood by their provider and team. Fewer Black patients than White patients felt that their provider understood what was important to them (53.3% vs. 63.9%, p = 0.009). The majority of Black patients and White patients (78.7% vs. 79.1%, p = 0.33) felt that they had received as much help for their pain as they wanted. Interviews with patient and family caregivers revealed positive experiences with palliative care but demonstrated experiences of discrimination in health care before referral to palliative care. Conclusion: Future work is needed to understand nuances around minoritized patient experiences with palliative care and receiving pain and symptom management.


Subject(s)
Ethnicity , Palliative Care , Humans , United States , Palliative Care/methods , Black People , Pain , Patient Outcome Assessment
6.
J Appl Gerontol ; 42(4): 776-781, 2023 04.
Article in English | MEDLINE | ID: mdl-36474360

ABSTRACT

We sought to examine how technology is currently utilized in home care and how the integration of new technologies in the completion of tasks may change the future of work for home care workers (HCWs), including personal care aides and home health aides. We triangulated data from three sources: A scoping review, interviews with HCWs, and monthly stakeholder input from 17 experts in home care and technology. Our findings suggest that while current technology use is limited and rudimentary within home care, technology may be especially beneficial in mitigating challenges around communication handoffs among HCWs. Our study points to the potential for the introduction and integration of technology into home care, particularly for communication to improve direct care worker experiences in providing care to vulnerable clients in their homes.


Subject(s)
Home Care Services , Home Health Aides , Humans , Self Care
7.
Gerontol Geriatr Med ; 8: 23337214221131403, 2022.
Article in English | MEDLINE | ID: mdl-36275410

ABSTRACT

The purpose of this study was to evaluate patient, family, and provider perspectives on routine cognitive screening of older adults in primary care using a novel self-assessment tool for detection of early cognitive impairment (CI). We conducted four virtual focus groups with patients aged 65 and older with no CI (n = 18) and family caregivers of patients with CI (n = 5) and interviews with primary care providers (n = 11). Patient and family caregiver participants felt that early detection of CI was important in primary care and may facilitate planning for the future including finances, living arrangements, and advance care planning. Providers reported that they do not use a standardized tool to routinely screen patients for CI yet endorsed the use of a self-assessment CI screening tool. These results suggest that routine screening of older adults using a brief, self-assessment screening tool for CI in primary care may be acceptable to patients, family caregivers, and providers. The findings from this study will inform the development of a brief self-assessment CI screening tool for use in primary care.

9.
J Palliat Med ; 25(7): 1079-1087, 2022 07.
Article in English | MEDLINE | ID: mdl-35506994

ABSTRACT

Background: The COVID-19 pandemic introduced a rapid adoption and scale-up of telehealth for palliative care services in the United Sates. Objectives: To examine and compare in-person versus telehealth experience among outpatient palliative care programs and patients. Design: Mixed-methods study (1) comparing patient experience survey data received between September 2020 and February 2021 from patients who received only in-person care versus those who received only telehealth and (2) qualitative interviews with outpatient palliative care providers. Data for this study were collected as part of a larger effort to develop quality measures for outpatient palliative care in the United States. Setting/Subjects: Outpatient palliative care patients and programs. Measurements: We measured patients' experiences of "feeling heard and understood" by their palliative care provider and team and their overall rating of their provider and team. We also conducted in-depth semistructured interviews with 47 palliative care providers across 25 outpatient palliative care programs. Results: Of 1753 patient experience surveys, 26% reflected telehealth only versus 74% in-person only. Patients in both groups reported highly positive experiences; there were no differences in "feeling heard and understood" or the overall ratings of the provider and team between the telehealth-only and in-person-only groups. Palliative care program leaders described the benefits and challenges of telehealth, including increased efficiency, the ability to incorporate family members, and challenges conducting a physical examination. Conclusion: Data from this study provide preliminary evidence of overall positive experiences of telehealth for outpatient palliative care among patients and providers; future research is needed to examine the sustainability of telehealth for palliative care.


Subject(s)
COVID-19 , Telemedicine , Humans , Outpatients , Palliative Care/methods , Pandemics , Telemedicine/methods , United States
10.
HEC Forum ; 34(1): 73-88, 2022 Mar.
Article in English | MEDLINE | ID: mdl-33136221

ABSTRACT

Critical care society guidelines recommend that ethics committees mediate intractable conflict over potentially inappropriate treatment, including Do Not Resuscitate (DNR) status. There are, however, limited data on cases and circumstances in which ethics consultants recommend not offering cardiopulmonary resuscitation (CPR) despite patient or surrogate requests and whether physicians follow these recommendations. This was a retrospective cohort of all adult patients at a large academic medical center for whom an ethics consult was requested for disagreement over DNR status. Patient demographic predictors of ethics consult outcomes were analyzed. In 42 of the 116 cases (36.2%), the patient or surrogate agreed to the clinician recommended DNR order following ethics consultation. In 72 of 74 (97.3%) of the remaining cases, ethics consultants recommended not offering CPR. Physicians went on to write a DNR order without patient/surrogate consent in 57 (79.2%) of those cases. There were no significant differences in age, race/ethnicity, country of origin, or functional status between patients where a DNR order was and was not placed without consent. Physicians were more likely to place a DNR order for patients believed to be imminently dying (p = 0.007). The median time from DNR order to death was 4 days with a 90-day mortality of 88.2%. In this single-center cohort study, there was no evidence that patient demographic factors affected ethics consultants' recommendation to withhold CPR despite patient/surrogate requests. Physicians were most likely to place a DNR order without consent for imminently dying patients.


Subject(s)
Cardiopulmonary Resuscitation , Ethics Consultation , Adult , Cohort Studies , Hospitals , Humans , Policy , Resuscitation Orders , Retrospective Studies
11.
Health (London) ; 26(3): 267-283, 2022 05.
Article in English | MEDLINE | ID: mdl-32748652

ABSTRACT

End-of-life decision-making is an important area of research, and few sociological studies have considered family grief in light of end-of-life decision-making in the hospital. Drawing on in-depth interviews with family members in the intensive care unit (ICU) during an end-of-life hospitalization and into their bereavement period up to six months after the death of the patient, this article examines bereaved family members' experiences of grief by examining three aspects from the end-of-life hospitalization and decision-making in the ICU that informed their subsequent bereavement experiences. First, this article explores how the process of advance care planning (ACP) shaped family experiences of grief, by demonstrating that even prior informal conversations around end-of-life care outside of having an advance directive in the hospital was beneficial for family members both during the hospitalization and afterwards in bereavement. Second, clinicians' compassionate caring for both patients and families through the "little things" or small gestures were important to families during the end-of-life hospitalization and afterwards in bereavement. Third, the transition time in the hospital before the patient's death facilitated family experiences of grief by providing a sense of support and meaning in bereavement. The findings have implications for clinicians who provide end-of-life care by highlighting salient aspects from the hospitalization that may shape family grief following the patient's death. Most importantly, the notion that ACP as a social process may be a "gift" to families during end-of-life decision-making and carry through into bereavement can serve as a motivator to engage patients in ACP.


Subject(s)
Bereavement , Death , Family , Grief , Hospitalization , Humans , Intensive Care Units
12.
J Pain Symptom Manage ; 63(2): 293-300, 2022 02.
Article in English | MEDLINE | ID: mdl-34389415

ABSTRACT

CONTEXT: Despite rapid growth in outpatient palliative care, we lack an understanding of patient and caregiver experiences of care received in this context. OBJECTIVES: As part of a national effort to develop palliative care quality metrics for use in accountability programs, we sought to develop survey items assessing patients' experiences of outpatient palliative care, incorporating the patient's voice. METHODS: We conducted 25 one-hour telephone cognitive interviews using a convenience sample of outpatient palliative care patients and caregivers to cognitively test survey items. Guided by a semi-structured protocol, we assessed the comprehensibility, ambiguity, and adaptability of survey instructions and specific items/response options. RESULTS: Participants generally understood the intended meaning of the question content. Some participants struggled with the stated time period of three months as a reference period for reporting their experiences. While some expressed preferences for question wording, no clear patterns emerged across participants. CONCLUSION: In general, question wording and response options did not present challenges to understanding content. Respondents ascribed a variety of meanings to the concepts, validating that the measures capture a range of experiences. However, the referenced timeframe of three months was more difficult to answer for some questions than others. Implications for research, policy or practice: Based on the findings from the cognitive testing, the survey items are being tested as part of a national study to understand the quality of care for patients. These measures may be used in the future by Medicare to help outpatient palliative care programs improve their care.


Subject(s)
Caregivers , Hospice and Palliative Care Nursing , Aged , Caregivers/psychology , Humans , Medicare , Palliative Care/methods , Quality Indicators, Health Care , United States
13.
J Am Geriatr Soc ; 69(10): 2908-2915, 2021 10.
Article in English | MEDLINE | ID: mdl-34077563

ABSTRACT

OBJECTIVE: Advance care planning (ACP) is critically important for heart failure patients, yet important challenges exist. Group visits can be a helpful way to engage patients and caregivers in identifying values and preferences for future care in a resource-efficient way. We sought to evaluate the impact of group visits for ACP among older adults with heart failure and their caregivers on ACP-related outcomes. METHODS: We conducted a mixed-methods pilot study evaluating the impact of an ACP group visit for older adults with heart failure and their caregivers on ACP-related outcomes including readiness and self-efficacy. The evidence-based PREPARE for Your Care video-based intervention was used to guide the group visits. Twenty patients and 10 caregivers attended one of the five 90-min group visits led by a trained facilitator. Group visit participants completed pre-, post-, and 1-month follow-up surveys using validated 5-point ACP readiness and self-efficacy scales. Qualitative feedback obtained within 3 days of a group visit was analyzed using a directed content analysis. RESULTS: Patient participants had a median age of 78 years. Approximately half were female while caregiver participants were mostly female. Participants were predominantly white. Patient readiness scores improved significantly pre-to-post (+0.53; p = 0.002) but was not sustained at 1-month follow-up. Patient and caregiver self-efficacy showed some improvement pre-to-post but was also not sustained at follow-up. Interviews revealed positive impacts of group visits across the three themes: encouraging reviewing or revisiting prior ACP activities, motivating patients to take direct steps towards ACP, and serving as a "wake-up" call to action. CONCLUSIONS: Disease-focused group visits may have a short-term effect on ACP outcomes but ongoing touchpoints are likely necessary to sustain ACP over time. The results highlight a need for follow-up ACP conversations after a single group visit. Timing for follow-ups and the ideal person to follow-up ACP conversations needs to be explored.


Subject(s)
Advance Care Planning/statistics & numerical data , Heart Failure/therapy , Shared Medical Appointments/statistics & numerical data , Aged , Aged, 80 and over , Caregivers , Female , Humans , Male , Outcome Assessment, Health Care , Pilot Projects , Preliminary Data , Qualitative Research , Self Efficacy
14.
J Palliat Med ; 24(11): 1667-1672, 2021 11.
Article in English | MEDLINE | ID: mdl-33826426

ABSTRACT

Background: The key to high-quality care at the end of life is goal-concordant care, defined as care that is consistent with patient wishes. Objectives: To characterize decedent wishes for care at the end of life and to examine next of kin narratives of their loved ones' perceptions of whether wishes were honored. Design: Mortality follow-back survey and in-depth interviews. Setting/Subjects: Survey responses (n = 601) were from next of kin of decedents who died in the San Francisco Bay area of the United States. Interviews were conducted with 51 next of kin, of whom 14 indicated that the decedent received care that was inconsistent with their wishes. Measurements: The survey asked if the decedent had wishes or plans for care and if care provided ever went against those wishes. In-depth interviews focused on aspects of care at the end of life that were not consistent with the decedent's wishes. Results: Approximately 10% of next of kin who reported on the survey that the decedent had specific wishes for medical care at the end of life also reported that the decedent received care that went against their wishes in the last month of life. The main theme of the in-depth interviews with next of kin who reported care that went against wishes was that discordant care was inconsistent with wishes for comfort-focused care and a lack of symptom palliation. Conclusions: Despite decades of work to improve quality of end-of-life care, poor pain and symptom management that result in lack of comfort remain the main reason that next of kin state wishes were not honored.


Subject(s)
Hospice Care , Terminal Care , Death , Family , Humans , Palliative Care , United States
15.
J Am Board Fam Med ; 34(2): 375-386, 2021.
Article in English | MEDLINE | ID: mdl-33833006

ABSTRACT

BACKGROUND: Advance care planning (ACP) is critical for older adults with heart failure; however, patient-level and clinician-level barriers exist. Although a group visit (GV) approach to engage patients in ACP has proven effective among general geriatric populations, little is known about clinician perceptions/likelihood of referral. METHODS: Qualitative study to understand clinician perspectives on GVs for ACP among older adult patients with heart failure and caregivers. Twenty physicians and advance practice providers participated in telephone-based interviews guided by a semistructured research protocol. Transcripts were analyzed using a grounded theory approach. RESULTS: Results highlight variability in clinician engagement in ACP but greater agreement around the factors that prompt discussions. Qualitative themes included (1) inherent properties of GVs (characteristics that make GVs ideal for most but less ideal for some, risk-to-benefit ratio); (2) purpose of GVs (general education, "priming the pump" for subsequent discussions, providing tools for action); and (3) format and procedures for GVs (inclusion/exclusion considerations, organizing by unifying characteristic, link back to clinicians). CONCLUSIONS: This is the first study to gain clinician insights into ACP GVs specific to patients and caregivers affected by heart failure. Results shed light on an important topic and suggest key considerations for conducting GVs for ACP.


Subject(s)
Advance Care Planning , Heart Failure , Aged , Caregivers , Heart Failure/therapy , Humans , Qualitative Research
16.
J Bioeth Inq ; 18(2): 291-303, 2021 Jul.
Article in English | MEDLINE | ID: mdl-33638124

ABSTRACT

Systematic study of the intersection of ethics consultation services and solid organ transplants and recipients can identify and illustrate ethical issues that arise in the clinical care of these patients, including challenges beyond resource allocation. This was a single-centre, retrospective cohort study of all adult ethics consultations between January 1, 2007, and December 31, 2017, at a large academic medical centre in the north-eastern United States. Of the 880 ethics consultations, sixty (6.8 per cent ) involved solid organ transplant, thirty-nine (65.0 per cent) for candidates and twenty-one (35.0 per cent ) for recipients. Ethics consultations were requested for 4.3 per cent of heart, 4.9 per cent of lung, 0.3 per cent of liver, and 0.3 per cent of kidney transplant recipients over the study period. Nurses were more likely to request ethics consultations for recipients than physicians (80.0 per cent vs 20.0 per cent , p = 0.006). The most common reason for consultation among transplant candidates was discussion about intensity of treatment or goals of care after the patient was not or was no longer a transplant candidate. The most common reason for ethics consultation among transplant recipients was disagreement between transplant providers and patients/families/non-transplant healthcare professionals over the appropriate intensity of treatment for recipients. Very few consultations involved questions about appropriate resource allocation. Ethics consultants involved in these cases most often navigated communication challenges between transplant and non-transplant healthcare professionals and patients and families.


Subject(s)
Ethics Consultation , Organ Transplantation , Physicians , Adult , Ethicists , Humans , Retrospective Studies , United States
17.
J Am Board Fam Med ; 34(1): 171-180, 2021.
Article in English | MEDLINE | ID: mdl-33452095

ABSTRACT

BACKGROUND: Group visits have the potential to help patients identify their health care values and engage in the emotionally and cognitively challenging task of advance care planning (ACP) in a resource-efficient manner by providing a forum for social learning and social support. OBJECTIVE: To evaluate the feasibility and acceptability of disease-specific group visits for patients with heart failure and their caregivers. DESIGN: Feasibility trial of a 90-minute group visit held for 10 separate groups and led by a trained facilitator using the video-based PREPARE for Your Care ACP tool. SETTING/SUBJECTS: Older adults with recent hospitalization for heart failure (n = 36; median age, 74 years) and their caregivers (n = 21). MEASUREMENTS: Pre- and post-visit surveys and a postvisit telephone interview assessing perceived value and acceptability; structured nonparticipant observations to assess process and feasibility. RESULTS: Mean scores from the postgroup visit evaluation showed that participants reported that they felt comfortable discussing ACP in a group (4.59), understood the information covered (4.70), and were able to identify and clarify their health care values (4.43). Interview and observation data demonstrated that participants were able to identify and clarify their preferences by listening and learning from a diverse range of perspectives in the group and that the disease-focused nature of the group visit created a supportive space for participants to share their experiences. CONCLUSIONS: Disease-focused ACP group visits were feasible to conduct and acceptable to participants, underscoring their value as an efficient intervention to engage patients and caregivers in the otherwise time- and resource-intensive task of ACP.


Subject(s)
Advance Care Planning , Heart Failure , Aged , Caregivers , Feasibility Studies , Heart Failure/therapy , Humans , Surveys and Questionnaires
18.
J Palliat Med ; 24(8): 1147-1153, 2021 08.
Article in English | MEDLINE | ID: mdl-33326317

ABSTRACT

Background: Little is known about end-of-life care experiences of Asian Americans and gaps in end-of-life care quality between Asians and non-Hispanic whites. Objective: Compare the perceptions of next-of-kin of Asian and non-Hispanic white decedents on end-of-life care quality. Design: Mortality follow-back survey. Setting/Subjects: Population-based sample of 108 Asian and 414 non-Hispanic white bereaved family members or close friends of adult, nontraumatic deaths in the San Francisco Bay area in 2018. Measurements: Survey items examined whether health care professionals treated the dying person with respect and dignity, respected their cultural traditions, respected their religious or spiritual beliefs, provided enough information about what to expect during the last month of life, provided emotional support to the family after the patient's death, and whether the dying person and the family received the needed help after work hours. Results: Of the 623 surveys (weighted n = 6513), 108 (weighted percentage = 17.6%) were from caregivers of Asian decedents. Almost half of these respondents indicated that they did not always experience respect for their cultural traditions (45.9% vs. 21.8%, p = 0.00) or respect for their religious and spiritual beliefs (42.2% vs. 24.5%, p = 0.01). With the exception of two outcomes, worse caregiver-reported care quality for Asian decedents persisted after adjustment for cause of death, site of death, type of health insurance, respondent's relationship to decedent, decedent age, and respondent education. Conclusions: Compared with caregivers of non-Hispanic whites, caregivers of Asian decedents reported unmet needs for caregiver support and lack of respect for cultural traditions and religious/spiritual beliefs.


Subject(s)
Asian , Terminal Care , Adult , Family , Hispanic or Latino , Humans , Race Factors , San Francisco
19.
Sociol Health Illn ; 42(4): 877-891, 2020 05.
Article in English | MEDLINE | ID: mdl-32133674

ABSTRACT

In recent years, increases in medical technologies in the critical care setting have advanced the practice of medicine, enabling patients to live longer while also creating dilemmas for end-of-life decision-making. Clinicians have increasingly been called on to involve patients and family members in decision-making through a process of shared decision-making (SDM), yet less is known about how SDM plays out in the critical care setting and the ways in which clinicians engage in SDM. Using observational data from 14 months of ethnographic fieldwork in two intensive care units and interviews with 33 family members of 25 critically ill patients and 51 clinicians, I explore how clinicians refer to the choices available in medical decision-making paradoxically as a 'buffet' of choice while they simultaneously recognise that such rhetoric is misaligned with complex and emotional decision-making, often involving pain and suffering. Lastly, this paper considers the role of SDM and the ways in which clinicians push back on the 'buffet' rhetoric and engage in practices to guide families in end-of-life decision-making by granting permission for families to make decisions and validating their decisions to decline treatment when there is an opportunity for more treatment.


Subject(s)
Decision Making , Negotiating , Death , Humans , Intensive Care Units , Technology
20.
Psychosomatics ; 61(2): 161-170, 2020.
Article in English | MEDLINE | ID: mdl-31812218

ABSTRACT

BACKGROUND: The opioid epidemic has resulted in an increased number of patients with opioid use disorder (OUD) hospitalized for serious medical conditions. The intersection between hospital ethics consultations and the opioid crisis has not received significant attention. OBJECTIVE: The aim of this study was to characterize ethics consult questions among inpatients with OUD at our institution, Massachusetts General Hospital. METHODS: We conducted a single-center retrospective cohort study of ethics consultations from January 1, 1993 to December 31, 2017 at Massachusetts General Hospital. RESULTS: Between 1993 and 2017, OUD played a central role in ethics consultations in 43 of 1061 (4.0%) cases. There was an increase in these requests beginning in 2009, rising from 1.4% to 6.8% of consults by 2017. Compared with other ethics cases, individuals with OUD were significantly younger (P < 0.001), more likely to be uninsured or underinsured (P < 0.001), and more likely to have a comorbid mental health diagnosis (P = 0.001). The most common reason for consultation involved continuation of life-sustaining treatment in the setting of overdose with neurological injury or severe infection. Additional reasons included discharge planning, challenges with pain management and behavior, and the appropriateness of surgical intervention, such as repeat valve replacement or organ transplant. Health care professionals struggled with their ethical obligations to patients with OUD, including when to treat pain with narcotics and how to provide longitudinal care for patients with limited resources outside of the hospital. CONCLUSION: The growing opioid epidemic corresponds with a rise in ethics consultations for patients with OUD. Similar factors associated with OUD itself, including comorbid mental health diagnoses and concerns about relapse, contributed to the ethical complexities of these consults.


Subject(s)
Alcoholism/rehabilitation , Ethics Consultation , Opioid-Related Disorders/rehabilitation , Substance-Related Disorders/rehabilitation , Adult , Alcoholism/epidemiology , Cohort Studies , Comorbidity/trends , Cross-Sectional Studies , Drug Overdose/epidemiology , Drug Overdose/rehabilitation , Ethics Consultation/statistics & numerical data , Ethics Consultation/trends , Female , Forecasting , Health Services Needs and Demand/statistics & numerical data , Health Services Needs and Demand/trends , Hospitalization , Humans , Male , Massachusetts , Medically Uninsured/statistics & numerical data , Middle Aged , Opioid-Related Disorders/epidemiology , Pain Management/methods , Pain Management/statistics & numerical data , Patient Discharge/trends , Referral and Consultation/statistics & numerical data , Referral and Consultation/trends , Retrospective Studies , Risk Factors , Substance-Related Disorders/epidemiology
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