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Within the United States, approximately 330 000 military veterans die annually, but only 5% of deaths occur in Veterans Health Administration (VHA) facilities. To help provide end-of-life care for veterans, the VHA built community partnerships with community hospice and palliative care (HPC) organizations. Veterans experience unique psychosocial factors making it vital to ensure HPC organizations have access to veteran-specific knowledge and resources to reduce suffering. To better understand the strengths and limitations of these partnerships, community HPC staff (N = 483) responded to quantitative and qualitative survey questions developed using an access to care theory for veterans. Survey responses demonstrated variable perceptions of access to VHA care and resources. Respondents reported excellent experiences (44%) and relationships with their local facility (50%) and had a reliable contact who provided needed assistance (92%). Thematic analysis identified a need for VHA care and barriers to access, which were associated with technical characteristics, and geographical and cultural issues. These findings can help inform future research and policy regarding access to VHA resources for end-of-life care for veterans in the community and guide resource development for community HPC providers.
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Hospitais para Doentes Terminais , Veteranos , Humanos , Morte , Estados Unidos , United States Department of Veterans Affairs , Veteranos/psicologia , Saúde dos VeteranosRESUMO
When ethics committees are consulted about patients who have or need court-appointed guardians, they lack empirical evidence about several common issues, including the relationship between guardianship and prolonged, potentially medically unnecessary hospitalizations for patients. To provide information about this issue, we conducted quantitative and qualitative analyses using a retrospective cohort from Veterans Healthcare Administration. To examine the relationship between guardianship appointment and hospital length of stay, we first compared 116 persons hospitalized prior to guardianship appointment to a comparison group (n = 348) 3:1 matched for age, diagnosis, date of admission, and comorbidity. We then compared 91 persons hospitalized in the year following guardianship appointment to a second matched comparison group (n = 273). Mean length of stay was 30.75 days (SD = 46.70) amongst those admitted prior to guardianship, which was higher than the comparison group (M = 7.74, SD = 9.71, F = 20.75, p < .001). Length of stay was lower following guardianship appointment (11.65, SD = 12.02, t = 15.16, p < .001); while higher than the comparison group (M = 7.60, SD = 8.46), differences were not associated with guardianship status. In a separate analysis involving 35 individuals who were hospitalized both prior to and following guardianship, length of stay was longer in the year prior (M = 23.00, SD = 37.55) versus after guardianship (M = 10.37, SD = 10.89, F = 4.35, p = .045). In qualitative analyses, four themes associated with lengths of stay exceeding 45 days prior to guardianship appointment were: administrative issues, family conflict, neuropsychiatric comorbidity, and medical complications. Our results suggest that persons who are admitted to hospitals, and subsequently require a guardian, experience extended lengths of stay for multiple complex reasons. Once a guardian has been appointed, however, differences in hospital lengths of stay between patients with and without guardians are reduced.
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Hospitalização , Tutores Legais , Humanos , Estudos RetrospectivosRESUMO
Nurses play an essential role in managing mental health conditions, such as posttraumatic stress disorder (PTSD), especially in rural areas where access to mental health care is limited. Posttraumatic stress disorder may emerge at the end of life and complicate health care and is a particular concern for aging Vietnam veterans. We describe the development of 3 videos that illustrate how to recognize PTSD, respond to trauma disclosures, and manage PTSD in cognitive impairment during an in-home hospice nurse visit. Through problem identification and needs assessment, we identified 6 goals and 28 specific content objectives presented through cinematic action with flashbacks or voice-over narration with graphics. Videos were evaluated through a survey (N = 155) and analysis of "chat" responses (N = 186) to targeted questions during a webinar presentation to clinicians (N = 345). Approximately 75% rated videos as "very much" relevant to needs, having helped learn something new, and realistic. Analysis of chat responses showed videos conveyed most content objectives (92%). In addition, participants stated videos were helpful in demonstrating nursing skills of listening, responding, and displaying empathy, as well as showing case presentations involving cognitive impairment and the patient experience. Participants expressed a desire for longer videos/more information including a wider range of PTSD presentations and comorbidities.
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Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Transtornos de Estresse Pós-Traumáticos , Humanos , Atenção à Saúde , Transtornos de Estresse Pós-Traumáticos/terapia , AprendizagemRESUMO
There are growing calls to broaden palliative care access to more populations, diseases, and care settings and to earlier in the disease process; yet, supply of specialty palliative care is not likely to keep pace with demand. This article discusses possible solutions by which to bridge the gap between limited palliative care supply and demand. The proposed solutions include: (1) specialist workforce development; (2) alternate models of care; (3) triaging systems; and (4) telemedicine. Education/training, research, and policy mechanisms could operationalize these solutions. With the solutions in hand, the field may be able to increase the reach, sustainability, and equity of palliative care, thereby improving access and enabling a multitude of positive patient, family, and health care system outcomes.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Telemedicina , Humanos , Cuidados Paliativos , EspecializaçãoRESUMO
Persons without family or friends to serve as healthcare agents may become "unrepresented" in healthcare, with no one to serve as healthcare agents when decisional support is needed. Surveys of clinicians (N = 81) and attorneys/guardians (N = 23) in Massachusetts reveal that unrepresented adults experience prolonged hospital stays (66%), delays in receiving palliative care (52%), delays in treatment (49%), and other negative consequences. Clinicians say guardianship is most helpful in resolving issues related to care transitions, medical treatment, quality of life, housing, finances, and safety. However, experiences with guardianship are varied, with delays often/always in court appointments (43%) and actions after appointments (24%). Policy solutions include legal reform, education, and alternate models.
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Tomada de Decisões , Tutores Legais , Atenção à Saúde , Humanos , Políticas , Qualidade de VidaRESUMO
At the end of life, individuals may re-engage with earlier life trauma as they reflect on life experiences and confront their mortality. As such, posttraumatic stress disorder (PTSD) symptoms at the end of life may worsen the quality of death experience. This is a concern for military veterans, who tend to have more trauma exposures and higher rates of PTSD, and particularly for veterans receiving care in rural areas where access to PTSD specialty services is limited. To better understand this issue, we conducted 10 focus groups with clinicians serving veterans in rural communities across five U.S. states. The aims of this project were to evaluate: (1) do hospice and palliative care providers/staff observe PTSD symptoms in veterans at the end of life? (2) if so, how are symptoms similar to and different from existing DSM-5 criteria for PTSD? We used qualitative content analysis with mixed deductive and inductive approaches to code 151 anonymized statements. Analyses found descriptions of PTSD symptoms aligned broadly with existing diagnostic nomenclature, but descriptions revealed specific presentations relevant to the end of life setting such as resistance to care, agitation, restlessness, and effects of delirium. In addition, some veterans expressed pride in service and openness to discussing military experiences. Further, clinicians noted that PTSD symptoms were relevant to family dynamics. Future research should further characterize these symptom differences through direct patient assessment and develop resources to improve quality of death experience for veterans with PTSD symptoms.
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CONTEXT: Guardians are surrogate decision makers appointed by a court when other health care decision-makers are unable, unwilling, or unavailable to make decisions. Prior studies suggest that persons under guardianship may experience delays in transitions of care. OBJECTIVES: To compare quality of end-of-life care for persons under guardianship to a matched group on objective indicators and to identify narrative themes characterizing potential obstacles to quality end-of-life care. METHODS: One hundred sixty-seven persons under guardianship who died between 2003 and 2019 within the Veterans Healthcare Administration in Massachusetts and Connecticut matched on a 1:1 basis to persons without guardians. The groups were compared on treatment specialty at death, days of hospice and intensive care unit care, and receipt of palliative care consultation. Additionally, patient narratives for those under guardianship with extended lengths in intensive care unit were subjected to qualitative analysis. RESULTS: Overall, <1% were under guardianship. Within this sample of persons who died within the Veterans Health Administration, persons under guardianship were as likely as patients in the comparison group to receive palliative care consultation (odds ratio [CI] = 0.93 [.590-1.46], P = .359), but were more likely to have ethics consultation (odds ratio [CI] = 0.25 [0.66-0.92], P = .036) and have longer lengths of ICU admission (ß = -.34, t = -2.70, P = .009). Qualitative findings suggest that issues related to family conflict, fluctuating medical course, and limitations in guardian authority may underlie extended lengths of stay. CONCLUSION: Guardianship appears to be rare, and as a rule, those under guardianship have equal access to hospice and palliative care within Veterans Health Administration. Guardianship may be associated with health-care challenges in a small number of cases, and this may drive perceptions of adverse outcomes.
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Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Unidades de Terapia Intensiva , Tutores Legais , Massachusetts , Cuidados PaliativosRESUMO
BACKGROUND: The Veterans Health Administration (VHA) entered the COVID-19 pandemic crisis with an existing and robust telehealth program, but it still faces a fundamental paradigm shift as most routine outpatient in-person care was converted to telehealth visits. Veterans are a highly trauma-exposed population, and VHA has long offered effective telemental health services. Natural disasters and pandemics like COVID-19 are known to be traumatic. Those with preexisting trauma exposure and mental health conditions are often at greater risk than the general population for long-term adverse health sequelae. Application of trauma-informed principles to telehealth care is critical and timely. OBSERVATIONS: Trauma-focused care (including telemental health) refers to evidence-based treatment models that directly facilitate recovery from trauma-related conditions like posttraumatic stress disorder. Despite the widespread availability of trauma-focused treatment in VHA, not all veterans chose to engage in it. In contrast, trauma-informed care (TIC) is a global, "universal precautions" approach to providing strengths-based, collaborative quality medical care in any discipline or location. In this article the authors, all primary care and mental health clinicians at VHA, advocate for the application of the 6 Substance Abuse and Mental Health Services Administration principles of trauma-informed care to telehealth. Using examples from telehealth research conducted in trauma-exposed patient populations, we illustrate the characteristics of telehealth that are well suited to delivery of trauma-informed care and suggest readily applicable strategies that can be used across disciplines including primary care and medical/surgical specialties. A primary care patient case scenario is included to illustrate how telehealth visits can be trauma-informed. CONCLUSIONS: Telehealth expansion has occurred nationally out of necessity during the COVID-19 pandemic. Trauma-informed virtual care has the potential to ensure and even expand continuity of medical care by fostering safe and collaborative interactions between patients and the health care team.
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Background: Despite the association between chronic pain and post-traumatic stress disorder (PTSD), little is known about the longitudinal course of pain and PTSD during cancer treatment. Objectives: We examined the prevalence of PTSD and chronic pain at three time periods in veterans with a diagnosis of cancer, and the relationship between the experience of pain and PTSD. Methods: Participants (N = 123) with oral-digestive cancers were recruited from the Veterans Healthcare System (age M = 65.31 and SD = 9.13; 98.4% male) and completed face to face interviews at 6, 12, and 18 months post-diagnosis. Measures included the Post-traumatic Stress Disorder Checklist-Stressor-Specific version (PCL-S), Primary care PTSD (PC-PTSD), and the Patient-Reported Outcomes Measurement Information System (PROMIS) Pain Impact Scale. Results: About one-third (26.8%) of the sample had chronic pain, defined as elevated pain at two time periods. About one-fifth (20.3%) endorsed symptoms of combat-related PTSD at 6 months, and 22.8% endorsed symptoms of cancer-related PTSD, exceeding a clinical cutoff for older adults (12 months = 21.1%, 18 months = 23.1%). Changes over time were observed for cancer-related PTSD symptom clusters of hyperarousal (F = 3.85 and p = 0.023) and emotional numbing (F = 4.06 and p = 0.018) with a statistically significant quadratic function increasing at 18 months. In logistic regression, individuals with both combat and cancer-related PTSD symptoms at six months had 8.49 times higher odds of experiencing chronic pain (χ2 = 25.91 and p < 0.001; R2 = 0.28). Conclusions: Persisting pain may be a concern in veterans with cancer. Individuals who have experienced traumatic events with persisting PTSD symptoms may be at elevated risk for chronic pain. Veterans with PTSD symptoms from both cancer and combat are at the highest risk to experience chronic pain.
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Sobreviventes de Câncer , Dor Crônica , Neoplasias , Transtornos de Estresse Pós-Traumáticos , Veteranos , Idoso , Pré-Escolar , Dor Crônica/epidemiologia , Feminino , Humanos , Masculino , Neoplasias/complicações , Prevalência , Transtornos de Estresse Pós-Traumáticos/epidemiologiaRESUMO
Opioids have long been a mainstay of symptom management in palliative care (PC), allowing patients with terminal illnesses to have an improved quality of life. Unfortunately, these same medications have contributed to the explosion of the opioid epidemic. This article explores the case of a patient with opioid use disorder (OUD) and pancreatic cancer. We share our experience of managing his symptoms and treating OUD in the setting of an outpatient PC clinic. We explore the challenges and joys of this case while reflecting on the need for more research investigating best practices for individuals where opioids serve as both a pain reliever and contributor to further suffering from their OUD.