Sharing is Caring: Minimizing the Disruption with Palliative Care.

There is an upward trend incidence of multiple chronic life-limiting conditions with a well-documented associated impact on patients and their caregivers. When patients approach the end of life, they are often faced with a challenging multidimensional burden while navigating a complex health care system. Patients and families/caregivers are faced with daily decisions, often with little or no frame of reference or medical knowledge. The "what, how, when, and where" puzzle during this challenging time can be overwhelming for patients and their families, and when clinicians do not contemplate this associated workload's impact on patients and caregivers' capacity for self-care, patients and caregivers scramble to find compensatory solutions, often putting their health care at lower priority. This consequently warrants the underlying importance of palliative care and integrating it into the patients' health care plans earlier. There is increasing evidence from recent trials that supported implementing national policies regarding the early integration of palliative care and its role in improving the quality of life, increasing survival, and supporting patients' and caregivers' values when making decisions about their health care while possibly minimizing the burden of illness. The mission of palliative care is to assess, anticipate, and alleviate the challenges and suffering for patients and their caregivers by providing well-constructed approaches to disease-related physical treatments as well as psychological, financial, and spiritual aspects. Communication among all participants (the patient, family/caregivers, and all involved health care professionals) ought to be timely, thorough, and patient-centric. Palliative medicine arguably represents an example of shared decision-making (SDM)-facilitating a patient-centered, informed decision-making through an empathic conversation that is supported by clinicians' expertise and the best available evidence that takes patients values and preferences into consideration. Palliative care teams often consider the burden placed on patients and their caregivers, thus treatment plans would be assessed and introduced into the patients' lives with reflection on the related workload and the potential capacity to take on those plans. Such an approach to pause-and-examine, understand-and-discuss, and assess-and-alleviate might provide a possible example of a health care system that is minimally disruptive to patients and their families. This is an opportunity to replace the information-filled encounter with a more constructive engagement and empowerment to all major stakeholders to participate-an axiom integral to palliative care. Using the best available evidence in caring for patients while enacting SDM, palliative care, primary care, and other subspecialty clinicians need to consider the significant workload and burden that comes with health care and thus explore pathways to minimize the disruption in patients and caregivers' lives. As we collaborate to end cancer and all other mobdeities, we a need a concurrent movement to transform this disease-centered, payer-driven health care era to a rather patient-entered, thoughtful, and minimally disruptive one will benefit patients and physicians alike.

Patient-reported distress and survival among patients receiving definitive radiation therapy.

OBJECTIVE: Patient-reported distress (PRD) has not been well assessed in association with survival after radiation therapy (RT). The aims of this study were to evaluate the association between PRD level and survival after definitive RT and to identify the main causes of distress in definitive RT patients. METHODS AND MATERIALS: A total of 678 consecutive patients receiving definitive RT at our institution from April 2012 through May 2015 were included. All patients answered a PRD questionnaire that contained 30 items related to possible causes of distress, which could be rated from 1 (no distress) to 5 (high distress). Additionally, patients were asked to rate their overall distress level from 0 (no distress) to 10 (extreme distress). This overall distress level was our primary patient-reported distress measure and was examined as a continuous variable and as a categorical variable with 3 PRD levels (low, 0-3 [n = 295]; moderate, 4-6 [n = 222]; and high, 7-10 [n = 161]). RESULTS: As a continuous variable in multivariable Cox regression analysis, a higher overall PRD level was associated with poorer survival after RT (hazard ratio [HR], 1.39; P = .004). As a categorical variable, compared with patients with low distress, survival was poorer for patients with moderate distress (HR, 1.62; P = .038) or high distress (HR, 1.49; P = .12), but the latter difference was not significant. When the moderate and high distress levels were combined, survival was significantly poorer compared with the low distress level (HR, 1.57; P = .034). The top 5 specific causes of distress that patients mentioned were "How I feel during treatment," "Fatigue," "Out-of-pocket medical costs," "Pain that affects my daily functioning," and "Sleep difficulties." CONCLUSIONS: PRD before or during RT is a prognostic factor associated with decreased survival. Distress screening guidelines and interventions should be implemented for patients receiving definitive RT.

A preliminary study comparing attitudes toward hospice referral between African American and white American primary care physicians.

UNLABELLED: End-of-life (EOL) decision making is an integral component of high-quality health care. Factors influencing individual primary care physicians (PCPs) can affect their perspectives and referral preferences for EOL care. Numerous barriers have been cited, including patient and family readiness, physicians' comfort with discussing death, and the pursuit of a cure. This study explores another barrier by examining physician ethnicity and comparing the attitudes toward hospice referral between African American and white American primary care providers (PCPs). Training PCPs to efficiently transition from a curative model of care to a palliative model of care has the potential to increase the level of appropriate EOL care, increase hospice referral, and enhance patient and provider satisfaction; it is also fiscally prudent. This preliminary study aims to compare attitudes toward hospice referral and physicians' personal experiences with hospice between African American and white American PCPs. METHODS: The survey tool was developed by PCPs at the Mayo Clinic Florida after a full literature review and consultation with hospice physicians, oncology specialists, and primary care colleagues from the residency programs at Mayo Minnesota and Mayo Arizona, with input from the Mayo Survey Office, and distributed to all physicians and residents in the departments of Family Medicine at via Mayo's intranet; Mayo's Midwest Regional Practices (245 physicians) received the survey via standard mail. The survey consisted of 17 questions regarding attitudes toward hospice referral and the one question regarding physicians' personal experience with hospice. The final sample size consisted of 167 white American physicians and 46 African American physicians. Responses were compared using a Wilcoxon rank sum test. P values ≤ 0.05 were considered statistically significant. All statistical analyses were performed using the SAS software package (SAS Institute, Cary, North Carolina). RESULTS: The distributions of physician age, specialty, board certification, and years practicing medicine were similar between African American and white American physicians, while male gender was more common in white American physicians than African American physicians. Statistically significant differences in attitudes toward hospice between African American and white American physicians were observed for five of the 17 survey questions. There was a dramatic difference in the distribution of patient race between African American and white American physicians, raising the possibility that any differences between white American and African American physicians could be attributed to patient race, rather than physician race. Due to survey limits, larger studies involving more African American physicians are needed to address this topic. CONCLUSION: The results of our preliminary study suggest that certain attitudes toward hospice referral may differ between African American and white American PCPs. If validated, further insight into this issue could lead to educational programs for PCPs that correct misperceptions.

Evaluation of limitation-of-medical-treatment forms used in emergency medicine residency programs in the United States.

BACKGROUND: Patients are encouraged to complete limitation-of-medical-treatment forms (LMTFs), sometimes referred to as code status forms or do-not-resuscitate forms, before admission to hospitals or other health care facilities in the United States. OBJECTIVE: The purpose of this study was to review, evaluate, and to assess the LMTFs currently used in emergency medicine residency training programs throughout the United States. METHODS: In February 2009, researchers sent letters to all allopathic and osteopathic emergency medicine residency program directors (n = 193) requesting a copy of the LMTF used in their hospital. These forms were evaluated for content, consistency, and readability. RESULTS: Sixty-five responses were received (corrected response rate = 34%); 45 LMTFs were reviewed. Nineteen LMTFs required the signature of the patient, or the patient's appointed durable power of attorney for health care. The readability ranged from 11th to 17th grade (mean ± SD = 13.16 ± 1.77), greatly exceeding the average Americans' 8(th)-grade reading level. CONCLUSIONS: Our findings demonstrate that there is no standardization across LMTFs currently used in hospitals throughout the United States, and these forms are written above the literacy level of the average American adult. Therefore, there is a need to develop and disseminate an LMTF that is both consistent and better understood by the average American adult.