Author Interviews, End of Life Care, Hearing Loss / 09.07.2020

MedicalResearch.com Interview with: Elizabeth Blundon PhD Department of Psychology University of British Columbia – Vancouver MedicalResearch.com: What is the background for this study? Response: Many healthcare workers have noticed that dying patients appear to be comforted by the words of their loved ones, even when patients appear to be unconscious and are no longer able to communicate. There is a persistent belief, therefore, that hearing may persist into the last hours of someone's life. Our study attempts to detect evidence of hearing among a small group of unresponsive hospice patients at the end of life. To do this, we compared the brain activity of young, healthy control participants, with the brain activity of hospice patients, both when the patients were awake and responsive, and again when they became unresponsive. The brain activity we measured was in response to a complex series of tone-patterns, where participants were asked to identify by pressing a button (control participants) or by counting (hospice patients) every time they heard a tone-pattern that was different from the rest of the series. (more…)
Author Interviews, Cancer Research, End of Life Care, JAMA / 19.09.2019

MedicalResearch.com Interview with: Donald Sullivan, MD, MA, MCR Associate Professor of Medicine & Associate Fellowship Program Director Division of Pulmonary & Critical Care Medicine Oregon Health & Science University Investigator, Center to Improve Veteran Involvement in Care (CIVIC) VA-Portland Health Care System MedicalResearch.com: What is the background for this study?
  • Patients with lung cancer suffer from considerable physical and psychological symptom burden and palliative care is underutilized or delivered too close to death to provide meaningful benefits for these patients. Palliative care is associated with improved quality of life for these patients, but the findings regarding a survival benefit are not clear.
  • Palliative care is distinct from hospice. Palliative care is meant to be delivered along with disease-modifying therapy and focuses on improving quality of life by addressing pain and other problems, including physical, psychosocial and spiritual for patients and their families. Hospice care is focused on reducing suffering, pain and anxiety at the very end of life; typically within a few months of death.
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Author Interviews, End of Life Care, Health Care Systems, JAMA / 08.04.2019

MedicalResearch.com Interview with: Cindy L. Cain, PhD Assistant Professor Department of Sociology University of Alabama at Birmingham Birmingham, AL 35233 MedicalResearch.com: What is the background for this study? What are the main findings? Response: The End of Life Option Act permits terminally ill Californians to request a prescription for medications that would hasten death, providing they meet all requirements of the law and follow the steps outlined by their health care provider. However, the law also allows health care providers and organizations to opt out of participating. Until now, we did not know how common it was for entire health care organizations to opt out. In this study, we found that 61% of the surveyed hospitals prohibited physician participation in the End of Life Option Act. Thirty-nine percent of hospitals did allow participation in the law; these participating hospitals were less likely to be religiously affiliated and more likely to be nonprofit. (more…)
Author Interviews, Brigham & Women's - Harvard, Critical Care - Intensive Care - ICUs, End of Life Care, JAMA / 21.03.2019

MedicalResearch.com Interview with: Joanna Paladino, MD Director of Implementation, Serious Illness Care Program | Ariadne Labs Brigham and Women's Hospital | Harvard T.H. Chan School of Public Health Palliative Care | Dana-Farber Cancer Institute Instructor | Harvard Medical School and Dr. Rachelle Bernacki MD MS Director of Quality Initiatives Psychosocial Oncology and Palliative Care Senior Physician, Assistant Professor of Medicine Harvard Medical School Dr. Paladino's responses: MedicalResearch.com: What is the background for this study? What are the main findings? Dr. Paladino: People living with serious illness face many difficult decisions over the course of their medical care. These decisions, and the care patients receive, should be guided by what matters most to patients, including their personal values, priorities, and wishes. These conversations don’t often happen in clinical practice or do so very late in the course of illness, leaving patients exposed to getting care they don’t want. Doctors and nurses want to have these important discussions, but there are real challenges, including insufficient training and uncertainties about when and how to start the conversation. We designed an intervention with clinical tools, clinician training, and systems-changes to address these challenges. When tested in a randomized clinical trial in oncology, we found that the intervention led to more, earlier, and better conversations between oncology clinicians and their patients with life-limiting cancer. These findings demonstrate that it is possible to ensure reliable, timely, and patient-centered serious illness conversations in an outpatient oncology practice. (more…)
Author Interviews, Cancer Research, Cost of Health Care, JAMA / 27.07.2018

MedicalResearch.com Interview with: Manali Patel MD MPH Assistant Professor of Medicine, Oncology Stanford Palo Alto Veterans Affairs Health Care System MedicalResearch.com: What is the background for this study? What are the main findings? Response: In prior work, many patients with advanced stages of cancer report a lack of understanding of their prognosis and receipt of care that differs from their preferences. These gaps in care delivery along with the unsustainable rise in healthcare spending at the end-of-life and professional healthcare provider shortages led our team to consider new ways to deliver cancer care for patients. Based on input from focus groups with patients, caregivers, oncology care providers and healthcare payers, we designed a novel model of cancer care to address these gaps in care delivery. The intervention consisted of a well-trained lay health worker to assist patients with understanding and communicating their goals of care with their oncology providers and caregivers. We found that patients who received the six-month intervention reported greater satisfaction with the care they received and their decision-making, had higher rates of hospice use, lower acute care use, and 95% lower total healthcare expenditures in the last month of life. The intervention resulted in nearly $3 million dollars in healthcare savings. (more…)
Author Interviews, End of Life Care / 19.07.2018

MedicalResearch.com Interview with: Ann H Cottingham MA MAR Indiana University School of Medicine Indianapolis,IN. MedicalResearch.com: What is the background for this study? What are the main findings? Response: Advance care planning provides patients with cancer an opportunity to reflect on future care and treatment options with their physician and family and identify and document their preferences in preparation for a time when they may be unable to speak for themselves. Advance care planning increases both quality of life and satisfaction with care, however the majority of patients with cancer have not participated in these important conversations. Common emotional responses to cancer, such as feelings of anxiety, fear, and sadness, pose one barrier to planning as they can keep patients from thinking about or discussing sensitive topics related to their illness. We conducted a pilot study to explore whether training in mindfulness, the psychological process of bringing one's attention to experiences occurring in the present, could enhance the ability of patients and families to consider and discuss emotionally challenging topics -- such as end-of-life preparations -- and support timely advance care planning. Twelve patient-family caregiver pairs participated in a pilot study of Mindfully Optimizing Delivery of End-of-Life (MODEL) Care, which combined mindfulness meditation, mindful communication practices, and information about advance care planning. MODEL Care focused on developing emotional and communication capacities to enable patients and their family caregivers to respond to the experience of living with advanced cancer and to talk about the disease and future care preferences with greater ease. The study found that MODEL Care successfully supported patients and their family caregivers in thinking about and then talking about the care they would want to receive if they become unable to speak for themselves, enhancing their ability to respond to emotional challenges, and decreasing barriers to end-of-life planning. MODEL Care improved patient and caregiver ability to cope, lowered emotional reactivity, and enhanced ability to respond to issues that incited emotion. It also strengthened the patient-caregiver relationship and enhanced communication with each other. MODEL Care also improved both patient and family caregiver communication with the physicians caring for the patient. Patients noted that the practices enabled them to cope more effectively with the symptoms of their disease, including pain. Caregivers reported changes in their loved one's ability to cope with their disease following the mindfulness sessions. (more…)
Author Interviews, Cost of Health Care, End of Life Care, Medicare, Science / 06.07.2018

MedicalResearch.com Interview with: Amy Finkelstein PhD John & Jennie S. MacDonald Professor of Economics MIT Department of Economics National Bureau of Economic Research Cambridge MA 02139 MedicalResearch.com: What is the background for this study? What are the main findings? Response: Although only 5% of Medicare beneficiaries die in a given year, they account for almost 25% of Medciare spending. This fact about high end of life spending has been constantly used to refer to inefficiency of the US healthcare system. A natural observation is that the fact is retrospective, and it motivated us to explore a prospective analog, which would take as an input the probability of someone dying in a given year rather than her realized outcome. We therefore used machine learning techniques to predict death, and somewhat to our surprise we found that at least using standardized and detailed claims-level data, predicting death is difficult, and there are only a tiny fraction of Medicare beneficiaries for whom we can predict death (within a year) with near certainty. Those who end up dying are obviously sicker, and our study finds that up to half of the higher spending on those who die could be attributed to the fact that those who die are sicker and sick individuals are associated with higher spending. (more…)
Author Interviews, Cost of Health Care, Critical Care - Intensive Care - ICUs, End of Life Care, NEJM, University of Pittsburgh / 30.05.2018

MedicalResearch.com Interview with: Douglas B. White, M.D., M.A.S. Director of the Clinical Research Investigation and Systems Modeling of Acute Illness (CRISMA) Center’s Program on Ethics and Decision Making in Department of Critical Care Medicine University of Pittsburgh MedicalResearch.com: What is the background for this study? Response: We set out to test the effectiveness of PARTNER (PAiring Re-engineered ICU Teams with Nurse-driven Emotional Support and Relationship-building). PARTNER is delivered by the interprofessional team in the ICU, consisting of nurses, physicians, spiritual care providers, social workers and others who play a part in patient care. The program is overseen by nurse-leaders in each ICU who receive 12 hours of advanced communication skills training to support families. The nurses meet with the families daily and arrange interdisciplinary clinician-family meetings within 48 hours of a patient coming to the ICU. A quality improvement specialist helps to incorporate the family support intervention into the clinicians’ workflow. PARTNER was rolled out at five UPMC ICUs with different patient populations and staffing. It was implemented in a staggered fashion so that every participating ICU would eventually get PARTNER. Before receiving PARTNER, the ICUs continued their usual methods of supporting families of hospitalized patients. None of the ICUs had a set approach to family communication or required family meetings at regular intervals before receiving PARTNER. A total of 1,420 adult patients were enrolled in the trial, and 1,106 of these patients’ family members agreed to be a part of the study and its six-month follow-up surveys. The patients were very sick, with about 60 percent dying within six months of hospitalization and less than 1 percent living independently at home at that point. (more…)
Author Interviews, Cost of Health Care, End of Life Care, Geriatrics, JAMA, Medicare / 23.05.2018

MedicalResearch.com Interview with: William B Weeks, MD, PhD, MBA The Dartmouth Institute MedicalResearch.com: What is the background for this study? What are the main findings? Response: The background for the study is that a common narrative is that end-of-life healthcare costs are driving overall healthcare cost growth. Growth in end-of-life care has been shown, in research studies through the mid 2000’s, to be attributable to increasing intensity of care at the end-of-life (i.e., more hospitalizations and more use of ICUs). The main findings of our study are that indeed there have been substantial increases in per-capita end-of-life care costs within the Medicare fee-for-service population between 2004-2009, but those per-capita costs dropped pretty substantially between 2009-2014. Further, the drop in per-capita costs attributable to Medicare patients who died (and were, therefore, at the end-of-life) accounts for much of the mitigation in cost growth that has been found since 2009 in the overall Medicare fee-for-service population. (more…)
Author Interviews, End of Life Care / 06.05.2018

MedicalResearch.com Interview with: Mara Buchbinder, PhD Associate Professor Department of Social Medicine University of North Carolina at Chapel Hill Chapel Hill, NC 27599-7240 MedicalResearch.com: What is the background for this study? What are the main findings? Response: The legal landscape of medical aid-in-dying in the United States is changing rapidly. Just a few weeks ago, Hawaii became the 8th jurisdiction in the US to permit a physician to prescribe a lethal dose of medication to a terminally ill patient for the purpose of ending the patient’s life. However, even in states where aid-in-dying is legal, patients still face substantial barriers to access. The Vermont Study on Aid-in-Dying, a qualitative, descriptive study of the implementation of Vermont’s assisted dying statute, found that patients encounter barriers concerning the safeguards built into the law, the cost of medication, the ability to find a physician willing to prescribe, and knowledge about the law. (more…)
Author Interviews, End of Life Care, Heart Disease, JAMA, Technology / 27.02.2018

MedicalResearch.com Interview with: Larry A. Allen, MD, MHS Associate Professor, Medicine Associate Head for Clinical Affairs, Cardiology Medical Director, Advanced Heart Failure Aurora, CO 80045 MedicalResearch.com: What is the background for this study? What are the main findings? Response: Deciding whether or not to get a left ventricular assist device (LVAD) is one of the most challenging medical decisions created by modern medicine. LVADs improve overall survival but also come with serious risks and lifestyle changes. Particularly for older patients with multiple medical problems, this is a complex choice. Our research group at the University of Colorado spent years systematically developing unbiased pamphlet and video decision aids for patients and caregivers. We also developed a clinician-directed decision support training for LVAD program staff. The DECIDE-LVAD trial studied the implementation and effectiveness of this decision support intervention with patients and their caregivers in 6 hospitals in the U.S. When compared to previously used education materials, the decision aids appeared to improve patients’ decision quality and lowered the total number of patients getting LVADs. (more…)
Author Interviews, Brigham & Women's - Harvard, Diabetes, End of Life Care, JAMA / 01.01.2018

MedicalResearch.com Interview with: Dr. Laura A. Petrillo MD Instructor in Medicine Harvard Medical School, and Palliative Care Physician Massachusetts General Hospital MedicalResearch.com: What is the background for this study? What are the main findings? Response: Hospice is end-of-life care focused on maximizing quality of life. Hospice often involves reducing or stopping treatments that are unlikely to have short-term benefit in order to avoid uncomfortable side effects. About a quarter of Americans die in nursing homes, and some of them receive hospice care in their final days. We looked at whether adults with type 2 diabetes experience low blood sugar while on hospice in veterans’ nursing homes, since low blood sugar signals inappropriately aggressive diabetes treatment in patients close to death and contributes to unnecessary discomfort. We found that one in nine people experienced low blood sugar at least once while receiving hospice care. Among people who were on insulin, the number was one in three. (more…)
Author Interviews, End of Life Care, JAMA / 10.04.2017

MedicalResearch.com Interview with: Charles D. Blanke, M.D., F.A.C.P., F.A.S.C.O. CHAIR, SWOG Professor, OHSU Knight Cancer Institute Marquam II MedicalResearch.com: What is the background for this study? What are the main findings? Response: Oregon’s Death with Dignity Act as a voter initiative which law in 1997 – the first of its kind in the nation. Now, physician aid-in-dying is spreading quickly, with the states of Washington, Vermont, Colorado, and California passing similar legislation, as well as the District of Columbia, and Montana (through a court ruling). Millions of Americans lives in states where they would have the opportunity, if they were terminally ill, to take a lethal dose of medication with a doctor’s prescription. My team here at SWOG, a global cancer research community that designs and conducts publicly funded clinical trials, wanted to look at Oregon’s 18 years of aid-in-dying data and answer some simple questions: Who is using the law? Why? Are the drugs effective? What are the trends in actually taking the prescribed medications? We found that use of law has mostly increased over time – and substantially increased in 2014 and 2015. We found that predominantly white, older, well-educated people, take advantage of the law, and many of them – 77 percent – have underlying terminal cancer. The medication is also 99.4 percent effective. (more…)
Author Interviews, End of Life Care, Geriatrics, Medicare, Yale / 04.04.2017

MedicalResearch.com Interview with: Shi-Yi Wang MD, PhD. Department of Chronic Disease Epidemiology Yale School of Public Health New Haven, CT MedicalResearch.com: What is the background for this study? What are the main findings? Response: Care at the end of life is often fragmented and poorly coordinated across different health providers. Multiple transitions in care settings can be burdensome to patients and their families as well as costly to society. Despite these concerns about care transitions in the end of life, we lack contemporary data on the number, timing, and overall pattern of healthcare transitions in the last 6 months of life. This study adds to the extant literature by understanding transition trajectories, national variation of the transitions, and factors associated with transitions. We found that more than 80% of Medicare fee-for-service decedents had at least one health care transition and approximately one-third had ≥ 4 transitions in the last 6 months of life. We produced Sankey diagrams to visualize the sequences of healthcare transitions. The most frequent transition pattern involving at least four transitions: home-hospital-home (or skilled nursing facility)-hospital-healthcare setting other than hospital. There was substantial geographic variation in healthcare transitions in the United States. We found that several factors were associated with a significantly increased risk of having multiple transitions, including female gender, blacks, residence in lower income areas, presence of heart disease or kidney disease. (more…)
Author Interviews, Cancer Research, End of Life Care / 23.12.2016

MedicalResearch.com Interview with: Yu Uneno, M.D. Department of Therapeutic Oncology, Graduate School of Medicine, Kyoto University Kyoto city, Kyoto Japan MedicalResearch.com: What is the background for this study? What are the main findings? Response: Prognosis prediction is one of the most important issues to make an optimal treatment decision for both cancer patients and health care professionals. Previous prognosis prediction models were developed using data from single time point (at the baseline, for example), limiting the use of the models at the similar situation. Recently, we have developed the Six Adaptable Prognostic (SAP) models which can be repeatedly used at any time point after the initiation of treatment for patients with cancer receiving chemotherapy. Those models use only three laboratory items (albumin, neutrophil, lactate dehydrogenase) which are routinely monitored in daily clinical practice. (more…)
Author Interviews, End of Life Care, JAMA, University of Pittsburgh / 30.11.2016

MedicalResearch.com Interview with: Dr. Dio Kavalieratos, PhD Assistant Professor of Medicine Section of Palliative Care and Medical Ethics Division of General Medicine Institute of Clinical Research University of Pittsburgh MedicalResearch.com: What is the background for this study? What are the main findings? Response: The field of palliative care has seen a dramatic surge in research and clinical implementation over the past decade. The last systematic review of palliative care trials was published in 2008. In that review, the authors reported very weak evidence for palliative care, as well as major methodological limitations in the trials that had been done to date. Since then, several landmark trials have been published, some with very compelling findings such increased survival. Therefore, an up-to-date review was in order. There also had not previously been enough trials to perform a meta-analysis. A meta-analysis is the statistical process of combining the results of multiple trials, which gives you an overall effect for an intervention, in this case, palliative care. We were able to conduct the first meta-analysis of the effect of palliative care with three important outcomes: patient quality of life, patient symptom burden, and patient survival. (more…)
Alzheimer's - Dementia, Author Interviews, Critical Care - Intensive Care - ICUs, End of Life Care, Geriatrics, JAMA / 12.10.2016

MedicalResearch.com Interview with: Joan M. Teno, MD, MS Department of Gerontology and Geriatrics, Cambia Palliative Care Center of Excellence University of Washington Medicine Seattle, Washington MedicalResearch.com: What is the background for this study? Response: An important challenge for our health care system is effectively caring for persons that high-need, high-cost — persons afflicted with advanced dementia and severe functional impairment are among these persons, with substantial need and if hospitalized in the ICU and mechanically ventilated are high cost patients, who are unlikely to benefit from this level of care and our best evidence suggest the vast majority of persons would not want this care. In a previous study, we interviewed families of advance dementia with 96% starting the goals of care are to focus comfort. Mechanical ventilation in some cases may be life saving, but in cases such as those with advanced dementia and severe functional impairment, they may result in suffering without an improvement in survival. (more…)
Author Interviews, Brigham & Women's - Harvard, Cancer Research, Colon Cancer, End of Life Care, Lung Cancer / 09.09.2016

MedicalResearch.com Interview with: Joseph A. Greer, Ph.D. Program Director, Center for Psychiatric Oncology & Behavioral Sciences Associate Director, Cancer Outcomes Research Program, Massachusetts General Hospital Cancer Center Yawkey Center, Boston, MA 02114 MedicalResearch.com: What is the background for this study? What are the main findings? Response: Many patients with advanced cancer have a high symptom burden, increased depression symptoms, misperceptions about their prognosis, and difficulties in making decisions about care at the end of life. To address these challenges and improve care for this vulnerable population, our research team initially conducted a small, single-group pilot study of early palliative care integrated with standard oncology care for patients with advanced lung cancer. This study showed that the model of integrated care was feasible and acceptable to patients and their families. Specifically, the majority of patients in the study were able to meet with a palliative care clinician at least monthly from the time of diagnosis of metastatic lung cancer, in order to receive help with managing symptoms as well as support for coping with the disease and making decisions about treatment. We then conducted a follow-up randomized controlled trial of early, integrated palliative care in a sample of approximately 150 patients with metastatic non-small cell lung cancer. This study was published in the New England Journal of Medicine in 2010 and showed that those patients who received early palliative care reported significantly improved quality of life, mood, prognostic awareness, and end-of-life care compared to those who received standard oncology care alone. To confirm the findings of our prior research and to determine whether the benefits of early integrated palliative care would apply to a larger sample of patients with diverse malignancies, we recently completed another randomized trial of this same model of care in a sample of 350 patients with incurable lung and gastrointestinal cancers. In this trial, we observed that patients who received the early palliative care intervention reported higher quality of life and improved mood by 24 weeks but not at the primary end-point of 12 weeks. Our team was surprised to find that the trajectory of quality of life and depression symptoms over time was different for individuals with incurable lung versus gastrointestinal cancers in this study. As expected, the palliative care intervention positively buffered the decline in quality of life by 12 weeks for patients with incurable lung cancer, as we had seen in our prior trial. However, the group of patients with gastrointestinal cancers reported an improvement in their quality of life by the 12-week time point regardless of whether they received the palliative care intervention. We are still exploring possible reasons for this difference, such as whether changes in cancer therapy may have reduced symptoms and improved quality of life in the group of patients with gastrointestinal cancer. In addition, we were pleased to learn that the early integrated palliative care intervention led to improvements in how patients cope with their illness. For example, compared to patients in the usual oncology care group, those who received early, integrated palliative care were more likely to learn ways to accept their diagnosis and to take positive actions to make their lives better. So, in addition to treating patients’ symptoms, the palliative care clinicians in this study were bolstering people’s adaptive coping skills. (more…)
ASCO, Author Interviews, Cancer Research, End of Life Care / 09.09.2016

MedicalResearch.com Interview with: Erin Kent, PhD, MS Program Director Outcomes Research Branch of the Healthcare Delivery Research Program National Cancer Institute MedicalResearch.com: What is the background for this study? Response: Informal or family caregivers assist loved ones by providing care which is typically uncompensated, takes place typically at home, and often involves significant efforts for an extended period of time. Caregiving can require the performance of demanding tasks, which include managing symptom burden, monitoring for side effects from treatment, coordinating care, administering medication, and managing a care recipient’s financial and social obligations. In addition, there are many unique aspects of cancer that can place unique demands on caregivers, including sometimes a rapid deterioration of health, the receipt of multi-modal therapy (eg. surgery, chemotherapy, and radiation), and the possibility of cancer recurrence. (more…)
Author Interviews, End of Life Care / 28.06.2016

MedicalResearch.com Interview with: Dr Magnolia Cardona-Morrell, MPH, PhD Senior Research Fellow The Simpson Centre for Health Services Research South Western Sydney Clinical School Sydney MedicalResearch.com: What is the background for this study? What are the main findings? Response: We name the non beneficial treatments – those intensive procedures, medications or tests administered to elderly patients who are naturally dying and which will not make a difference to their survival, will probably impair their remaining quality of life or potentially or cause them pain or suffering – that are still occurring in hospitals. Think of these as unnecessary or excessive for the expected benefit. Our review of 38 studies, including 1.2 million patients, doctors, nurses and relatives in 10 countries, showed that on average 33% of elderly patients in the last six months of life and up to the last seven days of life received some of these treatments. Examples include: • attempting CPR on elderly patients with advanced disease or who have a “not-for-resuscitation” order (11-25%) • admission to intensive care in patients with advanced chronic disease (average 10% and up to 33%) • initiation or continuation of chemotherapy at the end of life (24-41%) • hemodialysis, transfusions, oral or intravenous medications to patients in terminal admissions (7-77%) These treatments continue happen after two decades due to a combination of factors: • patients’ lack of communication with families about end-of-life care wishes • unrealistic social expectation of survival due to technological advances • family pressure for doctors to “try everything possible” • medico-legal concerns • doctors’ uncertainty about the time until death and • the default position of intervening because doctors are trained to cure disease and save lives. (more…)
Aging, Author Interviews, End of Life Care, NEJM, Social Issues / 24.05.2016

MedicalResearch.com Interview with: Jill Cameron, PhD Canadian Institutes of Health Research New Investigator Associate Professor, Department of Occupational Science and Occupational Therapy Rehabilitation Sciences Institute Faculty of Medicine, University of Toronto MedicalResearch.com: What is the background for this study? What are the main findings? Dr. Cameron: In the world of critical illness, a lot of research has focused on helping people to survive – and now that more people are surviving, we need to ask ourselves, what does quality of life and wellbeing look like afterwards for both patients and caregivers? The aim of our research was to identify factors associated with family caregiver health and wellbeing during the first year after patients were discharged from the Intensive Care Unit. We examined factors related to the patient and their functional wellbeing, the caregiving situation including the impact it has on caregivers everyday lives, and caregiver including their sense of control over their lives and available social support. We used Pearlin’s Caregiving Stress Process model to guide this research. From 2007-2014, caregivers of patients who received seven or more days of mechanical ventilation in an ICU across 10 Canadian university-affiliated hospitals were given self-administered questionnaires to assess caregiver and patient characteristics, caregiver depression symptoms, psychological wellbeing, and health-related quality of life. Assessments occurred seven days and three, six and 12-months after ICU discharge. The study found that most caregivers reported high levels of depression symptoms, which commonly persisted up to one year and did not improve in some. Caregiver sense of control, impact on caregivers’ everyday lives, and social support had the largest relationships with the outcomes. Caregivers’ experienced better health outcomes when they were older, caring for a spouse, had higher income, better social support, sense of control, and caregiving had less of a negative impact on their everyday lives. No patient characteristics or indicators of illness severity were associated with caregiver outcomes. Poor caregiver outcomes may compromise patients’ rehabilitation potential and sustainability of home care. Identifying risk factors for caregiver distress is an important first step to prevent more suffering and allow ICU survivors and caregivers to regain active and fulfilling lives. (more…)
Author Interviews, End of Life Care, JAMA / 12.04.2016

MedicalResearch.com Interview with: Nancy L. Schoenborn, MD Assistant Professor Division of Geriatric Medicine and Gerontology Johns Hopkins University School of Medicine Nancy L. Schoenborn, MD Assistant Professor Division of Geriatric Medicine and Gerontology Johns Hopkins University School of Medicine MedicalResearch.com: What is the background for this study? What are the main findings? Dr. Schoenborn: A growing body of research recommend that clinicians should consider patients’ life expectancy in a number of clinical decisions, but it is not clear how primary care clinicians approach these recommendations. We interviewed primary care clinicians to understand their perspectives on this topic. We found that clinicians describe a number of barriers and ambiguities in using long-term life expectancy to inform medical decisions; they also varied widely in their approaches to assess and to discuss life expectancy. (more…)
Author Interviews, End of Life Care, JAMA / 11.02.2016

MedicalResearch.com Interview with: Joan M Teno, MD, MS Professor of Medicine Division of Gerontology and Geriatrics Cambia Palliative Care Center of Excellence University of Washington Medical Research: What is the background for this study? What are the main findings? Dr. Teno: Hospices in the US are paid a daily rate, regardless of the service delivered. Key to hospice patients dying comfortably is that the caregiver and dying person received the needed visits by hospice professional staff, such as a nurse or social worker. These staff are trained to assess the patient and make appropriate changes to care plan to ensure the comfort and safety of the hospice patient. Multiple studies attest to the finding that pain and other symptoms exacerbate in the last days of life - key is the primary caregiver, usually a close family member receives the need training in administering of medicine to ensure the dying person is comfortable in the last hours of life. We studied visits pattern by professional staff in the last 2 days of life finding that one in eight hospice patients were not visited. While we would not expect every patient to have visits, there was several key finding that raised concern.
  • First, blacks were 30% less likely to receive visits compared to whites
  • Second, 16% persons dying in a nursing home were not visited - historically, bereaved family members identify concerns with the quality of end of life care in NH, even when the person is on hospice services.
  • Third, one in five persons who died on Sunday were not visited in the last 2 days of life - which raises a concern with how hospices are staffing weekend coverage. There is nothing that would suggest biologically that persons don’t experience pain while dying on sturdy.
Additionally, the provision of these visits varied by geographic region in the country and by hospice program which suggest this is the practice of organization and not patient preferences. (more…)
Author Interviews, Brigham & Women's - Harvard, End of Life Care, JAMA / 27.01.2016

MedicalResearch.com Interview with: Joel Weissman, PhD, Deputy Director and Zara Cooper, MD, MSc Associate Surgeon Center for Surgery and Public Health Brigham and Women’s Hospital Boston, Massachusetts Medical Research: What is the background for this study? What are the main findings? Response: A major priority for providers of end-of-life care is balancing the intensity of a patient’s treatment with quality of life. Previous studies have looked at the intensity of end-of-life care for the general population, but not whether physicians, the group most familiar with end-of-life care, receive more or less intense end-of-life care compared to non-physicians. Research from the Center for Surgery and Public Health (CSPH) at Brigham and Women’s Hospital found that for 3 of 5 end-of-life care intensity measures, physicians received significantly less intensive end-of-life care than the general population. The findings are published in the January 19, 2016 issue of JAMA, in a special themed issue focusing on end-of-life care. The analysis included non-health maintenance organization Medicare beneficiaries aged 65 years or older who died between 2004 and 2011 in Massachusetts, Michigan, Utah, and Vermont, and was based on availability of electronic death records and ability to link to Medicare. Researchers used data from these records to look at 5 validated measures of end-of-life care intensity during the last 6 months of life: surgery, hospice care, intensive care unit (ICU) admission, death in the hospital, and expenditures. They then compared these measures between physicians and the general population (excluding other health care workers and lawyers), physicians vs. lawyers, who are presumed to be socioeconomically and educationally similar, and lawyers vs. the general population. There were 2,396 deceased physicians, 2,081 lawyers, and 666,579 people included in the analysis. Overall, physicians were less likely to die in a hospital compared with the general population (27.9 percent vs. 32 percent, respectively), less likely to have surgery (25.1 percent vs. 27.4 percent), and less likely to be admitted to the ICU (25.8 percent vs. 27.6 percent). Physicians were less likely to die in a hospital compared to lawyers (27.9 percent vs. 32.7 percent, respectively), but did not differ significantly in other measures. (more…)
Author Interviews, Brigham & Women's - Harvard, End of Life Care, JAMA, Leukemia / 28.12.2015

MedicalResearch.com Interview with: Oreofe O. Odejide, MD Instructor in Medicine, Harvard Medical School Dana-Farber Cancer Institute Medical Research: What is the background for this study? What are the main findings? Dr. Odejide: The care that patients with hematologic cancers receive near the end of life is distinct from patients with solid tumors. For instance, previous research has shown that patients with blood cancers are more likely to receive intensive care at the end of life such as chemotherapy within 14 days of death, intensive care unit admission within 30 days of death, and they are less likely to enroll in hospice. My colleagues and I hypothesized that timing of discussions regarding end-of-life preferences with patients may contribute to these findings, and we wanted to examine hematologic oncologists’ perspectives regarding end-of-life discussions with this patient population. We conducted a survey of a national sample of hematologic oncologists obtained from the publicly available clinical directory of the American Society of Hematology. We received responses from 349 hematologic oncologists, giving us a response rate of 57.3%. In our survey, we asked hematologic oncologists about the typical timing of EOL discussions in general, and also about the timing of the first discussion regarding resuscitation status, hospice care, and preferred site of death for patients. Three main findings emerged:
  • First, the majority of hematologic oncologists (56%) reported that typical EOL discussions occur “too late.”
  • Second, hematologic oncologists practicing primarily in tertiary care settings were more likely to report late discussions compared to those in community settings.
  • Third, a substantial proportion of respondents reported that they typically conduct the initial discussions regarding resuscitation status, hospice care, and preferred site of death at less optimal times.
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Author Interviews, Cancer Research, End of Life Care, Nursing / 30.10.2015

Dr-Hsien-Seow MedicalResearch.com Interview with: Dr. Hsien Seow, PhD Associate Professor Department of Oncology Cancer Care Ontario Research Chair in Health Services Research Associate Member, Department of Clinical Epidemiology & Biostatistics McMaster University Canadian Institutes of Health Research Young Investigator Hamilton, Ontario Medical Research: What is the background for this study? What are the main findings? Dr. Seow: Despite being commonplace in healthcare systems, little research has described the effectiveness of publicly-provided generalist homecare nursing to reduce unnecessary acute care use at end-of-life, such as emergency department (ED) visits. It is also unclear how homecare nursing intent, which varies by standard care or end-of-life, affects this relationship. Our study examined a population-based cohort of cancer decedents in Ontario, Canada who used homecare nursing in their last six months of life. Specifically, we examined the relationship between homecare nursing rate in a given week on the ED visit rate in the subsequent week. In our cohort of 54,576 decedents, there was a temporal association between receiving end-of-life nursing in a given week during the last six months of life, and of more standard nursing in the last month of life, with a reduced ED rate in the subsequent week. Homecare nursing for those who are receving end of life care will find that it can provide immediate assistance when needed. (more…)
Author Interviews, End of Life Care, Heart Disease, JAMA / 22.09.2015

MedicalResearch.com Interview with: Dr. Timothy J. Fendler MedicalResearch.com Interview with: Dr. Timothy J. Fendler MD MS Department of Cardiology, Saint Luke’s Mid America Heart Institute Kansas City, Missouri Medical Research: What is the background for this study? What are the main findings? Dr. Fendler: In-hospital cardiac arrest occurs commonly in the United States and is associated with low rates of meaningful survival. This poor prognosis should prompt patient-clinician discussions about goals of care and preferences for future resuscitative efforts. Little is known about how prognosis is aligned with code status decisions among survivors of in-hospital cardiac arrest (in other words, as prognosis worsens, are patients more likely to adopt Do-Not-Resuscitate orders, a sign of less aggressive treatment preferences, should recurrent cardiac arrest occur). We found that, among patients who survive an in-hospital cardiac arrest, there is generally good alignment between prognosis and code status decisions. That is, as prognosis worsens among survivors of in-hospital cardiac arrest, the rate of DNR status adoption increases, on average. However, among patients with very low levels of neurologic functioning and very poor prognosis, nearly two-thirds did not adopt DNR status, despite the fact that only about 4% of these patients with poor prognosis experienced actual favorable neurological survival. These results imply that there could be better alignment between prognosis and goals of care decisions that places the patient's wishes, safety, and quality of life at the forefront of decision-making and decreases the likelihood of undue suffering when the outcome may not be improved by it. Second, survival rates were much lower in patients with DNR orders, compared to those who did not adopt DNR status, after survival from in-hospital cardiac arrest. This was observed regardless of prognosis, implying that patients who adopt DNR status, and thus only request they be treated differently in the setting of recurrent cardiac arrest, may be receiving less aggressive treatment than they prefer, in areas of their care outside of resuscitation from cardiac arrest. (more…)
Author Interviews, Cancer Research, End of Life Care, Lancet, Leukemia / 01.08.2015

Prof David C Currow Discipline of Palliative and Supportive Services Flinders University Adelaide, SA, Australia MedicalResearch.com Interview with: Prof David C Currow Discipline of Palliative and Supportive Services Flinders University Adelaide, SA, Australia Medical Research: What is the background for this study? Prof. Currow: This study grew out of a desire to better understand the symptom burden experienced by people with hematological malignancies at the end of life. This has been very poorly documented and although there are lots of strong opinions, there are very few data at a population level. Medical Research: What are the main findings? Prof. Currow: The main finding is that community-dwelling people with hematological malignancies at the end of life have a burden of symptoms that looked almost identical to people with solid tumours. Given much lower rates of access to the hospice and palliative care, this suggests that these people and their family caregivers are missing out on opportunities for better symptom control and better support. (more…)
Author Interviews, Cancer Research, End of Life Care, JAMA / 10.07.2015

MedicalResearch.com Interview with: Jennifer Mack, MD, MPH Pediatric oncologist Dana-Farber/Boston Children’s Cancer and Blood Disorders Center Medical Research: What is the background for this study? What are the main findings? Dr. Mack: This study evaluated the intensity of end-of-life care received by adolescents and young adults (AYAs) with cancer. Little was previously known about the kind of end-of-life care these young patients receive. We evaluated the care of 663 Kaiser Permanente Southern California patients who died between the ages of 15 and 39 between the years 2001 and 2010. We found that more than two-thirds of adolescents and young adults received at least one form of intensive end-of-life care before death. This includes chemotherapy in the last two weeks of life (11%), more than one emergency room visit in the last month of life (22%), intensive care unit care in the last month of life (22%), and hospitalization in the last month of life (62%). Medical Research: What should clinicians and patients take away from your report? Dr. Mack: A majority of dying young people with cancer receive intensive measures at the end of life. Older patients who know they are dying usually do not want to receive intensive measures, which are associated with a poorer quality of life near death. High rates of intensive measures raise the concern that young people may experience unnecessary suffering at the end of life. However, it is also important to recognize that adolescents and young adult patients may have different priorities than older patients, and may be more willing to accept intensive measures in order to live as long as possible. Clinicians, patients, and family members should talk about what is most important to patients at the end of life so that their values can be upheld, whether patients prioritize doing everything possible to live as long as possible or focus on quality of life. Medical Research: What recommendations do you have for future research as a result of this study? Dr. Mack: Future research should further examine end-of-life decision-making for adolescents and young adults, including the reasons for receipt of intensive measures. Citation: JAMA Oncology irene.sege@childrens.harvard.edu MedicalResearch.com Interview with: Jennifer Mack, MD, MPH Pediatric oncologist Dana-Farber/Boston Children’s Cancer and Blood Disorders Center Medical Research: What is the background for this study? What are the main findings? Dr. Mack: This study evaluated the intensity of end-of-life care received by adolescents and young adults (AYAs) with cancer. Little was previously known about the kind of end-of-life care these young patients receive. We evaluated the care of 663 Kaiser Permanente Southern California patients who died between the ages of 15 and 39 between the years 2001 and 2010. We found that more than two-thirds of adolescents and young adults received at least one form of intensive end-of-life care before death. This includes chemotherapy in the last two weeks of life (11%), more than one emergency room visit in the last month of life (22%), intensive care unit care in the last month of life (22%), and hospitalization in the last month of life (62%). (more…)
Author Interviews, Cancer Research, End of Life Care, JAMA, Johns Hopkins / 10.07.2015

Amol Narang MD Radiation Oncology Resident Johns Hopkins Medicine MedicalResearch.com Interview with: Amol Narang MD Radiation Oncology Resident Johns Hopkins Medicine Medical Research: What is the background for this study? What are the main findings? Dr. Narang: The care provided to cancer patients at end-of-life can be intense, including frequent ER visit, hospitalizations, and ICU stays in the last month of life, administration of chemotherapy in last two weeks of life, and late referrals to hospice. Providing high-intensity treatments at end-of-life has been associated with reduced patient quality-of-life and increased caregiver bereavement. Advance care planning represents an opportunity for patients to indicate their preferences for end-of-life care to try to ensure that the care that they receive at end-of-life is consistent with their values, and has been endorsed by oncologic professional societies, such as ASCO and the NCCN. As such, we wanted to assess if oncologists’ long-standing recognition of the merits of advance care planning has translated into increased participation in advance care planning by cancer patients, and to determine which forms of advance care planning are associated with intensity of care given at end-of-life. From 2000-12, we found that the only type of advance care planning that increased was the assignment of a power of attorney (52% in 2000 to 74% in 2012). However, having a power of attorney was not associated with receiving less aggressive end-of-life care. On the other hand, having a living wills and engaging in a discussion with a provider or loved one about preferences for end-of-life care were both associated with reduced treatment intensity. However, the frequency with which cancer patients created a living or discussed their preferences for end-of-life care did not increase over the study period; importantly, 40% of patients dying of cancer never communicated their preferences for care at end-of-life with anyone. (more…)