Hypoglycemia All Too Common In Hospice and End of Life Care

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.

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Who Takes Advantage of Oregon’s Death With Dignity Act?

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

Dr. Blanke

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.

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End-of-Life Care Transition Patterns of Medicare Beneficiaries

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.

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Model Uses Three Lab Values To Predict End of Life in Cancer Patients

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.

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Palliative Care Linked To Fewer Symptoms and Better Quality of Life

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

Dr. Dio Kavalieratos

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.

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Mechanical Ventilation Doubles For Persons With Advanced Dementia

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

Dr. Joan Teno

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.

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Early Palliative Care Improved Patients’ Symptoms and Coping Skills

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

Dr. Joseph Greer

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.

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Cancer Caregivers Report More Stress Than For Non-Cancer Conditions

MedicalResearch.com Interview with:

Erin Kent, PhD, MS Program Director Outcomes Research Branch of the Healthcare Delivery Research Program National Cancer Institute

Dr. Erin Kent

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.

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“Do Everything Possible” Leads To Aggressive Care At End of Life

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

Magnolia Cardona-Morrell

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.

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Many Caregivers Report High Levels of Depression and Loss of Control Over Their Lives

MedicalResearch.com Interview with:

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.  MedicalResearch.com: What should readers take away from your report?  Dr. Cameron: Our findings suggest that family caregiver health and wellbeing outcomes are more closely related to characteristics of the caregiver and caregiving situation than patient characteristics including functional abilities and neuropsychological wellbeing. This suggests that when determining which caregivers are in need of support, we can't base this decision on the level of sickness of the patient. We need to screen the caregivers themselves to identify those in need of care and support. Our findings suggest caregivers with low levels of social support, poor sense of control over their situation, and whose caregiving is more likely to impact their everyday lives are more likely to experience poor outcomes and are in need of support from the health care system.  MedicalResearch.com: What recommendations do you have for future research as a result of this study?  Dr. Cameron: Future research should continue to be theoretically driven and follow caregivers longitudinally. Qualitative research involving in depth interviews will enhance our understanding of ways to assist, support, and care for family caregivers across the illness trajectory. Interventions and models of care that target those caregivers in need of support should be developed and tested and ultimately implemented into the health care system.   MedicalResearch.com: Is there anything else you would like to add?  Dr. Cameron: Ultimately, adopting a family centered model of care has the potential to improve the health and wellbeing of family caregivers and their care recipients. One example of adopting this approach concerns the transition of the patient back home. Patients and their caregivers should be assessed for their readiness to go home and provided with education and training to optimize this transition. Once home, families should continue to be monitored and provided with additional supports as needed as they adjust to life in the community. A family centered approach can be incorporated across the care continuum to optimize caregiver and patient outcomes.   Citation:  One-Year Outcomes in Caregivers of Critically Ill Patients Jill I. Cameron, Ph.D., Leslie M. Chu, B.Sc., Andrea Matte, B.Sc., George Tomlinson, Ph.D., Linda Chan, B.A.Sc., Claire Thomas, R.N., Jan O. Friedrich, M.D., D.Phil., Sangeeta Mehta, M.D., Francois Lamontagne, M.D., Melanie Levasseur, M.D., Niall D. Ferguson, M.D., Neill K.J. Adhikari, M.D., Jill C. Rudkowski, M.D., Hilary Meggison, M.D., Yoanna Skrobik, M.D., John Flannery, M.D., Mark Bayley, M.D., Jane Batt, M.D., Claudia dos Santos, M.D., Susan E. Abbey, M.D., Adrienne Tan, M.D., Vincent Lo, P.T., B.Sc., Sunita Mathur, P.T., Ph.D., Matteo Parotto, M.D., Denise Morris, R.N., Linda Flockhart, R.N., Eddy Fan, M.D., Ph.D., Christie M. Lee, M.D., M. Elizabeth Wilcox, M.D., Najib Ayas, M.D., Karen Choong, M.D., Robert Fowler, M.D., Damon C. Scales, M.D., Tasnim Sinuff, M.D., Brian H. Cuthbertson, M.D., Louise Rose, R.N., Ph.D., Priscila Robles, P.T., Ph.D., Stacey Burns, R.N., Marcelo Cypel, M.D., Lianne Singer, M.D., Cecilia Chaparro, M.D., Chung-Wai Chow, M.D., Shaf Keshavjee, M.D., Laurent Brochard, M.D., Paul Hébert, M.D., Arthur S. Slutsky, M.D., John C. Marshall, M.D., Deborah Cook, M.D., and Margaret S. Herridge, M.D., M.P.H., for the RECOVER Program Investigators (Phase 1: towards RECOVER) and the Canadian Critical Care Trials Group N Engl J Med 2016; 374:1831-1841May 12, 2016DOI: 10.1056/NEJMoa1511160   Note: Content is Not intended as medical advice. Please consult your health care provider regarding your specific medical condition and questions. More Medical Research Interviews on MedicalResearch.com

Dr. Jill Cameron

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.

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Clinicians Describe Difficulties in Using Life Expectancy To Inform Medical Decisions

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.

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Hospice Providers Paid Same Rate Regardless of Services Provided

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

Dr. Joan Teno

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.

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Physicians Choose Less Aggressive Care At Their Own End of Life

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.

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End Of Life Discussions Occur Late in Blood Cancer Patients’ Disease

Oreofe O. Odejide, MD Instructor in Medicine, Harvard Medical School Dana-Farber Cancer Institute

Dr. Odejide

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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End of Life Home Care Nursing Reduces Emergency Department Visits

Dr-Hsien-SeowMedicalResearch.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.

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How Do We Align DNR Orders With Patient Preferences and Prognosis?

MedicalResearch.com Interview with: Dr. Timothy J. FendlerMedicalResearch.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.

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Patients With Blood Cancers May Need More Support At End Of Life

Prof David C Currow Discipline of Palliative and Supportive Services Flinders University Adelaide, SA, AustraliaMedicalResearch.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. Continue reading

Most Young Cancer Patients Receive Intensive Measures At End of Life

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%).

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Many Cancer Patients Never Communicate Their Preferences For End of Life Care

Amol Narang MD Radiation Oncology Resident Johns Hopkins MedicineMedicalResearch.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.

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Hospice Care May Decrease Depression in Surviving Spouses

Katherine Ornstein, PhD MPH Assistant Professor Brookdale Department of Geriatrics and Palliative Medicine Institute for Translational Epidemiology Icahn School of Medicine at Mount Sinai One Gustave L. Levy Place, Box 1070 New York, NY 10029MedicalResearch.co Interview with:
Katherine Ornstein, PhD MPH
Assistant Professor
Brookdale Department of Geriatrics and Palliative Medicine
Institute for Translational Epidemiology
Icahn School of Medicine at Mount Sinai
New York, NY 10029

Medical Research: What is the background for this study? What are the main findings?

Dr. Ornstein: There is an increased focus on the need to support caregivers and families, particularly at the End of Life (EOL). They play a critical role in the care process and decision making, yet this can be a very high stress role with an increased risk for negative consequences. Hospice services, which are increasing, are focused on palliative rather than curative care and include medical services, symptom management, spiritual counseling, social services and bereavement counseling delivered by an interdisciplinary team of professionals for dying patients.  An important part of the hospice service is the provision of support to families during illness and after death.  Prior research suggests that hospice (which is cost saving, has benefits to patients), may also  be beneficial to families. Yet these studies have been largely limited to patients with cancer, have failed to adequately control for differences between patients who do or do not use hospice.

Overall, there was an increase in depressive symptoms after death.  However, surviving spouses of those who used hospice were more likely to have a decrease in depressive symptoms. We found that the positive benefit of hospice was much stronger when we looked at least 1 year after death.

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CPR Rate High In End Stage Dialysis Patients Despite Poor Outcomes

MedicalResearch.com Interview with:
Susan P. Y. Wong, M.D.
Acting Instructor & Senior Research Fellow
Division of Nephrology
University of Washington

Medical Research: What is the background for this study? What are the main findings?

Dr. Wong: There is a paucity of information on the use of cardiopulmonary resuscitation (CPR) and its outcomes among patients receiving maintenance dialysis. To address this knowledge gap, we performed a retrospective study to define contemporary trends in in-hospital CPR use and its outcomes among a nationally representative sample of 663,734 patients receiving maintenance dialysis between 2000 and 2011. We found that in-hospital CPR use among this cohort of patients was very high—nearly 20 times more common than that found in the general population. The rate of in-hospital CPR use has also been increasing among patients receiving maintenance dialysis despite evidence of poor long-term survival among these patients. Median survival after hospital discharge for members of this cohort was only 5 months, and this has not change substantially in the recent decade.

We also found that a large proportion  of dialysis patients who died in hospital settings had received CPR during their terminal hospitalization. This proportion has also been steadily increasing over time, and in 2011, 1 in 5 dialysis patients who died in hospital had received CPR during their terminal hospitalization.

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Patients and Caregivers May Differ On End-of-Life Choices

Prof. Chetna Malhotra M.B.B.S., M.D. M.P.H. Lien Centre for Palliative Care Duke-NUS Graduate Medical School Singapore, SingaporeMedicalResearch.com Interview with:
Prof. Chetna Malhotra M.B.B.S., M.D. M.P.H.
Lien Centre for Palliative Care
Duke-NUS Graduate Medical School Singapore, Singapore

Medical Research: What is the background for this study? What are the main findings?

Dr. Malhotra: Patients with advanced cancer often have to make difficult decisions, such as how much to spend on moderately life- extending treatments. This and other end-of-life decisions are also influenced by their informal caregivers. In this study, we aim to understand the relative value that advanced cancer patients and their caregivers place on various aspects of end-of-life care. We conducted a cross-sectional survey of 211 patients with stage IV cancer and their primary informal caregivers.  Participants were asked to choose their most-preferred end-of-life scenarios out of a series of options that varied along key dimensions, including years of life remaining, degree of pain experienced, place of death, level of burden on caregivers, quality of healthcare experience, cost, and source of payment (cash, Medisave, or family members’ cash or  Medisave). Using the results, we quantified patients and caregivers willingness to pay to improve their end of life experience. We found that the patients’ willingness to pay to extend their life by one year was valued at S$18,570, which is lower than their willingness to pay to avoid severe pain (S$22,199), or to die at home (S$31,256). Caregivers had a three-fold greater willingness to pay than patients to extend life by one year and for most of the other features considered. These results suggest that health insurers and physicians may be putting too much emphasis on life extending treatments for these patients. Further, there is a need to elicit patient preferences during treatment decision making as opposed to just relying on caregiver input.
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Distressing End of Life Symptoms Common and Often Untreated

Adam E. Singer, MPhil, Pardee RAND Graduate School, RAND Corporation Santa Monica, CAMedicalResearch.com Interview with:
Adam E. Singer, MPhil
Pardee RAND Graduate School, RAND Corporation
Santa Monica, CA

MedicalResearch: What is the background for this study? What are the main findings?

Response: In 1997, the Institute of Medicine (IOM) released a seminal report on the state of end-of-life care in the US that called for major changes in the organization and delivery of end-of-life care. Many of the IOM’s indictments have ostensibly been addressed since that time through the expansion of palliative care and hospice, along with a greater focus on symptom management in both policy and practice. This study was designed to ask whether end-of-life symptoms have become less prevalent from 1998 to 2010 for the population as a whole and also for subgroups that died suddenly or had cancer, congestive heart failure (CHF), chronic lung disease, or frailty.

The study found that many alarming symptoms were common in the last year of life and affected more people from 1998 to 2010. For example, in the whole population, pain affected 54% in 1998 and 61% in 2010 (a 12% increase). Depression affected 45% in 1998 and 57% in 2010 (a 27% increase). Periodic confusion affected 41% in 1998 and 54% in 2010 (a 31% increase). Depression and periodic confusion also became more prevalent in subgroups with CHF and/or chronic lung disease and frailty. In addition, nearly all other symptoms in the whole population and in each of the subgroups trended toward increases in prevalence from 1998 to 2010, although most of these trends did not reach statistical significance. The one exception is that there were no significant changes in the subgroup with cancer.

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DNR Orders Improved Quality of Life In Week Before Death

MedicalResearch.com Interview with:
Melissa Garrido, PhD

Research Health Science Specialist
GRECC, James J Peters VA Medical Center, Bronx, NY
Assistant Professor Brookdale Department of Geriatrics & Palliative Medicine
Icahn School of Medicine at Mount Sinai, New York, NY and

Holly G. Prigerson, PhD
Center for Research on End of Life Care
Weill Cornell Medical College New York, NY 10065

Medical Research: What is the background for this study? What are the main findings?

Response: Recent proposals in Congress encourage patients to engage in advance care planning and to complete advance directives. That is, patients are encouraged to have conversations about end-of-life care preferences and to document these preferences in writing (through living wills or medical orders such as do not resuscitate (DNR) orders) or to designate a durable power of attorney who can honor their preferences. The goal of advance care planning is to ensure that seriously ill patients receive care that matches their values. In this study, we used data from a prospective study of patients with advanced cancer and their caregivers to examine whether living wills, durable powers of attorney, and DNR orders were associated with better quality of life and lower estimated costs of care in the week before death. We examined these relationships among patients who did and did not express preferences for “heroic” end-of-life care (everything possible to remain alive).

Medical Research: What are the main findings?

Response: DNR orders were associated with better quality of life in the week before death among the entire sample. If patients have DNR orders completed, they are likely to have a better quality of life/quality of death than if they do not complete a medical order like this.

We did not find any evidence of a relationship between DNR orders and costs of care, nor did we find evidence of relationships among living wills or durable powers of attorney, quality of life, and costs of care. There was no evidence that relationships among advance care planning and outcomes differed by patient preferences for heroic care.
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Dignified Death Still Elusive On Many Cancer Wards

MedicalResearch.com Interview with:
Karin Jors MA
Department of Palliative Care, Comprehensive Cancer Center,
University Medical Center Freiburg, Freiburg, Germany

Medical Research: What are the main findings of the study?

Answer: The findings of our study shed light on the current circumstances for dying in cancer centers. Physicians and nurses in our study reported that they rarely have enough time to care for dying patients. In addition, only a minority of staff members felt that they had been well-prepared during their training to care for dying patients and their families. Overall, only 56% of participants indicated that it is usually possible for patients to die in dignity on their ward. This is likely the result of various factors such as: inadequate rooms for dying patients and their families (i.e. shared rooms), poor communication with patients regarding burdensome treatments, an overuse of life-prolonging measures, etc. Striking differences were found between the responses of palliative care staff and staff from other wards (e.g. general care, oncology, intensive care). For example, palliative care staff reported that they usually have enough time to care for dying patients. In addition, 95% of palliative care staff indicated that it is usually possible for patients to die in dignity on their ward. Overall, nurses perceived the situation for dying patients more negatively than physicians. Whereas 72% of physicians reported that patients can usually die a dignified death on their ward, only 52% of nurses shared this opinion. Although only slightly more than half of participants believed that patients can usually die in dignity on their ward, this is a considerable improvement to the situation 25 years ago. In a similar study published in 1989, researchers found that 72% of physicians and nurses experienced the situation for patients dying on their hospital ward as undignified.
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Patients With Advanced Cancer May Not Have Same End-of-Life Perspective As Their Physicians

Daniel Rocke, MD Medical School University of Michigan Medical School Ann Arbor, 2009.MedicalResearch.com Interview with
Daniel Rocke, MD
Duke Medicine
Department Otolaryngology


MedicalResearch: What are the main findings of the study?

Dr. Rocke: I think the main point is that, to quote the paper, “end-of-life decision making by patients with cancer and their caregivers is significantly affected by their preference for quality of life or quantity of life, but OHNS physicians’ decision making is not.” This is important because physicians counseling patients making end-of-life decisions are coming at these decisions from a different perspective that may not line up with their patients. If physicians recognize this, I think that these end-of-life discussions can be more productive

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Community Based Palliative Care Teams May Reduce Unnecessary Acute Care at End of Life

MedicalResearch.com: Interview with:
Dr. Hsien Seow PhD Cancer Care Ontario Research Chair in Health Services Research Asst Professor, Dept of Oncology, McMaster University Hamilton, OntarioDr. Hsien Seow PhD
Cancer Care Ontario Research Chair in Health Services Research
Asst Professor, Dept of Oncology, McMaster University
Hamilton, Ontario

 

MedicalResearch: Why did you conduct this study?

Dr. Seow: While palliative care has gained recognition as a service that can improve patient outcomes and reduce health care costs at the end of life, especially in hospitals and hospices, much less attention has focused on providing inter-disciplinary palliative care in the community and home. There have been several randomized trials that showed mixed evidence that inter-disciplinary teams of specialist palliative care providers can reduce acute care utilization in the community; however team size and team composition varied in prior trials. This variation has not been researched as a cause for the mixed outcomes.
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