Author Interviews, End of Life Care, HIV, Pediatrics, Pediatrics / 03.11.2016

MedicalResearch.com Interview with: Maureen E. Lyon PhD Division of Adolescent and Young Adult Medicine, Center for Translational Science/Children’s Research Institute, Children’s National The George Washington University School of Medicine and Health Sciences Washington, District of Columbia MedicalResearch.com: What is the background for this study? Response: Despite policy recommendations to include adolescents with chronic and life-limiting conditions in decision-making about their own end-of-life care, barriers continue in clinical practice, including fear of distressing vulnerable adolescents and providers’ beliefs that these conversations are potentially harmful. (more…)
Author Interviews, End of Life Care, JAMA, Race/Ethnic Diversity, UCSF / 02.11.2016

MedicalResearch.com Interview with: Krista Lyn Harrison, PhD Division of Geriatrics School of Medicine University of California San Francisco VA Medical Center San Francisco, CA 94121 MedicalResearch.com: What is the background for this study? Response: Advance care planning (ACP) is the process of discussing plans and preferences for end-of-life care. It may include completion of advanced directives or a living will and designation of a surrogate decision-maker in a durable power of attorney for health care. There is a growing awareness of the benefits of such discussions for both elders and their families. In absence of these discussions, loved ones are left to guess what the affected individual wanted or may even get mired in unexpected legal issues. But until recently, it was unknown if all races/ethnicities, education levels, and incomes have benefited from efforts to improve engagement in advance care planning, and if these discussions are greater among those in worse health and with a poorer prognosis. (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, End of Life Care, JAMA / 03.10.2016

MedicalResearch.com Interview with: Joshua R. Lakin, MD Assistant Professor of Medicine Harvard Medical School Dana Farber Cancer Institute MedicalResearch.com: What is the background for this study? What are the main findings? Response: Research has increasingly shown the benefits of early palliative care interventions, especially in those around communication about patient goals and preferences in serious illness. These benefits include improved quality of life and psychological outcomes for patients as well as eased bereavement and decision making for loved ones. We have a large gap to fill in initiating early goals and values conversations with our patients and there are a myriad of systems failures and clinician barriers that do not allow us to do this work in a timely and effective way. Doing so with limited resources, both in specialty palliative care and in the many frontline clinicians doing this work, requires targeting our resources carefully. Doing these conversations earlier means identifying patients upstream, before they are in the last days of life. The Surprise Question – “Would you be surprised if this patient died in the next year?” – has emerged as an attractive option for screening for early palliative care interventions. It has been studied primarily in dialysis and cancer patients and has been demonstrated to have a strong association with risk of death. We set out to test it in a more diverse primary care population. (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, Cancer Research, End of Life Care, JAMA / 16.07.2016

MedicalResearch.com Interview with: Robert Gramling, MD, DSc Division of Palliative Medicine, University of Vermont, Burlington Department of Family Medicine Burlington Vermont School of Nursing and Department of Public Health Sciences Center for Communication and Disparities Research, Department of Family Medicine, and Division of Palliative Care, Center for Community Health, University of Rochester School of Medicine and Dentistry, Rochester, New York MedicalResearch.com: What should readers take away from your report? Response: Patients with advanced cancer often misunderstand their doctor's expectations about the length of life they have remaining and this misunderstanding is relevant to their preferences for sharing in treatment decisions at end of life. (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…)
Author Interviews, End of Life Care, Heart Disease, JAMA / 24.05.2016

MedicalResearch.com Interview with: James N. Kirkpatrick, MD Director of the Echocardiography Laboratory Division of Cardiology Ethics Consultation Service University of Washington, Seattle MedicalResearch.com: What is the background for this study? Dr. Kirkpatrick: With significant advances in technology, implanted cardiac devices like pacemakers and defibrillators, replacement heart valves, and mechanical pumps which assist or replace the pumping function of the heart have become standard therapies for patients with severe cardiac disease. Many patients who would previously have died after living with severe symptoms live longer and with improved quality of life. This is particularly true for elderly patients who receive transcatheter aortic valve replacement (TAVR—valve replacement that doesn’t require open heart surgery) and ventricular assist device (VAD—a durable mechanical heart pump) implantation. However, like everyone, these patients will die, and some of the patients will experience device complications which will shorten their lives. Elderly patients, in particular, are at risk for device complications, high symptom burden, and loss of the ability to make healthcare decisions, due to illnesses like strokes or dementia. Symptom management and advance care planning are the hallmarks of the medical specialty of Palliative Care and are particularly important in patients with TAVR and VADs, yet patients and clinicians don’t often think of Palliative Care when considering high tech, life-prolonging therapies. The Palliative Care Working Group of the American College of Cardiology’s Geriatrics Section therefore sought to gather data on the attitudes toward Palliative Care among cardiovascular clinicians and the current state of involvement of Palliative Care in the care of patients with TAVR and VAD. (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, Cancer Research, CMAJ, End of Life Care / 20.04.2016

MedicalResearch.com Interview with: Camilla Zimmermann, MD, PhD, FRCPC Head, Division of Palliative Care, University Health Network Research Director, Lederman Palliative Care Centre, Princess Margaret Cancer Centre Associate Professor, Department of Medicine, University of Toronto Rose Family Chair in Supportive Care, Faculty of Medicine, University of Toronto Toronto, Canada Medical Research: What is the background for this study? Dr. Zimmermann: Early palliative care is increasingly recommended by national and international health agencies, and is in keeping with the definition of palliative care as being relevant throughout the course of life-threatening illness. We conducted a randomized controlled trial of early palliative care (referral and follow-up in a specialized outpatient palliative care clinic), versus routine oncology care, in 461 ambulatory patients with advanced cancer. The results showed that early palliative care improved quality of life and satisfaction with care. The current study was a follow-up study, where we conducted qualitative interviews with 71 patients and caregivers from the intervention and control arms of the larger trial. We asked them about their attitudes and perceptions of palliative care and whether these changed during the trial. (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, Cancer, Cancer Research, End of Life Care / 06.04.2016

MedicalResearch.com Interview with: Holly G. Prigerson, Ph.D. Irving Sherwood Wright Professor in Geriatrics Professor of Sociology in Medicine Director, Center for Research on End of Life Care Weill Cornell Medicine New York Presbyterian Hospital New York City, New York 10065  MedicalResearch.com: What is the background for this study? What are the main findings? Dr. Prigerson: Patients need to know their prognosis to be informed consumers of end-stage cancer care. We found that most patients have an overly optimistic view of their life-expectancy and that few patients base their life expectancy estimate on communications with their healthcare providers. It was striking that 0% of black patients said their prognostic estimate was based on a medical professional. (more…)
Author Interviews, End of Life Care, Geriatrics, Kidney Disease / 24.03.2016

MedicalResearch.com Interview with: Dr. Wouter R. Verberne Koekoekslaan 1 The Netherlands MedicalResearch.com: What is the background for this study? Dr. Verberne: The number of older patients with End Stage Renal Disease (ESRD) is increasing worldwide. When ESRD is approaching, patients need to be advised on the renal replacement therapy (RRT) necessary to remove toxic products and fluid from the body when their own kidneys are no longer able to do so. ESRD can be treated with kidney transplantation, hemodialysis or peritoneal dialysis. With increasing technical possibilities and with the widespread availability of dialysis treatment, age no longer limits dialysis treatment. It has been questioned whether older patients with ESRD, who often have multiple comorbidities, are likely to benefit from renal replacement therapy. Dialysis treatment comes with high treatment burden. Generally patients are treated in a dialysis facility 3 times per week, 3 to 4 hours per time. Patients with an anticipated poor prognosis on RRT may choose to forego dialysis and decide to be treated conservatively instead. Conservative management (CM) entails ongoing care with full medical treatment, including control of fluid and electrolyte balance and correcting anemia, and provision of appropriate palliative and end of life care. Shared decision making has been recommended to come to a joint decision on   renal replacement therapy by considering potential benefits and harms of all treatment options and the patient’s preferences. Data on outcomes, including survival and quality of life, are needed to foster the decision making. However, adequate survival data, specifically on older patients, are limited. A number of studies, predominantly from the United Kingdom, have determined survival of older patients managed conservatively compared with renal replacement therapy. In these studies, the numbers of recruited patients are generally small, the studies are performed in heterogeneous study populations, and there is significant variability in starting points used in survival analyses. We performed the first Dutch study in a large series of older patients slowly approaching ESRD, enabling the use of several starting points in survival analyses. The aims of the study were to compare survival in patients with ESRD ages ≥ 70 years old choosing either conservative management or renal replacement therapy and determine predictors of survival.  (more…)
Author Interviews, End of Life Care, Heart Disease, JAMA / 22.03.2016

MedicalResearch.com Interview with: Colleen K. McIlvennan, DNP, ANP-BC Assistant Professor of Medicine Division of Cardiology Section of Advanced Heart Failure and Transplantation MedicalResearch.com: What is the background for this study? What are the main findings? Response: As technology continues to advance, more people are becoming eligible for advanced therapies for end-stage illness. One such therapy, the left ventricular assist device (LVAD) is an option for carefully selected individuals suffering from end-stage heart failure. Use of this innovative technology has expanded from its original indication as a bridge to transplantation to also include destination therapy, in which patients live with the device for the remainder of their lives. Significant focus has been placed on developing and expanding LVAD programs, with less thought about the eventual end-of-life process awaiting patients whose LVAD is indicated for destination therapy. We performed semi-structured interviews about experiences surrounding end of life with 8 caregivers of patients who died with an LVAD. There was a wide range of case histories represented by these patients; however, three main themes emerged that coalesced around feelings of confusion: 1) the process of death with an LVAD, 2) the legal and ethically permissible care of patients approaching death with an LVAD, and 3) the fragmented integration of palliative and hospice care. (more…)
Author Interviews, Cancer Research, Cost of Health Care, End of Life Care / 19.02.2016

MedicalResearch.com Interview with: Melissa Garrido, PhD Assistant Professor / Research Health Science Specialist GRECC, James J Peters VA Medical Center, Bronx, NY Brookdale Department of Geriatrics & Palliative Medicine Icahn School of Medicine at Mount Sinai, New York, NY Medical Research: What is the background for this study? What are the main findings? Response: Medical costs for people with serious illnesses are rapidly rising in the United States. Concerns about medical debt and bankruptcy are especially relevant when deciding whether to begin or maintain a treatment that may have limited benefit to a patient’s survival or quality of life. Among patients with advanced cancer, one such decision is the choice of whether to use additional chemotherapy when the disease has not responded to an initial line or lines of chemotherapy. In this study, we used data from a prospective study of patients with advanced cancer and their caregivers to examine the relationship between chemotherapy use at study entry (median of four months before death) and estimated costs of healthcare other than chemotherapy in the last week of life. Medical Research: What is the background for this study? What are the main findings? Dr. Garrido: Among patients with end-stage cancer, those who received chemotherapy in the months before death had higher estimated costs of care in the last week of life.  We did not find evidence that this relationship was explained by patients’ preferences for care, do-not-resuscitate orders, or discussions of care preferences. (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, End of Life Care, JAMA, Mental Health Research, NIH / 11.02.2016

MedicalResearch.com Interview with: Scott Y. H. Kim, MD, PhD Department of Bioethics, National Institutes of Health Bethesda, MD 20892 Medical Research: What is the background for this study? Dr. Kim: Euthanasia and/or physician assisted suicide (EAS) of persons suffering from psychiatric disorders is increasingly practiced in some jurisdictions such as Belgium and the Netherlands but very little is known about the practice.  There is an active debate over whether to legalize such a practice in Canada, after a Supreme Court ruling last year that struck down laws banning physician assisted death.  Medical Research: What are the main findings? Dr. Kim: The main findings are that:
  1. Most patients who receive psychiatric euthanasia and/or physician assisted suicide are women, of diverse ages, with a variety of chronic psychiatric conditions accompanied by personality disorders, significant physical problems, and social isolation/loneliness, often in the context of refusals of treatment.  A minority who are initially refused EAS ultimately receive euthanasia and/or physician assisted suicide through a mobile euthanasia clinic.
  2. Given that the patients have chronic, complicated histories requiring considerable physician judgment, extensive consultations are common. But independent psychiatric input does not always occur; disagreement among physicians occurred in one in four cases; and the euthanasia review committees generally defer to the judgments of the physicians performing euthanasia and/or physician assisted suicide.
(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.
(more…)
Author Interviews, Cancer Research, End of Life Care, Nursing / 30.10.2015

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. Homecare nursing for those who are receving end of life care will find that it can provide immediate assistance when needed. (more…)
Annals Internal Medicine, Author Interviews, Cognitive Issues, Cost of Health Care, End of Life Care / 28.10.2015

MedicalResearch.com Interview with: Amy S. Kelley, MD, MSHS Department of Geriatrics and Palliative Medicine Icahn School of Medicine at Mount Sinai New York, NY Medical Research: Why is it so important to understand the financial burdens families may face in providing end-of-life care for a loved one and why do you think the burdens may be greater for dementia than for other medical conditions? Dr. Kelley: Understanding the financial risks that older adults face in the last years of life is important for individuals and families, in order to plan and save, if possible. It is also important for our policy makers, in particular, to know about these costs so that this information can help shape health and social policy that will best serve our society. Households of those with dementia face the greatest burden of costs, on average, particularly with regard to out-of-pocket expenses and the costs of caregiving.  Many costs related to daily care for patients with dementia are not covered by health insurance, and these care needs, including everything from supervision, to bathing and feeding, may span several years. (more…)
Author Interviews, BMJ, End of Life Care / 19.10.2015

MedicalResearch.com Interview with: Barbara Gomes BSc MSc PhD  Research Fellow King's College London, Cicely Saunders Institute Dept Palliative Care, Policy & Rehabilitation London UK Medical Research: What is the background for this study? Dr. Gomes: We knew from our previous research that most patients with advanced cancer would prefer to die at home, but many do not achieve this. In many countries, an undesired hospital death is still the most common. We wondered whether this was because the quality of death was better in hospital than at home, so we examined the existing evidence and found out that the studies contradicted each other; some suggested that dying in hospital was better than at home and some found it was worse. Therefore, we decided to examine three things:
  • Whether people who died at home experienced more or less pain and peace than those who died in hospital;
  • whether the family carers of people who died at home experienced more or less grief;
  • The factors needed to enable death at home.
We wanted to find ways to improve care for patients and families facing serious life limiting illness, to more closely meet their preferences and needs and to empower them. Medical Research: What are the main findings? Dr. Gomes: We found that patients who died at home experienced more peace in their last week of life than those who died in hospital. There was no difference in pain levels. And grief was less intense for relatives of patients who died at home, both around the time of death and at questionnaire completion (which was about 4-10 months after the patient died). We also developed a model that explained well why some patients die at home whilst others die in hospital. Four factors are almost essential; they were present in more than 91% of home deaths:
  1. Home death preference by the patient;
  2. Home death preference by their relative;
  3. Receipt of home palliative care in the last three months of life;
  4. Receipt of district/community nursing in the last three months of life.
In addition, patients who died in hospital were less likely to have had Marie Curie nursing (these nurses care for people at home in the last few months or weeks of their lives, with the core service being one-to-one overnight nursing); only seven patients who received care from these nurses died in hospital. Importantly, patients who discuss preferences, have home visits from their GP and whose relatives take more days off work also had greater odds of dying at home. The study shows these elements of support need to be in place in order to meet patient preference and ensure the best possible outcomes. (more…)
Author Interviews, Cancer Research, End of Life Care, Radiation Therapy / 12.10.2015

MedicalResearch.com Interview with: Dr. Kavita Vyas Dharmarajan M.D., M.Sc Assistant Professor Radiation Oncology Assistant Professor Geriatrics and Palliative Medicine Icahn School of Medicine at Mount Sinai Medical Research: What is the background for this study? Dr. Vyas Dharmarajan: Forty to fifty percent of all patients having radiation therapy as part of cancer treatment are having the treatment for palliative reasons – meaning, not to cure the cancer but rather to alleviate or prevent symptoms caused by it. The most common reason for referral to a radiation oncologist in the setting of advanced cancer is for alleviation of pain or prevention of an impending fracture due to bone metastases. Radiation therapy is very effective at relieving pain; in fact, published response rates are about 60-80%. The standard treatment has been two weeks of radiation treatment, and this is a common treatment scheme followed by many radiation oncologists. This may be too long or burdensome for some patients given their overall state of illness, or other personal or logistical factors. Several large randomized trials have shown that shorter radiation courses, even as short as 1 fraction of treatment, can be just as effective as 10 fractions (or, two weeks) of treatment. However, literature suggests that these condensed approaches are underutilized by radiation oncologists. A major disadvantage of traditional 2-week courses of radiation is that patients who are very debilitated may be kept in the hospital to undergo this treatment. Some patients stop early because it is too burdensome. Moreover, some may not survive long enough after the treatment to appreciate its benefits. At Mount Sinai, we proposed an intervention that combined the technical expertise within radiation oncology with the whole-patient support services of palliative medicine into a service model led by a single radiation oncologist specializing in the care of advanced cancer patients and collaboration with experts in palliative care. The service model was meant to care for patients suffering from advanced cancer with the goal of improving the quality of care that these patients receive. About two years into the establishment of this new model, we assessed patient outcomes of pain improvement, length of hospitalization, utilization of palliative care services after radiation, treatment completion rates, and duration of treatments. To accomplish this study, we reviewed the charts of 336 consecutively treated patients who underwent radiation therapy at the Mount Sinai Hospital over the last 5 years. We compared the outcomes of the patients treated before the model was established in 2013 to those treated after the model was established. Medical Research: What are the main findings? Dr. Vyas Dharmarajan: We found large differences in quality of care for advanced cancer patients being treated for symptomatic bone metastases after establishment of our palliative radiation oncology consult service. The rate of short-course treatments (meaning 5 or fewer radiation fractions) rose from 26% to 61%, while the corresponding rate of traditional length treatments (meaning, treatments over 5 fractions) declined from 74% to 39%. Hospital length of stay declined by 6 days, from 18 to 12 days (median). We also found that more patients were finishing their treatments -- the proportion of treatments left unfinished halved, from 15% to 8%. More patients were accessing palliative care services within 30 days of finishing radiation, (34% vs. 49%). We did not see a significant change in the proportion of patients experiencing pain relief from the treatment. In fact, we saw a slight improvement (74% to 80%), but this was not a statistically significant increase. Medical Research: What should clinicians and patients take away from this report? Dr. Vyas Dharmarajan: Our study validates the importance of cohesive collaboration in cancer care. The palliative radiation oncology service model thrives at the Mount Sinai Hospital because of the unique and strong partnership between palliative care and radiation oncology departments. Yet, there are elements of palliative care practice that can transcend other disciplines including radiation oncology. These include eliciting and attending to goals, preferences, expectations, and concerns of patients and families being evaluated for treatment. Shorter treatment courses for advanced cancer patients are effective, and the implications of using such treatments goes beyond that of just finishing the treatment early. Patients treated within our service model were more likely to finish their treatment and spend 6 more days at home with their families. Clinicians should know that using such an approach did not compromise the efficacy of the treatment. Medical Research: What should patients know about your study? Dr. Vyas Dharmarajan: Patients should know that their voices, their preferences, and their goals matter when making decisions about palliative radiation treatment. My goal as a palliative radiation oncologist is to engage patients and their families to set realistic expectations and incorporate their goals and preferences into their treatment plans. By involving key players in this process, such as palliative care specialists, we can ensure that patients receive the best quality of care that treats the whole person, not just a tumor. Medical Research: What recommendations do you have for future research as a result of this study? Dr. Vyas Dharmarajan: Our study showed that making small changes to everyday practice in the real world can lead to large impacts on patient outcomes in a population of cancer patients who are often the sickest. Our next projects revolve around 1) how best to equip radiation oncologists with the skills needed to appropriately provide treatment and primary palliative care to advanced cancer patients, and 2) to empower patients and families to engage with their physicians in discussions about their treatment including their overall goals and preferences. Both of these concepts ultimately have direct impacts on treatment recommendations and treatment outcomes for advanced cancer patients and their families. Citation: upcoming Palliative Care abstract: A palliative radiation oncology consult service’s impact on care of advanced cancer patients with symptomatic bone metastases.MedicalResearch.com Interview with: Dr. Kavita Vyas Dharmarajan M.D., M.Sc Assistant Professor Radiation Oncology Assistant Professor Geriatrics and Palliative Medicine Icahn School of Medicine at Mount Sinai Medical Research: What is the background for this study?  Dr. Vyas Dharmarajan: Forty to fifty percent of all patients having radiation therapy as part of cancer treatment are having the treatment for palliative reasons – meaning, not to cure the cancer but rather to alleviate or prevent symptoms caused by it. The most common reason for referral to a radiation oncologist in the setting of advanced cancer is for alleviation of pain or prevention of an impending fracture due to bone metastases. Radiation therapy is very effective at relieving pain; in fact, published response rates are about 60-80%. The standard treatment has been two weeks of radiation treatment, and this is a common treatment scheme followed by many radiation oncologists. This may be too long or burdensome for some patients given their overall state of illness, or other personal or logistical factors. Several large randomized trials have shown that shorter radiation courses, even as short as 1 fraction of treatment, can be just as effective as 10 fractions (or, two weeks) of treatment. However, literature suggests that these condensed approaches are underutilized by radiation oncologists. A major disadvantage of traditional 2-week courses of radiation is that patients who are very debilitated may be kept in the hospital to undergo this treatment. Some patients stop early because it is too burdensome. Moreover, some may not survive long enough after the treatment to appreciate its benefits. At Mount Sinai, we proposed an intervention that combined the technical expertise within radiation oncology with the whole-patient support services of palliative medicine into a service model led by a single radiation oncologist specializing in the care of advanced cancer patients and collaboration with experts in palliative care. The service model was meant to care for patients suffering from advanced cancer with the goal of improving the quality of care that these patients receive. About two years into the establishment of this new model, we assessed patient outcomes of pain improvement, length of hospitalization, utilization of palliative care services after radiation, treatment completion rates, and duration of treatments. To accomplish this study, we reviewed the charts of 336 consecutively treated patients who underwent radiation therapy at the Mount Sinai Hospital over the last 5 years. We compared the outcomes of the patients treated before the model was established in 2013 to those treated after the model was established. Medical Research: What are the main findings? Dr. Vyas Dharmarajan: We found large differences in quality of care for advanced cancer patients being treated for symptomatic bone metastases after establishment of our palliative radiation oncology consult service. The rate of short-course treatments (meaning 5 or fewer radiation fractions) rose from 26% to 61%, while the corresponding rate of traditional length treatments (meaning, treatments over 5 fractions) declined from 74% to 39%. Hospital length of stay declined by 6 days, from 18 to 12 days (median). We also found that more patients were finishing their treatments -- the proportion of treatments left unfinished halved, from 15% to 8%. More patients were accessing palliative care services within 30 days of finishing radiation, (34% vs. 49%). We did not see a significant change in the proportion of patients experiencing pain relief from the treatment. In fact, we saw a slight improvement (74% to 80%), but this was not a statistically significant increase. (more…)
Author Interviews, Cancer Research, End of Life Care, Journal Clinical Oncology / 07.10.2015

Holly G. Prigerson, Ph.D. Irving Sherwood Wright Professor in Geriatrics Professor of Sociology in Medicine Director, Center for Research on End of Life Care Weill Cornell Medical College New York Presbyterian Hospital New York City, New YorkMedicalResearch.com Interview with: Holly G. Prigerson, Ph.D. Irving Sherwood Wright Professor in Geriatrics Professor of Sociology in Medicine Director, Center for Research on End of Life Care Weill Cornell Medical College New York Presbyterian Hospital New York City, New York 10065 Medical Research: What is the background for this study? What are the main findings? Dr. Prigerson: Research has revealed that a majority of terminally ill cancer patients do not realize that they are dying. We wanted to know if terminally ill patients would report wanting to know their life expectancy, how many oncologists shared their life expectancy estimate for the patient with them, and how that prognostic disclosure affected the patient’s accuracy.  We found that 71% of terminally ill cancer patients wanted to know their life expectancy, but only 17.6% were told it by their oncologist. Those who were told were much more realistic than those who were not told, about 17 months closer to their actual survival time from out baseline assessment. Oncologists who shared the prognosis did not psychologically injure patients (eg make them significantly more anxious or depressed) nor was their relationship harmed. (more…)
Author Interviews, End of Life Care, Heart Disease, JAMA / 22.09.2015

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. (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, 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. (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 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. (more…)