Alzheimer's - Dementia, Author Interviews, End of Life Care, JAMA, University of Pennsylvania / 30.04.2019

MedicalResearch.com Interview with: [caption id="attachment_48887" align="alignleft" width="180"]Emily Largent, PhD, JD, RNAssistant Professor, Medical Ethics and Health PolicyPerelman School of MedicineLeonard Davis Institute of Health EconomicsUniversity of Pennsylvania Dr. Largent[/caption] Emily Largent, PhD, JD, RN Assistant ProfessorMedical Ethics and Health Policy Perelman School of Medicine Leonard Davis Institute of Health Economics University of Pennsylvania  MedicalResearch.com: What is the background for this study? What are the main findings?  Response:  Public support for aid in dying in the United States is rapidly growing.  As a result, we’re now seeing debates about whether to expand access to aid-in-dying to new populations – such as people with Alzheimer’s disease – who wouldn’t be eligible under current laws. With those debates in mind, we asked currently healthy people who recently learned about their risk for developing Alzheimer’s disease dementia (i.e., due to the presence of amyloid, an Alzheimer’s disease biomarker) whether they would be interested in aid-in-dying. Our findings suggest that about 20% of individuals with elevated amyloid may be interested in aid-in-dying if they become cognitively impaired.  
Author Interviews, Cost of Health Care, End of Life Care, JAMA / 01.05.2018

MedicalResearch.com Interview with: [caption id="attachment_41387" align="alignleft" width="130"]R. Sean Morrison, MD Ellen and Howard C. Katz Professor and Chair Brookdale Department of Geriatrics and Palliative Medicine Icahn School of Medicine at Mount Sinai New York, NY 10029 Dr. Morrison[/caption] R. Sean Morrison, MD Ellen and Howard C. Katz Professor and Chair Brookdale Department of Geriatrics and Palliative Medicine Icahn School of Medicine at Mount Sinai New York, NY 10029 MedicalResearch.com: What is the background for this study? What are the main findings? Response: Palliative care is team based care that is focused on improving quality of life and reducing suffering for persons with serious illness and their families.  It can be provided at any age and in concert with all other appropriate medical treatments.  Palliative care has been shown to improve patient quality of life, patient and family satisfaction, and in diseases like cancer and heart failure, improve survival.  A number of individual studies have shown that palliative care can reduce costs by providing the right care to the right people at the right time. This study pooled data from six existing studies to quantify the magnitude of savings that high quality palliative care provides.
Author Interviews, End of Life Care, JAMA, UCSF / 20.11.2017

MedicalResearch.com Interview with: [caption id="attachment_38401" align="alignleft" width="103"]Kara Bischoff, MD Assistant Clinical Professor, Hospital Medicine & Palliative Care Director of Quality Improvement for the Palliative Care Service UCSF Department of Medicine Dr. Bischoff[/caption] Kara Bischoff, MD Assistant Clinical Professor, Hospital Medicine & Palliative Care Director of Quality Improvement for the Palliative Care Service UCSF Department of Medicine MedicalResearch.com: What is the background for this study? What are the main findings? Response: Care planning, which we define as including both advance care planning and goals of care discussions, are a common need in seriously ill patients and a key function of palliative care teams. However, few studies have looked at how often and how care planning is being done by inpatient palliative care teams throughout the United States, and similarly few studies have examined the precise impact of these care planning activities. Therefore, using data from a large quality improvement registry in palliative care called the Palliative Care Quality Network, we examined: 1) the characteristics of hospitalized patients who are referred to inpatient palliative care consult services, 2) the activities that occurred during those inpatient palliative care consults, and 3) the outcomes that resulted. In looking at data from 73,145 patients who referred for an inpatient palliative care consult, we found that care planning was the most common reason for inpatient palliative care consultation, requested for 71.9% of patients who were referred to palliative care. Further, care planning needs were found in more than half (58%) of palliative care patients even when the consult was requested for reasons other than care planning. Patients referred to palliative care for care planning were somewhat older than patients referred for other reasons, they were less likely to have cancer, and were more often full code at the time of referral. Through care planning conversations, palliative care clinicians frequently identified surrogates and clarified patients’ preferences for life-sustaining treatments (including code status). For instance, 31% more patients chose a code status of DNR/DNI after a conversation with the palliative care team. However, we also found that legal forms such as advance directives and Physician Orders for Life-Sustaining Treatments (POLST) forms were completed for just 3.2% and 12.3% of the patients see by palliative care teams, respectively. This highlights an important quality gap in need of improvement.
Author Interviews, End of Life Care, JAMA / 08.02.2017

MedicalResearch.com Interview with: [caption id="attachment_31813" align="alignleft" width="156"]Nathan A. Gray, M.D. Duke Palliative Care Durham, NC 27710 Dr. Nathan Gray[/caption] Nathan A. Gray, M.D. Duke Palliative Care Durham, NC 27710 MedicalResearch.com: What is the background for this study? What are the main findings? Response: The estimated number of undocumented immigrants living in the United States has been stable in recent years, but lengths of residence in the country are rising. This aging population of undocumented immigrants can expect to face an increasing burden of chronic disease and end-of-life needs, but may experience challenges in obtaining hospice care in the last months of life as many are uninsured and none are eligible for the Medicare Hospice Benefit. While hospice agencies do provide charity care, little is known about hospice agency approaches to caring for undocumented immigrants. We surveyed a national sample of hospice agencies and found that many hospice agencies do not enroll undocumented immigrants or place restrictions on the number enrolled. More than half of agencies sampled had received requests for enrollment of undocumented immigrants in the past year. Offering unrestricted enrollment was more common among larger, not-for-profit hospices in our sample.
Author Interviews, End of Life Care, HIV, Pediatrics, Pediatrics / 03.11.2016

MedicalResearch.com Interview with: [caption id="attachment_29351" align="alignleft" width="176"]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 Dr. Maureen E. Lyon[/caption] 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.
Author Interviews, End of Life Care, JAMA, Race/Ethnic Diversity, UCSF / 02.11.2016

MedicalResearch.com Interview with: [caption id="attachment_29236" align="alignleft" width="150"]Krista Lyn Harrison, PhD Division of Geriatrics School of Medicine University of California San Francisco VA Medical Center San Francisco, CA 94121 Dr. Krista Lyn Harrison[/caption] 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.
Author Interviews, Cancer Research, End of Life Care, JAMA / 16.07.2016

MedicalResearch.com Interview with: [caption id="attachment_26193" align="alignleft" width="135"]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 Dr. Robert Gramling[/caption] 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.
Author Interviews, End of Life Care, Heart Disease, JAMA / 22.03.2016

MedicalResearch.com Interview with: [caption id="attachment_22837" align="alignleft" width="200"]Colleen K. McIlvennan, DNP, ANP-BC Assistant Professor of Medicine Division of Cardiology Section of Advanced Heart Failure and Transplantation Dr. Colleen McIlvennan[/caption] 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.
Author Interviews, Cancer Research, Cost of Health Care, End of Life Care / 19.02.2016

MedicalResearch.com Interview with: [caption id="attachment_21847" align="alignleft" width="130"]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 Dr. Melissa Garrido[/caption] 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.
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.
Author Interviews, End of Life Care / 18.02.2015

Eva E. Bolt MD Physician researcher Dept. Public and Occupational Health EMGO+ Institute for Health and Care Research (VU University Medical Center) Medical Faculty Amsterdam, The NetherlandsMedicalResearch.com Interview with: Eva E. Bolt MD Physician researcher Dept. Public and Occupational Health EMGO+ Institute for Health and Care Research (VU University Medical Center) Medical Faculty Amsterdam, The Netherlands Medical Research: What is the background for this study? What are the main findings? Dr. Bolt: Three-quarter of all Dutch physicians have ever been asked by a patient to perform euthanasia. Each request for euthanasia calls for careful deliberation. Firstly, the physician needs to judge whether euthanasia would be possible within the limits of the law. Above that, a physician needs to decide whether performing euthanasia is in line with his personal believes and values. This study shows that cause of suffering is an important factor in this decision. In the Netherlands, the euthanasia law gives physicians the possibility of performing euthanasia, if they adhere to strict rules. The euthanasia law is not restricted to certain diseases. However, this study shows that the attitude of physicians towards performing euthanasia varies by condition. Most Dutch physicians would consider granting a request for euthanasia in case of cancer (85%) or another severe physical disease (82%). In contrast, only four out of ten physicians would consider granting a request for euthanasia in case of early-stage dementia. One in three would consider it in case of advanced dementia or psychiatric disease, and one in four in case of a person who is tired of living without suffering from a severe disease.
Author Interviews, End of Life Care, JAMA / 12.01.2015

MedicalResearch.com Interview with: Younsuck Koh Professor of Medicine Professor of Medical Humanities and Social Sciences Chairman, the Organizing Committee of the 12th World Federation of Societies of Intensive and Critical Care Medicine Congress in Seoul Department of Pulmonary and Critical Care Medicine Asan Medical Center, Univ. of Ulsan College of Medicine Seoul, Korea and Jason Phua MBBS, FRCP National University Hospital, Singapore AVF Chairperson. Senior Consultant & Head Division of Respiratory & Critical Care Medicine Medical Research: What is the background for this study? What are the main findings? Response: Provision of humane end-of-life and palliative care for dying patients and their families must remain a focus in today’s intensive care units, which continue to see technological advancements in the forms of life-sustaining measures available. End-of-life care decisions are heavily dependent on the medical, ethical, social, and cultural context. Asia, which accounts for at least half of all patients with critical illness, mechanical ventilation, and intensive care unit deaths internationally, has diverse socioeconomic conditions, cultures, and religions. Therefore, it is likely that substantial difference in the way physicians approach end-of-life care exist between Asia and the West, and among Asian countries and regions themselves. However, prior to our study, little data existed on the end-of-life care practices in this region. We found that even as end-of-life care practices in intensive care units vary significantly across Asian countries and regions, physicians in Asia generally seem less likely to limit life-sustaining treatments than their Western counterparts. Implementation of do-not-resuscitate orders are affected by multiple factors related to country or region, including economic, cultural, religious, and legal differences, as well as personal attitudes.