Daniela Lamas

Delayed access and survival in idiopathic pulmonary fibrosis: a cohort study.

RATIONALE Idiopathic pulmonary fibrosis is often initially misdiagnosed. Delays in accessing subspecialty care could lead to worse outcomes among those with idiopathic pulmonary fibrosis. OBJECTIVES To examine the association between delayed access to subspecialty care and survival time in idiopathic pulmonary fibrosis. METHODS We performed a prospective cohort study of 129 adults who met American Thoracic Society criteria for idiopathic pulmonary fibrosis evaluated at a tertiary care center. Delay was defined as the time from the onset of dyspnea to the date of initial evaluation at a tertiary care center. We used competing risk survival methods to examine survival time and time to transplantation. MEASUREMENTS AND MAIN RESULTS The mean age was 63 years and 76% were men. The median delay was 2.2 years (interquartile range 1.0–3.8 yr), and the median follow-up time was 1.1 years. Age and lung function at the time of evaluation did not vary by delay. A longer delay was associated with an increased risk of death independent of age, sex, forced vital capacity, third-party payer, and educational attainment (adjusted hazard ratio per doubling of delay was 1.3, 95% confidence interval 1.03 to 1.6). Longer delay was not associated with a lower likelihood of undergoing lung transplantation. CONCLUSIONS Delayed access to a tertiary care center is associated with a higher mortality rate in idiopathic pulmonary fibrosis independent of disease severity. Early referral to a specialty center should be considered for those with known or suspected interstitial lung disease.

Cents and Sensitivity — Teaching Physicians to Think about Costs

99 Finally, there are objections from the medical community. In a 2003 study of AMA members, 69% objected to physician-assisted suicide,1 a position officially held by various national and state medical associations. Even with allowances for conscientious objection, some physicians believe it’s inappropriate or wrong for a physician to play an active role in ending a patient’s life. We believe there is a compelling case for legalizing assisted dying, but assisted dying need not be physicianassisted. Under the DWDA, the patient’s physician prescribes lethal medication after confirming the prognosis and elucidating the alternatives for treatment and palliative care. In theory, however, the prescription need not come from the physician. Prognosis and treatment options are part of standard clinical discussions, so if a physician certifies that information in writing, patients could conceivably go to an independent authority to obtain the prescription. We envision the development of a central state or federal mechanism to confirm the authenticity and eligibility of patients’ requests, dispense medication, and monitor demand and use. This process would have to be transparent, with strict oversight. Such a mechanism would not only obviate physician involvement beyond usual care but would also reduce gaps in care coordination: in Oregon and Washington, patients whose doctors don’t wish to participate in assisted dying must find another provider to acquire a prescription. Physicians who strongly object to the practice could potentially refuse to provide certification or could even alter their prognosis, but these possibilities yield the same outcome as permitting conscientious objection. Patients could also provide an independent authority with their medical record as proof of their prognosis. Such a mechanism would make it essential for physicians to offer high-quality palliative care. The availability of assisted suicide in Oregon seems to have galvanized efforts to ensure that it is truly a last resort, and the same should hold true regardless of who writes the prescription. Usual care for terminally ill patients should include a discussion of life-preserving and palliative options so that all patients receive care consistent with their own vision of a good death. Momentum is building for assisted dying. With an independent dispensation mechanism, terminally ill patients who wished to exercise their autonomy in the dying process would have that option, and physicians would not be required to take actions that aren’t already part of their commitment to providing high-quality care.

Facing a "slow-motion disaster"--the UN meeting on noncommunicable diseases.

In September, representatives from 192 countries met at a UN conference on noncommunicable diseases, turning international attention from the devastation wrought by well-known epidemics such as those of AIDS and malaria to a quieter, though no less dangerous, threat.

Painful Inequities — Palliative Care in Developing Countries

Whereas effective treatment for noncommunicable diseases may be too costly to disseminate globally, opioids for pain control are cheap to produce. Yet 80% of the population, including millions of patients with terminal cancer, lacks adequate access to pain treatment.

Freedom from the Tyranny of Choice — Teaching the End-of-Life Conversation

Paternalism in discussing resuscitation status has given way to an approach in which patients may be asked to choose from a bewildering array of medical options, but physicians-in-training are rarely taught how to lead such conversations confidently and effectively.

Peer Support as a Novel Strategy to Mitigate Post-Intensive Care Syndrome.

ABSTRACT Post‐intensive care syndrome, a condition defined by new or worsening impairment in cognition, mental health, and physical function after critical illness, has emerged in the past decade as a common and life‐altering consequence of critical illness. New strategies are urgently needed to mitigate the risk of neuropsychological and functional impairment common after critical illness and to prepare and support survivors on their road toward recovery. The present state of critical care survivorship is described, and postdischarge care delivery in the United States and the potential impact of the present‐day fragmented model of care delivery are detailed. A novel strategy that uses peer support groups could more effectively meet the needs of survivors of critical illness and mitigate post‐intensive care syndrome.

Very complicated math--reconfiguring organ allocation.

The U.S. transplant community is debating an approach to reducing geographic disparities in organ distribution: redrawing the liver-allocation map to reduce disparities among patients with similar disease severity, without increasing deaths on the waiting list.

Opening the Door: The Experience of Chronic Critical Illness in a Long-Term Acute Care Hospital.

Objective: Chronically critically ill patients have recurrent infections, organ dysfunction, and at least half die within 1 year. They are frequently cared for in long-term acute care hospitals, yet little is known about their experience in this setting. Our objective was to explore the understanding and expectations and goals of these patients and surrogates. Design: We conducted semi-structured interviews with chronically critically ill long-term acute care hospital patients or surrogates. Conversations were recorded, transcribed, and analyzed. Setting: One long-term acute care hospital. Subjects: Chronically critically ill patients, defined by tracheotomy for prolonged mechanical ventilation, or surrogates. Intervention: Semi-structured conversation about quality of life, expectations, and planning for setbacks. Measurements and Main Results: A total of 50 subjects (30 patients and 20 surrogates) were enrolled. Thematic analyses demonstrated: 1) poor quality of life for patients; 2) surrogate stress and anxiety; 3) optimistic health expectations; 4) poor planning for medical setbacks; and 5) disruptive care transitions. Nearly 80% of patient and their surrogate decision makers identified going home as a goal; 38% were at home at 1 year. Conclusions: Our study describes the experience of chronically critically ill patients and surrogates in an long-term acute care hospital and the feasibility of patient-focused research in this setting. Our findings indicate overly optimistic expectations about return home and unmet palliative care needs, suggesting the need for integration of palliative care within the long-term acute care hospital. Further research is also needed to more fully understand the challenges of this growing population of ICU survivors.

Lung Transplantation for Idiopathic Pulmonary Fibrosis

Despite advances in the development of novel pharmaceutical agents to treat idiopathic pulmonary fibrosis (IPF), there are no medical therapies known to resolve fibrosis or improve lung function in IPF. Therefore, lung transplantation remains the only life-saving therapy available to treat patients with IPF. However, a shortage of suitable donor organs limits the number of affected individuals who can undergo this procedure, and this shortage highlights the need to allocate donor lungs to those who are in the greatest need of a life-saving therapy yet ensure that those who undergo transplantation will have a reasonable expectation of long-term survival. Still, outcomes remain relatively poor for many patients after lung transplantation, although a sizable minority of patients can enjoy long-term survival after lung transplantation.

Palliative Care: A Core Competency for Intensive Care Unit Doctors

Using a set of screening criteria that suggest very poor prognosis in critically ill patients, Hua and colleagues report that up to 20% of intensive care unit (ICU) admissions meet triggers for palliative care consultation (1). At the same time, an accompanying editorial by Ford (2) estimates a shortage of between 6,000 and 18,000 palliative care physicians (with only z180 trained annually) for all these consultations. Rather than expect thousands of newly trained palliative care doctors to meet this need, the reality is that ICU physicians will and should provide this care. Conversations about end-of-life care goals and options are key interventions that all intensivists should become experts in, as important as understanding our patients’ physiology and offering procedural expertise. Care of many ICU patients is often fragmented, and there might not be a more appropriate person to have these discussions. Thus, this study should push those of us in critical care to define the key components of palliative care and learn how to better implement them. Quill and Abernethy recently proposed a model of generalist versus specialist palliative care (3). They argue that a patient’s primary physician can perform basic elements of palliative care and that consultation should be reserved for more complex cases—similar to how ICU physicians practice regarding most other specialties. For example, if an ICU patient has an arrhythmia, the intensivist orders an ECG for diagnosis, selects appropriate first-line medications, and stabilizes the patient, only calling a cardiology consultation for difficult cases (e.g., electrophysiologist) or advanced therapy (e.g., pacemaker). Palliative care should not be inherently different. How will we provide this care? Valid concerns exist about the degree of training required to have these conversations, the different approaches to conducting these discussions, and whether this increased emphasis on conversations surrounding serious illness might be unrealistic, given the other responsibilities of intensivists. In response, we propose the use of a “checklist approach,” which has been effective in communication in other arenas. From its initial roles in aviation and nuclear power, the checklist approach has been validated across high-stress settings from safer surgery to limiting catheter-associated infections in the ICU (4, 5). This methodology led to the development of a structured communication guide that distills the key elements of a discussion of end-of-life care goals. This guide aims to help non–palliative care physicians efficiently explore their patients’ understanding of illness, values, and trade-offs (6). It is currently being tested in the outpatient oncology setting at our institution, and an adapted version is being piloted for surrogates of the critically ill. Demonstrating that such a conversation can be teachable and time effective could have a major impact on end-of-life care. Of course, palliative care consultation will remain essential for complex cases, but from our perspective, we cannot afford to defer the basics of palliative care to consultants. With this study’s results in mind, we need to study integrative models of palliative care in the ICU with the same rigor that we have applied to ventilator management in acute respiratory distress syndrome and sedation regimens, for example. Palliative care competencies add value to our care of patients and have been shown to improve quality of life and even to decrease mortality (7). In addition to more training of palliative care physicians, we need to educate ourselves and develop new methods to integrate these competencies into the care of our patients today. n