While palliative care has continued to grow as a specialty, there continues to be a lack of randomized, controlled trial evidence demonstrating its effectiveness when delivered simultaneously with disease modifying treatments in patients with advanced illness. The authors designed a nonblinded randomized controlled trial of early outpatient palliative care integrated with standard oncologic care compared with standard oncologic care alone. Patients with pathologically confirmed metastatic non-small-cell lung cancer (NSCLC,) diagnosed within eight weeks before enrollment, and good functional status, were enrolled at a single academic medical center. Patients already receiving palliative care were not eligible. Both control and intervention arms received standard oncologic and radiation treatments to treat their lung cancer. Patients randomized to receive early palliative care met with a member of the palliative care team in the outpatient setting within three weeks after enrollment and then at least monthly until death or study termination. During these visits, particular attention was paid to alleviating physical and psychological symptoms, establishing the patient's goals of care, assisting with decision making regarding treatments, and helping to coordinate care. Patients in the control arm could receive palliative care after randomization if requested by the patient, family, or oncologist, though all patients randomized to the control arm were analyzed in that arm. Outcomes included quality of life, depression, utilization of health care resources, and survival.

Breathlessness is a troubling and prevalent symptom in patients with advanced disease. The authors conducted a double-blind, multicenter, randomized, controlled trial of oxygen as compared to compressed room air to relive dyspnea in patients with advanced illness. Patients were drawn from outpatient pulmonary, palliative care, and primary care clinics in Australia, the United States, and the United Kingdom. Inclusion criteria were: age>18, having refractory dyspnea, undergoing maximal treatment for the underlying medical illness, having a PaO₂>7.3kPa (~55mm HG), being dyspenic at rest, and having an expected survival of at least 1 month. Patients meeting criteria for medical oxygen therapy were excluded. To assure that all parties involved in the study remained blinded to the allocation arm, intervention assignment was communicated from the central randomization service to the medical gas company who prepared and delivered identical-appearing concentrators to patients' homes. The intervention lasted seven days, and participants kept a diary of symptoms throughout the course of the study. The main outcome was “breathlessness right now” measured twice daily; secondary outcomes included other measures of breathlessness, physical function, sleep, and quality of life.

While recent advances have greatly improved outcomes for pediatric patients undergoing stem cell transplant, little is known about the end-of-life care delivered to these children and their families. To further elucidate this, the researchers conducted a retrospective survey of parents and physicians of children who died from cancer, comparing children who received stem cell transplant (SCT) to those who did not. Parents of children cared for at one of two academic medical centers (one in the Midwest and one in the Northeast) were contacted at least one year after the child's death if: they spoke English, lived in North America, and the child's oncologist gave permission to contact the child's family. Parents completed a structured telephone survey about the time preceding their child's death, including their goals for the child's care during that time, and when they perceived that there was no realistic chance of cure. Physicians were surveyed to determine their assessment of the goals of therapy near the end of the child's life. Medical record abstraction was performed to determine date of last cancer-directed therapy, care received at the end of the child's life, and when it was noted that there was no realistic chance of cure for the child's illness.

Pneumonia is common among patients with advanced dementia, and palliative care clinicians often make recommendations as to the use of antibiotics in this patient population. However, whether antimicrobial treatment improves survival or comfort is not well understood. The authors conducted a prospective cohort study of nursing home residents with advanced dementia and their health care proxies. Residents were living in 22 nursing homes with at least 60 beds, located within 60 miles of Boston. The patients were at least 60 years old, had advanced dementia (as defined by validated instruments) and had a proxy to provide consent. Data collection included chart review, interviews with nurses who were caring for the subjects, and physical exams of the residents. Data were collected at baseline and then quarterly, and data about deceased subjects were recorded within two weeks of the patient's death. Charts were examined for documentation of pneumonia, unstable vital signs, use of x-ray, and whether aspiration was noted to be a cause. Treatments provided for the pneumonia were divided into four categories: none, oral antimicrobials, intramuscular antimicrobials, and intravenous antimicrobials/patient hospitalization. Survival was defined as the days from an episode until death or the end of the follow-up period. Nursing data regarding patient symptoms was recorded every 90 days using a standardized instrument measuring pain, dyspnea, depression, fear, anxiety, agitation, and resistance to care.

An increasing number of patients receive prolonged mechanical ventilation, yet their long-term outcomes have not been well described. The authors enrolled a prospective cohort of patients and their surrogates from intensive care units (ICUs) at an academic medical center. Eligible patients received at least three weeks of mechanical ventilation with less than two days of unassisted breathing, or at least four days followed by a tracheotomy in anticipation of prolonged ventilatory support. Outcomes, assessed by interview with patients or surrogates and review of medical records, included mortality, quality of life, and functional status at one year.

Patients who receive prolonged mechanical ventilation have high mortality and functional dependence and poor quality of life a year after hospital discharge.

Provider-surrogate concordance about prognosis is often poor, and providers may not understand why families make decisions that are incongruous with their clinical prognostic estimates. However, the sources families use to assess prognosis are poorly understood. The authors performed a mixed quantitative-qualitative methods analysis of semistructured interviews with adult, English-speaking surrogates of intensive care unit (ICU) patients at an academic medical center. Eligible patients were mechanically ventilated, lacked decision-making capacity, and had an in-hospital mortality risk of at least 40% as measured by their Acute Physiology and Chronic Health Evaluation II score. Surrogates were interviewed during the patient's ICU stay. First, they were asked to provide a numeric estimate of the patient's hospital survival (between 0% and 100%). Then, they were asked to describe the reasons for their estimate. Interviews were audio-recorded, transcribed, and analyzed using qualitative methods to identify key themes.

At the end of life, surrogates make health care decisions for most patients, yet surrogate-patient concordance about treatment preferences is often poor. This randomized controlled trial examined the ability of a structured patient-centered interview to improve surrogates' knowledge of seriously ill patients' end-of-life treatment preferences. Surrogates and patients with heart failure and end-stage renal disease were enrolled from outpatient community and academic clinics and dialysis centers in two cities in Wisconsin, and randomized to receive either usual care or the interview intervention. Usual care patient-surrogate pairs received routine advance care planning per routine practice at the site, including assessing whether the patient had an advance directive and, if they had not, offering to assist in completion. One study site offered a structured interview that did not routinely include the surrogate. The interview intervention was 60–90 minutes, included the patient and surrogate, and was conducted by a trained facilitator. It began with determining patients' understanding of their condition and its likely course, hopes and fears, what gave their life meaning, and how past medical and end-of-life experiences influenced their treatment preferences. The interviewer explained the importance of surrogate understanding of patient preferences, then presented disease-specific scenarios and elicited the patient's preferences for each. The interview concluded by highlighting the importance of the discussion for future decisions that the surrogate might need to make. The study outcome was patient-surrogate concordance about treatment preferences in four scenarios: a low probability of survival, severe functional impairment, severe cognitive impairment, and cardiopulmonary arrest. For each, options were to provide or not provide life-prolonging treatment.

Structured, facilitated patient-surrogate conversations are associated with improved surrogate understanding of patient wishes.

In advanced cancer patients, receipt of life-sustaining therapies at the end of life (EOL) is associated with poor patient and family outcomes, yet providers struggle with how to effectively explain treatments such as mechanical ventilation and cardiopulmonary resuscitation (CPR). This randomized controlled trial tested the effect of a video presenting EOL care options on EOL treatment preferences in patients with malignant glioma at an academic medical center. Eligible patients could communicate in English and provide informed consent. They were approached in the outpatient setting by their primary oncologist. Enrolled patients were randomized to receive either a verbal narrative alone, or the verbal narrative supplemented by a video depicting the same information. Three care options were presented: 1) Life-prolonging care, which aims to prolong life at any cost and includes all potentially indicated treatments, such as CPR, mechanical ventilation, and ICU care; 2) Basic medical care, which aims to maintain physical and mental function, includes hospitalization, intravenous fluids, and antibiotics, but excludes CPR, mechanical ventilation, and ICU care; and 3) Comfort care, which aims to maximize comfort and alleviate suffering, includes treatments to relieve symptoms, hospitalization only for symptom control, and excludes CPR, mechanical ventilation, and ICU care. The supplemental video was six minutes in length and consisted of a narrator presenting the information from the verbal narrative, along with visual images of each care option. Study outcomes were the patient's preferred care option if their cancer became very advanced, their CPR preference, their knowledge of CPR and the care options, and, for patients randomized to view the video, its perceived usefulness and acceptability.