Jean S. Kutner

Information needs in terminal illness

Despite evidence that doctor-patient communication affects important patient outcomes, patient expectations are often not met. Communication is especially important in terminal illness, when the appropriate course of action may depend more on patient values than on medical dogma. We sought to describe the issues important to terminally ill patients receiving palliative care and to determine whether patient characteristics influence the needs of these patients. We utilized a multimethod approach, first conducting interviews with 22 terminally ill individuals, then using these data to develop a more structured instrument which was administered to a second population of 56 terminally ill patients. Patient needs and concerns were described and associations between patient characteristics and issues of importance were evaluated. Seven key issues were identified in the initial interviews: change in functional status or activity level; role change; symptoms, especially pain; stress of the illness on family members; loss of control; financial burden and conflict between wanting to know what is going on and fearing bad news. Overall, respondent needs were both disease- and illness-oriented. Few easily identifiable patient characteristics were associated with expressed concerns or needs, suggesting that physicians need to individually assess patient needs. Terminally ill patients receiving palliative care had needs that were broad in scope. Given that few patient characteristics predicted responses, and that the majority opinion may not accurately reflect that of an individual patient, health care providers must be aware of the diverse concerns among this population and individualize assessment of each patients needs and expectations.

Effect of Spanish interpretation method on patient satisfaction in an urban walk-in clinic.

AbstractOBJECTIVE: To examine the effect of Spanish interpretation method on satisfaction with care. DESIGN: Self-administered post-visit questionnaire. SETTING: Urban, university-affiliated walk-in clinic. PARTICIPANTS: Adult, English- and Spanish-speaking patients presenting for acute care of non-emergent medical problems. MEASUREMENTS AND MAIN RESULTS: Satisfaction with overall clinic visit and with 7 provider characteristics was evaluated by multiple logistic regression, controlling for age, gender, ethnicity, education, insurance status, having a routine source of medical care, and baseline health. “Language-concordant” patients, defined as Spanish-speaking patients seen by Spanish-speaking providers and English-speaking patients, and patients using AT&T telephone interpreters reported identical overall visit satisfaction (77%; P=.57), while those using family or ad hoc interpreters were significantly less satisfied (54% and 49%; P<.01 and P=.007, respectively). AT&T interpreter use and language concordance also yielded similar satisfaction rates for provider characteristics (P>.2 for all values). Compared to language-concordant patients, patients who had family members interpret were less satisfied with provider listening (62% vs 85%; P=.003), discussion of sensitive issues (60% vs 76%; P=.02), and manner (62% vs 89%; P=.005). Patients who used ad hoc interpreters were less satisfied with provider skills (60% vs 83%; P=.02), manner (71% vs 89%; P=.02), listening (54% vs 85%; P=.002), explanations (57% vs 84%; P=.02), answers (57% vs 84%; P=.05), and support (63% vs 84%; P=.02). CONCLUSIONS: Spanish-speaking patients using AT&T telephone interpretation are as satisfied with care as those seeing language-concordant providers, while patients using family or ad hoc interpreters are less satisfied. Clinics serving a large population of Spanish-speaking patients can enhance patient satisfaction by avoiding the use of untrained interpreters, such as family or ad hoc interpreters.

Massage Therapy versus Simple Touch to Improve Pain and Mood in Patients with Advanced Cancer: A Randomized Trial

Context Some patients nearing death seek pain relief with massage, but little is known about the effectiveness of massage in managing pain in palliative care settings. Contribution In this randomized trial in 380 patients with advanced cancer, improvement in pain and mood immediately after treatment was greater with massage than with simple touch. Unfortunately, there were no sustained differences in pain, quality of life, or analgesic use during 3 weeks. Adverse effects were infrequent and similar in both groups. Implication Massage may offer some immediate relief for patients with advanced cancer, but the absence of sustained effects demonstrates the need for more effective strategies to manage pain at the end of life. The Editors Symptom relief is central to end-of-life care; however, many terminally ill individuals experience serious pain and other physical and emotional symptoms (14). Studies examining the efficacy of therapies that may mediate these symptoms deserve the highest priority. The Institute of Medicine and the National Institutes of Health recommend research directed at improving end-of-life care (5, 6). Pain associated with advanced cancer can cause physical and emotional distress, leading to decreased functional ability and quality of life. Massage may interrupt the cycle of distress through the therapists intention (presence, communication, and desire to produce a therapeutic response), induction of a relaxation response, increased blood and lymphatic circulation, potentiation of analgesic effects, decreased inflammation and edema, manual release of muscle spasms, increased endogenous endorphin release, and competing sensory stimuli that override pain signals (711). Despite theoretical bases supporting the use and growing acceptance of massage therapy, few randomized clinical trials have assessed its efficacy. Large trials have been difficult to design and carry out; challenges include frailty of patients with late-stage cancer and reluctance of health care providers to refer patients because of the possibility of randomization to nonmassage therapy control (12). Therapeutic massage can reduce pain and improve symptom distress and quality of life for patients with cancer at the end of life. The purpose of the REST (Reducing End-of-Life Symptoms with Touch) study was to evaluate the efficacy of massage compared with an exposure controlling for time, attention, and touch. We hypothesized that massage would decrease pain and explored effects on quality of life, physical and emotional symptom distress, and analgesic medicine use. Methods Design Overview We conducted this prospective, 2-group, randomized, single-blind trial between November 2003 and October 2006. After we evaluated patients for inclusion and exclusion criteria, patients provided written informed consent. Then we randomly assigned patients to a treatment group (massage) or control exposure (simple touch). Figure 1 depicts the timing of the study procedures for a hypothetical participant. We collected individual characteristics, disease, pain characteristics, symptom distress, quality of life, functional status (Karnofsky Performance Scale score) (13), expected helpfulness of massage for pain, and concurrent interventions (pharmacologic and nonpharmacologic) at baseline (within 72 hours of study enrollment) and at 3 subsequent weekly visits over the 3 to 4 weeks of participation (sustained outcomes). Final data collection occurred approximately 1 week after the final treatment. Data collectors were blinded to treatment assignment. Participants received up to six 30-minute treatments over 2 weeks, with at least 24 hours between treatment sessions. The initial treatment session occurred within 48 hours of baseline data collection. The treatment provider and patient determined the scheduling of treatment sessions. Treatment providers who were not blinded to treatment assignment obtained the immediate outcomes just before and after every treatment session. All participants received routine care in addition to the specified interventions. The Colorado Multiple Institutional Review Board and, where applicable, site-specific institutional review boards approved the study. Figure 1. Study overview: timing of study procedures. Setting and Participants Study sites included 15 U.S. hospices that are members of the Population-based Palliative Care Research Network (PoPCRN) (14) and the University of Colorado Cancer Center, Aurora, Colorado. Eligible participants were English-speaking adults with advanced cancer (stage III or IV, all cancer types, any care setting) who had at least moderate pain (score 4 on a 0- to 10-point scale) in the week before enrollment, an anticipated life expectancy of at least 3 weeks, and the ability to consent. Exclusion criteria included receipt of professional massage within 1 month of enrollment, anticoagulant therapy, known platelet count less than 10109 cells/L, or known unstable spine. Randomization and Interventions Verification of eligibility was forwarded by a study coordinator from each study site to the University of Colorado researchers. Two designated investigators randomly assigned patients; assignments were transmitted back to the requesting site. All study personnel other than the on-site study coordinators and these 2 designated investigators were blinded to the randomization sequence. An SAS software program (SAS Institute, Cary, North Carolina) generated the randomization sequence by producing a randomized block design stratified by study site. Block size randomly varied among 2, 4, and 6 so that it was not possible to predict the next assignment. To minimize the likelihood that potential participants would decline enrollment because of reluctance to be randomly assigned, we offered massage after study completion to those assigned to the control group. Experimental Treatment: Massage Therapy The massage intervention included gentle effleurage, petrissage, and myofascial trigger point release. Effleurage is a smooth, gliding stroke; petrissage is squeezing, rolling, and kneading the muscles; and trigger point release provides concentrated finger pressure to painful localized areas in muscles to break cycles of spasm and pain (15). Individual therapist judgment dictated the frequency of rhythm, rate, or stroke; sequence or mix of strokes; time spent in each stroke; stroke length; and body area massaged (16). Massage therapists spent 65% of the time in effleurage and 35% in petrissage. The most frequently massaged areas of the body were the neck and upper back (about 80% of the time) and arms, hands, lower legs, and feet (about 75% of the time). Other areas, such as the chest, abdomen, buttocks, back of the thighs, and forehead were massaged less than 50% of the time. Therapists appropriately modified massage in persons with skin fragility, postural limitations, edema, osteoporosis, or bone metastasis. Therapists avoided sites of inflammation or infection, hyperesthesias, injury, surgery, ports, catheters, deep venous thrombosis, and tumors. Therapists identified and treated up to 3 myofascial trigger points per session (located 15% to 25% of the time in the neck, upper trapezius, and lower trapezius regions). One half of the sessions were provided with the patient supine, 25% seated, and the remainder split between side-lying and prone positions. Temperature and level of privacy varied with setting. Fewer than 25% of participants were unclothed during treatments. Massage was performed by licensed massage therapists who had at least 6 months of experience treating patients with advanced cancer or hospice patients and completed a minimum 500-hour program of study in massage from an institution recognized by their state as a vocational school. Control Exposure We designed the control exposure, simple touch, to control for the time, attention, touch, and healing intent components of the intervention (17). The control consisted of placement of both hands on the participant for 3 minutes at each of the following locations bilaterally: base of neck, shoulder blades, lower back, calves, heels, clavicles, lower arms, hands, patellae, and feet. Pressure was light and consistent, with no side-to-side hand movement. Control therapy providers interrupted conscious healing intention by silently counting backward from 100 by 7, reciting nursery rhymes, or planning their days activities (18, 19). The control treatments were provided by individuals with no past body or energy work experience. All treatment providers participated in standardized hands-on training, received a study manual and training video, and were evaluated for competency in study procedures. We monitored adherence to study protocols during twice-yearly site visits. Treatment providers in both groups used Biotone hypoallergenic unscented massage cream (Biotone, San Diego, California). For the purposes of standardization and to mediate the presence of intervening variables, we did not permit music, essential oils, or energy work and instructed treatment providers to limit their communication to providing instructions or responding to therapy-related questions. To minimize variation by treatment provider, 1 primary massage therapist or simple-touch provider per participant at each study site administered study treatments. Outcomes and Follow-up We used face-to-face, interviewer-administered questionnaires to collect all study data. We measured neuropathic pain at baseline only by the Neuropathy Pain Scale (0- to 10-point scale), which is sensitive to pain qualities most common to neuropathic pain syndromes (20, 21). Presence of neuropathic pain was defined as a Neuropathy Pain Scale summary score greater than 3. Primary Outcomes: Immediate and Sustained Change in Pain The immediate effect was measured by the pain intensity scale of the Memorial Pain Assessment Card (MPAC) (0 to 10 points; 10 = worst pain) (22). The sustained effect was measured b

Safety and benefit of discontinuing statin therapy in the setting of advanced, life-limiting illness: a randomized clinical trial.

IMPORTANCE For patients with limited prognosis, some medication risks may outweigh the benefits, particularly when benefits take years to accrue; statins are one example. Data are lacking regarding the risks and benefits of discontinuing statin therapy for patients with limited life expectancy. OBJECTIVE To evaluate the safety, clinical, and cost impact of discontinuing statin medications for patients in the palliative care setting. DESIGN, SETTING, AND PARTICIPANTS This was a multicenter, parallel-group, unblinded, pragmatic clinical trial. Eligibility included adults with an estimated life expectancy of between 1 month and 1 year, statin therapy for 3 months or more for primary or secondary prevention of cardiovascular disease, recent deterioration in functional status, and no recent active cardiovascular disease. Participants were randomized to either discontinue or continue statin therapy and were monitored monthly for up to 1 year. The study was conducted from June 3, 2011, to May 2, 2013. All analyses were performed using an intent-to-treat approach. INTERVENTIONS Statin therapy was withdrawn from eligible patients who were randomized to the discontinuation group. Patients in the continuation group continued to receive statins. MAIN OUTCOMES AND MEASURES Outcomes included death within 60 days (primary outcome), survival, cardiovascular events, performance status, quality of life (QOL), symptoms, number of nonstatin medications, and cost savings. RESULTS A total of 381 patients were enrolled; 189 of these were randomized to discontinue statins, and 192 were randomized to continue therapy. Mean (SD) age was 74.1 (11.6) years, 22.0% of the participants were cognitively impaired, and 48.8% had cancer. The proportion of participants in the discontinuation vs continuation groups who died within 60 days was not significantly different (23.8% vs 20.3%; 90% CI, -3.5% to 10.5%; P=.36) and did not meet the noninferiority end point. Total QOL was better for the group discontinuing statin therapy (mean McGill QOL score, 7.11 vs 6.85; P=.04). Few participants experienced cardiovascular events (13 in the discontinuation group vs 11 in the continuation group). Mean cost savings were

Symptom Burden, Depression, and Spiritual Well-Being: A Comparison of Heart Failure and Advanced Cancer Patients

3.37 per day and

Brief Communication: Management of Implantable Cardioverter-Defibrillators in Hospice: A Nationwide Survey

716 per patient. CONCLUSIONS AND RELEVANCE This pragmatic trial suggests that stopping statin medication therapy is safe and may be associated with benefits including improved QOL, use of fewer nonstatin medications, and a corresponding reduction in medication costs. Thoughtful patient-provider discussions regarding the uncertain benefit and potential decrement in QOL associated with statin continuation in this setting are warranted. TRIAL REGISTRATION clinicaltrials.gov Identifier: NCT01415934.

Focus Group Findings about the Influence of Culture on Communication Preferences in End‐of‐Life Care

ABSTRACTBACKGROUNDA lower proportion of patients with chronic heart failure receive palliative care compared to patients with advanced cancer.OBJECTIVEWe examined the relative need for palliative care in the two conditions by comparing symptom burden, psychological well-being, and spiritual well-being in heart failure and cancer patients.DESIGNThis was a cross-sectional study.PARTICIPANTSSixty outpatients with symptomatic heart failure and 30 outpatients with advanced lung or pancreatic cancer.MEASUREMENTSSymptom burden (Memorial Symptom Assessment Scale-Short Form), depression symptoms (Geriatric Depression Scale-Short Form), and spiritual well-being (Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being scale).MAIN RESULTSOverall, the heart failure patients and the cancer patients had similar numbers of physical symptoms (9.1 vs. 8.6, p = 0.79), depression scores (3.9 vs. 3.2, p = 0.53), and spiritual well-being (35.9 vs. 39.0, p = 0.31) after adjustment for age, gender, marital status, education, and income. Symptom burden, depression symptoms, and spiritual well-being were also similar among heart failure patients with ejection fraction ≤30, ejection fraction >30, and cancer patients. Heart failure patients with worse heart failure-related health status had a greater number of physical symptoms (13.2 vs. 8.6, p = 0.03), higher depression scores (6.7 vs. 3.2, p = 0.001), and lower spiritual well-being (29.0 vs. 38.9, p < 0.01) than patients with advanced cancer.CONCLUSIONSPatients with symptomatic heart failure and advanced cancer have similar needs for palliative care as assessed by symptom burden, depression, and spiritual well-being. This implies that heart failure patients, particularly those with more severe heart failure, need the option of palliative care just as cancer patients do.

Senior Medical Students' Perceptions of the Adequacy of Education on End-of-Life Issues

BACKGROUND Communication about the deactivation of implantable cardioverter-defibrillators (ICDs) in patients near the end of life is rare. OBJECTIVE To determine whether hospices are admitting patients with ICDs, whether such patients are receiving shocks, and how hospices manage ICDs. DESIGN Cross-sectional survey. SETTING Randomly selected hospice facilities. PARTICIPANTS 900 hospices, 414 of which responded fully. MEASUREMENTS Frequency of admission of patients with ICDs, frequency with which patients received shocks, existence of ICD deactivation policies, and frequency of deactivation. RESULTS 97% of hospices admitted patients with ICDs, and 58% reported that in the past year, a patient had been shocked. Only 10% of hospices had a policy that addressed deactivation. On average, 42% (95% CI, 37% to 48%) of patients with ICDs had the shocking function deactivated. LIMITATION The study relied on the knowledge of hospice administrators. CONCLUSION Hospices are admitting patients with ICDs, and patients are being shocked at the end of life. Ensuring that hospices have policies in place to address deactivation may improve the care for patients with these devices. The authors provide a sample deactivation policy. PRIMARY FUNDING SOURCE National Institute of Aging and National Institute of Nursing Research.

Health Care for Older Americans with Multiple Chronic Conditions: A Research Agenda

AbstractBACKGROUND: Little guidance is available for health care providers who try to communicate with patients and their families in a culturally sensitive way about end-of-life care. OBJECTIVE: To explore the content and structure of end-of-life discussions that would optimize decision making by conducting focus groups with two diverse groups of patients that vary in ethnicity and socioeconomic status. DESIGN: Six focus groups were conducted; 3 included non-Hispanic white patients recruited from a University hospital (non-Hispanic white groups) and 3 included African-American patients recruited from a municipal hospital (African-American groups). A hypothetical scenario of a dying relative was used to explore preferences for the content and structure of communication. PARTICIPANTS: Thirty-six non-Hispanic white participants and 34 African-American participants. APPROACH: Content analysis of focus group transcripts. RESULTS: Non-Hispanic white participants were more exclusive when recommending family participants in end-of-life discussions while African-American participants preferred to include more family, friends and spiritual leaders. Requested content varied as non-Hispanic white participants desired more information about medical options and cost implications while African-American participants requested spiritually focused information. Underlying values also differed as non-Hispanic white participants expressed more concern with quality of life while African-American participants tended to value the protection of life at all costs. CONCLUSIONS: The groups differed broadly in their preferences for both the content and structure of end-of-life discussions and on the values that influence those preferences. Further research is necessary to help practitioners engage in culturally sensitive end-of-life discussions with patients and their families by considering varying preferences for the goals of end-of-life care communication.

A strategy to advance the evidence base in palliative medicine: formation of a palliative care research cooperative group.

CONTEXT It is unclear how well prepared U.S. senior medical students are to handle end-of-life issues as they reach the end of medical school. Additionally, the most optimal way of providing medical student end-of-life education has not been adequately defined. OBJECTIVE This study aims to determine the preparedness of senior medical students at U.S. medical schools regarding end-of-life issues. DESIGN A self-administered survey. SETTING Six medical schools throughout the United States, two of which have a formal curriculum on end-of-life issues, and four of which do not. PARTICIPANTS Fourth-year medical students during November through February of their senior year. MAIN OUTCOME MEASURE Self-reported preparation on a number of end-of-life competencies. RESULTS Of the 757 surveys sent out, 262 responses were received (34.6%). Only 22% to 53% of students (varying by topic) felt prepared by their education in the selected end-of-life competencies. Students attending medical schools with a formal end-of-life curriculum were more likely to feel prepared than students with no formal curriculum to address psychosocial issues (21% higher, p = 0.008), cultural/spiritual issues (21% higher, p = 0.005), technical aspects of end-of-life care (18% higher, p = 0.001), and treatment of common symptoms (34% higher, p = 0.001). Students who had more clinical experiences in palliative care were more likely to feel prepared to discuss end-of-life issues with patients (p = 0.013) and to treat common symptoms (p = 0.011). CONCLUSIONS This study demonstrates support for development of formal curriculum on end-of-life issues, and emphasizes the importance of clinical exposure to terminally ill patients to prepare medical students to provide quality end-of-life care.