Leslie J. Blackhall

Ethnicity and attitudes towards life sustaining technology

The ethical and legal implications of decisions to withhold and withdraw life support have been widely debated. Making end-of-life decisions is never easy, and when the cultural background of doctor and patient differ, communication about these issues may become even more difficult. In this study, we examined the attitudes of people aged 65 and older from different ethnic groups toward foregoing life support. To this end, we conducted a survey of 200 respondents from each of four ethnic groups: European-American, African-American, Korean-American and Mexican-American (800 total), followed by in-depth ethnographic interviews with 80 respondents. European-Americans were the least likely to both accept and want life-support (p < 0.001). Mexican-Americans were generally more positive about the use of life-support and were more likely to personally want such treatments (p < 0.001). Ethnographic interviews revealed that this was due to their belief that life-support would not be suggested if a case was truly hopeless. Compared to European-Americans, Korean-Americans were very positive regarding life-support (RR = 6.7, p < 0.0001); however, they did not want such technology personally (RR = 1.2, p = 0.45). Ethnographic interviews revealed that the decision of life support would be made by their family. Compared to European-Americans, African-Americans felt that it was generally acceptable to withhold or withdraw life-support (RR = 1.6, p = 0.06), but were the most likely to want to be kept alive on life-support (RR = 2.1, p = 0.002). Ethnographic interviews documented a deep distrust towards the health care system and a fear that health care was based on ones ability to pay. We concluded that (a) ethnicity is strongly related to attitudes toward and personal wishes for the use of life support in the event of coma or terminal illness, and (b) this relationship was complex and in some cases, contradictory.

Ethnicity and advance care directives.

dvance care directives for health care have been promoted as a way to improve end-of-life decision A making. These documents allow a patient to state, in advance of incapacity, the types of medical treatments they would like to receive (a living will), to name a surrogate to make those decisions (a durable power of attorney for health care), or to do both. Although studies have shown that both physicians and patients generally have positive attitudes about the use of these documents,’ relatively few individuals have actually completed one? What underlies this discrepancy between amtudes and behavior with regard to advance care directives? One obvious explanation is tack of acccss. Emanuel et al. estimated that approximately 90 percent of the population desire an advance care directive;’ and they pointed to access as the major barrier. Yet interventions that increase accessibility have typically failed to yield more than a 20 percent completion rate.’ Thus, it appears that access is not the sole determinant of advance care directive completion. r\ second and related factor oftcn cited to account for the relatively low completion rate is knowledge. It has been argued that if individuals simply had sufficient information &out advance directives, they would complete one. The bulk of existing research, however, does not support this proposition. Far instance, in a random study of 302 patients, Jacobson et al. found that although 90 percent of them knew about living wills, only 20 percent had actually completed one? Moreover, in a study by Sachs, Stocking, and Mils: fifty-two patients were specifically given both information on advance care directives and copies of forms for living wills and durable powers of attorney for health

Bioethics in a Different Tongue: The Case of Truth-Telling

After a survey of 800 seniors from four different ethnic groups showed that Korean-American and Mexican-American subjects were much less likely than their European-American and African-American counterparts to believe that a patient should be told the truth about the diagnosis and prognosis of a terminal illness, we undertook an ethnographic study to look more deeply at attitudes and experiences of these respondents. European-American and African-American respondents were more likely to view truth-telling as empowering, enabling the patient to make choices, while the Korean-American and Mexican-American respondents were more likely to see the truth-telling as cruel, and even harmful, to the patients. Further differences were noted in how the truth should be told and even in definitions of what constitutes “truth” and “telling”. Clinical and bioethics professionals should be aware of how their cultural and economic backgrounds influence the way they perceive ethical dilemmas and remember to make room for the diverse views of the populations they serve.

A Pilot Study Evaluating the Safety and Efficacy of Modafinil for Cancer-Related Fatigue

BACKGROUND Fatigue is a common symptom that lowers the quality of life of patients with cancer, affecting between 60% and 90% of patients. Relatively few options are available for the treatment of this debilitating condition. Modafinal, a psychostimulant developed for the treatment of narcolepsy, has been used to treat fatigue in other diseases such as multiple sclerosis, but little data support its use in cancer patients. OBJECTIVE AND DESIGN The primary objective of this open-label pilot study was to evaluate the safety, and efficacy of modafinil in improving cancer-related fatigue (CRF) as measured by the Brief Fatigue Inventory (BFI). The effect of this agent on depression, quality of life, functional status, and cognitive function was also assessed. Modafinal was self-administered at a dose of 100 mg/d during weeks 1-2, and 200 mg during weeks 3-4. Assessments were performed at baseline, 2, and 4 weeks. RESULTS BFI score was improved in 46% of patients at 2 weeks and 75% at 4 weeks (p = 0.025). Hospital Anxiety and Depression Scale scores declined at 2 and 4 weeks (p < 0.001). Most scales for neurocognitive function were unchanged. Score for all Functional Assessment of Cancer Therapy-Brain (FACT-BR) subscales (measuring quality of life), except social/family well-being, were improved (p < 0.05) at 2 and 4 weeks. Significant changes in Eastern Cooperative Oncology Group (ECOG) performance status were noted, with 40% of patients improving at least one level. Modafinil was well-tolerated with only one patient discontinuing treatment due to drug-related toxicity. CONCLUSION In this pilot study modafinil was well-tolerated and effective for fatigue in patients with cancer. Improvements were also seen in mood, quality of life, and functional status.

Amyotrophic lateral sclerosis and palliative care: where we are, and the road ahead.

Patients with amyotrophic lateral sclerosis (ALS) have high symptom burdens, including pain, fatigue, dyspnea, and sialorrhea, and they must make difficult decisions about the use of life‐prolonging therapies, such as long‐term mechanical ventilation. The impact of ALS is also felt by family caregivers who often struggle to meet the heavy physical, financial, and emotional demands associated with the illness. Expert multidisciplinary care may improve both quality and length of life of patients with ALS. However, although advances have been made in the treatment of some symptoms, others, including pain management, remain poorly studied. Involvement of palliative care specialists as part of the ALS multidisciplinary team is recommended, as we continue to work toward improving the quality of life for patients and their families. Muscle Nerve, 2012

Do Palliative Care Clinics Screen for Substance Abuse and Diversion? Results of a National Survey

BACKGROUND Opioids are the mainstay of treatment of cancer pain. With increased use there have been concerns about rising rates of prescription drug abuse and diversion. Although there has been an increase in research and practice guidelines about the scope of the problem for chronic, nonmalignant pain, less information is available about both the frequency of the problem and current practices regarding screening for substance abuse and diversion in patients and family members seen in palliative care clinics. OBJECTIVE The aim of this study was to evaluate the degree to which palliative programs felt that substance abuse and diversion was an issue, and to identify practices regarding care of patients with potential substance misuse issues. METHODS We sent a survey regarding substance abuse perception, policies, training, and screening to 94 accredited palliative medicine fellowship program directors as obtained by the Accreditation Council for Graduate Medical Education (ACGME) directory. RESULTS We received usable responses from 38 (40.4%) programs. Policies for screening patients (40.5%) or family members (16.2%), dealing with diversion (27%), and use of a screening tool (32.4%) were reported infrequently. Despite this, one-half of respondents indicated that substance abuse and diversion was an issue for their clinics, with only 25% indicating substance abuse was not an issue. Additionally, the majority of fellows (83%) and about half (47%) of staff received mandatory training for dealing with substance misuse. All programs provided some screening of patients, with 48.7% screening all patients for abuse. Screening of family members was relatively rare, as was routine use of the urine drug screen (UDS). CONCLUSION Despite increased concerns about substance abuse, the majority of programs did not have substance abuse and diversion policies or report screening all patients, with screening of caregivers rarely reported. Consensus guidelines addressing substance abuse and diversion for palliative patients are needed to address this growing problem.

CARE Track for Advanced Cancer: Impact and Timing of an Outpatient Palliative Care Clinic.

BACKGROUND Studies suggest that outpatient palliative care can reduce hospitalization and increase hospice utilization for patients with cancer, however there are insufficient resources to provide palliative care to all patients from time of diagnosis. It is also unclear whether inpatient consultation alone provides similar benefits. A better understanding of the timing, setting, and impact of palliative care for patients with cancer is needed. OBJECTIVES The purpose of this study was to measure timing of referral to outpatient palliative care and impact on end-of-life (EOL) care. DESIGN The Comprehensive Assessment with Rapid Evaluation and Treatment (CARE Track) program is a phased intervention integrating outpatient palliative care into cancer care. In Year 1 patients were referred at the discretion of their oncologist. SETTING Academic medical center. MEASUREMENTS We compared EOL hospitalization, hospice utilization, and costs of care for CARE Track patients compared to those never seen by palliative care or seen only in hospital. RESULTS Patients were referred a median of 72.5 days prior to death. CARE Track patients had few hospitalizations at end of life, were less likely to die in hospital, had increased hospice utilization, and decreased costs of care; these results were significant even after controlling for differences between groups. Inpatient consultation alone did not impact these variables. However, only approximately half of patients with incurable cancers were referred to this program. CONCLUSION Referral outpatient palliative care within 3 months of death improved EOL care and reduced costs, benefits not seen with inpatient care only. However, many patients were never referred, and methods of systematically identifying appropriate patients are needed.

Screening for substance abuse and diversion in Virginia hospices.

BACKGROUND Although inadequate treatment of pain is a problem for hospice patients, increases in the medical use of opioids have been accompanied by increasing levels of abuse and diversion in the community. Balancing pain relief with concerns about abuse and diversion is a difficult issue for hospices. OBJECTIVES The aim of this study was to determine policies and practices in Virginia hospices regarding substance abuse and diversion in patients and their families. METHODS A survey was conducted of Virginia hospices about policies, perceptions, and training regarding substance abuse and diversion. RESULTS Twenty-three of 63 hospice agencies responded (36.5%). Less than half (43.8%) required mandatory substance abuse training. Only 43.5% had policies regarding screening for substance abuse in patients; 30.4% had a policy regarding screening for substance abuse in family members. Policies regarding screening for diversion in patients (21.7%), and families (17.4%) were rare. Policies regarding opioid use in patients with a history of substance abuse or diversion were uncommon (33.3%, 30.4%, respectively); 30.4% had policies regarding use of opioids in patients whose family members had a history of diversion or abuse. Thirty-eight percent of hospices agreed that substance abuse and diversion was a problem for their agency, and these agencies were more likely to have written policies or mandatory training. CONCLUSION Most Virginia hospices lack mandatory training and policies regarding substance abuse and diversion in patients and family members. More than one-third felt that abuse and diversion were problems in their agencies. A national conversation regarding policies toward substance abuse and diversion in hospice agencies is needed.

An Interprofessional Workshop for Students to Improve Communication and Collaboration Skills in End-of-life Care

Interprofessional care is critical for patients at the end of life (EOL), but programs to teach communication skills to medical and nursing students are rare. The aims of this study were to determine whether an interprofessional workshop improves (1) student attitudes toward teamwork and (2) self-efficacy for communicating in difficult situations. Nursing and medical students attended a workshop with collaborative role play of an EOL conversation. Before the workshop, students showed different attitudes toward teamwork and collaboration and varying levels of confidence about communication skills. After the workshop, both groups reported more positive attitudes toward teamwork but a mixed picture of confidence in communication. Experiential interprofessional education workshops enhance perceptions about the benefits of teamwork, but further teaching and evaluation methods are needed to maximize the effectiveness.

Collaborative care best practice models: A new educational paradigm for developing interprofessional educational (IPE) experiences

Nurses, physicians and other healthcare professionals, as well as their student counterparts at all levels of training contend with enormous pressures that include a complicated healthcare system; ...