Costs of End-of-Life Care

ABSTRACT

A 23-year-old hemophilia patient with severe pain from bleeding into his joints who developed problematic opioid use is described. The potential value of methadone in such a patient is described, as are the risks of drug interactions leading to toxicity and cardiac arrhythmias.     

Emotional Numbness Modifies the Effect of End-of-Life Discussions on End-of-Life Care

ContextOverall, end-of-life (EOL) discussions are unrelated to psychological distress and associated with lower rates of aggressive care near death. Nevertheless, patients who report that they feel emotionally numb about their illness might encounter difficulties cognitively processing an EOL discussion.ObjectivesWe hypothesized that emotional numbness would modify the effect of EOL discussions on the receipt of less aggressive EOL care.MethodsData were derived from structured interviews with 290 participants in the federally-funded Coping with Cancer Study, a multisite, prospective cohort study of patients with advanced cancer followed-up till their death. Patients' reports of EOL discussions with their physician and emotional numbness were assessed at a median of 4.6 months before their death. Information about aggressive EOL care (i.e., ventilation, resuscitation in the last week of life, death in the intensive care unit) was obtained from postmortem caregiver interviews and medical charts. Main and interactive effects of EOL discussions and emotional numbness on aggressive EOL care, adjusting for potential confounds, were evaluated using multiple logistic regression.ResultsThe likelihood of aggressive EOL care associated with having EOL discussions increased by a factor of nine (adjusted odds ratio = 9.02, 95% CI 1.37, 59.6, P = 0.022) for every unit increase in a patient's emotional numbness score.ConclusionEmotional numbness diminishes a patient's capacity to benefit from EOL discussions. The EOL decision making may be more effective if clinical communications with emotionally numb patients are avoided.     

Measuring the Quality of End-of-Life Care

ContextAlthough there is a documented need to improve end-of-life care, there are few validated and brief questionnaires that are available as outcome measures for use in improving that care.ObjectivesTo examine the measurement characteristics of the Quality of End-of-Life Care (QEOLC) questionnaire.MethodsIn a multisite, cross-sectional study of a mailed questionnaire, patients with life-limiting illnesses, their families, and nurses completed the QEOLC questionnaire. Patients and nurses were identified by physicians, and families were identified by participating patients. Physicians included general internists, oncologists, cardiologists, and pulmonologists from the Southeast and Pacific Northwest of the United States.ResultsEight hundred one patients, 310 of their families, and 885 nurses were identified by 85 physicians. Using structural equation modeling techniques corrected for clustering under physicians, we identified a patient-specific factor based on 11 items, a family-specific factor based on 22 items, a nurse-specific factor based on 11 items, and a common single-factor solution based on 10 items. Construct validity was supported by significant associations in the hypothesized direction between the identified QEOLC factors and each of the following: physician palliative care knowledge, patients' and families' ratings of overall quality of care, and patients' levels of symptom distress.ConclusionAlthough continued testing in heterogeneous samples is necessary, the current study supported the construct validity of the QEOLC questionnaire to assess physician skill at end-of-life care, thereby providing valid measures of quality end-of-life care. Furthermore, this approach is a model for development and validation of patient- and family-centered assessments of quality of care.     

End-of-Life Care: Challenges and Opportunities for Health Care Professionals

The failings of the American Health Care System in meeting the comprehensive needs of the seriously and terminally ill have led to both professional and public efforts to improve end-of-life care. Following a discussion of the shortcomings of end-of-life in America, this article describes the goals and philosophy of palliative care, while highlighting current innovative programs in end-of-life needs and insure quality of life for patients and families experiencing incurable, progressive illness. Health care professionals are called to respond to the challenges and opportunities of end-of-life care as individual health care providers, as members of professions, and as members of interdisciplinary teams committed to improving the care of the dying in America. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com?<?Website: http://www.haworthpressinc.com>]     

The Kansas Living Initiatives for End-of-Life Care

The Kansas Living Initiatives for End-of-Life Care (LIFE) project was formed in 1999 by over 70 Kansas organizations, agencies and associations to further the cause of dignified, comfortable and peaceful end of life in terminally ill patients. LIFE developed a module on end-of-life care that was added to the Kansas year 2000 Behavioral Risk Factor Surveillance system, convened meetings of partners including health professional licensing boards, reviewed state laws and regulations, and published a joint policy statement of the Kansas Boards of Healing Arts, Nursing and Pharmacy on the use of controlled substances for pain management. Activities of Project LIFE and outcomes are described.     

End-of-Life Care in an Acute Care Hospital: Linking Policy and Practice

The care of people who die in hospitals is often suboptimal. Involving patients in decisions about their care is seen as one way to improve care outcomes. Federal and state government policymakers in Australia are promoting shared decision making in acute care hospitals as a means to improve the quality of end-of-life care. If policy is to be effective, health care professionals who provide hospital care will need to respond to its patient-centered purpose. Health services will also be called upon to train health care professionals to work with dying people in a more participatory way and to assist them to develop the clinical processes that support shared decision making. Health professionals who manage clinical workplaces become central in reshaping this practice environment by promoting patient-centered care policy objectives and restructuring health service systems to routinely incorporate patient and family preferences about care at key points in the patient's care episode.     

Public Priorities and Preferences for End-of-Life Care in Namibia

ContextAlthough quality end-of-life care provision is an international public health issue, the majority of evidence is not generated in low- and middle-income countries that bear a disproportionate burden of progressive illnesses.ObjectivesTo identify the priorities and preferences of the Namibian public for end-of-life care.MethodsUsing a cross-sectional study design, data were collected in the country's capital, Windhoek, from November to December 2010.ResultsIn total, 200 respondents were recruited. The mean age was 27 years (SD 7.5; range 18–69), with nearly all (n = 199; 99.5%) expressing a religious affiliation. Being in pain was reported as the most concerning of nine common end-of-life symptoms and problems (n = 52; 26.1%), and the most important care-related aspect was having as much information as wanted (n = 144; 72%). The majority (64%) would want their end-of-life care to focus on improving their quality of life rather than extending it, with 40% not wanting to know if they had limited time left to live. Hospital (n = 96; 48%) and home (n = 64; 32%) were the most preferred places of death. The most important end-of-life priority was keeping a positive attitude (n = 128; 64%). Having had a close relative or friend diagnosed with a serious illness was associated with a 2.3 increase in the odds of preference for a hospital death (odds ratio = 2.34, P = 0.009, 95% CI 1.23–4.47).ConclusionThis study identified a number of areas that need to be pursued in future research to explore factors that may affect patient preferences and priorities in end-of-life care in Namibia.     

Family Perceptions of End-of-Life Care in long-term care facilities

The study examined the utility of the Family Perception of Care Scale (FPCS), which consists of four subscales: resident care, family support, communication, and rooming. This instrument was developed for the purposes of this study. Overall, family members were satisfied with end-of-life care. Satisfaction did not have a statistically significant relationship to family and resident characteristics. Survey questions with the highest number of low satisfaction ratings included staffing levels, updating families and involving them in care planning, and decision making. Family members considered pain control an important priority, followed by comfort care that included caring for a family member with dignity and sensitivity. Family members also valued it when staff were able to inform them that the death of their family member was near. Place of death was significantly associated with satisfaction, family members being more satisfied with end-of-life care when their family member died in the LTC facility as opposed to in hospital.