Factors Affecting Family Satisfaction with Inpatient End-of-Life Care

Background

Little data exists addressing satisfaction with end-of-life care among hospitalized patients, as they and their family members are systematically excluded from routine satisfaction surveys. It is imperative that we closely examine patient and institution factors associated with quality end-of-life care and determine high-priority target areas for quality improvement.

Methods

Between September 1, 2010 and January 1, 2012 the Canadian Health care Evaluation Project (CANHELP) Bereavement Questionnaire was mailed to the next-of-kin of recently deceased inpatients to seek factors associated with satisfaction with end-of-life care. The primary outcome was the global rating of satisfaction. Secondary outcomes included rates of actual versus preferred location of death, associations between demographic factors and global satisfaction, and identification of targets for quality improvement.

Results

Response rate was 33% among 275 valid addresses. Overall, 67.4% of respondents were very or completely satisfied with the overall quality of care their relative received. However, 71.4% of respondents who thought their relative did not die in their preferred location favoured an out-of-hospital location of death. A common location of death was the intensive care unit (45.7%); however, this was not the preferred location of death for 47.6% of such patients. Multivariate Poisson regression analysis showed respondents who believed their relative died in their preferred location were 1.7 times more likely to be satisfied with the end-of-life care that was provided (p = 0.001). Items identified as high-priority targets for improvement included: relationships with, and characteristics of health care professionals; illness management; communication; and end-of-life decision-making.

Interpretation

Nearly three-quarters of recently deceased inpatients would have preferred an out-of-hospital death. Intensive care units were a common, but not preferred, location of in-hospital deaths. Family satisfaction with end-of-life care was strongly associated with their relative dying in their preferred location. Improved communication regarding end-of-life care preferences should be a high-priority quality improvement target.     

End-of-life decision-making in Canada: the report by the Royal Society of Canada expert panel on end-of-life decision-making

This report on end-of-life decision-making in Canada was produced by an international expert panel and commissioned by the Royal Society of Canada. It consists of five chapters. Chapter 1 reviews what is known about end-of-life care and opinions about assisted dying in Canada. Chapter 2 reviews the legal status quo in Canada with regard to various forms of assisted death. Chapter 3 reviews ethical issues pertaining to assisted death. The analysis is grounded in core values central to Canada's constitutional order. Chapter 4 reviews the experiences had in a number of jurisdictions that have decriminalized or recently reviewed assisted dying in some shape or form. Chapter 5 provides recommendations with regard to the provision of palliative care in Canada, as well as recommendations for reform with respect to the various forms of assisted death covered in this document.     

From the tallest to (one of) the fattest: the enigmatic fate of the American population in the 20th century

Within the course of the 20th century the American population went through a virtual metamorphosis from being the tallest in the world, to being among the most overweight. The American height advantage over Western and Northern Europeans was between 3 and 9 cm in mid-19th century, and Americans tended to be underweight. However, today, the exact opposite is the case as the Dutch, Swedes, and Norwegians are the tallest, and the Danes, British and Germans--even the East-Germans--are also taller, towering over the Americans by as much as 3-7 cm. Americans also have shorter lives. The hypothesis is worth considering that this adverse development is related to the greater social inequality, an inferior health care system, and fewer social safety nets in the United States than in Western and Northern Europe, in spite of higher per capita income. The Western and Northern European welfare states, with cradle to grave health and unemployment insurance currently seems to provide a more propitious environment for the biological standard of living than its US counterpart.     

Advance directives: the views of health care professionals.

OBJECTIVES: This study examined the views and experiences of 20 physicians and 20 nurses at a major Canadian teaching hospital regarding the use of advance directives in clinical care. DESIGN: The participants were purposively drawn from four clinical specialties: family and community medicine, oncology, intensive care and geriatrics. Detailed interviews were conducted in person. Content analysis was used to code the data, which were further analysed with both quantitative and qualitative techniques. MAIN RESULTS: Thirty-nine of the 40 participants favoured the use of advance directives in clinical care; physicians had somewhat less positive attitudes than nurses toward such directives. Advance directives were thought by participants to be helpful in resolving disagreements between patients and their families about treatment options; in making patients more comfortable, both physically and psychologically, during the process of dying; and in opening up communication and trust among patients, their families and health care professionals. Concerns about the use of advance directives focused on the lack of clarity in some patients'' instructions, the absence of legal status for directives, the possible interference with a practitioner''s clinical judgement, the adequacy and appropriateness of patients'' information about their circumstances, and the type of intervention (passive or active) requested by patients. CONCLUSIONS: New regulations and legislation are making the use of advance directives more widespread. Health care professionals should participate in the development and implementation of these directives. Continuing professional education is essential in this regard.     

Communication Tools for End-of-Life Decision-Making in Ambulatory Care Settings: A Systematic Review and Meta-Analysis

BackgroundPatients with serious illness, and their families, state that better communication and decision-making with healthcare providers is a high priority to improve the quality of end-of-life care. Numerous communication tools to assist patients, family members, and clinicians in end-of-life decision-making have been published, but their effectiveness remains unclear.ObjectivesTo determine, amongst adults in ambulatory care settings, the effect of structured communication tools for end-of-life decision-making on completion of advance care planning.MethodsWe searched for relevant randomized controlled trials (RCTs) or non-randomized intervention studies in MEDLINE, EMBASE, CINAHL, ERIC, and the Cochrane Database of Randomized Controlled Trials from database inception until July 2014. Two reviewers independently screened articles for eligibility, extracted data, and assessed risk of bias. Grading of Recommendations Assessment, Development, and Evaluation (GRADE) was used to evaluate the quality of evidence for each of the primary and secondary outcomes.ResultsSixty-seven studies, including 46 RCTs, were found. The majority evaluated communication tools in older patients (age >50) with no specific medical condition, but many specifically evaluated populations with cancer, lung, heart, neurologic, or renal disease. Most studies compared the use of communication tools against usual care, but several compared the tools to less-intensive advance care planning tools. The use of structured communication tools increased: the frequency of advance care planning discussions/discussions about advance directives (RR 2.31, 95% CI 1.25–4.26, p = 0.007, low quality evidence) and the completion of advance directives (ADs) (RR 1.92, 95% CI 1.43–2.59, p<0.001, low quality evidence); concordance between AD preferences and subsequent medical orders for use or non-use of life supporting treatment (RR 1.19, 95% CI 1.01–1.39, p = 0.028, very low quality evidence, 1 observational study); and concordance between the care desired and care received by patients (RR 1.17, 95% CI 1.05–1.30, p = 0.004, low quality evidence, 2 RCTs).ConclusionsThe use of structured communication tools may increase the frequency of discussions about and completion of advance directives, and concordance between the care desired and the care received by patients. The use of structured communication tools rather than an ad-hoc approach to end-of-life decision-making should be considered, and the selection and implementation of such tools should be tailored to address local needs and context.RegistrationPROSPERO CRD42014012913     

Biohistorical approaches to “race” in the United States: Biological distances among African Americans,European Americans,and their ancestors

Folk taxonomies of race are the categorizations used by people in their everyday judgments concerning the persons around them. As cultural traditions, folk taxonomies may shape gene flow so that it is unequal among groups sharing geography. The history of the United States is one of disparate people being brought together from around the globe, and provides a natural experiment for exploring the relationship between culture and gene flow. The biohistories of African Americans and European Americans were compared to examine whether population histories are shaped by culture when geography and language are shared. Dental morphological data were used to indicate phenotypic similarity, allowing diachronic change through United States history to be considered. Samples represented contemporary and historic African Americans and European Americans and their West African and European ancestral populations (N = 1445). Modified Mahalanobis' D² and Mean Measure of Divergence statistics examined how biological distances change through time among the samples. Results suggest the social acceptance for mating between descendents of Western Europeans and Eastern and Southern European migrants to the United States produced relatively rapid gene flow between the groups. Although African Americans have been in the United States much longer than most Eastern and Southern Europeans, social barriers have been historically stronger between them and European Americans. These results indicate that gene flow is in part shaped by cultural factors such as folk taxonomies of race, and have implications for understanding contemporary human variation, relationships among prehistoric populations, and forensic anthropology. Am J Phys Anthropol 2009. © 2009 Wiley-Liss, Inc.     

Use of traditional and modern health services by Laotian refugees.

Although refugee health care emerged as a special interest in the United States following the influx of almost a million Southeast Asians since 1975, few studies have been done of the influence of refugee traditions on the use of Western medical services. The illness patterns, medical beliefs, and health care behavior of a Southeast Asian refugee group, the Mien from Laos are described in this study. A cohort of 119 Mien refugees living in Richmond, California, was observed for a 6-month period. In-home interviews were undertaken about all episodes of ill health, including treatment and health care decisions. This study shows that the Mien integrate traditional healing beliefs and practices with the use of American health services. Such findings are important because the increasing cultural diversity in the United States, particularly in Western states, necessitates that health care professionals understand the importance of cultural factors for access to and the use of health care by all patients including refugees and other immigrant groups.     

Death and the Oldest Old: Attitudes and Preferences for End-of-Life Care - Qualitative Research within a Population-Based Cohort Study

IntroductionIncreasing longevity means more people will be dying in very old age, but little is known about the preferences of the ‘oldest old’ regarding their care at the end of life.AimsTo understand very old people’s preferences regarding care towards the end of life and attitudes towards dying, to inform policy and practice.MethodsQualitative data collection for n = 42 population-based cohort study participants aged 95–101 (88% women, 42% in long-term-care): topic-guided interviews with n = 33 participants and n = 39 proxy informants, most with both (n = 30: 4 jointly + separate interviews for 26 dyads).ResultsDeath was a part of life: these very old people mainly live day-to-day. Most were ready to die, reflecting their concerns regarding quality of life, being a nuisance, having nothing to live for and having lived long enough. Contrasting views were rare exceptions but voiced firmly. Most were not worried about death itself, but concerned more about the dying process and impacts on those left behind; a peaceful and pain-free death was a common ideal. Attitudes ranged from not wanting to think about death, through accepting its inevitable approach to longing for its release. Preferring to be made comfortable rather than have life-saving treatment if seriously ill, and wishing to avoid hospital, were commonly expressed views. There was little or no future planning, some consciously choosing not to. Uncertainty hampered end-of-life planning even when death was expected soon. Some stressed circumstances, such as severe dependency and others’ likely decision-making roles, would influence choices. Carers found these issues harder to raise but felt they would know their older relatives’ preferences, usually palliative care, although we found two discrepant views.ConclusionsThis study’s rare data show ≥95-year-olds are willing to discuss dying and end-of-life care but seldom do. Formal documentation of wishes is extremely rare and may not be welcome. Although being “ready to die” and preferring a palliative approach predominated, these preferences cannot be assumed.     

Should living wills be legalized?

Living wills allow patients to state their wish to die and not be kept alive through the use of medications, artificial means or "heroic" measures. They have been made legal documents in 38 states in the United States. Living wills permit advance expression of a patient''s wishes, promote effective communication and demonstrate respect for the patient as a person. Problems with legal recognition of such wills include the need for agreement on fundamental terms, possible restriction of patients'' rights, limitation of options in decision-making and possible negative effects on the physician-patient relationship. Before legislation is enacted, public and professional attitudes toward the care of terminally ill patients should be assessed. All health care professionals should receive better education in this area, and palliative care services should be made more widely available. Only if these measures fail should living wills be made legal documents in Canada.     

The health status of minority populations in the United States.

There is increasing national recognition that while our nation''s health care system is the most expensive in the world, the health care status of Americans overall ranks poorly compared with other Western, industrialized nations. In the United States we tend to look at minority-majority variations of health status, as well as the variations of many other indicators by race or ethnicity, because race and ethnicity are particularly important components of our society. In general, health status indicators of minority Americans are worse than those of whites. In some locales, death rates of minority Americans are comparable to those of Third World nations. At the same time, minority Americans make up a rapidly increasing proportion of the nation''s population and work force. Our baseline national data on some minority groups, however, currently are inadequate to detect shifts in health status. Finally, the rapidly expanding problem of the acquired immunodeficiency syndrome among some minority populations provides both an imperative and an opportunity to learn how model prevention programs should be designed and executed.     

End of Life Care for Patients Dying of Stroke: A Comparative Registry Study of Stroke and Cancer

Background

Although stroke is a significant public health challenge and the need for palliative care has been emphasized for these patients, there is limited data on end-of-life care for patients dying from stroke.

Objective

To study the end-of-life care during the last week of life for patients who had died of stroke in terms of registered symptom, symptom management, and communication, in comparison with patients who had died of cancer.

Design

This study is a retrospective, comparative registry study.

Methods

A retrospective comparative registry study was performed using data from a Swedish national quality register for end-of-life care based on WHO`s definition of Palliative care. Data from 1626 patients who had died of stroke were compared with data from 1626 patients who had died of cancer. Binary logistic analyses were used to calculate odds ratios, with 95% CI.

Results

Compared to patients who was dying of cancer, the patients who was dying of stroke had a significantly higher prevalence of having death rattles registered, but a significantly lower prevalence of, nausea, confusion, dyspnea, anxiety, and pain. In addition, the stroke group had significantly lower odds ratios for health care staff not to know whether all these six symptoms were present or not. Patients who was dying of stroke had significantly lower odds ratio of having informative communication from a physician about the transition to end-of-life care and of their family members being offered bereavement follow-up.

Conclusions

The results indicate on differences in end-of-life care between patients dying of stroke and those dying from cancer. To improve the end-of-life care in clinical practice and ensure it has consistent quality, irrespective of diagnosis, education and implementation of palliative care principles are necessary.     

On the Taxonomy and Morphology of the Pine Wood Nematode, Bursaphelenchus xylophilus (Steiner &Buhrer 1934) Nickle 1970

During the past 3 yr, nematologists in the United States have found specimens of Bursaphelenchus sp. in the wood of dead and dying pine trees. This nematode-host association resembles a similar interaction reported from Japan where pine trees are being killed by the pine wood nematode. This taxonomic research was conducted to determine if the Japanese pine wood nematode and similar populations in the United States are of the same species. Based upon typical morphological characters of original specimens of Bursaphelenchus xylophilus (Steiner and Buhrer 1934) Nickle 1970 that were rediscovered in the USDA Nematode Collection and genetic crosses among the Japanese and American nematode populations, it was concluded that they are all the same species, B. xylophilus.     

Outcomes of written living wills in Japan--a survey of the deceased ones' families

A study was recently done to investigate the outcomes of written living wills in Japan, which, unlike the United States, does not legally recognize advance directives. This study collected demographic information and predictors of living will use among families and guardians who used the living will form provided by the Japan Society for Dying with Dignity. According to the results of the study, affliction with cancer and death in a hospital was the best predictor of written living will use. Research on physicians' treatment limitation and withdrawal behaviors in the clinical setting is needed to better understand the actual impact of living wills. Such research can provide better understanding of where boundaries of self-determination are drawn and how to respect autonomy in Japan.     

Os intermetatarseum: A heritable accessory bone of the human foot

The os intermetatarseum is a relatively common accessory bone of the human foot located at the tarsometatarsal border between the first and second metatarsals. It can occur as an independent ossicle or as an osseous spur projecting from the proximal ends of the first two metatarsals, or the distal end of the first cuneiform. To determine the frequency of this congenital defect in native North American groups and East Asians from Japan, the skeletons of 846 Native Americans and 125 modern Japanese and Ainu were examined for the presence of the os intermetatarseum. The North American skeletons are from archaeological sites in various parts of Canada and the United States, including the Arctic coast, the Subarctic, the Aleutian Islands, the Northern Plains, the Illinois River area, and the Southwest. Overall frequencies ranged from no occurrence among the Arctic samples to 8% of individuals from Pecos Pueblo. Second metatarsal spurs occurred in particularly high frequencies among American Indians, whereas the East Asians were only found to have os intermetatarseums associated with the first cuneiform. Because pedigrees have shown the os intermetatarseum to be an inherited defect, its high frequency among some Native Americans may be due, in part, to a higher degree of genetic relatedness among the individuals in the North American samples than among the relatively modern East Asians. Am J Phys Anthropol 107:199–209, 1998. © 1998 Wiley-Liss, Inc.     

Does the community want devolved authority? Results of deliberative polling in Ontario.

OBJECTIVE: To obtain and contrast the informed opinions of people in five decision-making groups that could have a role in devolved governance of health care and social services. DESIGN: Deliberative polling. SETTING: Three rural and three urban communities selected from the 32 areas covered by a district health council in Ontario. PARTICIPANTS: A total of 280 citizens from five potential decision-making groups: randomly selected citizens, attendees at town-hall meetings, appointees to district health councils, elected officials and experts in health care and social services. INTERVENTION: Participants'' opinions were polled during 29 structured 2-hour meetings. MAIN OUTCOME MEASURES: Participants'' opinions on their personal willingness and their group''s suitability to be involved in devolved decision making, desired type of decision-making involvement, information preferences, preferred areas of decision-making involvement and preferred composition of decision-making bodies. RESULTS: Mean attendance at each meeting was 9.6 citizens. Although there were some significant differences in opinion among the five potential decision-making groups, there were few differences among citizens from different geographic areas. A total of 189 (72%) of people polled were personally willing to take on a role involving responsibility for overall decision-making, but far fewer thought that their group was suited to taking on responsibility (30%) or a consulting role (55%). Elected officials were the most willing (85% personally willing, 50% thought their group was suitable) and randomly selected citizens the least willing (60% personally willing, 17% thought their group was suitable) to take responsibility for overall decision making. Most citizens polled indicated less interest in involvement in specific types of decisions, except for planning and setting priorities, than in overall decision making. Only 24 participants (9%) rated their own group as suitable to take responsibility for raising revenue, 91 (33%) deemed their group suited to distribution of funds and 108 (39%) felt their group was suitable for management of services. People in all five groups ranked health care needs (mean rank 1.5 out of four options) as the most important and preferences (mean rank 3.6) as the least important information. They rated a combination body involving several community groups as the most suitable overall decision-making body (8.8 on 10-point scale). Participants favoured the representation of elected officials, the provincial government and experts on combination bodies responsible for the specific types of decisions. Overall, as the complexity of devolved decision making became clear, participants tended to assign authority to traditional decision makers such as elected officials, experts and the provincial government, but also favoured a consulting role for attendees at town-hall meetings (i.e., interested citizens). CONCLUSION: There are significant differences among groups in the community in their willingness to be involved, desired roles and representation in devolved decision making on health care and social services in Ontario.     

Two Decades of Research on Euthanasia from the Netherlands. What Have We Learnt and What Questions Remain?

Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been shown that the majority of physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. In 2005, eighty percent of the euthanasia cases were reported to the review committees. Thus, the transparency envisaged by the Act still does not extend to all cases. Unreported cases almost all involve the use of opioids, and are not considered to be euthanasia by physicians. More education and debate is needed to disentangle in these situations which acts should be regarded as euthanasia and which should not. Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is nowadays widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life.     

Levels of Intervention: How Are They Used in Quebec Hospitals?

In order to promote better practices and communication around end-of-life decision-making, several Canadian hospitals in the province of Quebec have developed a tool called “Levels of Intervention” (LOI). No work to date has been published demonstrating improvement since these forms were implemented. The purpose of the present study was to obtain information about the use of LOI forms across Quebec hospitals and to identify gaps in practice as well as areas for improvement. A retrospective study was undertaken of 299 charts of patients who had died in three Quebec hospitals with a LOI ordered. Results were analysed through a principlism ethical framework. High compliance with the level of intervention ordered at the time of death was recorded, as well as high involvement of patient and/or family, demonstrating the efficiency of LOI in promoting respect for autonomy. Other results show delays in end-of-life care discussions in the course of the hospitalization. Only a small proportion of patients who died had a palliative care consultation, which may reflect equity issues in access to care. This study highlights the importance of the LOI in Quebec and the role it is playing in respect for end-of-life preferences as well as in the involvement of patients and families in the decision-making process. Training specific to end-of-life decision-making conversations would help support the LOI form’s use, as would developing provincial or national guidelines on the use of LOI to standardize organizational policies and practice around end-of-life care.     

Infection with the human T-lymphotropic virus type I. A review for clinicians.

The human T-cell lymphotropic virus type I (HTLV-I) is the first retrovirus identified in humans. It has been responsible for a number of clinical syndromes, most notably adult T-cell leukemia or lymphoma and tropical spastic paraparesis. In the United States, infection with this virus is most frequently found in specific subsets of our population, particularly in those who live in the southeastern states, have southern Japanese ancestry, or share intravenous drug paraphernalia. Understanding the epidemiology and clinical manifestations of this virus is necessary to properly diagnose and care for patients with HTLV-I infection.     

Continuing medical education about AIDS--a needs assessment.

The incidence of the acquired immunodeficiency syndrome (AIDS) among Latinos and African Americans nationally and in Los Angeles has risen substantially. No data exist to indicate which physicians (or groups of physicians) provide care to these groups, however. To better plan AIDS educational programs, efforts were made to identify those physicians whose offices were located in areas with high proportions of nonwhites. Many physicians in these areas--30% of all office-based primary care physicians in Los Angeles--were found to be graduates of international medical schools. A survey of a stratified random sample of international medical graduates revealed that compared with a random sample of United States medical graduates, they had a greater proportion of nonwhite patients, often of an ethnicity similar to theirs; practiced in areas with a greater proportion of Asians and lower family incomes; had fewer patients infected with the immunodeficiency virus (HIV) in their practices; and were more avoidant of such patients. As the incidence of HIV infection increases among minority groups, means need to be developed to ensure their access to counseling and screening, as well as treatment with the latest available agents. Options include imaginative and engaging approaches to continuing medical education for all physicians and the creation of separate public sector infrastructures to meet the HIV-related needs of these communities.     

Medical practice guidelines: lessons from the United States.

Clinical guidelines, or protocols, have been devised by many different groups, often with differing aims. Some aim to reduce variations in care by using guidelines, while others seek to improve outcomes. Guidelines have long been used in the United States to try to control the behaviour of the medical profession--and the cost of health care. The "effectiveness initiative," run by the Agency for Health Care Policy and Research spawned much activity among other groups, including the American Medical Association and the American College of Physicians. The experience of the Americans in analysing data to gauge effectiveness and then in disseminating good practice may help British moves in this direction. In particular, it is often hard to get guidelines adopted in practice; doctors have to be exposed to the same message in different forms. Also guidelines must not be unrealistic: those devised by senior doctors away from the realities of day to day practice are likely to fail.