Introduction Two ethical challenges of nursing home nurses during the COVID-19 pandemic in Sweden are discussed in this paper. Background Historically, the nurse’s primary concern is for the person who is ill, which is the core of nurses’ moral responsibility and identity. In Sweden, person-centered care is generally deemed important in nursing older nursing home residents. Objective To chart moral responsibilities of nursing home nurses in two cases involving older residents during the COVID-19 pandemic in (...) Sweden. Methods We used Margaret Urban Walker’s framework for moral responsibilities and the International Council of Nurses (ICN) code of ethics for nurses (2021) for our normative analysis. Ethical considerations Written and verbal consent was obtained before the interviews, and information was given that participation was entirely voluntary and possible to cancel at any time before the work was published. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to this research project (Dnr. 2020-05649). Findings Case #1: a palliative older nursing home resident who was coercively tested for COVID-19, and case #2: a COVID-19–infected resident with dementia who was isolated using sedation. The decision that was finally made in the respective case was analyzed in the light of either consequentialist/utilitarian or non-consequentialist/deontological reasons. Discussion Empowerment of nurses as moral agents is required for the application of practical wisdom in the balancing of different care relationships (responsibilities), moral identities (professional virtues), and competing moral values. This requires resources and opens possibilities for profound ethical reflection in nursing education and at work. Conclusion During the COVID-19 pandemic, the moral and professional responsibility of nursing home nurses to deliver person-centered care was sometimes problematically abandoned in favor of a more utilitarian manner of ethical decision-making. (shrink)

Background: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss Aim: The aim of this study was to explore informal caregivers’ perceptions of sources related (...) to dignity and dignity loss in end-of-life of older home-dwelling women with incurable cancer. Research design and method: The study was founded upon Gadamer’s philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings. Ethical consideration: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study. Results: Three main sources important in preserving the older women’s dignity were identified: maintaining one’s self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object. Discussion and final considerations: On the individual level, the opportunity to maintain one’s self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women’s dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women’s living space, these perspectives should be emphasized in healthcare professionals’ educational training and in the municipal end-of-life care of these patients. (shrink)

There has been a radical turn towards ideals of patient autonomy and person-centred care, and away from historically entrenched forms of medical paternalism, in the last 50 years of nursing practice. However, along the way, some shades of grey between the areas of ideal patient participation and of outright patient non-participation have been missed. The current article constitutes an exploratory proof-of-concept study of the real-world traction of a distinction-straddling concept of ‘constrained participation’ and its two sub-concepts (...) of ‘fought-for participation’ and ‘forced-to participation’. In order to concretise these additions to the conceptual terrain of person-centred participation and its anti-theses, we apply them to themes in the care of vulnerable older adults. In the final section, we close by eliciting some characterological, educational and clinical implications of adding these new tools also to the conceptual repertoire of nursing practice and education. (shrink)

Background: Dignity is a multidimensional construct that includes perception, knowledge, and emotions related to competence or respect. Attitudes to aging are a comprehensive personal view of the experience of aging over the course of life, which can be influenced by various factors, such as the levels of health and self-sufficiency and social, psychological, or demographic factors. Aim: The purpose of this study was to explore the attitudes to aging of home-dwelling and inpatient older adults, and whether dignity and other (...) selected factors belong among the predictors influencing attitudes to aging in these two different groups of older adults. Research design: Cross-sectional study using a set of questionnaires: Patient Dignity Inventory, Attitudes to Aging Questionnaire, and Barthel Index. Pearson and Spearman correlation analyses and multivariable linear regression were used for statistical processing. Participants and research context: 233 inpatients and 237 home-dwelling older adults participated in the research in two regions of the Czech Republic. Ethical considerations: Institutional Review Board approval was received from the authors’ university. Findings: The inpatients had more negative attitudes to aging (M = 74.9±10.9; P <0.0001). The predictors of their attitudes to aging were gender and dignity. Women ( β = −2.969, P = 0.045) and inpatients with poor dignity ratings ( β = −0.332, P <0.0001) had more negative attitudes to aging. The predictors for home-dwelling older adults were education, living arrangement, and dignity. More negative attitudes to aging were found in older adults with lower levels of education ( β = 2.716, P = 0.007) who lived alone ( β = 2.163, P = 0.046) and rated their dignity as low ( β = −0.325, P <0.0001). Discussion and Conclusions: The results of this study add to the understanding that a sense of dignity is an important predictor of attitudes to aging for both home-dwelling older adults and inpatients. (shrink)

Purpose. The purpose of this paper is to investigate the anthropological and socio-philosophical dimensions of human existence of the older age group given the challenges of pandemic threats caused by COVID-19. To this end, it is planned to solve a number of tasks, among which one should distinguish the following: 1) to investigate the manifestations of age discrimination in the context of the social and labor areas of human existence; 2) to focus on the asymmetry of the behavior (...) of society and the state relative to persons of the older age group in the field of healthcare in the context of a pandemic crisis; 3) to represent the anthropological features of changes in the socialization and activity of older people under the current conditions of globalization-pandemic challenges. Theoretical basis. Despite such a broad representation of the age-related issue in public relations, there are still no practical guarantees that would apply to discriminatory aspects of older age groups in various areas of their manifestation. The synergistic evolution of social reality requires substantive analysis of the issue under the current conditions for the transformation of social life, which is affected by globalization crises caused by the pandemic threats of COVID-19. Originality. The stereotypical assumptions underlying legal policy and established social relations are based solely on the application of chronological age. The novelty is in justifying an individual approach to the elderly through the personification of the personal characteristics of a person. The study of anthropological and socio-philosophical dimensions of the existence of a person of the older age group in the face of the challenges of pandemic threats caused by COVID-19 has made it possible to analyze the destructive nature of age discrimination in the context of the social and labor areas of human existence. As well as focus on the asymmetry of the behavior of society and the state in relation to these persons in the field of health care, and emphasize the anthropological features of changes in the socialization and human activity under the current conditions of globalization-pandemic challenges. Conclusions. External threats to human existence call for special attention to the implementation and protection of human rights, freedoms, individual freedoms, and identity. Pandemic threats have transformed all dimensions of human existence, especially for those groups of society that are less socially protected. The pandemic crisis has created additional grounds for discrimination against older people in various areas of human existence. Equalization of persons by age without personifying the personal characteristics of an individual is discrimination on an age basis, which violates the principles of democracy and humanism in the society, leads to stigmatization of the person, is the cause of the anthropological crisis of a person. (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent (...) and informed consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

This guide accompanies the following article(s): ‘Full Disclosure of the “Raw Data” of Research on Humans: Citizens’ Rights, Product Manufacturer’s Obligations and the Quality of the Scientific Database.’Philosophy Compass 6/2 (2011): 90–99. doi: 10.1111/j.1747‐9991.2010.00376.x Author’s Introduction Securing consent (and informed consent) from patients and research study participants is a key concern in patient care and research on humans. Yet, the legal doctrines of consent and informed consent differ in their applications. In patient care, the judicial doctrines of consent (...) and informed consent are disclosure doctrines based on the obligation of physicians to inform their patients of the following types of information: the nature of the procedure the physician is recommending in the patent’s care (P), the alternatives to the physician‐recommendation (A), and the risks of procedure and its alternatives (R). In addition, the physician must provide truthful answers to the patient’s questions (Q) to the best of the physician’s abilities. In research on humans, the onus of disclosure by study sponsors and principal investigators is much greater than in patient care precisely because the purpose of research is not patient care. The purpose of research is the identification and development of new generalizable knowledge. Thus, participation in a research study or trial may not benefit the study volunteer at all. In addition, the participant may carry a heavy risk burden in relationship to any testing of a newly designed drug or device as part of their experiences in the research study. Presently, despite the risks borne by the research study participant, the raw data collected from volunteers in research trials are treated by courts as if they were the private property of the study sponsor rather than generally owed to the public as would be expected by an effort like research participation aimed at contributing to the development of generalizable knowledge. This paper reviews the obligations that study sponsors owe to their study participants based on the very definition of research as a systematic activity whose purpose is to develop generalizable knowledge to help all humans. Author Recommends Court cases Canterbury v. Spence, United States Court of Appeals, District of Columbia Circuit 464 F.2d 772 (1972). (Federal appellate decision heard in the District of Columbia, USA) Reibl v. Hughes, 2 S.C.R. 880 (1980). (Supreme Court of Canada) Rogers v. Whitaker, 175 C.L. R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Canterbury v. Spence is the landmark Federal informed consent case in the United States heard in the District of Columbia. In this case, Judge Spottswood Robinson articulated the reasonable person standard of informed consent. This standard was subsequently adopted by the Supreme Court of Canada (Reibl v. Hughes, 2 S.C.R. 880 (1980)) and the High Court of Australia (Rogers v. Whitaker, 175 C.L. R. 479 (1992)). The House of Lords rejected the reasonable person standard in England in Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985). Book Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. This book is a detailed guide for the review of scientific and ethical aspects of research on humans contained in the research study protocols and research informed consent forms which need to be submitted by study sponsors and principal investigators to institutional review boards (IRBs) for IRB review before a research study can receive approval to be conducted within a human study population in those institutions over which the IRB has authority. It also presents basic definitions in the area of research on humans and basic approaches to help conduct a deep review of the underlying scientific and ethical issues that are present within a research study protocol and its accompanying research informed consent form. Report National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). This U.S. National Commission in the Belmont Report argued for the necessity of a reasonable volunteer standard in research on humans in the United States. Arguing that the professional standard and the reasonable person standard of consent and informed consent were insufficient to base a disclosure standard in research on humans, this National Commission developed the reasonable volunteer standard where a study participant is to be approached in research informed consent with that information that a reasonable volunteer would want to know. Online Materials Belmont Report: Syllabus Topics for Lecture and Discussion Week I: Introduction and Overview Readings: Rogers v. Whitaker, 175 C.L.R. 479 (1992). (High Court of Australia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week II: The Different Standards of Consent and Informed Consent Readings: Canterbury v. Spence, 464 F.2d 772 (1972). (Federal appellate opinion heard in the District of Columbia) Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital and Others. 1 A.C. 871 (1985) (House of Lords) Week III: Definition of Research Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 2 and 3) Week IV: How to Review a Research Study Protocol and Research Informed Consent Form Reading: Mazur, Dennis J. The Science and Ethics of Research on Humans. Baltimore, MD: Johns Hopkins University Press, 2007. (Especially Chapters 4–6, 10, and 12–14) Week V: Obligations in Research of Humans Versus Patient Care Reading: National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: Ethical Guidelines for the Protection of Human Subjects of Research. Washington, DC: DHEW Publications, 1978 (78‐0012). Focus Questions • How do the judicial doctrines of consent in England and Australia compare to the judicial doctrines of informed consent in the United States and Canada? • How does a professional standard of disclosure differ from a reasonable person standard of disclosure? • What is the definition of research? • How is a research study (study proposal and research informed consent form) reviewed from scientific and ethical bases for considerations of approval by an IRB? • How do the obligations of a study sponsor, a principal investigator, and a research team conducting a research trial on human study participants differ from the obligations of a physician caring for a patient? • Should all raw data of research derived from humans be made available to the public for use in developing generalizable knowledge to help others, or should raw data be considered the private property of the study sponsors (for example, prescription drug manufacturers), who fund the research trials? Seminar/project Idea Draw a timeline of the development of the basic concepts of consent and informed consent in patient care and in patient research. On this timeline, first place the dates of the key court cases in England, the United States, Canada, and Australia on consent and informed consent. Then place the date of the development of the Belmont Report. Why do differences exist between these four countries in terms of the legal requirements of informedness of a patient (in medical care) and a study participant (in medical research)? What roles if any do the concepts of self‐determination and self‐decision have in consent and informed consent in patient care and in informed consent in research on humans among the four countries of interest? What are the realities of research on human participants that require a new standard of informed consent, the reasonable volunteer standard, to be developed beyond the two standards in patient care, the professional standard, and the reasonable person standard? Counterpoint Arguments The following are counterpoint arguments that need to be appreciated to more fully understand the concepts that impact the thesis that ‘raw data’ should be open to the public to allow the opportunity of checking of the results of its associated scientific paper and for further analysis. De‐Identified (Anonymized) Raw Data A current approach to identifying (anonymizinig) raw data is based on the Health Insurance Portability and Accountability Act (HIPAA) of 1996 (P.L.104‐191). HIPAA was enacted by the U.S. Congress in 1996 to keep a person’s medical information private. In a research study, a person’s private medical information can become research data. HIPAA’s Privacy Rule allows a covered entity to de‐identify data by removing all 18 elements that could be used to identify the individual or the individual’s relatives, employers, or household members; these elements are enumerated in the Privacy Rule. The covered entity must also have no actual knowledge that the remaining information could be used alone or in combination with other information to identify the individual who is the subject of the information. Under this method, the identifiers that must be removed are the following: 1 Names. 2 All geographic subdivisions smaller than a state, including street address, city, county, precinct, ZIP Code, and their equivalent geographical codes, except for the initial three digits of a ZIP Code if, according to the current publicly available data from the Bureau of the Census: 2a. The geographic unit formed by combining all ZIP Codes with the same three initial digits contains more than 20,000 people. 2b. The initial three digits of a ZIP Code for all such geographic units containing 20,000 or fewer people are changed to 000. 3 All elements of dates (except year) for dates directly related to an individual, including birth date, admission date, discharge date, and date of death, and all ages over 89 and all elements of dates (including year) indicative of such age, except that such ages and elements may be aggregated into a single category of age 90 or older. 4 Telephone numbers. 5 Facsimile numbers. 6 Electronic mail addresses. 7 Social security numbers. 8 Medical record numbers. 9 Health plan beneficiary numbers. 10 Account numbers. 11 Certificate/license numbers. 12 Vehicle identifiers and serial numbers, including license plate numbers. 13 Device identifiers and serial numbers. 14 Web universal resource locators (URLs). 15 Internet protocol (IP) address numbers. 16 Biometric identifiers, including fingerprints and voiceprints. 17 Full‐face photographic images and any comparable images. 18 Any other unique identifying number, characteristic, or code, unless otherwise permitted by the Privacy Rule for re‐identification. Even though ‘raw data’ can be de‐identified (anonymized) so that there is no way to trace back the data to the study participant from which it was drawn, there are still questions whether the ‘de‐identified raw data’ can be given to other researchers or made public without the original study participant’s approval. It may be the case that this approval could be done at the start of any research study where the individual considering study participation would be counseled on what the process of de‐identification consists of and would be asked whether the participant would allow use of the data by other researchers or made available to the public in a de‐identified state. However, there may be questions of the study participants as to whether the data are truly de‐identified and untraceable back to the study participant since the participant would not be able to see the process actually being carried out in detail in all relevant circumstances. Using Raw Data in Context Simply being in possession of raw data is never enough to build on that data from a research perspective. Researchers need to understand the context of the scientific research study in which the data were collected. This research context includes (but is not limited to): (i) the scientific hypothesis of the research study, (ii) the inclusion and exclusion criteria selected by the research designers of the study to determine which study participants were included and which were excluded from the study, (iii) the methods used to collect the data and possibilities of errors in the data collection processes, and (iv) answers to questions regarding whether any data were excluded from the study data and why these data were excluded. Ownership Rights Over Data There are ownership rights over data. Ownership rights include court decision making related to the question which parties are to be considered as the owners of the data. Possible owners here include (but are not limited to) (i) the study sponsor whose only role was to fund that study, (ii) the principal investigator(s) who developed the scientific hypothesis, and (iii) individual study participants through special contracts made by individual participants who negotiate such contracts with study sponsors and principal investigators to share in the ownership of data. Examples of such data are participant sources of unique gene lines or unique cell lines to be used in future research. Objections to Data Sharing Finally, individual researchers may simply object to sharing data. A researcher’s arguments here may be simply stating that he or she has a right to fully analyze the data since the collection of the data was the researchers’ idea in the first place. These researchers may argue that they have the right to mine the data as fully as they can before deciding to make the data open to the public for others to analyze. Works Cited 1 Kaiser, J. ‘Making Clinical Data Widely Available.’Science 322.5899 (10 Oct. 2008): 217–8. 2 de Lusignan, S., J.F. Metsemakers, P. Houwink, V. Gunnarsdottir, and J. van der Lei. ‘Routinely Collected General Practice Data: Goldmines for Research? A Report of the European Federation for Medical Informatics Primary Care Informatics Working Group (EFMI PCIWG) from MIE2006, Maastricht, The Netherlands.’Informatics in Primary Care 14.3 (2006): 203–9. 3 Sim, I. ‘Human Studies Database Project’, CTSA Data Repositories Symposium (17 Oct. 2008). 23 Nov. 2010. 4 Sim, I., C.G. Chute, H. Lehmann, R. Nagarajan, M. Nahm, and R.H. Scheuermann. ‘Keeping Raw Data in Context.’Science 323.5915 (6 Feb. 2009): 713. 5 U.S. Department of Health and Human Services, National Institutes of Health, HIPAA Privacy Rule, Information for Researchers. 13 Nov. 2010. 6 Wilczynski, N.L., R.B. Haynes, and Hedges Team. ‘EMBASE Search Strategies for Identifying Methodologically Sound Diagnostic Studies for Use by Clinicians and Researchers.’BMC Medicine 29.3 (March 2005): 7. (shrink)

Perhaps the change of title says it all. This is the revised edition of Agich’s Autonomy and Long Term Care, which was itself a seminal work. The new title gives us the main drift: if autonomy is important in old age, so too is dependence. Indeed, in the actual world in which Agich is keen to locate his study, autonomy and dependence intermingle as inescapable features of old age for real people. As he says: “Maintaining a sense of autonomous (...) wellbeing is consistent with dependencies on medication or professional care if those dependencies help to maintain a more basic sense of functional integrity in those areas of life that individuals value” .The present book retains and renews its standing as a first rate work in the field of philosophical medical ethics. It aims “to sketch a framework for respecting autonomy in long term care”, rather than to work out practical guidelines . Nevertheless, its strength lies in Agich’s ability to move from the real world of often dependent older people to the philosophical underpinnings of our thinking about how we care for them. In so doing, Agich mounts a powerful attack on what he sees as a prevailing tendency in bioethics. It is the tendency to define autonomy “primarily in terms of a concept of human persons as rational, independent agents and decision makers, who are assumed to be competent and who can be understood without serious reference to society or history” . As he says: “Influenced by liberal theory, autonomy is often treated in bioethics as a concept that primarily applies to the public realm …. (shrink)

Definition of the problem Obesity is a burgeoning challenge for healthcare systems worldwide. In times of demographic change, it also affects an increasing number of older persons, presenting substantial challenges to delivering health and nursing care in both acute and long-term care (LTC) settings. So far, a detailed analysis of the diverse group of 65+ in this field is missing, particularly in the area of LTC. The needs of neither care recipients, nor those of nurses and (...) institutions are monitored, analyzed, or systematically evaluated. Moreover, ethical implications of professional care for older persons with obesity have not yet been discussed in research and policy. Arguments We argue that a needs-based approach is appropriate to address these ethical complexities. We further argue that a comprehensive mapping of the ethical terrain is best from an interdisciplinary and mixed methods perspective. For this, we conduct a scoping review to synthesize the state-of-the-art in both the healthcare and LTC settings; and we focus on challenges reported in case studies from professional care settings in European and North American institutions. Conclusion Our findings point to a lack of research on ethical issues related to the LTC needs of older persons living with obesity and the challenges faced by their professional carers. From the limited number of (case) studies that can be found, however, a series of ethical concerns emerge that have direct import for access, utilization, and quality of care. Accordingly, a new research agenda is needed to inform an ethical approach for policy and practice. It must be rooted in a concern for both care recipients and caregivers in mixed methods studies. Future research should provide criteria for balancing needs, allocating resources and developing practical solutions for people who are confronted with multiple stigma. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Resilience and the Narratives of Parents of Adults with Autism Spectrum DisordersNabil Hassan El-GhorouryThe prevalence of autism spectrum disorders (ASDs) is on the rise; the most recent report from the Autism and Developmental Disabilities Monitoring Network (2012) indicated a prevalence of ASDs of one in 88 children. This was a 78% increase from reported prevalence rates in 2002, when the rate was one in 150. Major health organizations have (...) been emphasizing the importance of early identification (Johnson, Myers, & Council on Children with Disabilities, 2007) to increase access to early intervention services, which are most effective when implemented before age three (Rogers & Vismara, 2008).The bulk of autism research has been focused on children, particularly young children. Given the growing identification and prevalence of ASDs, there will be more and more adolescents and adults with ASDs in the near and long term future. This issue of Narrative Inquiries in Bioethics is important because of its focus on an underrepresented area in the literature. The constraints of current health care delivery systems do not allow for providers to spend significant amounts of time with their patients. Furthermore, hearing first person narratives can be valuable by informing health care professionals about the experiences that parents (and by extension, the individual with an ASD) have experienced.As a licensed clinical psychologist with over two decades of experience with children, adolescents, and adults with ASDs in a variety of settings, I have a professional perspective on autism. As the older brother of Omar, a 38–year–old adult male with autistic disorder, I also have a lifetime of personal experiences of autism. As long as I can remember, I have had a brother with autism. I hope this unique perspective as both a behavioral health care provider and a family member of an adult with an ASD allows me to comment on these narratives in a thoughtful manner.Seeing Beyond Autism: Multiple IdentitiesMany parents commented on how their child was more than just autism or Asperger’s; they reflected on the strengths, unique experiences, and perspectives of their child. The narratives are rich in their desire to see the whole being of their children. Anonymous One writes:Another thing, and I think every parent will agree with this—teachers, school staff, health care industry staff, doctors and every one that comes into contact with an ASD individual—take the time to get to know them. It may be difficult and some may appear non–caring and rude. You must overlook this and look to the person underneath. They are great people. They have been through stuff and it means so much to them. Like I said—parents, you know this. Please remember it when times get tough. [End Page 189]Mark Osteen wrote about his son Cameron as they were making the decision to place their son in a residential placement: “I felt proud. It was like he was being recruited for college. And I am just as proud of him, and love him just as much, as if he were. What I hate is talking only about his ‘disability.’ I hope they see his good qualities. How smart he is. How funny he is. How charming he is. How strong he is.”Understanding the multiple identities of individuals with ASDs is important for parents so that they are not solely focused on the autism diagnosis. The talents and skills of the young adults described are remarkable. Anonymous One’s son David became a computer engineer at 13, reportedly “he was the youngest person in the United States to do so at such a young age.” Lori Centineo’s son Nathaniel is a poet, a rock climber, and skilled at sailing. Virginia Clapp’s son Nathaniel is a “chess genius”, a talented juggler “with the ability to juggle seven balls, which he told me is ‘insanity in a nutshell’,” and an origami expert. David McDonald’s nephew grew from a teenager who spoke only 30 words to speaking thousands of words and ultimately becoming a world traveler. Anonymous Four’s son Sam is “practically an expert” in earth sciences.Seeing beyond the autism is not always easy. Given the serious challenges... (shrink)

continent. 2.1 (2012): 22–28. Jeroen Mettes burst onto the Dutch poetry scene twice. First, in 2005, when he became a strong presence on the nascent Dutch poetry blogosphere overnight as he embarked on his critical project Dichtersalfabet (Poet’s Alphabet). And again in 2011, when to great critical acclaim (and some bafflement) his complete writings were published – almost five years after his far too early death. 2005 was the year in which Dutch poetry blogging exploded. That year saw the foundation (...) of the influential, polemical, and populistically inclined weblog De Contrabas (The Double Bass), which became a strong force for internet poetry in Dutch in the years to follow. In the summer of that year, a lively debate raged in the aftermath of Bas Belleman’s article “ Doet poëzie er nu eindelijk toe ?” (“Does poetry finally matter now?”), on a blog specifically devoted to this question. Up to that point, the poetical debate in the Netherlands had largely been confined to literary reviews (which were often subsidized), having become mostly marginalized in more mainstream media, where poetry could be covered by only a small number of so-called authorities. As a result, literary debate had acquired a rather placid quality. Though a variety of camps with different aesthetics could be discerned, most poetical positions shared a general acceptance of poetry as a form of art somewhat apart from fundamental political concerns. Late modernists would pursue subtlety and density of reference. Others would insist poetry was best understood as a form of entertainment that should ideally be accessible and work well on the stage. Still others would insist that poetry is mostly a play with forms. Linguistically disruptive strategies were valued highly by some, but mostly for their aesthetic effect. Values of disinterested playfulness reigned supreme everywhere. Any idea that poetry could be a field in which one confronts politics and the world was decidedly marginal. This led to a climate in which most attempts at polemics were DOA, often based on far too superficial positioning and analysis. The greatest polemical debates were revolving around the question of whether poetry should be difficult or easy, with both camps defining their ideas of difficulty and accessibility in ways that were so utterly shallow as to make the entire point moot. Debates were performed, rather than engaged with. It was a postmodern hell of underarticulated poetics. Half-consciously, people were yearning for new forms of criticism that could put the oomph back into poetry. Weblogs provided for ways to explore debate directly outside of the clotted older channels of the reviews and the newspapers. Belleman’s essay and the resulting online activity had shown that there was a widespread eagerness to take poetry more seriously as a social art form. It was in this environment that Mettes started his remarkable project Dichtersalfabet . At that moment, Mettes was active mostly in academic circles, having become noted at Leiden University as a particularly gifted student of literary theory. Within the Netherlands, the field of literary theory has a very odd relationship to literature as it is practiced in the country. Academic theory tends to have a mostly international view and engage with international debates of cultural criticism, literary theory, and philosophy, with academics often publishing in English and attending conferences around the world. Literature itself however is much more concerned with domestic traditions. Consequently, in the Netherlands, there exists a language gap between academic theoretical practice (as it is studied in the literary theory departments) and literary practice (which, academically, gets studied in specialized departments of Dutch literature). The Dichtersalfabet can be seen as Mettes’s attempt to close this gap. It is also an attempt to bridge the divide between theory and practice, in which he could apply his theoretical knowledge in a very unorthodox and unacademic critical mode that moreover could reach far beyond the domain of conventional criticism. Mettes’s goal was to trace a diagonal through Dutch poetic culture, to “strangle” what he perceived to be its dominant oppressive traditions of agreeable irrelevance, in order to see whatever might be able to survive his critical assaults. But he could only do so by means of a very serious engagement with poetry itself. To this end, he would go systematically through the poetry bookshelf of the Verwijs bookshop (part of a mainstream chain of booksellers) in The Hague, buying one publication per blog item, starting from A and working his way through the alphabet, reading whatever he might encounter that way in the restaurant of the HEMA store (another big commercial chain in the country). He would subsequently write down his reading experiences, refraining however from trying to write a nuanced book review. Rather, he would write about anything that caught his attention and sparked his critical interest. This way of working would yield vast, at times somewhat rambling, dense, lively, and generally brilliant essays, in which he held no punches. He never hesitated to pull out his entire arsenal of concepts from the international theory traditions, while never degenerating into mere academic exercise and pointless intertextualities. The attempt was rather to live the poetry that he read, and to engage it with the full range of political, academic, cultural, and personal references that he had at his disposal—all that composed the individual named Jeroen Mettes as a reader. Often what he wrote would not be according to the standards of what we usually think of as a critical review of a book of poetry. Sometimes he would even be a little sloppy in his judgments of poets or representations of the books he read, for example by basing an entire essay on the blurb of a book rather than its poetry content. But what he did was always brilliant writing nonetheless—virtuoso riffs on poetic fragments randomly found within capitalist society, exposing an incisive and insistent poetical sensibility. Mettes read poetry for political reasons, to see whether poetry could offer him a way to deal with a political world he detested. The right-wing horrors of the Bush years, the Iraq war, and the turn of Dutch public opinion towards ever more conservative, narrow-minded, and xenophobic views alongside a complete failure of the political left to present any credible alternative, were weighing heavily on the times in which Mettes reported on his reading. Poetry was to measure this world, diagram it, to lay bare its inconsistencies and faults, to indicate where lines of flight might be found. Amid the ruins of a world wrecked by imperialist policies, corporate capitalism, and doctrinal neoliberalism it would have to show the possibility of a new community. And it was, through its rhythmical workings, to release the reading subject from his confinement to ideologically conditioned individuality and lead him into the immanent paradise of reading. The stakes were high. Much higher than anything Dutch poetry had seen for many years. Mettes’s blog was widely read from the start. His posts sparked lively debates. Some of these subsequently led to the publication of extensive essays on a few key poets in some literary journals, particularly Parmentier and the Flemish journal yang , for which Mettes would become a member of the editorial board, a few months after starting the Dichtersalfabet . This could have been the start of a brilliant career, but this was not to be. The initial manic energy that fueled the blog gradually subsided. The Alfabet was updated less and less regularly. Mettes sometimes just disappeared for many weeks, then suddenly returning with a brilliant essay. Until, on September 21, 2006, he posted his final blogpost, consisting of no text whatsoever. That night I learned from his mentor at Leiden University that he had committed suicide. Mettes and I had had some fruitful exchanges on poetry, rhythm, music, and form, mostly on the blogs, but also by email. Three weeks before his death was the last time I heard from him: a very sudden, uncharacteristically curt note saying “My old new sentence epic.” Attached to that message I found a DOC-file of a work so major that I felt intimidated. This was N30 , a text he had been working on for over five years. After his death, it took me a long time before I dared to read it in its entirety. In the meantime, the work of preparing the manuscript for publication was entrusted by his relatives to his colleagues at yang magazine. It took them a few years to brush up the text and to edit the Dichtersalfabet -blog (which, apart from the Alphabet project itself, incorporated many other fragments of political, polemical, and theoretical writing) into book form along with the essays. The result of this labor was finally published in 2011 as a two-book set, and Mettes burst onto the Dutch poetry scene for the second time. The work was widely reviewed, on blogs, in journals, magazines, and newspapers. Many critics who had not followed the blogs in 2005 showed themselves surprised, baffled even, by the intensity of Mettes’s critical writing. But for those who had read the blog, the main surprise was in the poetry. During Mettes’s lifetime, some of his poems had already been published in Parmentier . Although these were strong texts by themselves, in no way did they prepare readers for N30 . Nothing like it had been written in Dutch before. Instead, N30 explicitly follows the American tradition of Language Writing, directly referencing Ron Silliman and his concept of The New Sentence. However, it would seem that much of the poetical thinking around his use of this technique puts him closer to a writer such as Bruce Andrews. For Mettes, using non sequiturs as a unit of poetic construction was not only a way of reinventing formal textual construction, but it was another way of finding the fault lines in the social fabric. From the perspective of the Language tradition, one may put N30 somewhere between Silliman and Andrews. N30 shares an autobiographical element with Silliman’s New Sentence projects, and as in Andrews, there is a concern for mapping out social totality within text—what Mettes refers to as a “textual world civil war.” Again this shows a formal textual strategy for allowing the person “Jeroen Mettes” to be absorbed by the world, which here appears as a whirlwind of demotic and demonic chatter, full of violence, humor, intensity, beauty, disgust, sex, commerce, and strife. Influenced as it may by American precursors, Mettes’s tone and form end up quite different from his American counterparts, consistently referencing a world that is Dutch, all too Dutch, taking on the oppressive orderliness of Dutch society with its endemic penchant for consensus by introducing chaos into its daily life and laying bare its implicit aggressions. The work’s 31 chapters each have a different feel and rhythmical outline, but none of them follow a predetermined pattern. Rather, Mettes would consistently edit and reedit the text, randomly rewriting parts of it, as he explains in his poetical creed Politieke Poëzie (Political Poetry). N30 – referring to the 1999 antiglobalist protest in Seattle – was to be the first text of a trilogy. The work itself was written “in the mode of the present.” A second text was to be written in the mode of the future, and a third one, in the mode of the past, was going to be an epic poem about the Paris Commune, and to form an alternative poetic constitution for the European project. I still deeply regret that Jeroen Mettes never got to complete those projects, just as I would be very keen on knowing what he might have had to say about more recent political developments. Instead, in 2006, he remained stuck in the horrors of the present, that ended up consuming him completely. He left Dutch literature with some of its most piercing criticism and its most profoundly moving, exciting and powerful poetry. Excerpts from N30 Translated by Vincent W.J. van Gerven Oei from Jeroen Mettes. "N30." In N30+ . Amsterdam: De wereldbibliotheek, 2011. Published with permission of Uitgeverij Wereldbibliotheek, Amsterdam. Chapter 1 1999. A day is a space too. And another man, who had chained himself, had his ribs crushed, and a motor has driven over somebody’s legs. Dutch health care system spends ±145 million guilders per year on worriers. A spiderweb vibrates as I pass by. Randstad renovating. She slaps her bag against her ass: “Hurry up!” OPINION IS TRUE FRIENDSHIP Your skin. It doesn’t express anything. “But the use of the sword, that’s what I learned, and you’ll need nothing more for the moment.” Just try to interrogate a guy like that. Gullit in Sierra Leone. Codes silently lying all around. But that’s simply what belongs to “that it’s just allowed”: that sigh of “world” (a word expressing that the trees are now standing along the water like black men with white bags in their hair); that’s nothing else right? And you see how everything has to move, and first of all what cannot do so. Without Elysium and without savings, barbarians lashing out, horny for an enemy, staring across the water, staring into the air—staring to get out of it. “You’ve never showed me more than the mall,” she said. All those “dreams” in the end—and now? It was lying on the stairway, so I picked it up and took it upstairs. Chapter 3 “You know what?” Telecommunication. For love… I don’t really like that cheap cultural pessimism, but… The holy city is on pilgrimage in the earthly bodies of the faithful until the time of the heavenly kingdom has come. The end of an exhausting autumn day behind the computer, my eyes filled with tears of fatigue. KITCHEN / INSTALLATION / SPECIALIST. Network integration. In the sun, stretched out on a sheet. (…) I don’t believe what I’m reading, because I want to believe something else. An illusion? Suits me. There’s a variety of shapes and tastes… “So what?” you may think. 102 dalmatians can’t be wrong. But I want more, dear… A feel good movie. I’m smashing the burned body. So what? We continue to save the European civilization. What’s there to win? Plato with poets = Stalin without gulag? Ball against the crossbar. No wonder. She comes straight to her point. She’s standing in the kitchen eating an apple. (…) The godless Napoleon had used her as a stable and wanted to have her taken down. “Our” Rutger Hauer. Ready or not here I come. Psst… are you also wearing a string? Nobody understands our desire. Cliffs breaking the waves and shattering the sunset. I used to be a real romantic (as a poet). A typical fantasy used to be the one in which I brutally raped mother and daughter Seaver from the sitcom Growing Pains . Nevertheless you only contain bad words. Eyelashes. Automatic or manual? That your skin always in the afternoon. Integration. The air is empty. Too bad! Hand in hand on their lonely way. Alaska! Chapter 12 May 5, 2001 [10:00-10:30] A dust cloud on a hill. Globe. Indian (British) (tie) / pope. Damascus. Rape. We’re carrying the ayatollah’s portrait through the streets. At the moment the girl is mostly suede jacket with white ribbons on her sleeves. A small explosion flares up/impact. Camouflage. Close up. We’re analyzing the situation. He’s dead right? Dead dead. Dead. Everything without, these, and only with the body. Indices signal death. Dollar bills are printed in factories. Holes. Light patch. Globe in a box. Microphone. What’s the situation? Grey impact on a green hill (field?). The water is blue. He has no lips. Interns on the background with skirts that are too long. This is an example of a sonnet. An Islamic woman pushes against the door of an electronics shop. Arrows (percentages (prices)). Is this what awaits the American? Touch screen interface. The word, an island, can only be a sign in that situation. We pull up a chair, join in on the fun. On the shelves only books about computers. One glance in the distance is enough to lighten up a luna park in the distance. She’s really desperate, especially when she laughs. Click. Ah. Next. And now it’s raining, but that’s ok. Yellow stains sliding over the south. Shallow caves light: clothes, boots, electrical equipment. 45. 22:10. Nothing gives you the right to eat more than people starving to death. The Hague. Slam dunk. Traffic light. Two H’s, one L (standing for the L (little prick)). We’re happy to say something. Clouds, small suns, temperatures, cities. The truth is never an excuse. Yellow. Yellow. Green. Yellow. Yellow. Yellow. Yellow. Green. Green. Yellow. Will you email me? Skeleton: “No.” Ex-nerds in brand-new and brightly red sport cars. $$$. I love. Shihab. Hooves in the sand. Skinny senior with over-sized sunglasses; old jockey (cap, trophy) smiling in slow motion. And there I am again, flashback, crying with my head in between my hands. Sometimes I’ve got the feeling that cannibals. Eyes: blue. Cancer. Why would I wait until tomorrow? Golden beams protruding from the lifted/lit earth. May 5, 2001 [11:30-12:45] You’ll remember this for the rest of your life. Graphs, diagrams. Bu$ine$$. Blue shirt, white collar, no neck (porn star). A name lights up. I’m hysteric. Will you join us? Letters falling in their words. Fingers set up a tent and start to dance. Young entrepreneurs from poor neighborhoods (read: black) guided by Microsoft. Kinda makes me happy, that sort of kitsch. A sense of exhaustion/impotence to see anything but the present. (…) Wouldn’t you like to? Orange explosion in an industrial zone. YOU’RE DOING THIS FOR AMNESTY INTERNATIONAL. Would you. A familiar face. Clouds and blossom. Sunflowers. Supermodels. Mountainous area in a rectangle: shades of brown, from dark to beige, more green toward the south. Tents and next to them (it’s all a blur) people. Plane. Stadium. Geometrical block of people. No, I ain’t crying. I don’t speak no more. I just want. Quote + photo. (Positive:) screaming crowd. Three-piece suit, seen from the back, before entering the arena. On the back: “Daddy abused me.” Oh, bummer. State of emergency has been declared and everyone has to cooperate. She’s cut her wrists. What we do know (…) is that there’s never been a unique word, an imperative name, nor will there ever be. [Click here for work that suits you.] Barefooted children are watching it (coherent pieces revelation of what’s lying below). Who knows how she’s changed during those two years. “Everything used to be better” + sigh. And here we are. An empty field of parquet. A city lying behind it. Explosion. Blue. A rain drop falling in my coffee. May 5, 2001 [14:30-15:30] A young Arafat on video speaking with raised finger. “I’m calling from my convertible.” Names on walls, victims, numbers… Tourists. Yellow. Yellow. “Your own child! Really, what kind of human are you?” I don’t want to hear it no more. A woman jumping out of the water in a yellow bikini against a background of fireworks and the Cheops pyramid. Thy sorrow shall become good fortune, thy complaints laudation. All planets will float and wander. Wo die Welt zum Bild wird, kommt das System (…) zur Herrschaft. It is something, but is it? May 5, 2001 [18:30-19:00] Iris. Leaves. NASDAQ. Open / and white and. For the one who’s doing nothing, just waiting. (…) NO DEFEAT is made entirely up of defeat -- since / the world it opens is always a place / formerly / unsuspected. October 2002. “Jeroen, I’m leaving for the cemetery, byeeee.” The rise of the middle class. My entire oeuvre is an ode to the. My entire head is a fight against the. God always demands what you cannot sacrifice. You may take that the easy way, but… “The state hasn’t made us, but we make the state” (Hitler). A stork exits the elevator. Skeletons of. Moscow. Helsinki. Palermo. Paris. Chapter 30 Like your paradises: nothing. United Desire, as only remaining superpower. And even though the sea is now calmer and the wind is blowing pleasantly in my face… Heart! Who determines whether a tradition is “alive”? The yellow leaf or the white branch? Mars. This sentence is a typical example. Most Dutch people are happy. No consolation. When I see a girl sitting at a table with a book, a notepad, a pen, a bottle of mineral water, her hand writing in the light—then I consider that one thing. “Presents,” “poetry,” “classics.” We are what we cannot make from ourselves. “Left”: mendicant orders, missionaries. Saint-Just: “A republic is founded on the destruction of its enemies.” She crosses the street with a banana peel between her fingers. (…) We chose our own wardens, torturers, it was us who called all this insanity upon ourselves, we created this nightmare… But “no”? Girl (just like a beach ball) talking rapid Spanish (Portuguese?) in a mobile phone. Do I have a chance now that her boyfriend is getting bold? CLIO, horny bitch. What else do you want? An old woman, between the doors of the C1000, is suddenly unable to go on; her husband stretches out his hand, speaking a few encouraging words. Selection from. Der Führer schenkt den Jüden ein Stadt. How can it reach us if we haven’t been already reached somehow? It doesn’t “speak.” No problem. Each word she uses is a small miracle, as if she doesn’t belong to it, to language, but wanders around with a pocket light looking for the exit; she’s never desperate (maybe a little nervous), lighting up heavy words from the inside. But indeed, we’re free. But the predicate is not an attribute, but an event, and the subject is not a subject, but a shell. That’s why also samurai, knights, and warriors raised the blossom as emblem: they knew how to die. Locked up in a baby carriage with a McDonald’s balloon. Blue helicopter, the blue sky. Whether you want to refer? The point is. How / Motherfucker can I sing a sad song / When I remember Zion? You’ll feel so miserable and worthless that you think: “If only I were dead!,” or: “Just put an end to it!” “So you’re an economist?” Her card—two little birds building a nest, her handwriting shaking—is still on the mantelpiece. Guevara: “No, a communist.” A straw fire, such was our life: rapidly it flared up, rapidly it passed. I’m fleeing, coming from nowhere. (…) Eazy-E drinking coffee with the American president. If I’d scream, would that be an event? Drown it: the cleaner it will rise up from the depths. No! The night, so fast… As if there’s something opened up in that face. Come on, we may not curse life. He shows me his methadone: “If you drink that all at once, you’ll die instantly.” The last one dictates how we should behave to deserve happiness. One shine / above the earth. “I want to go to Bosnia,” I said bluntly. I don’t even know the name of the current mayor. Let’s despise our success! “There is no future; this is the future. Hope is a weakness that we've overcome. We have found happiness!” Sun. Sushi. Volvo. I feel like a bomb about to explode at any moment. Makes a difference for the reconstruction right? The decor moves forward. Daughter of Nereus, you nymphs of the sea, and you Thetis, you should have kept his tired head above the waves! Alas! This sentence has been written wearing a green cap. I receive my orders from the future. A frog jumps into it. Her husband has turned the Intifada, which he follows daily on CCN, into his hobby, “to forget that he doesn’t have his driver’s license yet." Suddenly the sun slides over the crosswalk. Her (his?) foot is playing with the slipper under the table. Is this how I’m writing this book now? I’m not a fellow man. I hate you and I want to hurt you. These are my people. Their screaming doesn’t rise above the constantly wailing sirens which we've learned to ignore. My whole body became warm and suddenly started to tremble. Unfortunate is he who is standing on the threshold of the most beautiful time, but awaits a better one. Arafat’s “removal” is contrary to American interests. Jeep drives into boy. What you can do alone, you should do alone. A food gift from the people of the United States of America. Two seagulls. [...]. (shrink)

Childhood trauma is associated with many interpersonal and psychosocial problems in adulthood. The aim of this study was to explore the associations with a spiritual area of personality, namely religious and spiritual struggles (R/S struggles). A nationally representative sample of 1,000 Czech respondents aged 15 years and older participated in the survey. All types of CT were associated with an increased level of all six types of R/S struggles, with the highest values for demonic struggles. Thus, the findings of (...) this study might be important for clinical practice and pastoral care as well as a further research. (shrink)

Receiving a diagnosis of cancer can be devastating. Cancer continues to be one of the most feared diagnoses, and experiencing pain is a major fear for people diagnosed with cancer. Cancer pain is complex in aetiology and can be acute or chronic and can be caused by various compression, ischaemic, neuropathic or inflammatory processes. Many people with cancer will experience excruciating pain, which is often underreported and undertreated. The reasons for this are complex and include various factors including fears and (...) beliefs held by patients. Cognitive factors are important modulators of pain and the appraisals, meanings and beliefs that people have in relation to illness, cancer, and pain, have implications in regard to help-seeking behaviours and the coping strategies people adopt. Cancer pain can impact a range of psycho-social factors across its course. Cancer pain relates to higher rates of psychological distress, anxiety and low mood, and the perception of pain intensity is, in turn, influenced by psychological factors. Cancer pain can negatively affect psychological health, and psycho-social factors can affect the pain experience. It has been suggested that people with a life-limiting illness experience ‘total pain’, and this can encompass psychological, social, practical, spiritual domains. Research demonstrates that cancer is predominantly an illness affecting older people, yet there is a higher risk of under-treated pain in this age group and there is a paucity of research into the subjective experiences of older people managing their cancer pain. Many older people are required to self-manage cancer pain at home as outpatients, due to drivers to keep people out of inpatient care, such as the high healthcare costs of inpatient treatment, and patients wanting to manage their illness, and die, at home. Our own research into this area found that the self-management of cancer pain involves a sequential and temporal process, which centres on perceptions of control. We describe how the older people in our study experienced a perceived loss of control, followed by a sense of gaining control over pain through various experience of certain internal and external factors. The assessment and treatment of physical pain should be done in combination with assessment and treatment of psycho-social and spiritual pain, and interventions for cancer pain need to focus on increasing positive affect and reducing helplessness. No person should suffer with poorly controlled pain and we argue for the need for further research in this area to ensure adequate treatment for all.Clinical Implications: Assessment and treatment of physical pain in people with cancer needs to be conducted in combination with assessment and treatment of psycho-social issues and spiritual pain. Psychological and behavioural approaches have strong evidence supporting their efficacy for reducing cancer pain. Interventions should target helplessness and focus on increasing positive affect through positive psychological states including fighting spirit and resilience. Person-centred interventions that focus on helping people with the search for meaning may help those with cancer pain derive positive benefits. (shrink)

This study focuses on influence that older adults, living in nursing homes, have over everyday activities. Everyday activities are key to sustain a sense of stability, predictability, and enjoyment in the local world of people's everyday and therefore a critical dimension of the person‐centeredness framework applied within gerontology. This narrative ethnographic study aimed to shed light on how influence can be situated contextually, and how it can emerge through activities as well as how it is negotiated in everyday (...) by frail older adults living in a nursing home. Residents, staff members, and significant others from one nursing home in an urban area of Sweden participated in this study. Data were gathered through fieldwork, including participant observation and formal and informal conversations during a period of 6 months. Data were analyzed through a narrative interpretative approach. The findings are presented in narrative form as exemplars. The exemplars—Craquelures as justification, Seeking a place for other life worlds and An almost perfect trip—reveal a gap between the client‐centeredness framework and lived experiences regarding older adults’ influence in everyday activities. The role of everyday activities in the context of frailty is discussed in terms of ethical and responsive engagement, and implications for health‐care practices are considered. (shrink)

This Special Collection focuses on both theoretical and practical dimensions of the smart healthy age-friendly environments (SHAFE). The SHAFE concept is more and more widely discussed and used in the fields and interventions related to population ageing and intergenerational relationships around the world. The SHAFE idea is one of the most recent iterations of the age-friendly cities and communities (AFCC) concept that was introduced by the World Health Organization in 2007. The discourse on the development of standards for adapting cities (...) and communities to the needs of older adults and ageing societies initially focused on eight domains: housing, transportation, outdoor spaces and buildings, community support and health services, communication and information, social participation, respect, and social inclusion as well as civil participation and employment. The SHAFE concept launched in 2018 by the Cáritas Diocesana de Coimbra, AFEdemy, and their Stakeholders Network is adding three additional layers to the AFCC in order to more dynamically take into account diverse needs and capacities of ageing societies, design accessible products, services and infrastructure to people of all ages as well as solutions related to the contemporary social, health, and environmental challenges. In the first layer, the SHAFE idea supports citizen development in terms of digital skills needed in using smart age-friendly solutions, understanding data processing and management, increasing health literacy, improving civil participation and engagement, as well as maintaining or improving their social networks and relationships. In the second layer, the SHAFE concept focuses on environmental-oriented solutions such as retrofitting and adapting the housing stock, fostering accessibility of public spaces and transport, implementing climate-neutral solutions, and promoting health and well-being in the workplace. Finally, the third layer of the SHAFE concept concentrates on health and care by promoting reliable, safe and accessible big data and artificial intelligence-based solutions, implementation of robust and interoperable digital infrastructures, fostering the development of integrated, personalised, affordable and person-centred solutions, implementing new guidelines and long-term funding solutions and business models as well as training care professionals on digital skills. Goals of this Special Collection: (1) to discuss the theoretical basis of the SHAFE, including critical appraisal and review of this concept; (2) to identify and share the best practices and innovations related to the implementation of SHAFE; (3) to debate on governance modes, management solutions as well as evaluation and impact assessment tools relevant for SHAFE; (4) to gather knowledge and know-how regarding challenges in the areas of management, financing, designing, implementing, testing, and maintaining the sustainability of SHAFE-related products, services, and infrastructures; and (5) to recognise and analyse insights for the potential revisions and updates of the SHAFE concept. (shrink)