ABSTRACT In keeping with the pre‐eminent status accorded autonomy within Australia, Europe, and the United States, medical practice requires that patients authorize do‐not‐resuscitate (DNR) orders, intended to countermand the default practice in hospitals of instituting cardiopulmonary‐resuscitation (CPR) on all patients experiencing cardio‐pulmonary arrest. As patients typically do not make these decisions proactively, however, family members are often asked to act as surrogate decision‐makers and decide on the patient's behalf. Although the appropriateness of patients or their families having to decide (...) about the provision of CPR has been challenged, there has been little examination of how patients and their families talk about and negotiate such decisions, particularly in the context of the patient's imminent death. In this article, part of a larger study analysing interviews with 28 patients (13 female) with cancer within weeks of their death, and 20 others (predominantly family) attending, we argue that a common assumption underpinning participants' talk about the DNR decision (i.e. forgoing CPR) is that it requires a choice between life and death. Using illustrative examples, we demonstrate that in making decisions about CPR, patients and their families are implicitly required to make moral judgements about the value of the patient's life, including their relationships with significant others. We identify some implications of these empirical observations for the development of ethically appropriate policies and practices regarding patient autonomy and surrogacy at the end of life. (shrink)

Over the last twenty years, ‘palliative care’ has evolved as a special nursing field in Germany. Its historic roots are seen in the hospices of the Middle Ages or in the hospice movement of the twentieth century. Actually, there are numerous everyday sources to be found about this subject from the nineteenth century. The article at hand deals with the history of nursing the terminally ill and dying in domestic care in the nineteenth century. Taking care of and nursing (...) the dying was part of everyday routine in the nursing care as practiced by the deaconesses and sisters in those days. Mit der Seelenpflege bei den unheilbar Kranken und Sterbenden schufen die Kaiserswerther Diakonissen sich einen von Ärzten unabhängigen Kompetenzbereich. Meine Analysen zur Privatpflege zeigen jedoch darüber hinaus, dass die in ihrer Aufmerksamkeit auf das Mutterhaus ausgerichteten Diakonissen auch in Leibespflege sehr viel unabhängiger von den Ärzten zu agieren schienen als die freien Krankenschwestern. The article takes a look not only at the actual nursing activities but also at the relationship between the sisters and their patients and their relatives and the family doctor. On the basis of the recorded letters which the nurses wrote to the deaconess motherhouse in Kaiserswerth, it is also possible to analyze how the deaconesses communicated and reflected their actions at the deathbed. (shrink)

This article deals with making decisions about starting terminal care. The results are part of a larger survey on nurses’ conceptions of terminal care in community health centres in Finland. The importance, frequency and timing of decision making as well as communication and the number of investigations and procedures carried out are examined. The relationship between decision making and the size of a health centre’s catchment population is also discussed. The results make it possible to compare the current situation in (...) Finland with the national law on patients’ rights. The sample consisted of 328 nurses who worked on the wards of 32 community health centres. The data were collected by means of a structured questionnaire and processed with the Statistical Package for Social Sciences software. The nurses agreed that explicit decision making and documentation about starting terminal care were necessary, but it was highlighted that the practice had many shortcomings. Decisions were often made too late and the patients were not always aware of their situation; family members and the nursing staff were mostly better informed. It was noted that many investigations and other procedures were carried out on terminally ill patients, often at the request of family members. Decision making was found to have some relationship to the size of a health centre’s catchment area. (shrink)

The breaking of bad news in a hospital setting, particularly to patients in a terminal condition, highlights some complex and often emotive ethical issues for nurses. One theory that examines the way in which individuals react to bad news such as a terminal illness, is the theory of awareness contexts. However, this theory may be limited by failing to recognize the complexity of the situation and the ethical issues involved for nurses caring for terminally ill patients. Furthermore, contexts of (...) awareness are influenced to a much greater extent by relationships with nurses than simply by the delivery of medical information. Even when information is given to the client and the family, the nurse is involved in helping them to know the meaning of this information. In a hospital, the nurse is faced with emotional demands by clients, families and colleagues, complex issues of advocacy, and professional boundaries and responsibilities. It is the author’s wish to examine the reality of clinical practice for nurses, thus further extending the theory of awareness contexts. (shrink)

Inside this complete guide you will find: A guide to facilitate conversation with your family; How to create peace when war has been declared on your body; How to alleviate pain and suffering; How to choose your own end; How to use the dying process as a mechanism for personal and family growth. Filled with inspirational and helpful stories, Mortal Dilemmas... is a book that not only will prepare you for the inevitable, but will also give you a (...) sense of satisfaction and control."--P. [4] of cover. (shrink)

Background The consistency of codes governing disclosure of terminal illness to patients and families in Islamic countries has not been studied until now. Objectives To review available codes on disclosure of terminal illness in Islamic countries. Data source and extraction Data were extracted through searches on Google and PubMed. Codes related to disclosure of terminal illness to patients or families were abstracted, and then classified independently by the three authors. Data synthesis Codes for 14 Islamic countries were located. Five codes (...) were silent regarding informing the patient, seven allowed concealment, one mandated disclosure and one prohibited disclosure. Five codes were silent regarding informing the family, four allowed disclosure and five mandated/recommended disclosure. The Islamic Organization for Medical Sciences code was silent on both issues. Conclusion Codes regarding disclosure of terminal illness to patients and families differed markedly among Islamic countries. They were silent in one-third of the codes, and tended to favour a paternalistic/utilitarian, family-centred approach over an autonomous, patient-centred approach. (shrink)

End-of-life issues have become an urgent problem in Japan, where people are among the longest lived in the world and most of them die while connected to high-technology medical equipment. This study examines a sensitive end-of-life ethical issue that concerns patients, families and nurses: the withdrawal of artificial food and fluid from terminally ill patients. A sample of 160 Japanese nurses, who completed a questionnaire that included forced-choice and open-ended questions, supported this act under only two specific conditions: if (...) the patient requested it, and if it relieved the patient’s suffering. They considered that the doctor’s orders, the family’s request, or the patient’s advanced age did not ethically justify this act. A small number of people who had recently lost a relative took part in semistructured interviews focusing on their experiences of their terminally ill relatives being given artificial food and fluid. Ethical, social and cultural factors surrounding this issue are discussed. (shrink)

This article examines the involvement of residents and their relatives in end-of-life decisions and care in Norwegian nursing homes. It also explores challenges in these staff—family relationships. The article is based on a nationwide survey examining Norwegian nursing homes’ end-of-life care at ward level. Only a minority of the participant Norwegian nursing home wards ‘usually’ explore residents’ preferences for care and treatment at the end of their life, and few have written procedures on the involvement of family caregivers (...) when their relative is in the terminal phase. According to the respondents, most staff seem to comfort relatives well. However, several challenges were described. The study revealed a need for better procedures in the involvement of residents and relatives in nursing home end-of-life care. The findings emphasize a need to strengthen both the involvement of nursing home physicians and staff communication skills. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Helping a Muslim Family to Make a Life–and–Death Decision for Their Beloved Terminally Ill FatherBahar BastaniI live in a city in the Midwest with a population of around two million people. There are an estimated 2,000 Iranians living in this city, the vast majority of which belong to Shia sect of Islam. [End Page 190] However, the vast majority is also not very religious. Over the past (...) two decades that I have been living in this city, professionally in the capacity of a physician and university faculty at a school of medicine, and socially as one of the community leaders with a particular role in religious matters, I have acquired the trust of my community. Following one of my yearly routine travels to my homeland, Iran, I had just returned to work when I received a phone call from one of the Iranian community members. He informed me that his father was very ill and was hospitalized, and that the physicians had introduced the idea of stopping life support. The family was experiencing a significant emotional, moral and religious dilemma as to whether they could consent to this. I was requested by the patient’s children to help them make the right decision.I requested that the oldest son, who had called me, to ask the three other siblings and their mother to be present at the bedside of the patient that night, so that we could discuss the matters face–to–face. That same night, all requisite family members and myself gathered at the bedside of this 88–year–old husband and father, who had developed multi–organ failure, which commenced with an infection following a heart valve replacement, followed by bacteremia and sepsis. Moreover, the patient was hypotensive, had developed respiratory failure requiring intubation and artificial ventilation, and had also developed hematologic coagulation abnormalities secondary to sepsis. Because of the sepsis, hypotension, and multiple drugs, including antibiotics and vasopressors, his kidneys had also failed, and there was a need to start hemodialysis if his life was to be maintained. After speaking with the intensive care physicians who were taking care of this elderly gentleman, it became clear to me that further care was futile, and there was absolutely no hope for him to recover from his multiple organ failure. I presented all the facts that I had acquired to the family members, and expressed my own viewpoint that I agreed with those physicians and that further care of their beloved, terminally ill husband and father was futile and only extended his dying. My assurances made it easier for the family members, particularly for his four sons who were present, to come to the decision to withdraw life support. After I informed the intensive care physicians of the family’s decision, the patient was heavily sedated with morphine, and the intravenous fluids, antibiotics, vasopressors, and the ventilator machine were all stopped. Over the next several minutes, the patient developed agonal breathing, his blood pressure dropped to zero, and his heart stopped. During the last few minutes of his life, I held the hands of the family members, we all prayed Islamic prayers to bless his soul while departing from his body. The next day, I supported the family with funeral services that included the Islamic prayers for the dead, the ceremonial religious washing of the body of the deceased, and the ceremonial religious burial.The dilemma that this family faced was multi-factorial: (1) the children had spent all of their adult life in America, and were unfamiliar with Islamic end of life and funeral traditions; (2) they had been asked by their father’s physicians to make a decision regarding the withdrawal of life support, which posed a moral and ethical dilemma; (3) they did not know whether it was religiously acceptable to withdraw life support; and (4) they did not know what type of funeral service would be acceptable to the religious beliefs of their deceased father.My presence as a trusted community leader, physician and religious leader was reassuring to the family members that the decision to stop life support for their loved one with a terminal illness and multiple organ... (shrink)

Background Non-therapeutic trials in which terminally ill cancer patients are asked to undergo procedures such as biopsies or venipunctures for research purposes, have become increasingly important to learn more about how cancer cells work and to realize the full potential of clinical research. Considering that implementing non-therapeutic studies is not likely to result in direct benefits for the patient, some authors are concerned that involving patients in such research may be exploitive of vulnerable patients and should not occur at (...) all, or should be greatly restricted, while some proponents doubt whether such restrictions are appropriate. Our objective was to explore clinician-researcher attitudes and concerns when recruiting patients who are in advanced stages of cancer into non-therapeutic research. Methods We conducted a qualitative exploratory study by carrying out open-ended interviews with health professionals, including physicians, research nurses, and study coordinators. Interviews were audio-recorded and transcribed. Analysis was carried out using grounded theory. Results The analysis of the interviews unveiled three prominent themes: 1) ethical considerations; 2) patient-centered issues; 3) health professional issues. Respondents identified ethical issues surrounding autonomy, respect for persons, beneficence, non-maleficence, discrimination, and confidentiality; bringing to light that patients contribute to science because of a sense of altruism and that they want reassurance before consenting. Several patient-centered and health professional issues are having an impact on the recruitment of patients for non-therapeutic research. Facilitators were most commonly associated with patient-centered issues enhancing communication, whereas barriers in non-therapeutic research were most often professionally based, including the doctor-patient relationship, time constraints, and a lack of education and training in research. Conclusions This paper aims to contribute to debates on the overall challenges of recruiting patients to non-therapeutic research. This exploratory study identified general awareness of key ethical issues, as well as key facilitators and barriers to the recruitment of patients to non-therapeutic studies. Due to the important role played by clinicians and clinician-researchers in the recruitment of patients, it is essential to facilitate a greater understanding of the challenges faced; to promote effective communication; and to encourage educational research training programs. (shrink)

Although Kirk Lougheed recognises the need to integrate diverse frameworks into its predominantly Anglo-American tradition,1 his argument contains a limited understanding of vital force as well as a restricted view of communal relationships. We therefore suggest a broader framework for understanding vitality, community and what is permissible by emphasising how African beliefs by the Akan, advance care directives and Afro-Caribbean religious practice such as Santería expand perspectives within global bioethics and thus encourage more inclusive approaches to addressing bioethical dilemmas. For (...) the Akan (in Ghana), the fundamental concept of ‘being’ is construed on the belief that Okra (considered as soul, or the life-giving spirit in man) and Nkrabea (considered as destiny) determine the life of every individual. Individual autonomy in the matter of ‘death’ is linked to the collective responsibility for the preservation of life. For a terminally ill person, his family and community members, this responsibility is upheld by allowing Nkrabea (destiny) to take its natural course without any human intervention especially in matters of ‘death’. Thus, the Akan belief and conviction concerning Nkrabea or destiny run contrary to the approval of euthanasia.2 The impermissibility of euthanasia, from this perspective …. (shrink)

Objectives: To investigate the current situation of completing the informed consent for do-not-resuscitate (DNR) orders among the competent patients with terminal illness and the ethical dilemmas related to it. Participants: This study enrolled 152 competent patients with terminal cancer, who were involved in the initial consultations for hospice care. Analysis: Comparisons of means, analyses of variance, Student’s t test, χ2 test and multiple logistic regression models. Results: After the consultations, 117 (77.0%) of the 152 patients provided informed consent for hospice (...) care and DNR orders. These included 21 patients (17.9%) who signed the consent by themselves, and 96 (82.1%) whose consent sheet was signed only by family members. The reasons why patients were not involved in the discussions toward the consent (n = 82) included poor physical or psychological condition (44.9%), concerns of the consultant hospice team (37.2%), and the family’s refusal (28.2%). On a multivariate analysis, patients’ awareness of their poor prognosis (odds ratio = 4.07, 95% confidence interval = 2.05 to 8.07) and their understanding of hospice care (2.27, 1.33 to 3.89) were two independent factors (p<0.01) that influenced their participation in the discussions or their personal signature in the informed consent. Conclusion: The family-oriented culture in Asian countries may violate the principles of the Patient Self-Determination Act and the requirements of the Hospice Care Law in Taiwan, which inevitably poses an ethical dilemma. Earlier truth-telling and continuing education of the public by hospice care workers will be helpful in solving such ethical dilemmas. (shrink)

This study was an investigation of which distinctive elements would best describe good and bad death, preferences for life-sustaining treatment, and advance directives. The following elements of a good death were identified by surveying 185 acute-care hospital nurses: comfort, not being a burden to the family, a good relationship with family members, a readiness to die, and a belief in perpetuity. Comfort was regarded as the most important. Distinctive elements of a bad death were: persistent vegetative state, sudden (...) death, pain and agony, dying alone, and being a burden to the family. Of the 185 respondents, 90.8% answered that they did not intend to receive life-sustaining treatment if they suffered from a terminal illness without any chance of recovery; 77.8% revealed positive attitudes toward advance directives. Sixty-seven per cent of the respondents stated that they were willing to discuss their own death and dying; the perception of such discussions differed according to the medical condition (p = 0.001). The elements of a bad death differed significantly depending on the disease state (p = 0.003) and on economic status (p = 0.023). (shrink)

Background: Respecting dignity is having a profound effect on the clinical relationship and the care framework for terminally ill patients in palliative care units, hospices and their own homes, with particular consequences for the emergency department. However, dignity is a vague and multifaceted concept that is difficult to measure. Objective: The aim of this study is to define the attributes of dignity in end-of-life care in the emergency department, based on the opinions of physicians and nurses. Research design: A (...) hermeneutic phenomenological approach utilising Gadamer's philosophical underpinnings guided the study. Participants and research context: This research was conducted in Spain in 2013–2014. Participants included 10 physicians and 16 nurses with experience working in the emergency department. Two focus groups and 12 in-depth interviews were carried out. Ethical considerations: The study was approved by the Research Centre Ethical Committee (Andalusian Health Service, Spain). Findings: The results point to the person's inherent value, socio-environmental conditions and conscious actions/attitudes as attributes of dignity when caring for a dying patient in the emergency department. Discussion: Dying with dignity is a basic objective in end-of-life care and is an ambiguous but relevant concept for physicians and nurses. In line with our theoretical framework, our results highlight care environment, professional actions and socio-family context as attributes of dignity. Conclusion: Quality care in the emergency department includes paying attention to the dignity of people in the process of death. The dignity in the care of a dying person in the emergency department is defined by acknowledging the inherent value in each person, socio-environmental conditions and social and individual acceptance of death. Addressing these questions has significant repercussions for health professionals, especially nurses. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Death and Dying in JapanRihito Kimura (bio)A majority of Japanese, at present, feel that the modern biomedical and technological innovations pertaining to human life and death have been forcing a change in our common understanding of what, historically, was simply the natural event and process of death and dying. The meaning of death and the dying process in our lives is changing as have the traditional criteria for determining (...) death, namely, cessation of heartbeat and respiration.An individual’s death should be a personal and private matter as well as a familial, communal, and social matter. It has been regarded as such for many thousands of years in our Japanese society and culture. It is well understood that our traditional socio-cultural understanding of human life positively admits the natural process of death as the final event of life. The ideas expressed in Zen-Buddhist phrases such as “accept death as it is” and “life-death as one phenomenon” have been key motifs totally integrated into our traditional understanding of life (Tomomatsu 1939).However, the traditional perception of death as an acceptable process has [End Page 374] been vanishing as the Japanese have applied modern biomedical technologies more frequently in well-equipped hospital settings. Although the involvement of family members in the process of dying and particularly in the death event continues in a variety of ways, the care of dying patients in Japan is becoming much more similar to that delivered in advanced hospital settings in many countries of the world, than it is different. Now, in Japan, a majority of people end their lives in the hospital, surrounded by high-technology machines. Yet, in a survey by the Yomiuri Shimbun of 15 June 1991, half of the respondents said they would prefer to die at home.In addition, there has been a tradition of not explaining to terminally ill people the true nature of their condition, on the ground that this is most appropriate way to proceed (Kashiwagi 1994, pp. 78–85). However, views on this matter are changing. There is a gradual move toward telling patients the truth, and the notion of informed consent has been widely publicized in the clinical setting (Leflar 1996, pp. 96–107). In the 1991 nationwide opinion poll by the Yomiuri Shimbun, 65 percent of the participants said that they would like to be given full diagnostic information about themselves even if they were terminally ill. Nevertheless, only 22 percent of the people questioned said they themselves would definitely be prepared to disclose such information to a family member.The same survey indicated that 78 percent of people considered palliative care desirable, even though it might shorten life, while 16 percent thought life should be sustained as long as possible, irrespective of the pain that patients might be suffering.Challenges of Care for the DyingA special task force on terminal care, set up by the Ministry of Health and Welfare, issued a report in 1989 that encouraged the disclosure of diagnostic information to patients, provided that consideration was given to patients’ life histories, personalities, relationships with family members, and other factors. The report favored the use of drugs for pain control; it also dealt with matters such as spiritual requirements and the care of the family members.Traditionally, the physician-patient relationship in Japan is based on a complete and unquestioning trust of the physician by the patient, such that the physician acts to make health care decisions on behalf of the patient (Kimura 1991). However, increasingly it is believed that people should not have to accept without question the authority of doctors in the treatment of disease. Responsibility for the care of the dying should be shared between family members and all health professionals, not only physicians. Changes are needed in the mentalities of health care providers, patients, and family members, and it must be recognized that the medical system and institutions are not immutable (Annas and Miller 1994, pp. 374–76). [End Page 375]To complicate matters even further, although a patient’s family is informed of the incurable nature of the disease affecting their family member, the patient, as noted above, usually is not told of... (shrink)

In 2014, Article 3 of the the Belgian Euthanasia Act (2002) (the Euthanasia Act) was amended (‘the Amendment’) to include the ‘capacity for discernment’ requirement. This paper explores the implications of this highly controversial Amendment. I remain unconvinced of the benefits for children < 12 years old suffering chronic or terminal illnesses. In Part One, I argue that the phrase ‘capacity for discernment’ is problematic and vulnerable to abuse; neither a consistent, widely accepted definition of the phrase has been established (...) nor a standardised method or procedure to adequately gauge a minor’s capacity for discernment. In Part Two I advance the argument that specifically for children < 12 years, aggressive and sophisticated paediatric palliative care treatment, which risks, but does not intend death, is more ethically justified than Euthanasia treatment. A definition of a child’s interests is best achieved through a care-based ethics framework; namely, the child’s relationship with their parents and family members, their doctors and medical practitioners is held to be an interest of crucial importance for the child. I conclude that paediatric palliative care arguably better promotes and upholds this interest. (shrink)

This book examines the reactions of the friends and family of those who elect to die due to terminal illness. These surviving spouses, partners, relatives, and friends, in addition to coping with the death of a loved one, must also deal with the loved one's decision to die, thus severing the relationship. C. G. Prado examines how reactions to elective death are influenced by cultural influences and beliefs, particularly those related to life, death, and the possibility of an afterlife. (...) Understanding the role of these cultural influences on the grieving processes of survivors is a crucial step in allowing them to accept both intellectually and emotionally the finality of elective death and to deal with the decision of their loved one. (shrink)

OBJECTIVES: To analyse the attitudes of medical personnel towards terminally ill patients and their right to be fully informed. DESIGN: Self-administered questionnaire composed of 56 closed questions. SETTING: Three general hospitals and eleven health centres in Granada (Spain). The sample comprised 168 doctors and 207 nurses. RESULTS: A high percentage of medical personnel (24.1%) do not think that informing the terminally ill would help them face their illness with greater serenity. Eighty-four per cent think the patient's own home (...) is the best place to die: 8.9% of the subjects questioned state that the would not like to be informed of an incurable illness. CONCLUSION: In our opinion any information given should depend on the patient's personality, the stage of the illness and family circumstances. Our study confirms that a hospital is not the ideal environment for attending to the needs of the terminally ill and their families. (shrink)

A patient suffering from a severe illness that is entering its terminal stage is forced to develop a coping process. Of all the coping patterns, the religious one stands out as being a psychological resource available to all patients regardless of culture, learning, and any age. Religious coping interacts with other values or practices of society, for example the model of a society that takes care of it's elder members among family or in an institutionalized environment or the way (...) the health system offers or not psychological support for a terminally ill patient. Health care providers should have at least some psychological coping patterns training because not all patterns of religious coping are equally effective, and some have been described as increasing the level of stress or producing other negative psychological effects on the patient. This article aims to review the complex models of religious coping that are unanimously accepted in psychooncology, arguments in favor of religious coping, the types of patients that use this model, ethical dilemmas that could be reinterpreted using religious arguments. Finally, we will also discuss the need of Romanian patients to embrace a religious coping in case of an incurable illness, and also the support that they can receive from both curative and palliative health care providers.  . (shrink)

Los cuidados paliativos deben manejar los diferentes problemas que los pacientes y las familias pueden tener al final de la vida. La sedación es una maniobra terapéutica utilizada con cierta frecuencia en cuidados paliativos y constituye una buena práctica médica cuando está bien indicada; sin embargo, presenta el riesgo de conculcar algunos principios éticos. Los principios de beneficencia y autonomía son posiblemente los principios éticos mayormente afectados cuando se considera la sedación. Se deben cumplir los siguientes requisitos: síntoma refractario, enfermedad (...) terminal y consentimiento, y en lo posible estar avalada por una segunda opinión médica. La sedación paliativa no es eutanasia y las diferencias están en el objetivo, el proceso y el resultado. En el presente trabajo se discuten algunos de los aspectos para prevenir la conculcación de los principios éticos, asimismo se proporcionan algunas sugerencias para ayudar en la toma de decisiones. Palliative care to the different problems encountered by patients and their families at the end of life. Sedation is a therapeutic manoeuvre frequently used in palliative medicine, that could eventually infringe some ethical principles. From our standpoint, beneficence and autonomy are probably the most affected principles when sedation is considered. The following conditions are required in order for it to be applied: refractory symptom, terminal illness and consent, and as long as possible, the decision must be supported by a second medical opinion Palliative sedation is different from euthanasia, and the differences lie in the objective, the pro- cess and the result. Some measures to prevent such violations to occur are discussed, and suggestions intended to guide in decision making are proposed. (shrink)

Withholding and withdrawing artificial nutrition and hydration from terminally ill patients poses many ethical challenges. The literature provides little information about the Islamic beliefs, attitudes, and laws related to these challenges. Artificial nutrition and hydration may be futile and reduce quality of life. They can also harm the terminally ill patient because of complications such as aspiration pneumonia, dyspnea, nausea, diarrhea, and hypervolemia. From the perspective of Islam, rules governing the care of terminally ill patients are derived (...) from the principle that injury and harm should be prevented or avoided. The hastening of death by the withdrawal of food and drink is forbidden, but Islamic law permits the withdrawal of futile, death-delaying treatment, including life support. Nutritional support is considered basic care and not medical treatment, and there is an obligation to provide nutrition and hydration for the dying person unless it shortens life, causes more harm than benefit, or is contrary to an advance directive that is consistent with Islamic law. The decision about withholding or withdrawing artificial nutrition and hydration from the terminally ill Muslim patient is made with informed consent, considering the clinical context of minimizing harm to the patient, with input from the patient, family members, health care providers, and religious scholars. (shrink)

The parents of some terminally ill children have reported that being asked to authorise removal of life-sustaining measures is akin to being requested to sign a “death warrant”. This dilemma leaves families not only enduring the grief of losing a loved one, but also with feelings of ambivalence, anxiety and guilt. A straightforward method by which the parents of terminally ill children can entrust the role of healthcare surrogate to the treating physician is presented. The cornerstone of this (...) paradigm is parental awareness that the physician will act in the child’s best interest, even if that means discontinuing life-sustaining measures. The goal is to mitigate parental guilt and fear of misperception, by self and others, of having given up on their child. From a moral standpoint this concept is an appealing option as it conforms to the four basic principles of medical ethics. While laws in the USA and several European nations prevent members of the medical team from taking on the responsibilities of healthcare surrogate for terminally ill patients, formal and informal precedence for this option already exists in France, The Netherlands, Norway, Sweden, Switzerland, and the Canadian province of Manitoba. (shrink)

This paper explores ethical issues relating to the management of patients who are terminally ill and unable to maintain their own nutrition and hydration. A policy of sedation without hydration or nutrition is used in palliative medicine under certain circumstances. The author argues that this policy is dangerous, medically, ethically and legally, and can be disturbing for relatives. The role of the family in management is discussed. This issue requires wide debate by the public and the profession.

The author reviews and continues the debate initiated by her recent paper in this journal. The paper was critical of certain aspects of palliative medicine, and caused Ashby and Stoffell to modify the framework they proposed in 1991. It now takes account of the need for artificial hydration to satisfy thirst, or other symptoms due to lack of fluid intake in the terminally ill. There is also a more positive attitude to the emotional needs and ethical views of the (...) patient's family and care-givers. However, clinical concerns about the general reluctance to use artificial hydration in terminal care remain, and doubts persist about the ethical and legal arguments used by some palliative medicine specialists and others, to justify their approach. Published contributions to the debate to date, in professional journals, are reviewed. Key statements relating to the care of sedated terminally ill patients are discussed, and where necessary criticised. (shrink)

This research explored the ethical issues that nurses reported in the process of elaboration and further disclosure after an initial diagnosis of a terminal illness had been given. One hundred and six hospice nurses in Norway and Denmark completed a questionnaire containing 45 items of forced-choice and open-ended questions. This questionnaire was tested and used in three countries prior to this study; for this research it was tested on Danish and Norwegian nurses. All respondents supported the ethics of ongoing disclosure (...) to terminally ill patients based on ethical principles embedded in their country’s Patients’ Rights Acts. Truth, as an intrinsic value, proved foundational to patient autonomy, the most frequent ethical principle these nurses reported to justify their ethical position on information disclosure to terminally ill people. Telling the truth about a diagnosis was not the end of ethics in hospice care, but rather the beginning because what occurs ethically in dealing with prognosis issues became central to these hospice nurses, the patients and their families. Coupled with truth-telling, compassionate interaction and care become extensions of patients’ rights. (shrink)

The aim of this study was to determine the opinions of private medical practitioners in Bloemfontein, South Africa, regarding euthanasia of terminally ill patients. This descriptive study was performed amongst a simple random sample of 100 of 230 private medical practitioners in Bloemfontein. Information was obtained through anonymous self-administered questionnaires. Written informed consent was obtained. 68 of the doctors selected completed the questionnaire. Only three refused participation because they were opposed to euthanasia. Respondents were mainly male (74.2%), married (91.9%) (...) and Afrikaans-speaking (91.9%). More were specialists (53.2%) than general practitioners (46.8%). A smaller percentage (35.5%) would never consider euthanasia for themselves compared to for their patients (46.8%). The decision should be made by the patient (50%), the patient’s doctor with two colleagues (46.8%), close family (45.2%) or a special committee of specialists in ethics and medicine (37.1%). The majority (46.9%) indicated that euthanasia should be performed by an independent doctor trained in euthanasia, followed by the patient’s doctor (30.7%). Notification should mainly be given to a special committee (49.9%). Only 9.8% felt that no notification was necessary. There was strong opposition to prescribing of medication to let the patient die. Withdrawal of essential medical treatment to speed up death was the most acceptable method. Although the responding group was fairly homogeneous, responses varied widely, indicating the complexity of opinions. (shrink)

End-of-life issues and questions are complex and frequently cause confusion and anxiety. In _Death with Dignity_,_ _theologian, medical ethicist, and pastoral caregiver Peter A. Clark examines numerous issues that are pertinent to patients, family members, and health care professionals, including physiology, consciousness, the definition of death, the distinction between extraordinary and ordinary means, medical futility, “Do Not Resuscitate” orders, living wills, power of attorney, pain assessment and pain management, palliative and hospice care, the role of spirituality in end-of-life care, (...) and physicians’ communication with terminal patients. Patients, family members, medical students, and health care professionals will find in _Death with Dignity _the_ _practical and ethical knowledge they need to capably and confidently cope with end-of-life challenges. (shrink)

Respecting and encouraging autonomy in the elderly is basic to the practice of geriatrics. In this paper, we examine the practice of cardiopulmonary resuscitation (CPR) and "artificial" feeding in a geriatric unit in a general hospital subscribing to jewish orthodox religious principles, in which the sanctity of life is a fundamental ethical guideline. The literature on the administration of food and water in terminal stages of illness, including dementia, still shows division of opinion on the morality of withdrawing nutrition. We (...) uphold the principle that as long as feeding by naso-gastric (N-G) or percutaneous endoscopic gastrostomy (PEG) does not constitute undue danger or arouse serious opposition it should be given, without causing suffering to the patient. This is part of basic care, and the doctor has no mandate to withdraw this. The question of CPR still shows much discrepancy regarding elderly patients' wishes, and doctors' opinions about its worthwhileness, although up to 10 percent survive. Our geriatric patients rarely discuss the subject, but it is openly ventilated with families who ask about it, who are then involved in the decision-making, and the decision about CPR or "do-not-resuscitate" (DNR) is based on clinical and prognostic considerations. (shrink)

In the mid 1980s it was apparent that the need for organ donors exceeded those willing to donate. Some University of Pittsburgh Medical Center (UPMC) physicians initiated discussion of possible new organ donor categories including individuals pronounced dead by traditional cardiac criteria. However, they reached no conclusion and dropped the discussion. In the late 1980s and the early 1990s, four cases arose in which dying patients or their families requested organ donation following the elective removal of mechanical ventilation. Controversy surrounding (...) these cases precipitated open discussion of the use of organ donors pronounced dead on the basis of cardiac criteria. Prolonged deliberations by many committees in the absence of precedent ultimately resulted in what is, to our knowledge, the country's first policy for organ donation following elective removal of life support. The policy is intricate and conservative. Care was taken to include as many interested parties as possible in an effort to achieve representative and broad based support. This paper describes the development of the UPMC policy on non-heart-beating organ donation. (shrink)

Background: Although family caregivers play an important role in end-of-life care decisions, few studies have examined the communication between family caregivers and patients at the end of life. Objective: The objective was to describe family caregivers’ attitudes toward death, hospice, and truth disclosure. Research design: A quantitative method was used, and a closed-ended survey of 140 family caregivers was conducted in China. The subjects included 140 primary family caregivers of elders with terminal cancer enrolled at (...) a hospice center from April to August 2017. Participants: 140 primary family caregivers of elders with terminal cancer participated the study. Research Context: A high proportion of cancer patients continue to receive inadequate information about their illness. Family caregivers’ inhibitions about disclosing information to cancer patients have not yet been the objects of research in China. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Shenzhen, China. Findings: A questionnaire survey collected information on family caregivers’ background information, emotional state, personal needs, death attitudes, and truth-disclosure opinions. The results revealed that family caregivers’ death attitudes and truth-disclosure opinions played an important role in the process of caring for elders with terminal cancer. Discussion: By adopting a quantitative method, the author revealed not only the general patterns of family caregivers’ attitudes toward cancer diagnosis disclosure but also the reasons for their actions and the practices of family disclosure. Conclusion: The findings suggested that ineffective communication concerning end-of-life issues resulted from family caregivers’ lack of discussion and difficulty in hearing the news. Future studies should examine strategies for optimal communication between family caregivers and patients, especially with regard to breaking the bad news. Professional training in breaking bad news is important and is associated with self-reported truth-disclosure practices among family caregivers. (shrink)

A 68-year-old patient who suffered from gastric cancer diagnosed 8 months earlier presented with multiple peritoneal and hepatic metastasis, despite several rounds of chemo- and radiotherapy. After admission to hospital, his general condition quickly became severely compromised. He was nearly emaciated, despite being on partial parenteral feeding. Four years earlier, due to a cardiac arrhythmia that was refractory to medication, the patient had a cardiac pacemaker implanted, regulated to go off at frequencies of below 70 beats per minute. Given the (...) patient's terminal situation, the team started developing some doubts about the pacemaker's effects during his dying process. The patient had mentioned his intention to donate his pacemaker after his death, but had not asked for its deactivation. The specialists were not sure about the effect of the pacemaker in unnecessarily prolonging the patient's final hour. Nevertheless, they opposed deactivation, which they considered ethically uncertain. The family, who had been initially for the deactivation, decided against it. The patient's condition was progressively deteriorating, as he was falling into a state of sopor and, later, into a coma. (shrink)

My ambition in this paper is to provide an account of an unacknowledged example of blameless guilt that, I argue, merits further examination. The example is what I call carer guilt: guilt felt by nurses and family members caring for patients with palliative-care needs. Nurses and carers involved in palliative care often feel guilty about what they perceive as their failure to provide sufficient care for a patient. However, in some cases the guilty carer does not think that he (...) has the capacity to provide sufficient care; he has, in his view, done all he can. These carers cannot legitimately be blamed for failing to meet their own expectations. Yet despite acknowledging their blamelessness, they nonetheless feel guilty. My aims are threefold: first, to explicate the puzzling nature of the carer guilt phenomenon; second, to motivate the need to solve that puzzle; third, to give my own account of blameless guilt that can explain why carers feel guilty despite their blamelessness. In doing so I argue that the guilt experienced by carers is a legitimate case of guilt, and that with the right caveats it can be considered an appropriate response to the progressive deterioration of someone for whom we care. (shrink)

Patients who are dying of cancer usually give up eating and then stop drinking. This raises ethical dilemmas about providing nutritional support and fluid replacement. The decision-making process should be based on a knowledge of the risks and benefits of giving or withholding treatments. There is no clear evidence that increased nutritional support or fluid therapy alters comfort, mental status or survival of patients who are dying. Rarely, subcutaneous fluid administration in the dying patient may be justified if the (...) class='Hi'>family remain distressed despite due consideration of the lack of medical benefit versus the risks. Some cancer patients who are not imminently dying become dehydrated from reversible conditions such as hypercalcaemia. This may mimic the effects of advanced cancer. These conditions should be sought and fluid replacement therapy should be given along with the specific treatments for the condition. (shrink)

In the traditions of narrative ethics and casuistry, stories have a well-established role. Specifically, illness narratives provide insight into patients’ perspectives and histories. However, because they tend to see fiction as an aesthetic endeavour, practitioners in these traditions often do not realize that fictional stories are valuable moral sources of their own. In this paper I employ two arguments to show the mutual relationship between bioethics and fiction, specifically, science fiction. First, both discourses use imagination to set a scene and (...) determine a perspective. Second, bioethics and science fiction share the family resemblance of expressing moral beliefs. I then consider how understanding bioethics and science fiction as interrelated discourses can be the basis of a methodology for inquiry into relational autonomy in the context of biotechnologies and medicine. As an example of this methodology, I analyse Fay Weldon’s novel The Cloning of Joanna May (1989). (shrink)

In this article, we report the findings from a qualitative study that explored how relatives of terminally ill, alert and competent intensive care patients perceived their involvement in the end-of-life decision-making process. Eleven family members of six deceased patients were interviewed. Our findings reveal that relatives narrate about a strong intertwinement with the patient. They experienced the patients’ personal individuality as a fragile achievement. Therefore, they viewed their presence as crucial with their primary role to support and protect (...) the patient, thereby safeguarding his values and interests. However, their inclusion in decision making varied from active participation in the decision-making process to acceptance of the physicians’ decision or just receiving information. We conclude that models of informed shared decision making should be utilised and optimised in intensive care, where nurses and physicians work with both the patient and his or her family and regard the family as partners in the process. (shrink)

Members of the Student Clinical Ethics Committee discussed the ethical and legal issues arising in a case referred for consideration – the family of a very elderly non-English speaking Asian lady did not want her to be informed that she had incurable lymphoma. The case study summarises the reflections of the Committee and focusses on: the role of cultural norms in healthcare decision making; the extent to which the views of the family about what is best for the (...) patient should be respected, whether the patient should have been informed of her terminal diagnosis and the role of the clinician in navigating complex family dynamics. (shrink)

The dilemma of whether and how to disclose a diagnosis of cancer or of any other terminal illness continues to be a subject of worldwide interest. We present the case of a 62-year-old Japanese woman afflicted with advanced gall bladder cancer who had previously expressed a preference not to be told a diagnosis of cancer. The treating physician revealed the diagnosis to the family first, and then told the patient: "You don't have any cancer yet, but if we don't (...) treat you, it will progress to a cancer". In our analysis, we examine the role of family consent, communication patterns (including ambiguous disclosure), and advance directives for cancer disclosure in Japan. Finally, we explore the implications for Edmund Pellegrino's proposal of "something close to autonomy" as a universal good. (shrink)

Conserving the vitality of suffering: addressing family constraints to illness conversationsWhen persons are confronted with life‐threatening or chronic illness, there is always a possibility that family members other than the person experiencing the illness also suffer as they attempt to manage their own distress. This paper describes exemplars from a hermeneutic study that explored therapeutic conversations between nurses and families who were living with a member experiencing ischaemic heart disease. These conversations uncovered the complexity of both individual and (...) family suffering following acute cardiac illness events, and called attention to nursing practices that addressed some of the ways that family members were constrained from having conversations about the illness. When spaces were created for these conversations to occur, possibilities for making sense of illness and suffering were revealed as vital. These understandings support the efforts of family members to sustain and conserve family relationships in the face of illness and suffering, and inform both the professional and personal lives of nurses. (shrink)

Truth-telling for terminally ill patients is a challenging ethical and social issue for Chinese health care professionals. However, despite the existence of ethical and moral standards for nurses, they frequently encounter moral dilemmas when making decisions about truth-telling to patients with end-stage diseases in China. This article aims to provide ethical strategies for clinical nurses in China regarding truth-telling decisions for terminally ill patients on the basis of their individual autonomy. This article first presents a common case scenario (...) in China and then critically discusses ethical issues related to ethical principles and philosophical theories. The aim is to provide the much needed strategy for truth-telling for nurses who are terminally ill rather than to focus on attitudes toward disclosure. This article focuses on nursing morality, ethics, norms, and philosophy in health care and discusses countermeasures taken by nurses in truth-telling decision-making in combination with Chinese Confucian culture. The analysis identifies key ethical strategies tailored to Chinese nurses’ practices, emphasizing individual autonomy, cultural sensitivity, and family dynamics in truth-telling decisions. The complexity of end-of-life illness requires Chinese nurses to strengthen the communication training needed to deliver bad news, as well as critical and autonomous thinking and good communication skills when implementing patient- and family-centered care, to achieve true delivery of bad news, thereby increasing patient autonomy and promoting more successful collaboration among patients, families, and providers. To improve the quality of care. Chinese nurses should integrate ethical principles with Confucian values to enhance patient-centered communication, respecting autonomy while adapting to cultural nuances in end-of-life care. (shrink)

Jennifer Johnston’s fiction presents the conditions of Irish culture and society by exploring the separations between interior and exterior realms and past and present temporalities persisting within the insulating privacy of the familial home space. In _The Christmas Tree_ (1981), the home is both haven and prison for Johnston’s heroine. In this paper, I argue that the home—which assumes the form of the individual body and the familial home—is paradoxical. The protagonist leaves 1950s Ireland because of the country’s rigid gender (...) roles in order to pursue an autonomous life as a writer in England, but she is unable to publish her writing within the confines of the patriarchal publishing world. The home of her body becomes paradoxical when she becomes a single mother as an avenue for creativity but is then diagnosed with terminal cancer. She returns to her father’s home to die, which she re-orders and reclaims through the disorder of the uncanny—represented by her non-conformity and illness brought into the patriarchal home. By writing her life story and creating a brief, alternative maternal relationship with her young caretaker, the protagonist confronts her own ambivalence toward her parents, who also represent aspects of oppressive heteronormative gender expectations. (shrink)

Medical communication in Western-oriented countries is dominated by concepts of shared decision-making and patient autonomy. In interactions with Roma patients, these behavioral patterns rarely seem to be achieved because the culture and ethnicity have often been shown as barriers in establishing an effective and satisfying doctor–patient relationship. The study aims to explore the Roma’s beliefs and experiences related to autonomy and decision-making process in the case of a disease with poor prognosis. Forty-eight Roma people from two Romanian counties participated in (...) semi-structured interviews, conducted by a research team from the University of Medicine and Pharmacy of Iasi. Participants were recruited among the chronically ill patients and caregivers. The Roma community opposes informing the terminal patients about their condition, the “silence conspiracy” being widely practiced. The family fully undertakes the right of decision making, thus minimizing the patient’s autonomy. We identified ethical dilemmas concerning autonomy, lack of patients’ real decision-making power, and paternalistic attitudes exerted firstly by the family and, on demand, by the physician. Instead, the Roma patient benefits from a very active support network, being accompanied at the hospital by numerous relatives. The patient’s right to make autonomous decisions promoted in the Western countries and stipulated by the Romanian law has diminished value in the Roma community. For the Roma, the understanding of dignity is not simply individual and personal, but it is closely related to their cultural particularities. Ignoring their cultural values could create conflicts between healthcare providers and community. (shrink)

Background: Heart failure is a major growing problem and affects not only patients but also their families and community networks and reduces the functional capacity of patients and impairs their social life. Research questions: This study was conducted to investigate relationship between illness-related worries and social dignity in patients with heart failure. Design: The study had a descriptive-analytic design, and data collection was carried out by means of two specific questionnaires. Participants and context: A total of 130 inpatients from cardiac (...) wards in hospitals affiliated with Tehran and Shahid Beheshti University of Medical Sciences participated. Ethical consideration: This study was approved by the Research Committee of Shahid Beheshti University of Medical Sciences. Results: The highest mean score of illness-related worries was attributed to the dimension of patient’s worry of physical–mental complications, and the least mean score was related to the dimension of the worry about the future of disease. The highest mean score of social dignity was associated with the dimension of social communication and support, and the least is attributed to the dimension of burden to others (economic). Pearson’s statistical test showed a significant correlation (r = 0.455, p < 0.05) between the score of illness-related worries and social dignity. Discussion: As the result of this study showed that reducing illness-related worries in patients with heart failure can improve their social dignity, using strategies to decrease worries and promote social dignity in these patients is recommended. Conclusion: This study affirms the importance of careful evaluation of individual patients to determine their needs related to dignity. We hope these results will help to promote actions by patient-care staff that honor and support patient dignity, resulting in benefits to patients and developing the quality of care based on human rights. (shrink)

Background To determine whether fetal care paediatric and maternal–fetal medicine specialists harbour differing attitudes about pregnancy termination for congenital fetal conditions, their perceived responsibilities to pregnant women and fetuses, and the fetus as a patient and whether self-perceived primary responsibilities to fetuses and women and views about the fetus as a patient are associated with attitudes about clinical care.Methods Mail survey of 434 MFM and FCP specialists .Results MFMs were more likely than FCPs to disagree with these statements : ‘the (...) presence of a fetal abnormality is not an appropriate reason for a couple to consider pregnancy termination’ ; ‘the effects that a child born with disabilities might have on marital and family relationships is not an appropriate reason for a couple to consider pregnancy termination’ ; and ‘the cost of healthcare for the future child is not an appropriate reason for a couple to consider pregnancy termination’ . 65% MFMs versus 47% FCPs disagreed that their professional responsibility is to focus primarily on fetal well-being . Specialists did not differ regarding the fetus as a separate patient. Responses about self-perceived responsibility to focus on fetal well-being were associated with clinical practice attitudes.Conclusions Independent of demographic and sociopolitical characteristics, FCPs and MFMs possess divergent ethical sensitivities regarding pregnancy termination, pregnant women and fetuses, which may influence clinical care. (shrink)

The successes of the Human Genome Project have ushered in a new era of genomic science. To effectively translate these discoveries, it will be critical to improve the communication of genetic risk within families. This will require a systematic approach that accounts for the nature of family relationships and sociocultural beliefs. This paper proposes the application of the Family Systems Illness Model, used in the setting of cancer care, to the evolving field of genomics.

Many people want to spend the last stages of their lives at home, in familiar surroundings, and possibly with people they know. However, this increasing desire on the part of older, ill, or even dying people also makes support from other people unavoidable, which in many cases involves family members, loved ones, or even friends. These family caregivers care for the person concerned, even though they lack the professional skills of nursing staff, for example, and have usually not (...) been prepared for this task. This article focuses on the ethical significance of the moral identity of family caregivers. While the effects of this care constellation on the caregivers have often been discussed in the scientific literature, ethical considerations regarding moral identity have so far been neglected. In the first step, the question of what is actually meant by the term moral identity is examined. The second step shifts attention to those people who have taken on the care of a loved one. The relevance of this previously discussed identity is emphasized by using study results and work in this context, and placed in relation to family caregivers. The third step shows that (1) moral identity must be understood as a necessary prerequisite for adequate and humane care, (2) this identity can be enhanced through the caregiving relationship, and (3) the activities undertaken by family caregivers reveal their moral identity. These considerations are finally summarized, provided with ethical aspects, and awareness of this important work of family caregivers is raised. (shrink)

ABSTRACT This paper critically examines the liberal model of decision making for the terminally ill and contrasts it with the familial model that can be found in some Asian cultures. The contrast between the two models shows that the liberal model is excessively patient‐centred, and misconceives and marginalises the role of the family in the decision making process. The paper argues that the familial model is correct in conceiving the last journey of one's life as a sharing process (...) rather than a process of exercising one's prior or counterfactual choice, and concludes by suggesting a policy framework for the practice of familialism that can answer the liberal challenge that familialism cannot safeguard the patient from abuse and neglect. (shrink)

This paper describes the semiotic process by which parents, as attachment figures, enable infants to learn to make meaning. It also applies these ideas to psychotherapy, with the therapist functioning as transitional attachment figures to patients where therapy attempts to change semiotic processes that have led to maladaptive behavior. Three types of semiotic processes are described in attachment terminology and these are offered as possible precursors of a neuro-behavioral nosology tying mental illness to adaptation. Non-conscious biosemiotic processes in infant-parent attachment (...) are the basis for early adaptation as well as adaptation or maladaptation in adulthood. Mother-infant interaction can be described as a series of signs, each interpreted so as to dispose the behavior of the other interactant towards the goal of protecting the infant from danger and distress. Regulating arousal, scaffolding infants’ behavior in the infants’ zone of proximal development, and repairing ruptures in the interaction are crucial to infants’ development and adaptation. In semiotic terms, each person activates multiple interpretants to make meaning of sensory stimulation. Non-verbal semiotic synchrony establishes the relationship whereas shared repair of ruptures promotes change. Attachment strategies, as learned adaptations to threat, are neuro-psychological strategies for making meaning of sensory information so as to dispose protective behavior. Type A privileges cognitive-temporal information, Type C affective information, Type B has no bias. Type A and C limit semiotic freedom by using ‘short-cuts’ in processing that produce quick protective behavior in the short-term. Type B includes more representations, and thus more semiotic freedom, resulting in slower responses and long-term flexibility. Attachment strategies function as meta-interpretants for applying one semiotic process to most incoming information about danger. A, B, and C case examples are analyzed in semiotic terms. Psychotherapy can be considered a helping process embedded in a transitional attachment relationship. For psychotherapy to be successful, both somatic stabilization and a therapeutic relationship are needed. Treatment that uses scaffolded semiotic processes in each patient’s ZPD to repair moment-to-moment ruptures holds the potential to reorganize attachment strategies and transfer that potential to reflective language and relationships outside the therapy. The outcome should be greater semiotic freedom such that the individual can trust their own mental processes and use them to establish safe relationships. Language can speed the process, but premature reliance on verbal transformations of non-conscious information can carry misattributions into a second layer of misconstrued meaning and maladaptive behavior. Even when dangerous family relationships and external danger cannot be changed, patients can come to know their own minds and use information to regulate their behavior. The goal of psychotherapy is to free patients from their past by enabling them to be secure about the functioning of their own minds, so that they can both avoid eliciting harm and also establish supportive relationships. (shrink)

What sets off the termination of analysis and psychodynamic therapy from the variety of endings that enter into all human relationships? So asks Herbert J. Schlesinger in _Endings and Beginnings: On Terminating Psychotherapy and Psychoanalysis_, a work of remarkable clarity, conceptual rigor, and ingratiating readability. Schlesinger situates termination - which he understands, variously, as a phase of treatment, a treatment process, and a state of mind - within the family of "beginnings and endings" that permeate one another throughout the (...) course of therapy. For Schlesinger, therapeutic endings cannot be aligned with the final phase of treatment; ending-phase phenomena are ongoing accompaniments of therapeutic work. They occur whenever patients achieve some portion of their treatment goals and supervene when therapy stagnates. Small wonder that an assessment of the patient's relationship to time and capacity to end therapy are key aspects of diagnostic evaluation. By linking beginning and ending phases not to the chronology of treatment but to the patient’s experience of it, Schlesinger brings revivifying insight to a host of psychodynamic concepts. Nor does he shy away from a trenchant critique of the instrumental “medical model” of psychiatric and psychotherapeutic training, which militates against the therapeutic exploration of treatment endings. Schlesinger's exemplification of how to begin treatment from the point of view of ending; his sensitive delineation of the mid-treatment "ending" crises characteristic of "vulnerable patients"; his richly woven case vignettes illustrating various "ending" contingencies and permutations - these inquiries are gems of pragmatic clinical wisdom. _Endings and Beginnings_ distills lessons learned over the course of a half century of practicing, teaching, and supervising psychotherapy and psychoanalysis and is a gift to the profession. (shrink)

Language holds great importance within clinical encounters, particularly when healthcare professionals are dealing with life-threatening diseases, such as cancer. This study is an attempt to explore the perceptions of women under treatment for breast cancer in Karachi, Pakistan, with respect to language employed by healthcare professionals for the disclosure of disease, and the impact that language used has on patients. Using exploratory qualitative methods consisting of 24 in-depth interviews with patients and one interview with a healthcare professional, this study reveals (...) various nuances of language at play. We find that in Pakistani society, there is reluctance to use the word “cancer” during the disclosure of disease by healthcare professionals, family members and patients alike due to fear of imminent death and to retain hope in patients. Instead, colloquial language, such as “rasoli [mass]” and “this illness” is used to refer to the disease. The disease is disclosed with a deliberate attempt to avoid the use of the word “cancer”, and often done in a series of steps rather than the diagnosis being spelt out bluntly, with the former practice generally preferred than the latter. Despite this manner of disclosure, patients remain aware that they are suffering from a disease. This has important implications for clinicians in Pakistan, where there are no standardized practices for breaking bad news, and where clinicians have to tailor their communication styles according to the type of patient, thus the onus rests on physicians to impart information in an empathetic manner to patients suffering from serious diseases. (shrink)