In lieu of an abstract, here is a brief excerpt of the content:Care of the terminal patient:Are we on the same page?Lauren WancataIn surgical training a “service” or care team consists of sick patients admitted to the hospital and the medical team caring for the patient. Each service consists of an attending physician, a chief resident, a senior resident and junior residents structured as a hierarchy. The chief was gone for the week. As a senior trainee I would (...) be the acting chief—a role I had assumed many times before this month. To prepare for the week of his absence, I read through each patient’s chart, and the chief and I discussed each patient—diagnosis, procedures, and plans.One was a 41–year–old male with cancer—he was young, but a patient like him was not uncommon at my institution. He originally came in through the emergency department with abdominal pain and difficulty with urination. His admitting medical team started the work–up for his symptoms—blood tests, a CAT scan, and consults to other physician services with specialized knowledge. He eventually underwent endoscopy with biopsies of his stomach and placement of stents into his ureter and kidney for his urinary issues. With return of the biopsies, he had a diagnosis—cancer. He required additional procedures, including the placement of stents into his bile ducts, as they, like his ureter, had become affected by the cancer. The next step was staging the cancer to determine his treatment options. Our surgical service was consulted for a diagnostic laparoscopy with washing—we would take a look inside his abdomen with a camera and obtain a fluid sample to be sent to the pathologist for review, the standard of care for this type of cancer. When the camera was placed nodules were seen—a sample of the nodules and the fluid were sent to a pathologist and determined to be positive for cancer: metastatic disease, stage IV. A special feeding tube was placed into his small intestine to aid in nutritional support, as he had already lost a significant amount of weight, and improving his nutrition would be imperative for any further treatments. Following this operation, oversight of his day–to–day care was taken on by our surgical service, and he had been under our care for a period of time before I rotated onto the service for the month.What was the plan for his care in the hospital, and what was his–long–term plan? His cancer could not be surgically removed due to the extent of its spread within his body. He had recently undergone another CAT scan due to an elevation in his white blood cell count (this elevation was a sign of possible infection) and a thoracentesis, a procedure to remove some of the fluid that was collecting around his lungs. Nephrologists (kidney specialist) had been consulted due to his declining kidney function. Throughout the days, his tube feeds, his source of nutrition, would often be turned off due to bloating and feeling full.Each morning, I rounded with our team, and we would see how he was doing. We would discuss how his night went, and make a plan for the day. He was a man of few words, but his wife was always at his bedside, to support him, listen to updates and keep tract of his progress. She had worked at the hospital and had seen a wide range of patients. She would ask about his kidney function, his tube feeds, and his labs. But, she never asked about his prognosis. I would leave his room each day with the unnerving feeling that the patient, family members and care team were not on the same page. Yes, we all wanted him to get better and to leave the hospital. [End Page 28] But, was he really going to get better? What defined better? Did the patient and his family really know the extent of his disease and his prognosis?Towards the end of my week as chief, I started to ask if they had any other questions. It had been a few weeks since his operation. Was there anything that they wanted to discuss or ask me about? At the... (shrink)

Modern technology offers the ability to prolong life by supporting physiologic processes in dying patients who would have succumbed more peacefully to their illnesses in the past. We prolong life, but witness the pain and suffering that our interventions cause. Regardless of one's religious beliefs, the process of making end-of-life decisions is inherently difficult and emotionally trying. The caregiver, family member or friend is faced with making heart-wrenching decisions for loved ones where the line between support and cruelty may (...) feel blurred.This is the nature of ethical dilemmas that arise when core ethical principles collide, necessitating the establishment of the primacy of one over the other. It is... (shrink)

Philip Reed (2023) argues that discrimination against (non-acutely) dying patients constitutes a unique kind—which he calls terminalism—because their status as persons with terminal illness marks them with a socially salient identity which, by means of direct and indirect discrimination, limits their sets of choices and resources, such as in hospice care or organ transplant policies. 1 Importantly, Reed also argues that while terminalism is an increasingly prevalent normative phenomenon, it has been overlooked in the literature, ‘hiding in plain (...) sight’ as even though we are ‘aware of it at some level’." 1 What could explain this paradox? Drawing from Jeffrey Bishop, Giorgio Agamben, and T. Kenny Fountain, I argue that an institutional episteme and operating assumption of medicine, from the training of medical students, discursively disciplines terminally ill persons as bare life, between medicine’s dichotomy of bodies: neither ‘biovaluable’ (the surplus value of separated human bodily material... (shrink)

Objectives To explore attitudes and reasoning among Swedish physicians and the general public regarding the withdrawal of life-sustaining treatment at a competent patient's request. Design A vignette-based postal questionnaire including 1202 randomly selected individuals in the county of Stockholm and 1200 randomly selected Swedish physicians with various specialities. The vignettes described patients requesting withdrawal of their life-sustaining treatment: (1) a 77-year-old woman on dialysis; (2) a 36-year-old man on dialysis; (3) a 34-year-old ventilator-dependent tetraplegic man. Responders were asked to (...) classify the act of terminating treatment and to prioritise arguments for/against. Results A majority in both groups prioritised arguments in favour of terminating treatment and classified the act as defensible in all vignettes. However, among the general public, 16% classified the act as euthanasia in all vignettes; among physicians this view was most expressed regarding ventilator treatment (26%). Some who classified the act as euthanasia prioritised arguments in favour of terminating treatment: among physicians 18% in vignette 1, 19% in vignette 2 and 34% in vignette 3; among the general public 35% in vignette 1, 20% in vignette 2 and 48% in vignette 3. Conclusion There is a widespread consensus regarding competent patients' right to abstain from life-sustaining treatment. An association between the hastening of death, caused by the withdrawal of life-sustaining treatment and the concept of euthanasia is proposed. The results also suggest that classifying the withdrawal of life-sustaining treatment as ‘euthanasia’ does not necessarily mean that the act is interpreted as ethically unacceptable. (shrink)

OBJECTIVES: To study the opinions of nationals (Emiratis) and doctors practising in the United Arab Emirates (UAE) with regard to informing terminally ill patients. DESIGN: Structured questionnaires administered during January 1995. SETTING: The UAE, a federation of small, rich, developing Arabian Gulf states. PARTICIPANTS: Convenience samples of 100 Emiratis (minimum age 15 years) and of 50 doctors practising in government hospitals and clinics. RESULTS: Doctors emerged as consistently less in favour of informing than the Emiratis were, whether the patient (...) was described as almost certain to die during the next six months or as having a 50% chance of surviving, and even when it was specified that the patient was requesting information. In the latter situation, a third of doctors maintained that the patient should not be told. Increasing survival odds reduced the number of doctors selecting to inform; but it had no significant impact on Emiratis' choices. When Emiratis were asked whether they would personally want to be informed if they had only a short time to live, less than half responded in the way they had done to the in principle question. CONCLUSIONS: The doctors' responses are of concern because of the lack of reference to ethical principles or dilemmas, the disregard of patients' wishes and dependency on survival odds. The heterogeneity of Emiratis' responses calls into question the usefulness of invoking norms to explain inter-society differences. In the current study, people's in principle choices did not provide a useful guide to how they said they would personally wish to be treated. (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)

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)

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 paper examines whether physician-assisted suicide is morally permissible, and whether it should be legalised in the sense that those seeking or performing such procedure will be immune from prosecution. The issues of moral and legal permissibility1 are closely connected. One way to argue for the permissibility of PAS is grounded in the argument that a patient has the right to refuse life-saving equipment, or to have it withdrawn,2 and then to further argue that there is no relevant distinction between (...) refusal/withdrawal and PAS, if the patient consents. This is essentially the argument raised in “The Philosophers’ Brief ”, filed by six distinguished philosophers. However, this argument has been soundly criticised. Frances Kamm points out that the general claim on which Dworkin et al. rely—that there is no moral difference per se between killing and letting die—is false. This is because a patient has the right to refuse treatment even when this is against his interest because the alternative would be forced treatment, but it is not true to say that a patient has the right to PAS even when it is against his interest. Also at issue is the Doctrine of Double Effect, according to which there is a moral distinction between an action that is intended to cause death and one that is merely foreseen to cause death. [End Page 224] In section I of this paper, I shall argue against DDE, which purports to disallow PAS but not refusal/withdrawal. I shall argue that since it is permissible for a physician to prescribe morphine to a patient suffering excruciating pain, it is also permissible for her to prescribe such a drug to a patient suffering pain, with the intention that he be killed and hence relieved of the suffering. The grounds on which I rely is the thesis that intention is irrelevant to permissibility, as proposed by Judith Thomson and T.M. Scanlon. In section II, I shall discuss David Velleman’s argument that termination of life is morally impermissible. I proceed to examine in section III the theoretical version of the Slippery Slope Argument. In section IV, I shall consider the practical version of the Slippery Slope Argument. In section V, I shall discuss other consequentialist objections to the legalisation of PAS. In the final section, I shall consider the view that even if PAS is morally permissible, it does not follow that it should be legalised. The argument I consider is the consequentialist one that legalising PAS may have a very different significance—when we consider the total consequences—than if there is only a single act of PAS, considered in isolation. While I agree that consequences are generally very important, I shall argue that we should approach the issue from a contractualist rather than a utilitarian perspective.3. (shrink)

Our research on the texts of the Byzantine historians and chroniclers revealed an apparently curious phenomenon, namely, the abandonment of terminally ill emperors by their physicians when the latter realised that they could not offer any further treatment. This attitude tallies with the mentality of the ancient Greek physicians, who even in Hippocratic times thought the treatment and care of the terminally ill to be a challenge to nature and hubris to the gods. Nevertheless, it is a very curious attitude (...) in the light of the concepts of the Christian Byzantine physicians who, according to the doctrines of the Christian religion, should have been imbued with the spirit of philanthropy and love for their fellowmen. The meticulous analysis of three examples of abandonment of Byzantine emperors, and especially that of Alexius I Comnenus, by their physicians reveals that this custom, following ancient pagan ethics, in those times took on a ritualised form without any significant or real content. (shrink)

The purpose of this paper is to examine the possibilities and limitations of an ethical and practical approach to terminal dehydration. We have argued that dehydration among terminally ill patients offers an important key to a better understanding of the dying process, and that the caregivers' reactions can lead to a deepening of holistic palliative care. This article makes clear that the moral question of terminal dehydration can only be treated by an interdisciplinary approach. Therefore, before studying (...) the question of the most humane course possible, we must first understand the meaning of dehydration and its repercussions for the dying patient. Inspired by an attitude of respect for a good dying process, we have suggested that it is possible to put forward as a general guideline that medical therapy should be progressively reduced when it has been determined that a patient has reached the terminal stage, or is in an irreversible deteriorating process. We describe the critical somatic, social, psychological, moral and spiritual points, which make up an ethical approach to terminal dehydration (TD). In the total care of the irreversibly terminally ill patient, tolerating TD can be an expression of an authentic and caring involvement in the dying patient's welfare. (shrink)

Sickle cell disease is a debilitating illness that affects quality of life and life expectancy for patients. In Cameroon, it is now possible to opt for termination of an affected pregnancy where the fetus is found to be affected by SCD. Our earlier studies found that, contrary to the views of Cameroonian physicians, a majority of parents with their children suffering from SCD would choose to abort if the fetuses were found to be affected. What have not yet been (...) investigated are the views of people suffering from/living with SCD. We used a quantitative sociological method, with administered structured questionnaires, to study the attitudes of adult patients suffering from SCD on prenatal genetic diagnosis and possible TAP. The majority of the 89 participants were urban dwellers , women , Christian and single , with a secondary/tertiary education . The majority would consider PND for SCD; almost half would reject TAP while 40.9% would consider it. Respondents who rejected TAP claimed mostly ethical reasons while those who found TAP acceptable cited fear of having an affected child and the poor quality of the affected child's health . Cameroonian patients with SCD are generally supportive of PND and a remarkably high number of patients living with SCD reported that they would consider terminating a pregnancy based on their assessment of the future well-being of the child. Research is required to investigate the burden of SCD on families and their quality of life. (shrink)

Morphine is usually preferred to treat moderate or severe pain for late‐stage cancer patients. However, medically unindicated or excessive morphine use may result in respiratory depression and death. This essay contends that a clear distinction between relieving pain and performing active euthanasia in the use of morphine should be made in practice. By drawing on Confucian virtue resources, we construct a Confucian conception of human dignity, including both intrinsic and acquired dignity, to analyze the circumstances of morphine use in (...) current China. We argue that not only the Confucian view of intrinsic dignity but also that of acquired dignity would not support morphine euthanasia. (shrink)

This paper presents and discusses a recent Israeli proposal to legislate on the rights of the dying patient. A gap exists between elitist biases of the committee proposing the law, and popular values and sentiments. The proposed law divides the dying patients into two groups: “those who wish to go on living” and “those who wish to die”. The former will have a right to life prolonging extraordinary care. It is not clear who would foot the bill for this (...) care. Also it is hard to see how this munificence could fail to discriminate against all other patients. Both the secular ethicists and the rabbis involved in drawing up the proposal accepted the assumption that it is good for some terminal patients to die. The rabbis objected, however, to direct and active interventions that shorten life. The solution arrived at was to install timers in the ventilators so as to allow them to expire automatically unless the patient wishes for their resetting. (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)

An individual’s right to refuse life-sustaining treatment is a fundamental expression of patient autonomy; however, supporting this right poses ethical dilemmas for healthcare providers when the patient has attempted suicide. Emergency physicians encounter patients who have attempted suicide and are likely among the first medical providers to face the dilemma of honoring the patient’s DNR or intervening to reverse the effects of potentially fatal actions. We illustrate this issue by introducing a case example in which the DNR of a (...) terminally ill woman was not honored because the cause of her cardiac arrest was suicide. We argue that although a terminal diagnosis should change the way health care providers respond to a suicide attempt, many of the theoretical underpinnings for how one should treat suicide attempts—especially the criterion of external reasonability, that is the action to withhold or withdraw life-sustaining measures is reasonable independent of the precipitating event—are common to all situations :3–12, 2013). The presumption that patients who attempt suicide lack capacity due to acute mental illness is flawed because it fails to account for a competent individual’s reasonable preference to not be forced to live in an unbearable, terminal condition. In states without legislation allowing physician aid in dying, patients and providers must grapple with these limitations on a case-by-case basis. In cases where the patient has a limited life expectancy and there is not concern for psychiatric illness as the primary cause of the suicidal action, we argue that the negative right to refuse life-sustaining treatment should prevail. (shrink)

Rapid tissue donation (RTD) is an advancing oncology research procedure for collecting tumors, metastases, and unaffected tissue 2–6 h after death. Researchers can better determine rates of progression, response to treatment, and polymorphic differences among patients. Cancer patients may inquire about posthumous body donation for research to offer a personal contribution to research; however, there are barriers to recruiting for an RTD program. Physicians must reassure the patient that their treatment options and quality of care will not be (...) compromised due to participating in RTD. In this commentary we discuss how theories of altruism may explain cancer patients’ desire to participate in an RTD program, the ethical concerns of health care professionals and patients and the use of altruism as a recruitment strategy. We offer recommendations for examining the cultural and ethical climate of the institution prior to initiating such a program such as examining the relationship of healthcare professionals and patients, identifying ethical concerns, and examining ways to promote acceptance and buy-in across professionals, patients, and families. (shrink)

Debates on morally acceptable and lawful end-of-life practices in pediatrics were reignited by the recent amendment in Belgian law to allow euthanasia for minors of any age who meet the criteria for capacity. Euthanasia and its legalization in pediatrics are often opposed based on the availability of aggressive palliative sedation. For terminally ill patients, this type of sedation is often identified as continuous and deep sedation until death. We demonstrate that this reasoning is based on flawed assumptions: CDS is (...) a morally preferable alternative to euthanasia; CDS can meet the same patient needs as euthanasia; children lack the capacity and experience to make EOL decisions; unlike euthanasia, CDS does not raise capacity issues. Our aim is not to reject CDS as a valid option at the EOL, nor to offer a clear-cut defense of euthanasia for minors, but to emphasize the ethical issues with both practices. (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)

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)

Music’s power to improve the ‘human condition’ has been acknowledged since ancient times. Something as counter-intuitive as weeping in response to music can ameliorate suffering for a time even for terminally ill patients. Several benefits—including catharsis, communication, and experiencing vitality—can be associated with grieving in response to “sad” music. In addressing the potential rewards of such an activity for terminally ill patients, this author combines concepts from philosopher Jerrold R. Levinson’s article, entitled “Music and Negative Emotion,” an illustration (...) from a major motion picture, and supporting research from medical reports and aesthetic writings. Carefully offering this experience is recommended for patients who retain the capacity to express preference. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:“Can They Do This?” Dealing with Moral Distress after Third–Party Termination of the Doctor–Patient RelationshipSusan McCammonNot so long ago, a storm badly damaged the tertiary care hospital in which I practice surgical oncology. In the aftermath of the storm, the institution determined it was no longer able to provide unreimbursed cancer care, and many of my patients were terminated by a form letter from the hospital. The helplessness (...) and outrage that I experienced when I was first handed one of these letters, crumpled from the damp fist of one of my patients, was immense, and frightening in its unfamiliarity: “Can they do this?” I asked repeatedly, ascending a hierarchy of authority, which was increasingly reticent and then elusive. In short, the answer was “yes.”While this decision was made by the administration, its enactment was delegated to the physicians. Thus, not only were the physicians not involved in the decision to terminate their patients, they shouldered the burden of telling their patients that they would no longer be treated. The reason given—storm devastation—was contradicted by the orderly flow of insured patients in and out of unaffected clinics and hospitals.In those months, when the operating rooms were closed, I took to the road and learned about hospice and palliative care medicine on the ground. I drove from city to smaller city to the devastated countryside, locating my patients and providing all the care that I could with only my hands and mind and heart. I struggled with the limitations of the health care system and worked to rebuild a sustainable infrastructure at my own institution, all while trying to come to terms with bioethicist Haavi Morreim’s (1995) caution that “... it is not the physician who owes the resources at all. He cannot owe what others own and control, because moral obligations can only be assigned to those capable of fulfilling them” (p. 87).In considering my experience of moral distress over this period of time, I have reflected on the different connotations of the word, “practice.” I grappled with the philosophical terms “practice,” “praxis,” and “phronesis,” and I questioned their relevance to the word, as used in my professional life. However, in struggling to understand my moral obligations after the storm, when I was learning to do what I could, even when I couldn’t do what I felt like I should, I reconsidered. The elements of immersion, repetition, particularity, and utility that pervade this language of philosophers and artists turned out to be what preserved my ability [End Page 109] to practice medicine in a space holding only patient and practitioner.Many of the patients that I take care of are very poor. Many more are working but uninsured. This is a result of both their risk factors and the demographics and resources in my geographic catchment area. Their access to care was disrupted after a natural disaster and concerted efforts to reestablish it have not succeeded. Since then, I have learned how to tell people that they will die of cancer because they don’t have enough money. This is not a skill I was taught in medical school. I can talk about death, imminent or not, feared or anticipated. I can talk about unresectable tumors, treatments that have more risk than benefit (or no benefit at all), suffering beyond what has yet been experienced or imagined, helplessness, futility and grief. I could be neither surgeon nor oncologist without some facility with these. But I was unprepared for this move from medical to economic “can’t,” the nexus where an institutional “won’t” becomes a personal “can’t.”I should say here that I was not blind to the expense and technological hype of the American medico–industrial complex or our systematic marginalization of public health or the ever–present cries for health care reform. I understood that I was a steward and that I served both the individual and the society and had at my disposal what I was told were limited resources. These values, however, were only just being incorporated into the training of medical professionals; certainly they played no role in my own education. Morreim’s (1995) conclusion... (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)

In this paper, the ethical and legal issues raised by the deactivation of implantable cardioverter-defibrillators in patients with terminal cancer is considered. It is argued that the ICD cannot be well described either as a treatment or as a non-treatment option, and thus raises complex questions regarding how rules governing deactivation should be framed. A new category called “integral devices” is proposed. Integral devices require their own special rules, reflecting their position as a “halfway house” between a form (...) of treatment and a part of the body. The practical problems faced by doctors working in palliative medicine with regard to the deactivation of ICDs are also considered. (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 law stipulates that death is irreversible. Patients treated in accord with the Pittsburgh protocol have death pronounced when their condition might well be reversed by intervention that is intentionally withheld. Nevertheless, the protocol is in accord with the medical "Guidelines for the Determination of Death." However, the Guidelines fail to capture the intent of the law, which turns out to be a good thing, for the law embodies a faulty definition of death. The inclusion of "irreversible" in the (...) legal definition makes that definition excessively demanding and out of step with the ordinary concept of death. On this basis the protocol is absolved of the moral but not the legal charge that it involves vivisection. (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)

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)

How is a terminally ill patient treated by the surrounding people in the U.S. and Japan? How does a terminally ill patient decide on his or her own treatment? These questions will be examined in a study of intensive medical care, received by a terminally ill Japanese cancer patient in the U.S. and Japan. This casereflects the participant observation by a Japanese anthropologist for about 8 years in the United States and Japan on one patient who was hospitalized in both (...) countries on and off for about eight years. The objective of this study is to illuminate the different concept of personhood between the U.S. and Japan that appeared in different cultural practices of both countries and in the subject’s own decision making process. The significant differences appeared between theU.S. and Japan in the concepts of (1) science, (2) suffering, (3) Power of Attorney and Doisho (Consent Form), and (4) organized care. The interpretation of such differences indicates that seemingly universal practices across countries suggest cultural specific concepts and their management. Therefore, ethical norms appeared differently accordingly to each country. (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)

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)

This study explores the perceptions of Norwegian nurses who have received assisted dying requests from terminally ill patients. Assisted dying is illegal in Norway, while in some countries, it is an option. Nurses caring for terminally ill patients may experience ethical challenges by receiving requests for euthanasia and assisted suicide. We applied a qualitative research design with a phenomenological hermeneutic approach using open individual interviews. A total of 15 registered nurses employed in pulmonary and oncology wards of three (...) university hospitals and home care in one municipality were recruited. Four themes emerged from the analysis: (1) unprepared for the request; (2) meeting direct, indirect, and nonverbal requests; (3) working in a gray zone, and (4) feeling alone and powerless. The study found that nurses were unsure how to handle such requests due to professional uncertainty about assisted dying. Working in an environment where the topic is taboo made nurses morally uncertain, and some perceived this as moral distress. The hospital chaplain played a significant role in providing support to these nurses. (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)

Objective: To examine students’ attitudes and potential behaviour towards informing a 12-year-old patient of her terminal prognosis in a situation in which her parents do not wish her to be told, as they pass through a modern medical curriculum.Design: A cohort study of students entering Glasgow University’s new medical curriculum in October 1996.Methods: Students’ responses obtained before year 1 and at the end of years 1, 3, and 5 to the “childhood leukaemia” vignette of the Ethics in Health Care (...) Survey Instrument were examined quantitatively and qualitatively. Analysis of the students’ multichoice answers enabled measurement of the movement towards professional consensus opinion. An analysis of their written justifications for their answers helped to determine whether their reasoning was consistent with professional consensus and enabled measurement of changes in knowledge content and recognition of the values inherent in the vignette. Themes on the students’ reasoning behind their decision to tell the patient or not were also identified.Results: Unlike other vignettes of the EHCI in which autonomy was a main theme, few students chose the consensus answer before year 1 and there was no significant movement towards consensus at any point during the course. In defence of their decision to withhold information, the students expressed strong paternalistic opinions. The patient’s age was seen as a barrier to respecting her autonomy.Conclusions: It is important to identify students’ perceptions on entry to medical school. Transformative learning theory may provide the basis for an approach to foster doctors who consider the rights of young people. Small-group teaching is most conducive to this approach. The importance of positive role modelling is also emphasised. (shrink)