Differences between Parkinson's and Huntington's diseases and their role for prioritization of stem cell-based treatments.

The problems of allocation of scarce resources and priority setting in health care have so far not been much studied in the context of stem cell-based therapeutic applications. If and when competitive cost effective stem cell-based therapies are available, the problem of priority setting - to whom should stem cellbased therapies be offered and on what grounds - is discussed in this article using the examples of Parkinson's Disease (PD) and Huntington's Disease (HD). The aim of this paper is to examine the presently known differences between PD and HD and analyze the role of these differences for setting priorities of stem cell-based therapeutic applications to treat these diseases. To achieve this aim, we (1) present the theoretical framework used in the analysis; (2) compare PD and HD in terms of health related and non-health related consequences of these diseases for patients, their relatives and third parties; (3) analyze the ethical relevance of observed differences for priority setting given different values and variables; (4) compare PD and HD in terms of social justice related consequences of stem cell-based therapies; and (5) analyze the ethical relevance of these differences for priority setting given different values and variables. We argue that the steps of analysis applied in this paper could be helpful when setting priorities among treatments of other diseases with similar differences as those between PD and HD.

Procedures and criteria for accepting the renal patient for inclusion on the waiting list for kidney transplantation in the Nordic countries.

BACKGROUND: The overall aim of this study was to survey and analyze the selection process for patients awaiting a kidney in the Nordic countries collaborating within Scandiatransplant. METHODS: A two-parts questionnaire was sent to one senior physician at each of the 10 Scandiatransplant kidney transplantation centers that use deceased donors. The first part consisted of questions related to the evaluation of a patient for the waiting list. The second part of the questionnaire dealt with 12 borderline cases, based on experiences at seven of all centers. Answers should be given with the policy of the center in mind. The response rate was 100%. RESULTS: Some centers are stricter than others regarding limits for body mass index and cardiac ejection fraction. At three centers, human immunodeficiency virus-positive patients are not included on the list. Four centers have a policy of not including predialysis patients. All centers agreed that they would not refrain from acceptance of a patient due to the scarcity of organs, if the patient was considered to benefit medically from transplantation. Reevaluation of the patient once on the list is done at all centers, focusing on cardiovascular problems. Only a few respondents were positive to the idea of common Nordic guidelines for investigations or for limiting values. CONCLUSIONS: We concluded that there are some, mainly small, differences among Nordic countries regarding procedures and criteria for acceptance of patients on the waiting list for kidney transplantation. The interest in common guidelines is limited.

Attitudes toward xenotransplantation--patients waiting for transplantation versus the general public.

The aim of this study was to survey attitudes toward xenotransplantation and to investigate whether there is a difference in attitudes between patients awaiting a kidney transplantation and the general public. A questionnaire was sent to randomly selected members of the public aged 18-75 (n = 1000) and to all patients of the same age group waiting for kidney transplants in Sweden in 1998 (n = 460). Among the public, 60 % expressed a positive attitude toward receiving an animal kidney graft with the same degree of risk as a human kidney graft, compared with 66 % for the patients. The proportion in favour of receiving a heart remained 60 % for the public, but rose to 70 % for the patients. If a human heart was not available, 61 % of the public were for the use of an animal heart, compared with 73 % in the patient group. A majority of the respondents would accept a transplant from an animal, provided the result and risk of infection were the same as with a human transplant. A greater proportion of patients had a positive attitude to receiving a xenotransplant than did the general public. A life threatening situation marginally increased the positive proportions.

Patients' experiences of intervention trials on the treatment of myocardial infarction: is it time to adjust the informed consent procedure to the patient's capacity?

OBJECTIVE: To investigate how patients included in trials on treatment in the early phase of acute myocardial infarction experience the consent procedure. DESIGN: A combined qualitative and quantitative interview concerning the patients' knowledge of the trial, their feelings about being asked to participate, and their attitudes towards the consent procedure. SETTING: Tertiary referral centre. PATIENTS: 31 patients who had given written informed consent for their participation in randomised intervention trials of acute myocardial infarction. RESULTS: The patients interviewed had only fragmentary knowledge about the trial they were involved in. Most considered that reading and signing a consent form was an unwanted or unnecessary procedure. Instead, they would have preferred to have been given concise verbal information about the study. Most were willing to allow a physician to decide for them in the event of their being too ill to be asked about their participation. CONCLUSIONS: Patients who are asked to participate in intervention trials in the early phase of acute myocardial infarction often appear to lack sufficient knowledge to reach an autonomous choice. There were problems and disadvantages associated with the process of obtaining written informed consent in this particular situation, especially regarding the need for the patient to sign a consent form during the acute phase of the disease.

Interviews with patients, family, and caregivers in amyotrophic lateral sclerosis: comparing needs.

The emphasis of palliative care has been to support both patients and their family caregivers, and to maintain the caregivers' involvement through the patient's illness and death. This study challenges the assumption that people with amyotrophic lateral sclerosis (ALS) and those who care for them at home have a similar view the disease, and experience the problems and needs in the same way as professionals. By interviewing ALS patients and close relatives to ALS patients, and by comparing the quotes from the interviews, some differences between these two groups are revealed. The results of the present study show that ALS patients and close relatives of ALS patients differ in at least five respects: they perceive their needs, and they view, judge, and evaluate the disease, as well as the the process of the disease, in different ways. Furthermore, the study suggests that the patients and their close relatives should be viewed as individuals with their own preferences. Moreover, close relatives need someone in whom to confide, and caregivers have specific needs for support and information.

Professionals' perceptions of children's participation in decision making in healthcare.

The purpose of this study was to identify factors of importance for children's participation in medical and nursing care. A method close to the critical incident technique was used. A total of 92 stories told by staff and containing different levels of children's participation in decision making were analysed. The factors affecting children's participation in decision making were grouped into six categories: the child's protest, the child's age and maturity, the role of parents, attitudes of staff, the time factor and alternative solutions to the problem. This study shows that in certain cases children can affect their situation, bus also that violating actions are performed on children.

Should cardiopulmonary resuscitation be performed on patients with heart failure? The role of the patient in the decision-making process.

OBJECTIVES: There is an ongoing debate about patients' involvement in the decision of whether or not to start, cardiopulmonary resuscitation (CPR) in the case of cardiac arrest. The objective here is to analyse on what grounds patients with heart failure, who run a relatively high risk of suffering cardiac arrest, form their attitudes towards CPR and to what extent they want to be involved in making decisions concerning CPR. DESIGN: This study employs a combined qualitative and quantitative interview concerning patients' knowledge about CPR, their experiences and preferences regarding involvement in making decisions concerning CPR, and their willingness to undergo CPR. SETTING: The study was performed at the Department of Cardiology, Sahlgrens University Hospital, Gothenburg. SUBJECTS: The subjects involved were 40 patients with various stages of chronic heart failure. RESULTS: Many of the interviewees lacked fundamental knowledge of CPR. The majority of the patients opted for CPR no matter how small their chances of survival were. The issue had not earlier engaged their thoughts, even less been discussed with physicians. The patients relied on the physician's ability to judge if CPR was to be regarded as a potentially beneficial intervention or as an unmotivated one. Nevertheless, the patients welcomed the opportunity to take part in the decision-making process. CONCLUSION: In order to make ethically justified decisions, physicians should consider bringing up the question of CPR with patients suffering from heart failure at the point in time where the progressive disease gives rise to more severe symptoms, corresponding to NYHA classes IIIb-IV. In earlier stages of the disease, one can assume that the patient will opt for CPR unless he or she demonstrates a negative attitude towards life.

Comparative report on transplantation and relevant ethical problems in five European countries, and some reflections on Japan.

Comparison of transplantation medicine in Sweden, Denmark, Germany, Spain and Portugal reveals many and important differences with respect to frequency of transplantations, frequency of life donations, legal regulations and influence of the family on organ donation. The differences observed are at least partly related to cultural and value differences between the various countries, but many questions need to be studied systematically and in more detail before useful conclusions can be drawn. One study would have to address the problem of how differences in the family influence on organ donation can be explained. Another question needing further clarification concerns the exact meaning of "medical decision" and "medical criteria" because these terms, on which access to- and selection from the waiting list largely depends, are equivocally defined and seem to differ according to different traditions. Open questions also arise with respect to the influence of "closeness or distance" on medical decision making. The findings indicate that it would be premature to propose common guidelines to be observed within Europe as long as the above mentioned and some further questions have not been systematically studied and thoroughly analyzed.

Surveys on attitudes to active euthanasia and the difficulty of drawing normative conclusions.

PURPOSE: To present surveys on active euthanasia and to discuss what normative conclusions can be drawn. METHODS: Two summary articles and 30 recent surveys on attitudes to active euthanasia are discussed. RESULTS: According to the first summary article, acceptance of active euthanasia among the public has stabilized around 65%; according to the second, almost 60% of physicians are in favour of legalizing active euthanasia. As for the 30 recent surveys, physicians are most often respondents. while the general public is surveyed in only three. The differences in attitudes are striking: 21-78% answered that active euthanasia should be legalized, and 14-51% rejected this idea. The core of the general problem of drawing normative conclusions from empirical data is first addressed; then we discuss the principles of autonomy and beneficence, which are often referred to in arguments for and against euthanasia.

Children's consent to treatment: using a scale to assess degree of self-determination.

Discussion and debate regarding decision-making that is 'in the best interest of the child' and that also considers the child's voice in these decisions have increased in recent years. A study was undertaken to identify everyday situations in medical and nursing care in which children had been allowed to have a voice or been denied the right. Twenty-six hospitalized children, ages 6 to 17 years, and 21 parents were interviewed concerning their experiences with hospitalization. The interviews contained examples of 100 situations in which the children could have had a say in decisions concerning their care and treatment. An instrument describing five levels of self-determination was used to analyze the situations. The results showed that there are situations in the daily care of children who are hospitalized where it is possible to discuss the degree of self-determination of the child. To different degrees, staff members honored children's choices in questions concerning their own health.

Setting priorities versus managing closures--what is the ethically most sound way of handling changes in the health care system?

The answer to the question of the title depends on a number of circumstances, and I go through and comment on five of them. Then an attempt is made to keep some of these circumstances constant and vary others in order to highlight the importance of their ethical points of departure. The pros and cons of various choices are discussed and conclusions are suggested. To make further progress, the original question in the title is replaced by two new questions: under what conditions is managing closures the ethically soundest way of handling changes in the health-care system? And, under what conditions is setting priorities the ethically soundest way of handling changes in the health care system? Some tentative answers to these questions are outlined towards the end of this paper.

Neonatal screening: ethical aspects.

The purpose of this paper is to give an overview of the ethical issues raised by neonatal screening for cystic fibrosis and to propose a structure for the ethical analysis of these issues. The structure is based on an analysis of some of the most common shortcomings of ethical analyses. The structure needs to be supplemented by facts about the present state of the art concerning effects and costs of the various screening and treatment alternatives. Such information is provided by other contributions to these proceedings.

Attitudes towards organ donation and transplantation--a study involving Baltic physicians.

The aim of this study was to identify and describe attitudes towards organ donation and transplantation among a group of Baltic physicians who are involved in this aspect of medical care. A total of 151 neurosurgeons, anesthesiologists, and neurologists anonymously answered a questionnaire between February and March 1995. The majority of physicians said they would be willing to donate their own organs after their death but disagreed with the idea of using organs from a dead person who had had a negative opinion towards organ donation. Given a patient who fulfilled the criteria for brain death, this group of physicians found it widely acceptable to keep the patient on a ventilator until organ donation could take place. We conclude that the participating physicians generally have similar attitudes towards organ donation and transplantation. This study is valuable in that it shows the interest in, and the need for, clinical and research collaboration, including a discussion of ethics, within the area of organ donation and transplantation. This is essential for future collaboration with Western countries.

Challenging assumptions in end-of-life situations.

An actual case is used to highlight ethical and psychological problems which may arise in the care of terminally ill patients. The case is structured and analysed, focusing on five different situations in which more than one alternative action is possible. This study shows that between description and prediction on the one hand, and decision making on the other, the interpretation of the situation and the consideration of possible alternative actions both play an important role. Different factors that may influence the interpretations made by the staff include their values, knowledge, experiences and empathy.

Which patients will benefit from psychosocial intervention after cystectomy for bladder cancer?

OBJECTIVES: To investigate: (i) if early psychosocial intervention after cystectomy for bladder cancer can assist psychosocial rehabilitation; (ii) if the outcome of such intervention correlates with the patient's psychological defensive strategies as revealed with the meta-contrast technique (MCT); and (iii) if the patient's general philosophical outlook is important in this context. PATIENTS AND METHODS: Of 50 patients who had undergone radical cystectomy for bladder cancer, 17 received an ileal conduit, 17 a continent urinary reservoir with abdominal stoma and 16 an orthotopic neobladder. Twenty-four of the patients were randomized to psychosocial intervention, comprising weekly counselling 4-9 weeks after surgery. All patients were then evaluated with the Sickness-Impact Profile (SIP) standard questionnaire and the MCT (a projective test of percept-genetic model) was used to reflect individual defensive strategies at the subconscious or unconscious level. The patient's general philosophical outlook was recorded before and after surgery. RESULTS: There was no significant difference in the results of the SIP between the intervention and the non-intervention group, as a whole or in its psychosocial dimension. However, intervention benefited patients with continent cutaneous diversion, whose scores on the psychosocial SIP dimension were lower than in the groups with ileal conduit diversion or orthotopic bladder replacement (P < 0.05). The MCT analysis of defensive strategies identified three clusters of patients characterized mainly by isolation and repression, repression and stereotypy or sensitivity and stereotypy. Analysis for cluster identification showed no significant SIP score differences between intervention and non-intervention groups. In an analysis of single defensive strategies, stereotypy was associated with higher total SIP score, but not significantly. Three clusters of philosophical outlook were identified; in one cluster, characterized by a belief in a supernatural power and philosophical interest, the psychosocial SIP scores were lower in the patients who obtained emotional support and the reverse in a cluster with contrary attitudes, although neither differences were significant. CONCLUSION: Psychosocial intervention assisted the psychosocial rehabilitation of patients with continent cutaneous urinary diversion. Defensive strategies and philosophical outlook generally did not influence the outcome of intervention. However, such programmes may be helpful for some patients, mainly those with a basically pessimistic disposition, a general interest in philosophical questions and often using defensive strategies of stereotypy and repression.