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| 2. |
- Runeson, I, et al.
(författare)
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Children's consent to treatment: using a scale to assess degree of self-determination
- 2000
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Ingår i: Pediatric nursing. - 0097-9805. ; 26:5, s. 455-455
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 3. |
- Ågård, A, et al.
(författare)
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Informed consent : Are there ethically justified conditions for exceptions?
- 2002
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Ingår i: Heart. - : BMJ Group. - 1355-6037 .- 1468-201X .- 0007-0769. ; 87:2, s. 105-106
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Tidskriftsartikel (populärvet., debatt m.m.)abstract
- Are good clinical practice and informed consent inseparable? This depends, to some extent at least, on what is meant by “inseparable”. Does this refer to a logical relation, on the assumption that “good clinical practice” by definition includes informed consent, to an empirical generalisation about current medical practice, or a normative statement about how it ought to be? Different arguments pro and contra are relevant depending on whether the statement is interpreted as a logical statement, an empirical generalisation, or as a normative statement.We do not dispute the moral ground for the requirement of informed consent in general,1 and we agree with the statement that “the clinical duty to obtain proper informed consent is now widely believed to be an essential component of good clinical practice”. Neither do we dispute that improved training in communication skills and more time for doctors to communicate with their patients would be a good thing—and probably make more patients participate in the decision process.2What we wished to do in our paper3 was to discuss whether there might not be situations in which exceptions from the general requirement of informed consent would be acceptable. We hope that such a debate could help to define stringent and precise conditions when such exceptions could be morally and legally acceptable. One general assumption we share is the idea that such an exception is reasonable, if insisting on the requirement of informed consent causes more harm than good. In its turn, this presupposes a discussion of criteria of harm and benefit and who should decide about the relative magnitude of harm and benefit. Verification after the event by the patients in question could in certain situations be worth investigating. If there is a verification by the patients concerned, in the sense that they afterwards confirm that they think that an exception from the general requirement was ethically justified, then the concept of an exception from the general main rule is supported by referring to what the patients themselves want. If autonomy is taken seriously, references to what the patients say they want cannot be dismissed lightly.Our ambition with the study published3 was not to suggest any radical changes regarding the informed consent procedure when a patient is suffering from an acute myocardial infarction and is a potential research subject, nor to draw any general conclusions from the results obtained. Instead, we wanted to elucidate the possible problems and disadvantages associated with the process of obtaining informed consent in this particular situation. Primarily we wanted to stimulate the debate on the following two issues:1. Does a patient in the midst of a life crisis have to put his/her signature on a consent form in order to be included in an intervention trial?2. Are there ethically justified alternatives to informed consent when a researcher wants to include a patient in a study, who is not capable of giving a free and informed consent in research?We stated: “All possible measures to increase the autonomy of the patients under the prevailing circumstances should be carried out”. Thus, we do not suggest that all patients with acute myocardial infarction should be treated as incompetent. However, what we have tried to do in our study is to bring forth and highlight empirical evidence, which seems to show that in this particular situation some patients do not have the capacity to give a true informed consent for study participation.Professor Doyal adds another argument, to the effect that even if the patients afterwards do not remember anything, this does not reduce the moral importance of relevant information disclosure. The main question is what is meant by “relevant information disclosure”, and who decides what this is. Suppose (a) that it is left to the patient to decide what is relevant information disclosure, (b) that additional information does not change the decision of the patient, and (c) they do not want this additional information, which conclusion should be drawn from this?We claim that it is time to adjust the informed consent procedure to the patients' capacity in this particular situation. Moreover, the patient should be spared the “actual demand” of signing the consent form in the early phase of an acute myocardial infarction.
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| 4. |
- Ågård, A, et al.
(författare)
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Patients' experiences of intervention trials treatment of myocardial infarction : is it time to adjust the informed consent procedure to the patient's capacity?
- 2001
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Ingår i: Heart. - : BMJ Group. - 1355-6037 .- 1468-201X .- 0007-0769. ; 86:6, s. 632-637
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 5. |
- Ågård, A, et al.
(författare)
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Should cardiopulmonary resuscitation be performed on patients with congestive heart failure? The role of the patient in the decision-making process
- 2000
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Ingår i: Journal of Internal Medicine. - : Wiley-Blackwell Publishing Ltd.. - 0954-6820 .- 1365-2796. ; 248:4, s. 279-286
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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