Many feel that it is the right of any individual to know their diagnosis no matter what their illness and prognosis. In the study by Maguire et al., only 5% of family members said that their relative suffering from AD had the right to be told their diagnosis (Maguire et al., 1996). Despite this, 36% of family members quoted their 'right to know' as the main reason why they should be told their own diagnosis. This inconsistency may represent a paternalistic desire by family members to protect patients from the harsh reality of their disease, but telling anyone of the patient's diagnosis without first informing the patient may be a breach in patient confidentiality guidelines.
The report of the British Medical Association and The Law Society on the Assessment of Mental Capacity states that 'doctors are bound by a professional duty to maintain the confidentiality of personal health information unless the patient gives valid consent to disclosure or, if the patient is incapable of giving consent, the doctor believes disclosure to be in that person's best interests' (Assessment of Mental Capacity, 1995). The consequence of this guideline is that clinicians must first ask the patient attending the memory disorders clinic whether diagnostic information may be shared with their family members or carers. If the clinician has concerns about the patient's ability to give such consent, these concerns and the reasoning behind these concerns should be documented before diagnostic information is shared. If patients lack capacity they do not forfeit their right to control disclosure of diagnostic information: such patients can authorize or prohibit the sharing of information about themselves if they 'broadly understand the implication of so doing.' It is only in rare circumstances when one feels that the patient would be seriously harmed by the information, that one may disclose information to others without consent.
In 1995 the Fairhill Guidelines on Ethics of the Care of People with AD were published in the United States (Post and Whitehouse, 1995). These guidelines were drawn up by a focus group of professionals working in the field of dementia after a series of meetings with family caregivers and individuals with mild dementia of the Alzheimer's type. The main recommendation of the group was that physicians should inform affected individuals and their families about the diagnosis of probable AD. If a family objects to the patient being present when the diagnosis is disclosed, the group stressed the importance of clarifying that the patient has a moral and legal right to be present and to receive a specific diagnosis unless he or she waives it.
The ethical dilemma of whether patients with AD should be informed of their diagnosis extends into any research that involves such patients. If a patient is to be involved in a research protocol, whether therapeutic or non-therapeutic, they must give informed consent to participate and, in order to give such consent, they must be aware of what condition they have. When a patient lacks capacity to consent to his or her participation in therapeutic research, no other person has the authority to give such consent on the patient's behalf, but it is generally accepted that it is lawful to carry out therapeutic research involving an adult who lacks capacity to consent provided that such research is in the patient's 'best interests' (Assessment of Mental Capacity, 1995). The guidance for doctors on the involvement of persons lacking capacity in non-therapeutic research states that such research may be unlawful (Law Commission Report 231, 1995).
In most memory clinics around the world, trials are ongoing of cognition-enhancing drugs that may halt the progression of AD. Doctors are obliged to obtain informed consent in order to recruit subjects into any trials or research projects. A survey of researchers at the 15 federally funded US Alzheimer's Disease Research Centers, however, found a significant lack of uniformity on the assessment of subjects to consent for research, proxy informed consent usually supplied informally by family members, and minimal use of durable powers of attorney (High, 1993).
As patients in the early stages of the disease who are still competent are more likely to be recruited into therapeutic trials and research projects, it is ethically correct that they should be fully informed of the reason for and consequences of consenting to participate. More severely affected subjects with cognitive impairment are frequently involved in medical research and decisions by surrogates on their behalf have been shown often not to accurately reflect the patient's wishes (Warren et al., 1986).
A patient's capacity to consent is judged through medical assessment in a clinical setting: 'competence' is a legal term and is decided upon by the court. The capacity to make decisions includes 'capacities to understand and communicate, to reason and deliberate with future consequences in mind, and to possess some stability in values and goals' (Post and Whitehouse, 1995). The manner and degree of capacity assessment should depend on the likely harms or benefits that will follow from the decision, therefore high-risk consequences require a more stringent assessment than low-risk consequences. This 'sliding-scale' model for decision making proposes that the patient's capacity to decide is judged with increasing stringency as the decision becomes more potentially harmful (Drane, 1985; Fellows, 1998).
A person with decisional capacity to consent to investigation or treatment needs to be able to understand the medical situation and prognosis, the nature of the recommended care, the risks and benefits of each alternative, and the likely consequences of any care. This means that such persons should be fully aware of their diagnosis. Where patients have difficulty retaining information, or are only intermittently competent to make a decision, the British General Medical Council recommends that the clinician should provide any assistance that the patient might need to reach an informed decision. The clinician should record any decision made while the patient was competent and this decision should be regularly reviewed in order to establish that the patient's views are consistent (Seeking patients' consent: the ethical considerations, 1999). The importance in reviewing the patient's view is to ensure that their decision remains stable over time—the fact that the decision is forgotten from one day to the next may not be relevant as long as the patient makes the same choice again when presented with the same options and information.
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