A right to know?
A decade or two ago, the norm was to withhold the diagnosis from people diagnosed with terminal cancer. This practice has now all but disappeared, and it is generally accepted, in almost every condition with the exception of dementia, that the patient has a right to know, no matter how distressing the diagnosis.
In the 1950s most doctors did not tell people with terminal cancer their diagnosis. A study in 1961 showed that 90% of US doctors usually withheld it, with the aim of maintaining their patients’ hope. However, by the late 1970s, 97% of US doctors said they preferred to tell patients with cancer of their diagnosis and the prognosis. There has been a shift from an emphasis on catering for patients’ needs, as defined by doctors, to patients’ rights and self-determination. This shift may have been due at least in part to better treatments for cancer becoming available. This change mirrors the swing in society in general towards a more consumerist and individual rights-led attitude.
Recently, there is a shift also in attitudes towards people with dementia, moving away from the classical assumption that as the illness progresses there is a gradual and eventually complete loss of personhood and identity. The move towards telling people even very bad news about their health has begun to affect dementia care. However, the situation of someone with dementia is, of course, different. By the nature of the illness, he or she may be less able to understand or cope with bad news.
Arguments against giving someone with dementia the diagnosis
The arguments for withholding a diagnosis of dementia, or for withholding information about the prognosis, fall into a number of groups.
- Adverse effect on the person with dementia
If the person understands the diagnosis and the prognosis, he or she is likely to be severely distressed. He or she may become depressed. There is a risk of suicide. Many people, especially older people, fear becoming a burden on those around them.
- The illness itself
Dementia, it is argued, by its nature damages the ability to understand and to remember information, and to take decisions. It affects people’s ability to deal with difficult emotions. If diagnosis is made late in the illness, the person’s mental capacity may be very limited indeed. The person may not understand the diagnosis at all, or he or she may not remember it. He or she may not be able to make choices in the light of the information. What, then, is the point in telling him or her?
- Family and caregiver attitudes
In addition to the reluctance shown by some medical professionals towards giving the person with dementia the diagnosis, there is often resistance from the person’s family. Relatives may feel protective of the person with dementia. Like the professionals, they often see the illness as a relentless progression about which nothing can be done, and they too want to spare the person from distressing news. Many people with dementia are elderly, and many are cared for by sons and daughters who are understandably protective of their parents or by spouses who may see no reason to upset their husband or wife ‘needlessly’. Relatives may feel that they can and should make decisions for the person in his or her best interests. They may fear the stigma of a diagnosis of Alzheimer's disease or dementia.
- Medical professionals’ knowledge and feelings
There is uncertainty about the reliability of diagnosis and a reluctance to give distressing information which may be inaccurate, as there is still no straightforward diagnostic test. It is difficult to give an accurate idea of the prognosis and of life expectancy as each person with dementia is different. There are feelings of helplessness and hopelessness in the face of a group of progressive diseases none of which has (until recently) been treatable. Lack of knowledge of services which might help the person with dementia and his or her caregiver compounds this feeling of helplessness. Why tell this person the diagnosis, runs the argument, when there is nothing to be done to help?
Arguments for giving someone with dementia the diagnosis
- To maximize autonomy and choice
The argument for giving a person with dementia his or her diagnosis and information about dementia is based on the right of every person to be given medical information concerning him or herself in order to allow autonomy in making informed decisions concerning the future. The experience of dementia may be perplexing, bewildering and frightening, and demands explanation.
People are entitled to know their prognosis, and they may need to know, particularly because of the extensive personal implications of the disease. There are many decisions which a person made aware of a diagnosis of dementia may wish to take whilst he or she is still mentally capable. He or she may make practical arrangements to put affairs in order and make clear wishes for the future:
• granting a power of attorney to a trusted person
• making a will
• discussing future care options
• considering whether or not to participate in research
• writing an advance directive or living will.
People made aware that they have a progressive illness which will gradually deprive them of their mental powers may also wish to settle personal business, such as family relationships. They have the right to know so that they can choose whether their family, caregivers or friends should share the diagnosis and an explanation of the changes they are experiencing. Someone who does not know his or her diagnosis and prognosis cannot be expected to take these decisions, and is deprived of this opportunity.
Professionals working for dementia-specific services may face a dilemma over how to introduce themselves to a person with dementia who is unaware of his or her diagnosis. Professionals, patients and the family all stand to benefit from an open and honest relationship.
- To relieve the anxiety of uncertainty
People’s reactions to being given a diagnosis of dementia vary. Many people are already aware that something is wrong. As awareness of dementia grows in society as a whole, more and more people self-diagnose or suspect what is wrong. Sometimes uncertainty is worse than the fact itself. Some are relieved to be told that they are not ‘going mad’ or that the illness is gradual rather than sudden.
- To avoid paternalism
We cannot assume that the only potential response to a diagnosis would be negative. Nor can we assume that because someone is distressed by the bad news, he or she would have preferred not to have been told. Some people are grateful for the chance to set their affairs in order. Others may decide to use the time they have in a particular way. The level of insight the person has will affect his or her reaction to the diagnosis. Those with insight may already be aware that there is something wrong. He also points out that the risk of depression and a much smaller risk of suicide exists when anyone with insight is told of a major illness, and that Alzheimer's disease is no different. Another study found no significant association between suicidal thinking and awareness of memory difficulties in people over 80. So far, there is no evidence of lasting ill-effects when someone with dementia is told the diagnosis and that there are important substantive benefits including the opportunity to participate in decisions about the future. People with dementia may wish, while they are mentally capable, to make arrangements to consent to or refuse future treatments or research (an advance directive).
- Improved diagnostic techniques
Until the last few years, diagnosis of dementia was frequently made at a point when the person with dementia was at a fairly advanced stage of the illness. The person’s capacity to understand the diagnosis and its implications, and his or her ability to make choices and take actions were thus severely limited. However, improved diagnostic techniques mean that many people with dementia are now diagnosed at an early stage in the illness.
- The wish to know
In Ireland, the study conducted by Maguire showed an interesting contradiction in the attitudes of relatives of people with dementia. Asked if their relative should be told of the diagnosis, 83% said no. However, asked if they themselves should be told if they were diagnosed, 71% said yes. This evidence supports the idea that the majority of individuals would in fact prefer to be told their diagnosis.
When a relative knows the diagnosis and the person with dementia does not, there is a very real barrier of communication between them. If both know, they can be included together in planning for the future.
- Timely access to information, support and new treatments
Improvements over the last few years both in the provision of community care services for people with dementia and their caregivers and in the availability of information about these services should reduce the feeling that ‘nothing can be done’. However, it is still the case that services are often inadequate to meet peoples’ needs fully.
A more dramatic effect on medical professionals’ attitudes may be caused by the release the first drugs treatment for mild to moderate Alzheimer's disease. The availability of such treatment will act as the spur to early and full diagnosis. In addition, the need for informed consent from patients will lead to the necessity of explaining the diagnosis and its implications to the patient. For those with Alzheimer's disease, and their doctors, the new treatment and those which are likely to follow offer a degree of hope for the future which may make the diagnosis easier to deal with.
Things to think about a diagnosis of Alzheimer's dementia
It is important to consider a number of issues that can help you make the decision of whether or not to tell someone they have Alzheimer's. It is difficult. You want to do what is best for them. Initial reaction though can be to protect your loved one and yourself from further pain and distress.
Consider the degree or stage of dementia.
At what stage of Alzheimer's disease is he/she? If a person is in the early stages of Alzheimer's disease they will be able to understand what you are telling them. The information should be given in terms they will understand (that is important for all of us regardless of disease or illness).
Most Alzheimer's and dementia organizations say that it is best to tell someone in the early stages of Alzheimer's about their diagnosis. It allows them time to grieve and also gives them the opportunity to make decisions about their future care and the care of dependants. Different people retain different skills, and memory abilities when they have Alzheimer's.
Will person with Alzheimer's be able to remember information?
If a person with Alzheimer's is too confused or in the late stages of dementia, then telling them they have Alzheimer's would seem to have little advantage. But there are no golden rules. Telling someone who is anxious and confused about their diagnosis may help them in that instance. But I would say it is not very helpful to keep repeating diagnostic information to someone whose memory is profoundly affected.
This example highlights how caregivers have to make judgments that are in the best interests of their loved one. There is no manual of absolutes in all of the aspects of Alzheimer's disease.
Will telling them relieve anxiety and confusion?
Feeling or knowing something is wrong with you or that people are hiding things from you is awful. Depression is a common reaction to news of a diagnosis with a poor prognosis. That can be difficult to deal with but as a reaction it is understandable.
In all my years of nursing practice I only saw one person deal with the information very badly, however, helping people in a hospital or their home as a professional is very different to one on one caregiving within your own family.
Reacting to bad news is something that we all have to do at times in our lives. You can provide the support and kindness they will need to help them through. They can help you. It is so important to remember that having Alzheimer's should not mean you become devalued as a person, as part of a family or society. Being excluded, patronized or robbed of your autonomy is often far worse.
Sensitive disclosure of Alzheimer's diagnosis
It is silly to say, but it is so important, that the information about diagnosis is given sensitively. We have all heard stories about the poor ways medics can impart information, especially bad news.
People will often signal the amount of information they want when you begin to tell them about diagnosis and health issues. People often seem to retain the amount of information they can deal with. Dealing with diagnosis disclosure is about listening, looking and helping that person deal effectively with the information you are telling them.
Choosing the best time to give diagnosis information
- People with Alzheimer's may be more receptive to new information at different times of the day. If you are a doctor, nurse or healthcare worker arrange your appointment to meet each individual needs when you talk about his/her diagnosis for the first time.
- Remember to keep the information precise, do not over elaborate.
- Give information face to face, not over the phone.
- Listen to the person carefully. They often signal the amount of information they can deal with through their question and reactions to diagnostic information.
- Whenever possible provide or have written literature to give to the person with Alzheimer's or their caregiver. Most people have questions later.
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