Custodian for elderly with memory impairment in Sweden – a study of 260 physicians’ statements to the court

Modern life with increased life expectancy, international migration, new family structures and new values highlight the need for legal ways of assisting elderly with impaired mental capacity to decide about their life and assets. Most elderly are perfectly able to decide for themselves, but those with multiple medical disorders, cognitive impairment or dementia often need assistance in decision-making not least economic matters. Many elderly do not have close relatives, and others do not want their children or relatives to decide on their behalf. As a consequence, vulnerable elderly may be easy targets for criminal activities concerning money [1, 2], wills [3], consumer fraud [4], and marriage for other reasons than love [5]. Cases of financial elder abuse are, however, rarely prosecuted [6].

The rights of the family and court-appointed proxies differ between countries. The European Dementia Consensus Network reviewed how competence (capacity) assessment in dementia is practised in a number of European countries [7] and found a large variety of legislations and practices. The Mental Capacity Act (MCA) of England and Wales is an example of a modern legislation designed to protect adults with reduced decision-making capacity [8‐10]. The different states and territories in Australia [11] and the U.S. have different legislations and practices [12]. Lawyers often take for granted that physicians, at least psychiatrists, know how to assess mental capacity. Many physicians do not know how to do this, and medical schools rarely teach assessment of mental capacity. Methods for assessment of decision-making capacity have been developed for different purposes, like the MacArthur Competence Assessment Tool-Treatment for consent to treatment [13]. The hallmarks of capacity assessment are to check if the patient has ability to understand relevant information and to reason about risks and benefits of potential options and can appreciate the nature of his/her situation and the consequences of his/her choice and last but not least is able to express a choice. Lawyers often believe that a diagnosis of dementia implicates lack of capacity. The progress in research and clinical care in the past decades has totally changed the concept of dementia and cognitive disorders, but this is seldom mirrored by revised legislation.

In spite of the importance of a physician’s assessment and statement when a court appoints proxies for vulnerable elderly, few studies have addressed the role of the physician. It is of utmost importance how the physician assesses and explains the mental capacity of the patient to the court, since this has implications for the patient’s right to make decisions.

In a study of 40 statements for guardianship in persons older than 60 years of age in Texas, U.S.A., almost half of the those were based on "unsupported statements of incompetence" [14]. Another study from Israel, scrutinizing 16 statement concluded that the courts accepted documents with extensive shortcomings [15].

This study has focused on physician’s statements concerning very old, very sick, very lonely and vulnerable elderly in need of protection and assistance of others. This is a group of patients unable to complain, in 54% unable to understand, and very often without close relatives who can speak for them. One would expect that physician’s statement to be presented in court would be produced with utmost care. Just like in studies from Israel [15] and Texas [14], this was not always the case.

Why was the identity of the patients not confirmed in 40% of the cases? Did the physician not care to fill in the space for this, or did the physician write the statement extracting data from the patient record without seeing the patient? In only 20%, it was obvious that the physician actually personally had met the patient for writing this statement. It is, however, likely that this figure is too low due to the neutral way physicians write about patients, avoiding mentioning their own role. In 15 cases, the physician had ticked both that the patient was unable to understand and at the same time had signed consent, showing that the physician did not realize that a person lacking capacity should not sign or was unaware that the social worker had asked the patient to sign consent. The patient may already have been discharged when a relative or social worker requested a physician’s statement.

Advantages with the Swedish system of appointing custodians are that it is simple, cheap and close to the patient. Any licensed physician can write the statement, and the local Chief Guardians and District Courts handle the applications in close collaboration. Court proceedings are brief and lawyers are not needed. Getting a custodian appointed as soon as possible was probably more important for vast majority of patients in the study than having a perfect physician’s statement. Sweden is considered one of the least corrupted countries in the world [17]. This may contribute to a relaxed attitude when writing statements. The procedure seems relaxed also in the U.S., where the legal system is quite different from that of Sweden. In ten U.S. States, the majority of court hearings for guardianship lasted less than 15 minutes and 25% less than five minutes [18]. Medical testimony was rarely presented and only one-third of respondents were represented by an attorney during the guardianship process although the court granted 95% of guardianship requests.

We believe that bringing vulnerable elderly with memory impairment to court is usually not a good idea. Also frail elderly without diagnosed memory disorder may prefer that somebody else takes care of the court procedure. Out of 454 physician’s statements scrutinized, 194 of the statements had no mentioning of memory problems but a heavy load of other medical problems, making some memory impairment likely. Already in the group with memory impairment but not dementia, 28% were considered unable to understand, and probably suffered from dementia without having a diagnosis established.

The compulsory question in the form "Can the individual be heard in court without causing him/her any harm?" can be interpreted as two questions. The first is if the patient is able to give meaningful information to the court. The law says that a person who is unable to understand should not be heard in court in cases concerning custodian. The physician may, however, think that the patient can be taken to court so that the court can see how demented the patient is. The second question is if this would cause the patient any harm. Harm is not defined, but is likely that many patients would find a court proceeding distressing. Most court proceedings concerning custodian are done without the patient present, in spite of physicians ticking that 57% of patients unable to understand can be heard.

The majority of statements were issued by senior physicians in family practices or geriatric setting. The only physicians that wrote more than one statement in our study worked in memory clinics. Since most physicians seldom write statements to the court, they don’t get enough experience to do this well. In Australia, it has been recognized that many health professionals are unaware of the provisions of the legislation and are unclear about what information will be required [11]. Taking over decision-making for others is a multidisciplinary task, which explains some of the difficulties like physicians not understanding legal language, and courts not understand what physicians mean.

In England and Wales, the MCA [10] has been preceded by years of multidisciplinary work. Physicians, psychologists, nurses, lawyers, social workers, patient organizations and others have contributed to make a practically useful legislation. The MCA provides a modern framework to empower and protect people who may lack capacity to make some decisions for themselves. The cornerstone of the legislation is that every adult must be assumed to have decision-making capacity unless it is proved otherwise. It is adapted for many different situations in the life of a cognitively impaired person, not only for financial affairs. The MCA makes clear who can take decisions in which situations, and how they should go about this. The Code of Practice supports the MCA and provides guidance to all those who care for and/or make decisions on behalf of adults who lack capacity. There is also a specialized Court of Protection. Numerous educational activities have been made for health care professionals and others.

Given the expected increase of frail elderly and persons with dementia worldwide, there is a strong need for practically useful guidelines to ensure correct assessments and safe legal procedures. Since the courts have little medical knowledge, a practical solution for all could be to give the courts and public guardians access to specially trained physicians to help out in difficult cases. Alternatively, there could be specialized courts like in England and Wales. The MCA can serve as a model for other countries wishing to modernize their legislation and find practically useful methods of capacity assessment in different situations. The multidisciplinary approach is useful in a number of settings and not limited to the health care system. The participation of the public and patient organisations is essential in order to enable people to decide for themselves and their loved ones as much as possible.

In conclusion, many physicians’ statements about the mental capacity of vulnerable elderly patients had serious short-comings. Physicians in Sweden and worldwide are often unaware of the provisions of the legislation and how to write a statements. Given the expected increase of frail elderly and persons with dementia, there is a strong need for guidelines to ensure correct assessments and safe legal procedures. Legislations differ between countries, but the problems are similar. Due to the world-wide migration, there is a need for internationally accepted concept. Development of guidelines and changes in legislations will benefit from multidisciplinary collaboration to avoid misunderstandings between the health and social care systems and the legal system. Medical schools should offer education about capacity assessment and the legal framework to protect vulnerable elderly, and professionals need continuous education in the field. Last but not least, the public must be involved.

Kerstin Fälldin, Chief Guardian’s Office of the City of Stockholm and Johanna Ulfvarson, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.