Legal Representation of Patients with Dementia in Long Term Care Settings

Study Setting

Saint Vincent De Paul Residence (SVPR) is a long term care facility for frail and highly dependent older adults, including those suffering from moderate to severe dementia. It has a capacity of 1500 residents with 24-hour medical care available at the facility itself. There are also nine specialised closed dementia wards to tailor for the wide spectrum of disease presentation. A diagnosis of dementia is a requirement for admission to these wards. Documentation of all the patients residing in the closed dementia wards at SVPR was analysed.

Study Design

This is a retrospective quantitative observational study. Approval to carry out this study and permission to collect data from patients’ files was obtained from the Medical Director at SVPR via e-mail. The data protection act was followed in regards of data collection and storage.

Data Collection and Analysis

A data collection sheet was designed as shown in Appendix A. Data was collected from the patient’s medical records. Medical records were analysed from the patient’s physical medical notes stored in the wards. Where documentation was lacking, data was collected from the patients’ caring medical team. The data collection period included September to October 2022. Each ward was visited once during the data collection period. Data was then organised in an Excell sheet from which results were drawn.

Patient Demographics

The medical records of 203 patients were analysed. The average age was 80.3 years, ranging from 59 years to 99 years. 95 were males (46.8%) and 108 were females (53.2%). Figure 1 illustrates the percentage of dementia severity, with moderate severity being the most common. An MMSE was not available in 27% of patients, so their dementia severity could not be ascertained. The average MMSE score for the total population was 12 out of 30.

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Guardianship Status

Only 7 (3.4%) patients had a guardianship present. The average MMSE did not differ significantly from the total population and from those patients without a guardianship as shown in Table 2. The average MMSE score of 13 indicates that dementia of moderate severity was the most common amongst patients who had guardianship. However, the average MMSE score was based on the latest MMSEs since only 3 out of 7 patients had the MMSE score documented at the time of guardianship application. In all these 3 cases, total scores remained stable over an average time span of 2 years.

The patients’ children (57.1%) were more likely to apply for guardianship, followed by the patients’ spouses (28.6%). The relationship of the remaining two guardians included a sibling and a niece.

The Responsible Carer

196 patients (97%) did not have guardianship. 5 of these patients had a power of attorney present, 190 patients had a relative or friend listed as the next of kin (NOK) and 1 patient had no legal guardian or NOK. The type of power of attorney was not documented. Figure 2 describes the relationship of the responsible carers. The children are the most common NOK, followed by spouses, siblings and other family members.

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Documentation

Guardianship application is a process that involves the MDT. Figure 3 shows information about the documentation of this process in our cohort of patients. In all the seven cases, the guardianship status was clearly documented in the doctors’ notes and Relatives’ contact form, together with the name and contact details of the guardians. In all cases, only one guardian was present. In 5 of these cases, a formal mental capacity assessment was performed by a psychiatrist.

Patient involvement was not documented in any of these cases, so it is difficult to ascertain whether they were involved in the decision making process. Moreover, the events that prompted guardianship application, were only documented in two cases, both being progression in cognitive decline. In those patients who had no guardianship, the name and relationship of the NOK, were clearly documented in the Relatives’ contact form.

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The Use of MMSE in Capacity Assessment

The MMSE is a widely used tool to quantify dementia severity [19]. There are various studies exploring the predictive value of the MMSE in determining mental capacity. On the other hand, we also know that mental capacity is decision specific, therefore the predictive accuracy may differ according to the specific decision it is used for [3, 13, 14]. For instance, a study conducted by Gregory R, et al. [19], explored The use of the MMSE in capacity assessment to create an enduring power of attorney (EPA) in 74 participants. It concluded that there was a statistically significant association between the degree of cognitive impairment quantified by the MMSE and capacity. In fact, an MMSE cut off score of 18 had a sensitivity of 86.6%, a specificity of 82.2%, positive predictive value (PPV) of 75.8% and a negative predictive value (PNV) of 90.2% [19]. On the other hand, Ripley S, et al. [20], explored the use of the MMSE in predicting capacity to decide regarding relocation from home to long term care in 38 participants. It concluded that a cut off score of 17 yielded a PPV of 93% and a NPV of 83%, with a misclassification rate of 13% [20]. Another study conducted by Whealan PJP, et al. [21], assessed the predictive accuracy of the MMSE for capacity to consent for research participation. It concluded that a cutoff score of 13/14, had a PPV of 0.84 and an NPV of 0.69. However, it also mislabelled 24% of capable subjects as lacking capacity, and 21% of incapable subjects as having capacity [21].

All the results in these studies identified MMSE cutoff score above the average MMSE scores of our patient population, indicating that capacity to make certain decisions was most likely impaired in most of them. This highlights the importance of ACP including the discussion or appointment of a legal proxy in the early stages of dementia when capacity is more likely to be reserved. In fact, another interesting factor from the results is the lack of patient involvement when making such decisions. For instance, in the 7 cases where guardianship was done, patient involvement was not documented in either case. This could be merely an oversight during the documentation process, but it could also be that the patients were not consulted. This is especially so if the patient had moderate to severe dementia and his/her communication abilities were impaired [22]. On the other hand, just because a patient has cognitive impairment or lack of capacity, doesn’t imply that his/her views should be ignored completely. Then one should utilise the MDT and the patient’s family/ friends to reach a best interest decision based on all the information available [3].

Moreover, certification of lack of capacity is a very serious matter which might affect the patient’s quality of life and autonomy. As a result, one should ensure that it is done thoroughly. As a result, any test that has suboptimal accuracy in predicting mental capacity should be used with caution. This includes the MMSE, where above studies indicated that there were cases of misclassification when predicting capacity to various decisions. In fact, the UK Mental Capacity Act 2005, describes what a mental capacity should consist of, including the components of mental capacity. It describes two separate components [23]. Diagnostic Component: For mental incapacity to be present, this must be a result of an impairment or disturbance in the functioning of the mind or brain. Functional Components: If any of the below components are absent, a patient is said to lack mental capacity.

• Understand the information relevant to the decision: The relevant information needs to be given in a way that the patient is able to understand it.
• Retain that information long enough for the patient to be able to make the relevant decision at the material time.
• Use or weigh that information to make a decision, including the consequences of the decision.
• Communicate his decision by any means including verbal and non-verbal communication.

In fact, the MMSE would only cover the first component by diagnosing the presence of cognitive impairment. On the other hand, it would not address the functional component which can only be assessed by a formal mental capacity assessment. Despite this, only 5 patients in this study had a formal mental capacity assessment done.

Timing of Mental Capacity Assessment

Both the UK MCA 2005 and the Maltese MHA 2012, state that lack of mental capacity should not be assumed based on the patient’s condition and it should be questioned only when indicated [13, 23]. As a result, one could argue that unless there is a specific reason or new event that requires a best interest decision, a mental capacity assessment should not be done. However, appointing a legal proxy, takes time to arrange. Prolongation of decision making in view of legal conflict may be detrimental to the patients with dementia, especially with regards to health issues. This process can be further complicated or delayed by conflict between family members. As a result, this should be prompted in the initial stages of patient contact, rather than in crisis situations when a decision is needed. Moreover, potential future ethical decisions can be predicted in Dementia, including decisions on tube feeding, procedure consents or other end of life decisions. This highlights the importance of introducing ACP during which the patient’s wishes are documented, thereby facilitating the process.

The POA is a form of ACP since one of the requirements for a POA is the presence of mental capacity [12]. However, only 5 patients in this study had a POA. Moreover, for those patients who had a POA, the type of POA was not documented. This is especially important since certain types of POA might not be valid if there is lack of mental capacity as described in Table 1 [12]. As outlined in Table 1, those POAs which get invalidated by incapacitation, concern administrative tasks only. These often include management of finances, property or other affairs, so third parties involved in any transactions might not be aware of the patient’s Dementia diagnosis and possible lack of capacity. As a result, the validity of the POA is rarely questioned. The following ethical dilemmas arise here:

• If the POA is not questioned by third parties but the HCP suspects incapacity, should one perform a formal capacity assessment to actively invalidate the POA if incapacity is confirmed? And then apply for guardianship/Incapacitation/Interdiction to appoint a legal guardian? OR
• Only request a formal capacity assessment for invalidation of a POA if the patient’s capacity is questioned by the administrators or one is suspecting financial abuse from the caregiver? Otherwise, the POA would remain valid in the absence of formal incapacitation.

Various factors come into play here. For instance, a POA only covers financial and administrative tasks, so the problem of a legal proxy with regards to healthcare decisions is still lacking here. The other options would be incapacitation or guardianship. On the other hand, some patients and caregivers who do not have medical knowledge, might want to leave care decisions in the medical team’s hand whom they trust. Tetrault A, et al. [8] conducted a qualitative study on the views of Dementia patients regarding ACP. In the majority of cases, the management of finances prompted them to do a POA or any form of ACP [8]. In fact, when offering guardianship to someone with a POA in clinical practice locally, most do not feel the need for it since their major issues would be the managing of finances and leave the medical decisions in the medical team’s hands. In fact, only 3.4% of this study population had a formal guardianship application done. Additionally, Tetrault A, et al. [8] study, showed that some participants expressed a wish not to burden their relatives and friends with decisions regarding healthcare issues and reported that they trusted the HCP to care for them [8]. On the other hand, there were participants who were fearful and doubtful about the care they would receive in a nursing home based on their experience with other family and friends. Despite this, most patients were open to such discussions and caregivers were also thankful for initiating them [8]. This illustrates the importance of discussion with patients and relatives.

The Process of Shared Decision-Making

There are various theories on decision making [24]. However, making a best interest decision in practice is influenced by many external factors. The most challenging one is the collaboration with various bodies making such decisions complex and time consuming. As a result, one might be tempted to make decisions without involving important stakeholders like the family and the patients themselves. In fact, none of the patients were involved in discussions regarding guardianship applications in this study. An ethnographic study carried out by Kelley R, et al. [25], explored the understanding of patient needs in care homes between the patients suffering with dementia, their caregiver and the HCW caring for them, as well as the involvement of each in decision making [25]. They concluded that the understanding of the patients’ care needs were quite different between the three, with the staff emphasizing on physical/medical needs, the family prioritising the patient’s caregiving needs and the patients themselves prioritising their understanding of the current situation. These are all important point of views which can be included in the decision making process only if all stakeholders are involved. However, this study also demonstrated that there was lack of communication between the medical team, relatives and especially the patients themselves. This often caused dissatisfaction and uncertainty to relatives and patients [25]. Another challenge outlined by this study was the assimilation of different opinions into the decision making. In some instances, opinions also differed between members of the same group, example between different members of the medical team or between family members [25]. This example illustrates the importance of a legal framework or policies to provide a structure for conflict resolution. Moreover, this study highlighted the importance to have these conversations early on and start getting different view points at an early stage. The delay of procuring this information can prolong the already complicated and time consuming decision making process [25].

This ethnographic study also showed the lack of involvement of patients with dementia. A nurse in this study reported that a patient with dementia expressed the wish herself that she wanted to go in a care home and had she been consulted earlier, the discharge process would have been easier and faster [25]. One of the relatives in this study also commented that the caring physician was delivering the information in a way that her mother could not understand because of the words being used. In order for someone to make an informed decision, one needs to provide the correct information and communicate it in a way that someone would understand. In fact, some studies showed that decision making capacity in patients with early AD, can be improved by simplification of information, and the use of memory and organisational aids [24]. Moreover, a study conducted by Murphy J, et al. [26] also showed that communication between the patient and their caregiver, facilitated the decision making process [26]. As a result, HCW need to have the knowledge to carry out these conversations.

However, in order to become knowledgeable, one need to learn and practice. Knowledge, especially with regards to communication skills, is obtained from experience. Moreover, these decisions are greatly affected by local legislation, so it is essential for HCP to be familiar with them in order to provide the correct information. A study carried out by Waller A, et al. [27], explored the decision making skills of Junior Doctors for patients with Dementia in Australia. Participants in this study were presented with two clinical Vignettes regarding following legally binding ACDs. Only 58% and 18% (Vignettes 1 and 2 respectively) of participants made a decision in accordance with the law [27]. This can have serious medicolegal implications as well as increase adverse patient outcome. Another similar study carried out by Mitropoulos J, et al. [28], also explored the effect of the speciality, level of training and years of experience on the decision making skills in Dementia. It concluded that specialities which received the most training and those with more than 10 years of experience were more likely to make a decision which is in accordance with the law. Despite this, 67.5% of all the doctors requested more training on the subject. This highlights the importance of proper education on local legislature.

Legislation on Mental Capacity in Malta

Most medical training in Malta involves UK based exams. This may be adequate with regards to medical management but less so with managing ethical issued associated with medicolegal implications. In fact, Maltese and UK laws associated with mental capacity differ greatly (Refer to the supplementary material for more detail regarding the differences) [8, 14]. This will inevitably impact decision making.

In Malta, Part V of the Mental Health Act 2012 concerns laws regarding mental capacity. The MHA defines mental capacity as follows: “the patient’s ability and competence to make different categories and types of decisions and to be considered responsible for his actions” [13]. It also states that mental capacity in patients suffering from mental disorders should be assumed unless proven otherwise. Moreover, it specifies that only a specialist in Psychiatry can perform a mental capacity assessment [13]. The MHA also refers to the duration of the mental incapacity where it gives instructions on how to proceed if the incapacitation is transient or long standing. Figure 4 illustrates the steps one can follow with regards to decision making in lack of capacity according to local legislation [13, 14].

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Moreover, mental capacity is decision specific [3]. In fact, the specialist needs to state the reason for mental incapacity, the category or type of decision that the patient is unable to make and the estimated duration of lack of capacity. This implies that the patient might have capacity to decide regarding his financial assets but not on decisions pertaining to health. Consequently, the MMHA 2012 also describes the use of the Schedule 12 form which is used to revoke a mental incapacity decision in those patients who regain their mental capacity during any periods outlined above [13].

However, dementia is a neurodegenerative condition with progressive cognitive deterioration. As a result, if the lack of mental capacity is secondary to the disease process, it will unlikely be reversed. The concept of best interest decision should apply in such cases where another person is legally appointed to make decisions on behalf of the patient with mental incapacity [3]. There are several options on how to do this legally, namely appoint a responsible carer via a guardianship application or a court appointed curator via the processes of interdiction or incapacitation as described in Table 1.

Guardianship has the potential to be a good solution to reduce medicolegal issues associated with decision making in patients without mental capacity. The advantage of Guardianship over POA is that Guardianship can be done even if the patient lacks capacity; a doctor can apply for it as opposed to a POA which is taken care of by lawyers or notaries; and there is a designated board which monitors the action of the guardian. If POA is absent and there is established lack of capacity, there is also the option of incapacitation or interdiction. However, the process of incapacitation and interdiction has to go through the court proceedings which may prove to be lengthy and expensive for the patient’s carers. Moreover, the latter are more restrictive in the rights of the patients since they generalise mental incapacity. On the other hand, we know that mental incapacity is often decision specific. In fact, guardianship gives one the opportunity to highlight which area of capacity is lacking and to what degree. For instance, capacity in the medical report of the guardianship application is divided into three categories: decisions pertaining to (1) personal health care, (2) lifestyle/accommodation choices and (3) financial and legal affairs. These are further subdivided into simple and complex decisions [17].

However, there are inconsistencies between the MMHA and the Maltese Guardianship Act which might lead to confusion amongst the caring team on how to approach decision making. For instance, as opposed to the MMHA, the guardianship act does not specify who are the specialists who can fill the medical report [16, 17]. The dilemma arises since the guardianship application requires a mental capacity assessment which according to the MMHA can only be done by psychiatrists. This often causes confusion or reservations amongst doctors other than psychiatrists on whether or not they can fill out such forms. On the other hand, it is the guardianship board’s responsibility to process the applications and they have a right to appoint any experts when in doubt [16]. Moreover, a formal mental capacity assessment by a psychiatrist can be requested before applying for guardianship and this could be included in the medical report. In fact, 71.4% of the patients who had a guardianship application in this study, had a formal mental capacity assessment by a psychiatrist. On the other hand, it might not be practical to request a psychiatry assessment for every patient with dementia, especially when it would be quite evident that a patient lacks capacity. In fact, the patient’s caring physician might be more than capable to ascertain whether a patient has mental capacity to make a specific decision, especially in the later stages of diseases. In fact, in the UK, any HCW can do an MCA since the components needed for mental capacity are stated clearly in the Mental Capacity Act 2005 [3, 23].