Navigating Gray Areas

The representation of legally incapacitated adults is a complex and sensitive issue with both legal and ethical implications. The responsibility for decisions regarding living conditions, work, and health rests with their legal representative, which can sometimes be a family member or a professional. Yasmine Yagoubi and Tabitha van den Berg discuss various forms of representation for legally incapacitated adults and delve into the role mediators can play in promoting effective communication and conflict resolution among the parties involved. They employ two case studies, offering several practical suggestions for decision-making and conflict prevention for legally incapacitated adults.

BY YASMINE YAGOUBI AND TABITHA VAN DEN BERG

In the context of representing legally incapacitated adults, the Medical Treatment Agreements Act (WGBO) in the Netherlands distinguishes between court-appointed legal representatives, personally authorized agents, and non-appointed surrogates.1 The decision of the personally authorized agent carries the most weight, as this form of representation is most aligned with the patient's right to self-determination. In the ¨chain of will¨, the healthcare provider follows the decision of the representative, unless it is not compatible with the care that a competent healthcare provider should offer. The representative, in turn, follows the decision of the patient, provided that the patient can be deemed factually competent in that matter.2 In the case of personal authorization, the patient themselves transfers their decision-making authority to the person they have chosen.3

Good representation requires the patient's involvement in decision-making, where their autonomy and past decisions are respected.4 A deviation from these standards is considered 'poor representation'.5

Limiting the patient's self- determination is only possible in very exceptional cases. Out of due care, the patients factual competence should be reassessed and respected in every situation and with every decision.6 Involving the legally incapacitated patient in the decision-making process could mean that, in cases of differing opinions between the representative and the patient, the voice of the legally incapacitated patient becomes decisive, provided that this choice is not harmful.7 At times, involving a mediator or independent facilitator can help ensure that the balancing of interests and decision-making occurs carefully.

Specialized mediator;

A mediator or independent facilitator can play a crucial role in the communication triangle between legally incapacitated adults, healthcare providers, and legal representatives.

Through a 'patient-inclusive' approach, the mediator can contribute to improved relationships, better quality of care, and sustainable agreements.

Customization is essential. In a conflict involving a legally incapacitated adult, it's important to set clear goals and expectations, considering the unique circumstances of the patient. This also includes creating a safe and accessible environment where the legally incapacitated adult can express their opinion. The mediator can, for instance, ask questions that match the participant's level of understanding, use language suited to the cognitive abilities of the participant(s), and employ visual aids.

There are also situations where it is in the best interest of the patient not to involve them in the decision-making process, for example, when the issue is too stressful and burdensome, or it far exceeds the patient's level of understanding. However, completely excluding a legally incapacitated patient can also lead to problems such as feelings of fear, distrust, and lowered self-esteem. Therefore, in our view, involving the patient as much as possible in matters related to living, care, and well-being is always preferable.

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With a 'patient-inclusive' approach, the mediator can contribute to better care and improved relationships.

For practical insights, we spoke with Intan Awondatu and Nasira. These examples illustrate how a legally incapacitated adult can be involved and how their voice can be heard.?

Stories from the Field

Patient Advocate

Intan Awondatu is an MfN-registered mediator and a patient advocate under the Care and Coercion Act. The Care and Coercion Act regulates the rights concerning involuntary care or involuntary admission of individuals with intellectual disabilities and those with psychogeriatric conditions (such as dementia). The law provides for a patient advocate, who supports clients and/or their representatives in their legal position. The legal position of vulnerable individuals is thus further safeguarded. This is important because these people often have a strong dependency relationship with their healthcare or service providers.

You mentioned the layered relationship between the healthcare provider, the representative, and the client. Could you clarify how you, as a patient advocate, are involved in this?

As a patient advocate, I assist the client/ patient or representative in matters that arise between them and/or the healthcare provider, especially in cases of involuntary care. Formally, this is within the frameworks of the Care and Coercion Act, but in practice, other issues also come our way. I see myself as an amplifier of their voice. Resistance often manifests non-verbally. We take the time to get to know the person at the table and understand what they need. My advice is always: look beyond language, and especially beyond the texts in a file. My work starts with genuinely connecting, checking in, and taking the time to understand where someone wants to go. When I receive a request for a patient advocate, I don't even know about someone's legal or medical status. It's important to realize that even people with disabilities have opinions about what concerns them. You must not lose sight of that. Not being taken seriously or heard compromises a part of your humanity.

You work with people who need someone to amplify their voice, but there's a reason why they don't have a clear voice themselves. How do you handle this?

That varies case by case. For example, I have a client with acquired brain injury who lives in a residential facility. He had a complaint, so I went to meet him. Verbal communication proved to be almost impossible, but he could articulate himself excellently in writing, so we continued our communication via email.

In healthcare, a lot of value is attached to 'the verbal conversation' between the client and healthcare provider, but that's not the only way to give someone a voice.

It's important to look at what is possible with vulnerable people. I find that I can empower people by allowing them to regain control in a way that suits them. And sometimes, I also assist legal representatives.

Could you give us an example of a challenge that a legal representative might face?

One of my clients was the legal representative of his wife, who has dementia. She was admitted to a locked ward, and he encountered varying advice about what was and wasn't possible. He had always been an entrepreneur and was used to making choices himself. If he wanted to take his wife outside for some fresh air, the caregiver thought it was fine on Monday but then got pulled back by another nurse on Tuesday for lacking permission for a walk. In practice, agreements often aren't recorded in the care plan in a timely or accurate manner, causing confusion. This is a waste. You run the risk of becoming adversaries within the framework of the complaints or disputes procedure. Precious time and energy that would be better spent on good care!

Brother with Intellectual Disabilities and Autism?

Nasira (42) is a devoted sister who has long been supporting and guiding her 44-year-old brother with intellectual disabilities and autism. Currently, her brother, N., resides in a protected living environment where Nasira serves as his representative. From a young age, she has been closely involved in the care of her older brother, allowing her to accurately gauge his resilience and guide involved caregivers in finding the right approach to stimulate N. without causing resistance or unnecessary stress. Within N.'s care trajectory, a protected living project plays a central role. Here, he meets various group leaders. Nasira closely collaborates with N.'s primary mentor and maintains regular contact to share relevant information and gain valuable insights.

The essence of N.'s desire for dignity and self-determination is recognized, despite his limited ability to fully grasp the consequences of his choices. Subtly, Nasira steers N. toward decisions, with the aim of giving him a sense of influence. N. trusts Nasira as his reliable representative and regularly contacts her to verify his decisions.

N. transitioned to a protected living environment after always having lived with his parents. Due to the generation gap and limited awareness of autism, he had always been in a dependent position there. When N.'s father decided to retire and his parents planned to move abroad, it became apparent that placing him in a protected living environment was the best course of action and necessary.

Bridging the intercultural gap played an essential role in scaling up the care. Nasira acted as a mediator and emphasized the importance of clear future planning for individuals with autism.

After all, it would be selfish to leave N. to his fate after the passing of one of his parents without properly arranging the necessary care.

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How did you involve N. in the process of moving to a protected living environment? Due to his autism, N. lives very much in the present and finds it difficult to imagine a time when his parents won't be around. Thinking about an uncertain future is a stress factor for him. Therefore, I often chose not to disclose everything to him and prepared the entire transition to the protected living environment on my own. The whole process was uncertain and ultimately took three years. I wanted to shield him from the uncertainty and stress that this would entail. When the move to the protected living environment was finalized and it was time for him to see the house, I informed him.

What has changed in your lives since N. has been living in a protected environment? Our lives as family members have changed significantly. We are now involved in caring for N. about twice a week, whereas before it was a 24-hour commitment. Now that he is living independently in a protected setting, he has more social contacts and is no longer isolated. Mentally, he is also doing better and can handle more, which has allowed my mother to feel less guilty and enjoy life more.

Practical tips

It is the family members, working closely with healthcare professionals, who make a valuable contribution to the smooth operation of care for adults who are incapacitated. It's crucial to have respect for everyone's expertise, experience, and knowledge, as well as for the individual preferences and needs of the person involved. The importance of open communication with the most closely involved family members is emphasized, as they often have the best insights into the approach and can articulate the wishes of the individual.

Respect the Autonomy and Preferences of the Individual in Making Decisions About Care

To further illustrate this point, Nasira shared a specific example. In a situation where a behavioral expert was brought in to help with conflict management, the family advised approaching N. in an informal manner. By introducing the behavioral expert as a regular staff member who simply wanted to have an informal chat, perhaps over a cup of coffee, a relaxed atmosphere was created. This made N. feel comfortable and willing to share personal information, providing the behavioral expert with valuable insights for further investigation.

Recommendations for Healthcare Professionals:

1. ?Leverage the expertise of involved family members, who often have the best knowledge about the individual and their needs.

2.??? Respect the autonomy and preferences of the individual when making decisions about their care.

3.??? When involving specialized professionals, such as behavioral experts, it may be valuable to adopt informal and relaxed approaches to put the individual at ease and facilitate effective collaboration.

NOTEN

1.?????? Ex art. 7:465 lid 3 en lid 4 BW. De Wet op de geneeskundige behandelovereenkomst (WGBO) regelt de rechten en plichten van de pati?nt. Zo staat in deze wet dat pati?nten recht hebben op informatie en dat zij toestemming moeten geven voor een behandeling. Ook regelt de WGBO de privacy van de pati?nt, het inzagerecht van pati?nten in hun eigen medisch dossier en de vertegenwoordiging van pati?nten als zij niet zelf kunnen beslissen.

2.?????? Zie ook de folder Wie beslist als je dat zelf niet kunt? Op de website Patientfederatie.nl. Iemand met beginnende dementie of met een lichte verstandelijke beperking kan over bepaalde eenvoudige besluiten veel zelf beslissen. Het uitgangspunt is dat de pati?nt zoveel mogelijk zelf beslist.

3.?????? C.P.M. Akerboom e.a., Thematische wetsevaluatie wilsbekwaamheid en vertegenwoordiging, Den Haag: ZonMw 2011.

4.?????? Zie ook K. Blankman, ‘Meerderjarigenbescherming en (on)bekwaamheid’, Nederlands Juristenblad 2019/3.

5.?????? G. den Hartogh, ‘Een variabele standaard voor wilsbekwaamheid?’ in:

A.C. Hendriks e.a. (red.), Grondrechten in de gezondheidszorg, Houten:

Bohn Stafleu van Loghum 2010, p. 113-122.

6.?????? A. Lelie, ‘Verminderd wilsbekwaam – samen beslissen wat het beste is’, Medisch Contact 2002/40; A.C. Hendriks, ‘Is mijn pati?nt wilsonbekwaam?’, Nederlands tijdschrift voor geneeskunde2016/160.

7.?????? Art. 8.12 lid 4 Wet langdurige zorg.