Advance Care Planning in Mental Health

The historical evolution of the incorporation of rights into the care model and the paradigm shift of the community care model, active participation and the incorporation of the person's rights into the care model will be the foundations that guarantee equity in care for people with mental health problems.

Part of the human rights framework that regulates how people diagnosed with a mental disorder should be cared for is based on the Convention on the Rights of Persons with Disabilities , adopted by the United Nations in 2006 , which includes in its Article 3 the principle of "respect for inherent dignity, individual autonomy including freedom to make one's own choices and independence of persons."

The World Health Organization (WHO) and international mental health policies also advocate for a recovery- based care model and community-based approach, promoting the empowerment of individuals and families by placing them at the center of decision-making.

The right to decide in the context of mental health

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One of the care models with evidence of effectiveness in achieving an integrated and continuous health system is the Collaborative or Cooperation Model .

These models include decision-making tools, such as advance directives , taking into account the preferences of the person being cared for, and being prepared to offer other therapeutic options.

Advance Decision Planning (ADP) It is then defined as "a deliberative and structured process through which a person expresses their values, desires and preferences and, in accordance with these and in collaboration with their affective environment and their reference care team, formulates and plans how they would like the care they should receive to be in the face of a situation of clinical complexity or serious illness that is expected to occur within a certain and relatively short period of time, or in an end-of-life situation, especially in those circumstances in which they are not in a position to decide" (Generalitat de Catalunya, 2016).

The PDA strengthens the relational and dialogue process between professionals and users of mental health services

Introducing the use of PDA in the field of mental health creates opportunities to improve the quality of life of the person, promotes development and facilitates the relationship of trust and dialogue between the person and the professional team, turning the person into an active agent, favors autonomy and empowerment in decision-making regarding their health, and consequently the alliance between the different parties involved in the prevention of relapses.

Mental health associations, both those directly affected and their families, value Advance Care Planning as a way to provide support and response to relapses or crises. This is based on the understanding that in times of great psychological suffering, when the ability to make decisions is temporarily diminished, people may find themselves in a vulnerable situation, at risk of having their rights violated, such as not respecting their decisions or preferences regarding care and how the problem is addressed.

In this sense, the PDA, through a structured deliberative process, takes into account the values ​​and preferences according to how the person wants healthcare to be during hospitalization or stays in health services, and also allows us to identify warning signs, symptoms and express actions that help or do not help the person feel well, visit preferences, preferences regarding professionals, preferences in therapeutic actions and personal habits.

The PDA in mental health is a clear indicator of the paradigm shift in the care model

The Advance Decision Planning model serves to promote and guarantee the person's capacity for self-determination in conditions of clinical stability even in the midst of a crisis.

To achieve this paradigm shift, it is necessary to ensure support throughout the administrative adaptation process in all health and social services, guaranteeing that the organizational measures implemented respond to preferences, values, and needs from a holistic perspective, while simultaneously granting autonomy in decision-making and adaptation. To this end, close coordination between the care network and other healthcare settings across the region will be crucial, as well as at the micro level, linked to individual health, emphasizing shared responsibility and well-informed co-decision-making.

It is essential to raise awareness among professionals about the advantages and limitations in relation to the expectations of PDA, as well as the involvement of all agents to design future actions that introduce PDA, not only as a tool, but as a change in the relational philosophy within the field of mental health: a commitment to the future that must contribute to the fulfillment of the New York Convention.

What conditions are necessary to complete the Advance Decision Planning process?

• Voluntariness: the person decides.
• Information: the person must be informed of the objectives and limitations.
• Stability: The person must be in a state that allows them to make decisions. If their competence is compromised, they will need the support of a representative or mentor.
• Dynamism: the PDA will be reviewed periodically.
• Revocability: the person can cancel the PDA.

In this last condition, their representative or contact person will participate in decision-making, but always facilitating and encouraging the person's participation in those matters in which they may still have sufficient decision-making power.

• Representative: designated by the person to replace them in decision-making.

• Referent: linked to the person, may not have been designated by the person, but assumes responsibility in decision-making and in everything related to receiving and sharing information with the healthcare team, provided there is no designated or legally established representative, and when the person has compromised competence.

It is important to know that the preferences expressed in the PDA are not legally binding, but ethically binding, and that is why it is so important to develop it in collaboration with the team of professionals.

Professionals should have the following skills and attitudes:

• Empathy: adopting the other person's point of view, understanding their thoughts and feelings, and successfully conveying this attitude to the person being cared for.
• Respect: show respect at all times for the person's decisions, and avoid making moral judgments or questioning their beliefs.
• Active listening: fundamentally non-verbal, open and receptive to the person's questions, and avoiding false expectations.
• Warmth: showing an attitude of emotional closeness, cordial, not defensive.
• Personalizing messages: every person is different. Avoid generalizations and adapt at all times to the individual's unique characteristics, respect their pace, and avoid technical jargon.
• Proactivity: willingness to help, acting in a planned and proactive manner.
• Honesty: not being afraid to acknowledge one's own limitations in order to answer possible unexpected questions or those that are beyond the professional's knowledge.

What content can be included in a PDA document?

• Appointment of one or more persons to act on your behalf.
• Name people to notify or not notify, as well as their visit preferences.
• Describe warning signs or symptoms prior to a crisis situation related to your mental health problem.
• Indicate actions that make you feel better or worse.
• Preferences regarding medication, therapeutic actions and interventions, containment measures or coercive measures, as well as professionals.
• Information on dietary preferences, hygiene, sleep habits, religious or spiritual habits, meditation practices or cultural aspects, among others.

When and who should initiate the process of developing an Advance Decision Plan?

It starts from either of the following:

• The user of mental health services reactively proposes to the relevant professionals the performance of a PDA, requesting information and even providing information on the subject and expressing preferences regarding the current or future care received.

For example, it can be based on the previous experience of a crisis related to their mental health problem.

• The professionals who are the person's references should encourage the development of the PDA by adopting a role of information, support and accompaniment, respecting the person's wishes at all times.

Once the decision is made to create the PDA document, a dialogue process between the person and relevant professionals is necessary. It is recommended to do this at a time that allows for good communication and reflection so that the person can:

• Express your values ​​and care preferences.
• Choosing their representatives and their roles.
• Specify other people involved in its application.

Stages of the deliberative process of Advance Decision Planning

Preparation

Establish the time to make the formal proposal to start the process.

The professional must also be in an appropriate moment from an organizational and emotional point of view.

Keep in mind the timeline for the different stages of the process.

Proposal

At the chosen time, the professional should propose to the person that they begin a PDA process:

• Having the basic information available: what the PDA is, why it is important, who can participate in the process, the importance of recording it in the medical record, etc.
• Assess PDA limits and objectives that are intended to be worked on.
• Clarify any doubts that may arise.
• Collect and record their acceptance or rejection. However, it should always be kept in mind that the person may change their mind in the future.
• Schedule the day and location of the first meeting.

Decide with the person the details of this meeting: will someone accompany them, will other professionals participate, etc.

Dialogue

Since the PDA process is continuous over time and evolves with the person, it can never be considered finished.

It is advisable that the first meetings of the process be monographic, focused exclusively on this topic.

Choosing the space

A quiet, comfortable space, free from interruptions and guaranteeing confidentiality. The person's immediate surroundings or home is ideal.

Participants in the meeting

Sometimes it is useful to conduct interviews in a multidisciplinary way; there should always be someone to lead the group and ensure the internal consistency of the dialogue.

In other cases, it is preferable to have only one professional present during the interview, as some people may feel self-conscious about discussing personal matters.

The person can decide whether to do the PDA process alone or accompanied, and the designation of a representative.

Meeting format

Always with flexibility and open dialogue, the conversation must be adapted and focused on what most concerns or is relevant to the person.

Areas of discussion during the development of a PDA

They can be grouped into the three areas:

1. Knowledge and perception of health status

2. Values ​​and experience of the person

3. Concrete decisions

It is recommended to work on the three areas following this order, which allows you to progress from the more general aspects to the more specific aspects.

It is important that, as different decisions are discussed, the person's expectations are adjusted to the real possibilities of decision-making.

Proposal for the next meeting

Given the large number of aspects to be addressed throughout a PDA process, it will be difficult to cover them all in a single interview, and it may even be inappropriate.

At the end of each meeting, it is recommended to explore the person's experience, learn their opinion on how it went, and discuss aspects that could be improved in the next meeting.

It is important for professionals to moderate their proactivity and their leadership and initiative. It is preferable for the patient to lead and set the pace of the process. It is essential to ensure that the person wants to continue the dialogue, and in this context, overly proactive attitudes may be inappropriate.

The meeting ends when:

• The allotted time has expired.
• At the person's request.
• Non-verbal expression of discomfort, blockage, emotional saturation, exhaustion of capacity or concentration, whether of the person or the professional.
• The content is redundant.
• If necessary, allow time to reflect on and integrate the topics discussed.

Validation

The professional and the person:

• They summarize the conclusions and agreements reached.
• Joint reading and evaluation of the record.
• They validate the agreements reached.

Record

All encounters are summarized and recorded in the person's medical history.

The PDA is the final written summary that outlines the essential points of the process and the agreements reached with the individual. We can also use a registration template.

In order for the PDA process not to lose its meaning and to guarantee that the agreements established with the person will be respected, it is necessary that the process also be recorded in a way that is accessible to all professionals who may at some point participate in the care of the person.

If the person wishes, they can be given a copy of their medical record. This can be very useful if the person plans to move outside their local area, ensuring that their advance directives are respected if necessary.

Re-evaluation of Advance Decision Planning

The PDA process needs to be evaluated and reviewed:

• At the request of the person or their representative.
• In an evolving clinical change that warrants it.
• Significant changes in the person's situation, such as changes in caregiver or representative.
• A change of professional or continuity.
• Review by the relevant Clinical Ethics Committee.

Apart from the situations mentioned above, it is advisable that the referring professional and the person periodically discuss PDA reviews.

The PDA includes the right to be modified, updated and cancelled when necessary.

What limitations might we encounter in the process?

• The legally non-binding nature.
• The limits of resource availability in the healthcare system.
• The lack of knowledge of the tool by mental health professionals.
• Paternalistic attitudes in the clinical relationship, the lack of recognition of the capacity of people with mental health problems to process them.
• It is necessary to avoid misuse of the PDA, in the sense of pressure exerted by the professional, family members or other people to get the person to give their consent in advance to the future use of certain measures or treatments.
• The use of this tool should not be reduced to merely signing the document. Such uses contradict the spirit of the document as a guarantor of the person's rights. All preferences expressed in the document, including those related to coercive measures or pharmacological treatments, should reflect the person's wishes.