Consent

There is guidance in handling situations where the resident has difficulty expressing their will. As healthcare staff, we are not allowed to do anything against the resident's will. The resident's health condition means that consent cannot always be obtained. An example is when we work with environmental adaptation or protective measures.

It is only the resident themselves who can give consent. Neither relatives, guardians nor trustees can give consent to a measure that the individual is opposed to. No power of attorney applies to matters relating to medical decisions.

If the individual does not give consent, instead, the individual's situation must be carefully analyzed and alternative actions taken. The following can be read in the Social Board's presentation on the concept of consent in Communication 2, 2010.

Express consent
Consent can be explicit. It occurs when the resident actively either in writing or orally or through, for example, a nodding yes gives their consent to a certain action.  

Implied consent
Consent can be implied. This means that the resident implicitly shows that he or she consents, for example by facilitating the implementation of the measure  

Presumed consent
Another type of consent is the so-called presumed consent. It is based on the person who will take the action judging that the resident wants the healthcare staff to act in a certain way without the consent being expressed. In the case of hypothetical consent, the healthcare staff assumes that the resident would have consented to the measure if he or she had been given the opportunity to take a stand on the matter. This is used for example when a person is unconscious.

Probation

It is often necessary to involve relatives or others in the continued care. The care and care must be able to be planned so that the resident can be provided with measures. In these cases, a probation can be made based on the business routines. Probation is called when testing whether personal data can be revealed without it being to the detriment (to the damage) of the person the data concerns or their relatives. Probation is usually done by the responsible doctor or other licensed staff.

Environmental adaptation or safety measures

There is a risk that care in its quest to protect infringes people's freedom and rights. We regard all adult people as legally capable. This also applies to those affected by dementia. Therefore, it is important to be receptive to all situations that can be experienced as a constraint. Consent is fundamental. If someone cannot communicate, it is often possible to interpret the experience of, for example, a positioning belt.

A loved child has many names. Safety measures, limitation measures or environmental adaptation are all names for the same thing. The law is very clear that care and care are based on voluntariness, which means that the staff does not have the right to take measures against anyone's will. Therefore, it is important to plan the care so that the individual does not risk injuring themselves without using coercive methods.

The only institutions that have the right to use force are psychiatric inpatient care and then based on criteria that apply in the law on closed psychiatric compulsory care (LPT). There is also coercive legislation when it comes to the Act on Care of Young People (LVU) and the Act on Care of Abusers (LVM). This means that normally there is no legal support for restraint, locking, or coercive measures unless it occurs as a one-off event in self-defense.

There are a number of technical products that can be used to help the individual. For example, there are different types of alarms, positioning belts, bed rails and other things that, when used correctly, can be a good support for the resident. If the same measures are used against the resident's will, it becomes a coercive measure, as they limit his or her mobility regardless of the good intentions the environment had with the measure. It can, for example, be about being forced to shower or eat. For the resident, coercive and restrictive measures are often experienced as offensive and negatively affect the person's dignity and self-esteem.

It is always the resident's experience that governs. The purpose should be to help the individual. Protective measures must not be used to compensate for deficiencies in the business such as insufficient staffing. For people with dementia or who for other reasons have difficulty expressing their opinion, it can be difficult to get a verbal consent. Then the person's reaction must show if there is consent. In these cases, the question of consent cannot be handed over to relatives. Someone who sits and struggles with a positioning belt or tries to climb over a bed rail cannot be considered to have consented to the measure. If a resident climbs over the railing, there are often serious fall injuries.

These issues are discussed in the team to make a balanced assessment of which measures best help the individual. Often these measures are about preventing fall injuries. The measures are documented in the health plan for fall injury prevention and are regularly evaluated. Often there are other solutions. Instead of bed rails, it may be possible to use a bed that can be lowered to floor level so that fall injuries are avoided.

Relatives, legal guardians, trustees, managers or licensed staff do not have the right to decide against the individual's will. If the care identifies risks that cannot be managed by adapting the environment, the business must set aside the staff necessary to provide safe and secure care.

Locked doors

Locked doors that prevent the individual from getting out are a gray area. Although the Social Board does not allow the elderly's freedom of movement to be restricted with code locks or locked doors, many with dementia live in units that they cannot get out of themselves. But for people with dementia, a locked door can create anxiety.

The front door to a special accommodation can be locked, as is customary in most people's homes. The same applies to doors to units, but the lock must be designed so that the individual can unlock it themselves.

Using overly complicated locks that prevent the individual from opening the door is considered locking. On the other hand, the door can have a lock that takes a certain time to open. Alarms on the front door can be used to inform the staff that a person is leaving the residence.

The staff can then take care of the individual and divert the person through some suitable action. If the individual for some reason cannot open the door themselves, he or she must without delay be able to get help from the staff to open it.

People who disappear from the residence create anxiety for both employees and relatives. However, the entrance door to the house being locked is seen more as a normal phenomenon. However, it must not be impossible or very difficult to get out. The Constitution contains a general protection against deprivation of liberty that is not decided with the support of another law.

As an employee, situations arise where the work is conducted in a gray zone. In the long run, someone can be prosecuted for illegal deprivation of liberty. There may be situations similar to self-defense where you do not dare to let a person with severe dementia leave the residence in the middle of winter. Often it is difficult to let an employee go with the resident immediately. Then the care staff tries to shift the time or get the resident to think of other things.

There are attempts to find solutions. Some residences have only one entrance. To place activities and have staff who have an eye on the front door means a possibility to have supervision without having locked doors inside the house. When the door is locked, it often happens that a resident stands at the door and wants to get out. It can create discomfort for visitors, as they do not want to have a controversy with the resident.

With open doors, the problem ceases. There are larger areas for the resident to move on and more residents to socialize with. With decoration and design of the premises, the attention can be directed towards the garden instead of the main entrance. The alarms can be set based on the resident's conditions and some can roam freely in the house and garden.
The alarm then goes off if they leave the property completely. There are elderly homes without locked doors. Instead, elderly people with dementia carry a transmitter that alarms the staff's mobiles if they leave the house.

At night, there may be emergency situations where care staff must leave their unit to help a colleague take care of a resident or lift someone who has fallen on the floor. A locked unit can then be left empty.

Studies show that unlocked doors and digital technology correctly used can reduce the need to use anxiety-reducing drugs. Less time is spent on guiding back elderly people who have left the unit. Technology can be a support in the care of our elderly, but never replace calming hands and conversation. There are operations that have received criticism from the Social Board and IVO for people with dementia being left locked in certain periods.

Read more:

Coercion and restrictions, on the Knowledge Guide.
Zero vision - for a dementia care without coercion and restrictions, a training package from the Swedish Dementia Center.

Reflection - consent and environmental adaptation
Care staff:
• How do you handle situations where you have difficulty obtaining consent?
• Have you ended up in situations where a colleague or relative believes that you should do things that go against the resident's will?  
• What do you do if someone is anxious, sad and wants to get out of the unit?
• Do you have clear routines for how alarms, positioning belts, bed rails and tray tables may be used?
• Do you talk about coercive and restrictive measures in the team?
• Do you receive clear prescriptions for these measures?
• Do you have situations where your residents may feel locked in?

Manager, nurse, occupational therapist and physiotherapist:
• Do you have a good dialogue about environmental adaptation and safety measures?
• Do you have good teamwork for safety measures?
• How do you handle entrance doors, when someone is anxious and wants to go out?
• Do you have a well-functioning method when it comes to prescribing environmental adaptation?
• Do situations arise where you feel pressured to prescribe measures?
• Do you do written risk analyses?
• What can you do to increase openness in your residence?
• Do situations arise where employees end up in self-defense situations with residents who want out?

Residents and relatives:
• Are there occasions when staff do not ask how you as a resident want it?  
• What do you think about environmental adaptation?
• Does the business work well with these issues?

Erland Olsson
Specialist nurse
Sofrosyne - Better care every day