The rights of next of kin

Many next of kin are an important resource in the treatment and care of those closest to them, but they may also have needs for support and help in order to cope with their own life situation.

Foto: Johnér Bildbyrå AB

Although medical personnel have a duty of confidentiality, there are many cases where next of kin also have a right to information. All next of kin always have a right to general guidance, and listening never breaches the duty of confidentiality.

Next of kin are also entitled to receive information when:

  • The information is already known.
  • The patient or user consents to it.
  • When "the circumstances warrant" the disclosure of information, for example in an emergency or if the patient is unable to give their consent.
  • When the patient is obviously unable to look after their own interests.

Parents also have a right to information concerning their children until the child reaches 16 years of age, or until they reach 18 if the information is necessary in order to fulfil the parents' parental responsibility.

It is the next of kin who is entitled to receive information. The patient or user is entitled to designate their immediate next of kin. If a person is unable to designate their immediate next of kin, it must be the person who has known the patient for the longest period of time. 

Talk to someone

Next of kin can often struggle with grief, trauma and uncertainty. They can experience isolation and loss of their social network. Some incur financial expenses directly or indirectly linked to being the next of kin of someone who has an illness or impaired functional capacity. For some next of kin, this can lead to consequences in the form of mental and/or physical problems.

For many next of kin, sharing their experiences and perceptions with other people in similar situations can help them come to terms with their own situation.

The general practitioner (GP) can be a natural place to start when looking for help. Doctors have a duty of confidentiality and can act as a discussion partner. Your GP will also have an overview of the help that is available locally, and may be able to refer you to a psychologist/psychiatrist/specialist health service.

Next of kin – A resource

Next of kin often know a lot about the patient and are part of their intimate circle of friends and relatives/next of kin. However, the capacity of next of kin to act as a resource person for the patient varies, and it is important that you as next of kin take care of your own needs.

Many next of kin are important care providers and perform many care-related tasks. 

Next of kin have many different roles

​Next of kin will perform a wide variety of roles in relation to both the patient themselves and the health service.

Next of kin as a source of knowledge

Next of kin often possess a lot of knowledge which can be important in investigations, treatment and rehabilitation of the patient. Next of kin know the patient's background and have experience of how certain measures work.
The next of kin's knowledge of the patient is therefore not just important as regards the treatment, but can also provide a basis for a good collaboration with medical personnel.

Next of kin as care providers

Next of kin are often the patient's closest and most important care providers. On occasions, next of kin also act as the treatment provider's assistant, for example by assisting the patient in following up a recommended treatment. Next of kin also represent stability, irrespective of the development of an illness or the replacement of medical personnel.

Next of kin have no legal obligation to care for those closest to them if the patient is over 18 years of age. It is a voluntary role which requires the next of kin to be given sufficient information about the patient's medical situation, as well as the necessary support, respite, guidance and advice in relation to the tasks that must be performed.

The patient's representative

There may be situations where a patient is unable to look after their own interests. In such cases, the next of kin can take on the role of patient representative and act on behalf of the patient.

The role of patient representative can follow from:

  • Parents representing their under-age children.
  • Next of kin being appointed as a guardian or assistant guardian.
  • Immediate next of kin representing the patient because the person concerned is unable to give their consent, because the circumstances warrant it or because the person concerned is unable to look after their own interests.
  • There is a written power of attorney from the patient/the patient wants their next of kin to represent them.

As the patient's representative, you are entitled to receive information, to give your views on medical care, to appeal against decisions and to be involved in the provision of medical care.

Limited involvement as next of kin

Some next of kin have a need to say: "I don't feel up to being involved".

The patient's next of kin may also be in a situation where they do not have the opportunity, desire or capacity to become involved with the patient. Next of kin who want only limited involvement can still benefit from the services that are available for next of kin.

There are also cases where for various reasons the patient wants only limited or no contact at all with their next of kin. This can present challenges for many next of kin.

When the relationship between patient and next of kin is difficult, medical personnel can assess whether they can help to improve the situation by offering general guidance.