Healthcare and decision-making in dementia
Part 3 of the consolidating Act of Health (No. 95) of 7 February 2008  includes a clause which states that the patient's dignity, integrity and right of self determination must be respected. This reflects the approach to decision making in the healthcare context.
Consent to medical treatment
Part 3 of the consolidating Act of Health contains the rules about Patients' Legal Status (N° 95) of 7 February 2008 stipulates that no treatment may be initiated or continued without the informed consent of the patient. This is not limited to patients being treated in a hospital but covers patients who are receiving or have received treatment in any place where health care is carried out. Treatment is to be understood as meaning examination, diagnosis, treatment of illness, professional health care or preventive measures. For consent to be valid, it can be given in writing, verbally or according to the circumstances but it must be based on the patient having been provided with the necessary information from the health care provider. Once given, consent can be withdrawn at any time.
However, in the case of dementia, the patient may be unable to give informed consent. §18 of the law stipulates that the closest relatives of a patient, who permanently lacks the ability to give informed consent, can give it on his/her behalf. If the patient is under guardianship, the guardian can give consent on his/her behalf. The law states that the person who cannot give informed consent must be informed and involved in the deliberations to the extent that he/she can understand and that this would not cause injury. This includes taking into account the person's views if they are current and relevant.
For those who do not have relatives or a guardian, the health carer can provide the necessary treatment provided that another independent health carer gives approval. If the treatment is of a minor nature, approval is not necessary. Section 4 of §18 envisages the case where a relative or guardian might use the power to consent in a way which could result in injury to the patient or which might jeopardise the treatment. If the health provider feels that this is the case, he/she can proceed with the treatment, provided that approval is obtained from the relevant official medical institution.
Consent in case of emergency
In the case of emergency treatment, a person who is temporarily or permanently unable to consent can be treated even in the absence of authorisation from relatives or guardians.
Consent to clinical trials
According to §12 of Act No. 402 of 2003 on Scientific Ethical Committee System and Treatment of Biomedical Research Projects, a person with impaired capacity can take part in biomedical trials with informed consent from the closest relatives and the general practitioner, alternatively the medical officer of health or a guardian with competence to give consent in these situations as stated in §5 of the Guardianship Act of 2007.
The legal status of advance directives
Advance directives have legal status in Denmark according to the consolidated Act of Health (No. 95, 2008). They are legally binding in certain circumstances and advisory in others. Some people express their future wishes in powers of attorney documents. Such wishes are not legally binding but may serve as guidelines for the attorneys who have been appointed.
Conditions surrounding the writing, validity and registration of an advance directive
Any person over the age of 18 who is not already under guardianship can write an advance directive. Capacity is presumed. It is not necessary to involve a doctor or notary. There is a registration procedure in that advance directories must be sent to a Central Registry. The registration procedure currently costs about Euro 7. The validity of advance directives is not limited to a set period of time.
What an advance directive can cover
Such a will may specify:
- That life prolonging treatment would not be desired if the testator were facing unavoidable death;
- That life prolonging treatment would not be desired in case of illness, advanced debilitation due to old age, accidents, heart failure or similar situations that cause such a severe invalidity that the testator would be permanently unable to take care of him/herself physically and mentally.
Life prolonging treatment is described as meaning treatment where there is no outlook for cure, improvement or alleviation but only to a certain prolongation of life. If a health professional is considering giving life prolonging treatment to a person who is unable to consent, he/she must consult the will Registry to check whether the person has made one. Wishes in line with number 1 above are legally binding and must therefore be respected whereas wishes in line with number 2 above are merely advisory but must be registered in the medical notes.
Obligation to comply with instructions contained in an advance directive
A person may specify in an advance directive that life-supporting treatment is not desired should they be facing unavoidable death i.e. where there is no outlook for cure, improvement or alleviation but only to a certain prolongation of life. In such cases, doctors must consult the Will Registry to check whether the patient has made an advance directive. If so, it is considered as legally binding.
A person may also or alternatively specify in an advance directive that life-supporting treatment is not desired in case of illness, advanced debilitation due to old age, accidents, heart failure or similar situations that cause such a severe invalidity that they would be permanently unable to take care of themselves physically and mentally. In such cases, doctors must again consult the Will Registry to check whether the patient has made an advance directive. If so, it is considered as advisory.
If a person expresses wishes just before losing capacity which differ from those contained in the advance directive, doctors normally take these wishes into account.
Amending, renewing and cancellation of advance directives
An advance directive can be amended or cancelled at any time simply by informing the Will Registry. This can be done by a person with and presumably without capacity (provided that they have sufficient capacity to be able to inform the Will Registry).
Access to information/diagnosis
The right to be informed
Part 3 of the consolidating Act of Health contains the rules about Patients' Legal Status (No. 95) of 7 February 2008. Patients have the right to receive information on their state of health and on different possibilities for treatment including the risk of complications and side effects. This should therefore include the obligation to inform the person of his/her diagnosis. He/she should also be given information on relevant preventative treatment and on the kind of care that can be provided. The consequences of not implementing a particular form of treatment should also be given to the patient and if a patient is unaware of certain facts which are considered to be important in order to make a decision, the medical professional should provide this information.
Access to medical files
Chapter 8 of the consolidating Act of Health (No. 95) of 7 February 2008 covers the right of access to patient case records. This includes records kept in hospitals, clinics, outpatient clinic, in private practice or in connection with treatment received at home. If a person wants to gain access to such information he/she submits a request to the relevant person or authority who is obliged to provide an easily understandable report which should include:
- The information which is being kept
- The purpose of the treatment
- Who has access to such information
- Where the information came from
The relevant authority, institution or health professional who has the patient's record determines whether he/she will be granted access to it. Access can be limited or denied if it is considered that it would be in the best interests of the patient to do so, or in order to protect the private interests of others.
The doctor’s right to withhold information
Regarding the right of access to patient case records (mentioned above), access can be limited or denied if it is considered that it would be in the best interests of the patient to do so, or in order to protect the private interests of others.
The patient’s right to refuse information
If, a patient does not want this or other information relating to treatment, he/she can refuse it. On the contrary, if such information is required, it is the duty of medical professionals to explain what an illness involves, the examination and treatment being considered in a considerate manner and one which is adapted to the individual's age, maturity and experience, etc.
Confidentiality/disclosure of information to other people
§40 of the consolidating Act of Health (No. 95) of 7 February 2008 grants the patient the right to confidentiality from a health carer during the performance of his/her duty with regard to health conditions, strictly private situations and other confidential information. Medical secrecy is also covered in the Practice of Medicine Act. However, information can be disseminated to others with and without the person's consent under certain conditions.
Nevertheless, if a person, such as a health professional or researcher, wrongfully disseminates confidential information about a person's health or other related information, he/she would be liable for punishment according to §§ 152-152f of the Penal Code.
Information relating to the patient's state of health, strictly private conditions and other confidential information linked to treatment can be disseminated to other health carers, provided that the patient has consented to this. The same information can be disseminated without the patient's consent if it is necessary for the progression of a treatment or for the justified care of the patient and if this corresponds with his/her interests and needs. Such information can also be passed on to a substitute doctor (according to §41 of the consolidating Act of Health, No. 95 of 7 February 2008).
Health carers can give the above mentioned information to authorities, organisations, private persons and others if the patient has consented to this, but can also provide such information without having consent if this is considered necessary in the public interest or as a result of significant concern to the patient, the health carer or others (§43).
Information about the illness as well as the cause and manner of death of a patient can be given to the nearest relatives of the deceased, provided that it may be assumed that this would not be contrary to his/her wishes. However it can be given without consent if it is judged to be necessary to others (§45).
According to § 14, for the purposes of the consolidating Act of Health, No. 95 of 7 February 2008, if the patient is unable to take care of his/her interests, the person or people who are legally authorised to act on his/her behalf can intervene to the extent necessary to protect the patient's interests. This means that in instances which refer to consent to the dissemination of or access to information, a near relative or a guardian is allowed to consent to such dissemination or access on behalf of a person with dementia.
Dissemination of health information for special purposes
Information on an individual's state of health and other personal information from a patient's case records can be revealed to researchers for the purpose of biomedical research. Permission for the project must have been obtained in accordance with the Danish Act (N° 402 of 2003) on a Scientific Ethical Committee System and Treatment of Biomedical Research Projects (and subsequent amendments). If not covered by this law, researchers engaged in research projects of significant social interest may still be granted access to information on the approval of the National Health Service.
Once personal and health information has been obtained in this way, it cannot be used for anything other than statistical or scientific purposes. If results of the research are published, it must be done in a way, which makes it impossible to trace the information to particular individuals.
Palliative care (and the issue of double effect)
§25 of the consolidating Act of Health, No. 95 of 7 February 2008 also allows for the use of certain palliative treatments, which can have the side effect of accelerating death. The law states that "a fatally ill patient can receive the pain killing, tranquillising or similar means necessary to alleviate the patient's condition, even though this can lead to an acceleration of the time of death." This is known as the "double effect" and is only legal if the acceleration of death comes about as a side effect. The treatment must not be initiated or maintained with the sole purpose of shortening the patient's life. Furthermore, the doctor must treat each patient on an individual basis as opposed to increasing the dose automatically. For patients who are unable to consent, the decision for such palliative treatment is the doctors, but preferences could also be included in the advance directive.
Special leave to care for a terminally ill person
According to chapter 23 of the Consolidation Act on Social Services, carers are entitled to paid time off work to care for a terminally ill person who wishes to die at home and for whom hospital care is not needed. A special allowance may be allocated in the case of carers who are not in paid employment (Jensen, 2007).
Passive euthanasia was incorporated into Danish law in 1992. In 1998 the section on advance directives was incorporated into the Law on Patients' Legal Status, now the consolidating Act of Health (No. 95) of 7 February 2008. The patient's right to decline treatment which merely serves to prolong life without offering any possibility of cure is in effect a form of passive euthanasia in that the doctor must in principle desist from pursuing it. Please refer to the section on advance directives for further details.
Merete Jensen (2007), Chapter on Denmark. In Alzheimer Europe (2007), Dementia in Europe Yearbook 2007 , Alzheimer Europe
 Bekendtgørelse af Sundhedsloven nr. 95 af 7. febr. 2008
Last Updated: mercredi 27 avril 2011