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Advance care planning

In the early stages, disease treatment often still focuses on complete cure or recovery. But when complete cure is no longer possible, it becomes important to tailor care and treatments to the patient's needs.

Patients, relatives and healthcare providers can discuss this using a guide to advance care planning.

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What is advance care planning?

Thinking and making decisions about your current and future care and treatment is called advance care planning. You do this together with your loved ones, your treating doctor and the care team around you.

Although the medical field is constantly evolving, we also encounter the limits of treatment. In such situations, it is important to focus on your personal needs and treatment preferences.

How do you view your care and treatment? What are your wishes if your condition becomes incurable? What if you are no longer able to express what you want?

It can be very useful to think about these matters in advance and align your wishes with your loved ones. If you wish, the care team can assist you with this.

 

When to start advance care planning?

In practice, advance care planning typically begins when you are faced with a serious diagnosis or need to make decisions at a certain point in your illness.

However, you can also start while you are still healthy, for example, by discussing it with your GP.

When you are admitted to hospital, we want to understand your views on your illness and treatment. By discussing these together, we get to know you better and can support you in making the right decisions for you.

 

Whom can you talk to about advance care planning?

Discuss your wishes with your loved ones. They play an important role if you become unable to make decisions.

Do you have doubts about how best to approach this? Let us know. Your care team can provide advice and assistance.

Concrete arrangements are always discussed with your treating physician or GP.

 

How can you engage in advance care planning?

Verbally: discuss it

According to the Patient Rights Act of 2002, you must give your consent before a doctor can start treatment, and you can also refuse treatment. Talk to your care providers about your current and future care and treatment preferences. They will record them in your medical file.

In writing: advance directive

You can prepare documents for situations where you might no longer be able to participate in decision-making. Writing down your wishes is called an advance directive.

If you have not discussed your wishes with your treating physician in advance or prepared an advance directive, and you do not have an appointed representative, your treating physician will discuss medical decisions with your loved ones in case you become incapacitated.

‘Loved ones’ are categorised in a legal hierarchy: first, the legal guardian (if one exists), then your cohabiting partner, your adult child, your parents, your adult sibling, and the involved healthcare professional after interdisciplinary consultation.

 

Advance directives

There are five legally recognised advance directives you can prepare in advance:

  • Advance directive to refuse treatment: negative advance directive
  • Advance directive regarding euthanasia in cases of irreversible coma: positive advance directive
  • Advance directive regarding organ donation
  • Advance directive to donate your body to science
  • Last will and testament (also known as a certificate of burial arrangements and/or rituals)

Below, you will find information on the first two types of advance directives. If you have questions about the other advance directives, you can contact the social worker for your department.

Since a patient must always give consent before a treatment can begin, they also have the right to refuse treatment. They can communicate their refusal verbally to their doctor, but they can also document it in writing in a “negative advance directive.” This advance directive can be used if, in a future situation, they are no longer conscious or able to express their wishes (e.g., in cases of dementia or coma).

  • The negative advance directive is legally binding for the doctor, meaning they are required to follow it.
  • The negative advance directive is valid indefinitely and can be amended by you at any time.
  • You can find various examples of this type of advance directive online that you can print. There is also an example provided in the patient brochure 'Advance Care Planning'.

With the positive advance directive, you request an action from the doctor. However, it is not legally binding, meaning the doctor can refuse to comply.

  • The positive advance directive is valid indefinitely.
  • There is a legal form for the positive advance directive, which you can request from a healthcare provider or obtain from your commune. You can also download and print it yourself via health.belgium.be.

The positive advance directive is primarily intended for situations where you may later find yourself in an irreversible, long-term coma, for instance, following an accident, cardiac arrest, or stroke. It is not the same as a current request for euthanasia, which you must document as a conscious and present request for euthanasia. For more information, refer to the brochure 'Decisions regarding serious illness or end of life'. You can request this from the healthcare provider for your department or access it here.

 

How can you include your wishes in your medical record?

Electronic medical record

In your electronic medical record at UZ Leuven, there is a central section where your doctor and other healthcare providers can record your current and future wishes. Provide your advance directives to your treating physician, who will ensure they are scanned into your electronic record.

It is important to discuss your advance directive with your doctor to clarify your precise motives and expectations.

Also, talk about it at home with your loved ones and your GP.

Original documents

It is best to keep the original documents yourself. Make enough copies of the advance directive so that you can provide them to important care partners (family members, GP, hospital, care home).

The advance directive regarding euthanasia can also be registered with your local commune, but this is not mandatory.

 

Translating your wishes into your medical care plan

What is documented in your advance directive, along with what you discuss verbally, is translated by the doctor into a medical policy, outlining what will and will not be done in your treatment.

Your medical record will include a code for therapeutic limitations. This is an important code, established by your treating physician, specifying which treatments will or will not be carried out. Examples include: no resuscitation, no admission to intensive care, no initiation of antibiotics, comfort care only, etc.

The purpose of filling out therapeutic limitations is to avoid medically futile actions. These limitations are crucial in urgent situations and for doctors caring for you in the absence of your treating physician.

As a patient or family member, you cannot demand a medically futile treatment from your treating physician. Stopping or not initiating a medically futile treatment can have a significant emotional impact. This is why it is important for your doctor to discuss this with you and your family in advance, so everyone is prepared for possible acute crisis situations.

 

Adjusting your wishes

Advance care planning is not a one-time conversation or a one-time documentation of your wishes and needs.

If, during the course of your treatment or life, you wish to redefine your future care and treatment preferences, do not hesitate to discuss this again with your doctor or another healthcare provider. Agreements can then be reviewed or modified.

Contact

If you have any further questions, feel free to contact:

Last edit: 1 December 2024