What to do with advance care planning?
It is useful for everyone to think in advance about his or her care preferences: advance care planning.
It is always useful to pause and think about what you find important in your healthcare. Whether you are healthy or sick.
If one day you can no longer express your wishes yourself, for example in advanced dementia or coma, others sometimes have to make difficult decisions on your behalf. It becomes even more difficult if those close to you do not know your opinion.
Thinking about your wishes and preferences for your future care, and talking about them with loved ones and healthcare providers, that is advance care planning.
How do you get started?
It is best to start early care planning well in advance . In any case, start before you are no longer able to do it. What is important to you in the future?
- you wishes as a competent patient ( you are able to express your will and preferences yourself, and to realistically assess the consequences of your decisions)
For example: What does quality of life mean to you? What is your position on euthanasia? Who do you want as a confidant to assist you?
- your wishes if you become incapacitated (you are no longer able to express your will and preferences yourself, for example in the case of a coma or advanced dementia)
For example: Who do you want as a representative to exercise your rights as a patient if you are no longer able to do so yourself?
Discuss your desire to plan your future care with your treating physician and with family and/or friends.
Ask the person you choose to be your representative. Every moment is good to start a conversation.
Write down your thoughts about your preferences, values and wishes.
- You can write down your wishes as a competent patient on a simple sheet of paper.
- You can record your wishes as an incapacitated patient and your preferences after your death in the form of advance directives.
Ask for help where necessary. Also record the name of your desired representative and confidant. You can do this via existing forms. Keep all documents in a safe place.
Discuss your preferences with your loved ones and your healthcare providers and ask for an explanation if you do not understand something.
Early care planning gives you and your loved ones peace of mind , and provides caregivers with guidance to tailor care to your needs and wishes as much as possible.
Share your recorded preferences and wishes with others who need to know, for example: your loved ones, general practitioner, treating physician specialist, home nurse, psychologist, etc.
Keep the original for yourself and give a copy (with original signature) to others. Have the documents added to your patient file.
Advance care planning is not a one-time conversation, but an ongoing process of reflection and dialogue between you, your loved ones and one or more healthcare providers (including a doctor).
Frequently Asked Questions
Palliative sedation and euthanasia are two medical decisions at the end of life.
Palliative sedation is the intentional lowering of a patient's level of consciousness in the final stages of life. In this way, irreversible physical pain and psychological suffering are alleviated until the moment of natural death. The goal is not to end or shorten life.
Euthanasia is the intentional act of terminating life by a doctor at the express request of the (competent) patient involved. The goal is to eliminate suffering. To be eligible for euthanasia, you must meet a number of strict conditions.
Palliative care is not only about a peaceful end of life, but also and especially about living well after being confronted with a life-threatening condition.
Palliative care focuses on increased quality of life and comfort , and supports not only the patient but also their loved ones.
It is more than terminal care and starts much earlier in the disease process than the terminal phase of life. This care goes beyond just pain and symptom control: psychological, emotional, social, spiritual and existential needs of the patient and family also receive attention.
As long as you are mentally competent, you exercise your rights as a patient . However, you may need a person to assist you during conversations with doctors and other healthcare providers. This is your confidant : he or she will support you but cannot decide anything on your behalf. You choose your confidant yourself.
If you are incapacitated and can no longer express your will, you can no longer exercise your rights as a patient yourself. From then on, it is up to the representative to act on your behalf. You can determine in advance who will take on the role of representative. Are you not referring to anyone? Then the legal regulations apply.
You can indicate the following preferences in writing in advance:
- your care preferences if you become incapacitated (this means that you can no longer express your preferences, for example in the event of a coma);
- your preferences for after your death.
Those around you will take this into account as much as possible.
There are five official advance directives.
- Negative advance directive
You record which treatments and examinations (e.g. resuscitation, artificial respiration) you no longer want if you become incapacitated.
- Will euthanasia
You request in advance that euthanasia be carried out if you end up in an irreversible coma. Do not confuse this advance directive with the current request for euthanasia in the event of decisional capacity.
- Declaration for organ donation
You officially register with the municipality your wish to donate your organs after death.
- Donation of body to science
You choose to donate your body for scientific research after your death.
- Will interment
You record your wishes for your funeral ceremony and indicate which funeral you want (e.g. burial or cremation).
Palliative care aims to add life to days instead of days to life.