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Be sure of the details of diagnosis, prognosis and available treatment options before talking to the patient. |
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Introdução
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Permission/check autonomy |
The patient should be asked whether he wants to be involved in decision-making or if he prefers the team to talk to a family member. |
“Would you like to talk about this alone or are there other people you would like to include in the conversation?” |
Establish a rapport with the patient |
Build a trusting relationship so that the patient feels comfortable talking about their desires and fears. |
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“Despite your condition, there are still many things related to care that we can do. I'd like you to feel free to talk so I can help you. Whatever may happen, you will not be alone.”
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“As your doctor, I want to make sure I'm doing the things that can help you.”
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Invite the patient to talk and understand the expectations for the future. |
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“Would you like to talk about what might happen ahead and how we can make sure your preferences are respected?”
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“To align treatment options with your wants and needs, we need to know your preferences in some aspects. Do you wish to talk about them now?”
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“Do you think a lot about the future? What worries you? What are your expectations?”
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Identification of patient's perception of the disease, their values and desires
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Establish a starting point |
Check the understanding of patient and family about the diagnosis and prognosis and standardize the information so that everyone understands the current moment. |
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Explore life values and goals |
Understand the patient's concept of having a good life and their expectations regarding the treatment. |
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“What is most important to you right now?”
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“What worries you most about your situation?”
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“What has your life been like in the past year coping with the disease? What do you expect from the treatment?”
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“If your health situation gets worse, what are your most important goals?”
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Talk about possible dilemmas and care preferences |
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Introduce a conversation about treatment preferences, especially invasive ones: ask the patient if he has ever thought about how he would like to be taken care of and what types of treatment he would not like to undergo. Some people have previous experiences from relatives or acquaintances with resuscitation and intubation, and this may be a way to introduce the subject.
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Explain the risks and benefits of different treatment options. Clarify when invasive and artificial life support measures are beneficial and when they cease to be technically beneficial to become futile.
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“Has anyone close to you ever been through situations and/or treatments during the course of a serious and advanced illness that made you think about your end of life, in the sense of not wanting to undergo certain interventions, such as breathing through machines or being fed through tubes? These procedures cannot reverse the underlying disease, but there are comfort measures to relieve shortness of breath or other symptoms as an alternative.”
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“It would be important to know what types of care you would like to have. How and where do you imagine yourself spending your final days, weeks and months? You can already express your desires about this. In a more serious complication, you may be assisted in the emergency room by staff that does not know you well and may not know the details of your illness. If your family are not well informed about your care preferences, they will have more difficulties in deciding with the staff what would be best for you.”
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Decision-making and care planning |
Outline the care plan by aligning the available therapeutic options with the patient's preferences and priorities |
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“Given your goals and priorities and what we know about your illness at this time, it would be recommended to…”
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“You said that if your illness worsens, you would rather let nature take its course, unsupported by invasive measures such as cardiopulmonary resuscitation, mechanical ventilation and admission to an intensive care unit. I recommend comfort measures to control symptoms as a priority. Am I correctly stating your preferences?”
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“Unfortunately, targeted treatment for cancer has not proven to be more beneficial. Proceeding with more chemotherapy at this time may bring you more risks than benefits and is not recommended. Likewise, other invasive support measures, such as cardiopulmonary resuscitation, are not associated with improved quality of life in a worsening condition, with cardiorespiratory arrest. I recommend comfort measures as a priority. What is your opinion about that?”
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Action/ACP recording
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Document the decisions |
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Always record preferences in the medical record so that the entire team responsible for the patient has access to what has been discussed.
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Encourage and guide the patient to write their advance directive
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“These are important decisions about your possible treatments in the future. We must be sure about them, preferably by documenting them in writing, so that there are no doubts.” |
Identify the patient's healthcare proxy, if any |
If you feel it is appropriate, encourage the patient to talk to family members about their care preferences and choose a person to represent them when they cannot express themselves. If he does not want to choose a representative, he should be encouraged to share their preferences with persons of their trust who are close. Note: If the patient names various people, try to establish a main proxy. |
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“If you were unable to tell your doctors what kind of treatment you would like to receive, who would you name to represent you, talking about your wishes to help in decision-making with the health team?”
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“It would be important for people you trust to know your wishes and desires for the future.”
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Review the ACP |
This is the occasion to validate what has been discussed and offer the patient the possibility of reviewing the care plan at any time. |
“Would you like to review your care plan? Have any decisions changed after this last hospitalization? You can add or change information at any time.” |