Planning living will is a key element for the care and attention of people with advanced chronic diseases and their families. In recent years, models and proposals have been developed throughout the Spanish territory, such as in Andalusia or Catalonia, based on respect for the person and framed in quality care, taking into account their wishes, expectations and preferences.
The communication within planning living will has been shown to have important benefits when a terminal process of the patient is expected, since a shared decision-making process is established in a trusting environment, at the same time as it’s incorporated in to the family and relatives care planning. Addressing these issues effectively involves doing so at the moment when the patient still retains his decision-making capacity, that is, at the earliest time of his hospitalization. Doing it later may pose a greater risk of aggressive and unnecessary treatments.
Despite their high therapeutic value, professionals report great difficulties in maintaining a fluid communication with a terminally ill patient. In a recent Canadian study published in the journal JAMA some of the reasons for this difficulty are described as: uncertainty of the prognosis, fear of causing distress or perception of patients being unprepared to talk about it.
The Catalan Institute of Oncology (ICO), a world reference centre in the design and evaluation of public palliative care programs for the WHO, with Dr. Gómez Batiste at the helm, has designed a new model of palliative care at the Institute in which it is proposed that communication with the patient follow a strategy based upon open questions, considered key to detecting their basic needs: How do you feel? How do you perceive your current state of health? What are you worried about? What do you think may happen in the future? What do you think would help you fight this situation? What do you need us to do for you?
Dr. Gawande, in his book Being Mortal, also proposes some key questions that can help professionals have a quiet conversation about the end of life process. Faced with this open approach, there are those who propose a closed script with previously prepared themes. This can be quite a challenge due to the different barriers that have been expressed by professionals, such as the fear of eliminating all hope that the patient may have regarding his illness.
Both strategies have advantages and disadvantages: the open format allows the patient to express fears or questions that the professionals had not foreseen, and the closed format could facilitate professionals in asking potentially difficult questions. To illustrate the post, I leave the video in which Dr. Meier, a doctor at Mount Sinai Hospital and director of the Centre for the development of palliative care (CAPD) in the USA explains the 10 essential steps in communicating with patients and family members receiving palliative care:
- Review the patient's clinical situation.
- Prepare a decent, comfortable space with privacy and confidentiality.
- Present the attendees and comment with simplicity on the objectives of the meeting.
- Find out what the patient knows about his illness.
- Explore what the patient wants to know: ask/explain/ask. Ask about the required information.
- Explain the thorniest details required by the patient.
- Ask if they have understood the terms used and encourage them to repeat them in their own words.
- When faced with difficult questions such as: Am I going to die? Simple and clear answers: Yes, you will die and we will be permanently by your side, watching over your welfare to the maximum.
- Analyze the therapeutic options, without deceiving but without denying reasonable hopes.
- Organize and plan the next visit.
Communicating is also being able to know how to listen; it’s a key aspect in knowing what the patient's situation is at each given moment. For active listening to work, it’s better to move away from paternalism and facilitate the patient's participation in the decisions that best preserve their dignity and freedom.