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Communication with the patient and family

Clinical Practice Guideline on Palliative Care in Paediatrics
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Question

What aspects of communication are considered useful when discussing with patients and families the appropriateness of therapeutic measures to the clinical situation of the child or adolescent in PPC?

Recommendations

  1. Professionals should strive to ensure that communication with the patient and family takes place in an atmosphere of maximum closeness and trust. The patient and family should perceive the team’s involvement and commitment to the patient’s treatment and care.
  2. Whenever possible, identify and appoint professionals of reference within the health care team to communicate with the patient and family.
  3. Clinicians should explore and ask patient’s and family’s preferences about what information they want to receive and how (interlocutor(s), frequency, level of detail, and complexity), and tailor communication to their needs, values, and culture at any given time.
  4. The information needs and preferences of the patient and family should be assessed regularly.
  5. Try to get to know the thoughts and feelings of the patient and family by asking them questions and listening respectfully to their answers. The team should value and respect the parents’ unique knowledge of their son or daughter.
  6. Show compassion and empathy, expressing concern for the patient and recognising the emotional distress and family difficulties involved.
  7. Meetings with the PPC patient and his or her family should be planned, with the following aspects prepared in advance:
    • Find a comfortable, quiet place with privacy, preferably with no physical barriers between people and without interruptions, and allow the necessary time.
    • Encourage the patient and family to prepare for the meeting by writing down in advance any questions, concerns or ideas they wish to raise during the meeting.
    • Identify, address and, if possible, resolve any disagreements between healthcare professionals before the meeting. If consensus is not possible, decide how to present the difference of opinion to the family and patient, and inform them of future actions to resolve the disagreement.
  8. When informing the PPC patient and family, the facts should be presented clearly and honestly, using language that is easy to understand. It is advisable to give key information in short sentences. It is then important to remain silent, giving the patient and family time to express emotions, and to share their thoughts.
  9. The emotions that the patient and family may be experiencing can make it difficult to understand and retain the information; so it may be necessary to repeat the information several times, and ask if it has been understood. It is recommended to invite the patient and family to the next meeting and to be available to repeat and reinforce the messages, and to clarify any further doubts.
  10. Before the end of each meeting, the PPC patient and family should know when they can expect to receive more information, and when they can next ask the clinicians about any questions they may have.
  11. The decision to tailor therapeutic measures to the clinical situation of the child or adolescent who has entered an advanced stage of the disease must be clear to all those involved in making decisions about the patient’s treatment. The process should be recorded in the clinical record or action plan.
  12. After agreeing on the need to adapt the therapeutic measures, the PPC patient and the family should be informed of the new treatment and care plan, explaining that the aims are to achieve maximum comfort and well-being for the patient, and to reduce suffering.
  13. Healthcare organizations should provide appropriate training in communication skills for professionals working with paediatric patients requiring PPC.
  14. Healthcare organizations and care services themselves must ensure continuity of care, 24 hours a day, 365 days a year, and coordination between different services and care settings.

 

Rationale

The CDG has considered the evidence on facilitators and barriers to communication from the time of diagnosis to the end of life because it understands that communication is a continuous process that takes place throughout the illness.

Complete clinical question

Full information on this question (available in Spanish), see:
http://portal.guiasalud.es/guia-en-capas/cuidados-paliativos-pediatria/#question-4

References

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Child participation in decision-making and end-of-life care
The preferred location for end-of-life care