Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68-100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.
Relatives emphasized their relation with the patient and their involvement in care of the patient dying in the hospital. An approach of HCPs to care based on the concept of individual autonomy seems inadequate. The role of relatives might be better addressed by the concept of relational autonomy, which provides HCPs with opportunities to create a relationship with relatives in care that optimally addresses the needs of patients.
It is advocated to organize skin cancer care that is better tailored to the needs of patients with KC, providing patient-centred care. This should include investing in the patient-physician relationship, and personalizing the type and form of information and the follow-up schedules. Adding the patient's perspective to current guidelines could facilitate this process.
Summary
Basal cell carcinoma (BCC) and squamous cell carcinoma (SCC) are the two most common subtypes of skin cancer. About 5.5 million people worldwide had at least one of these cancers in 2013 and this number is still rising. To find out what the needs and preferences of these patients are about their healthcare, the authors (based at the dermatology department of the Erasmus MC in the Netherlands) invited skin cancer patients for group interviews. A total of 42 patients with either BCC or SCC participated and were divided into six groups to share their thoughts and ideas. These focus groups were all audio taped and transcribed literally. Next, these documents were loaded into the software programme ‘Atlas.ti’. Two of the authors assigned codes to the texts to capture the meaning of it. These codes were subsequently clustered in groups of codes dealing with the same topic. In the end the authors could determine which main topics were the most important to patients. The similarity in needs and preferences about healthcare between BCC and SCC patients was surprisingly high. Both patient groups indicated that they needed (1) to receive all relevant, tailored information (2) a physician that takes you seriously and communicates well (3) a short waiting period and the best treatment with direct results (4) to be seen by the same physician (5) a preference for dermatologist during treatment and (6) follow‐up and (7) structured follow‐up care (8) including a full body skin examination. In addition, BCC patients expressed the need for openness and transparency and to be involved in decisions about their healthcare. By knowing now what patients want, their perspectives could be added to current guidelines, and the patient could be put in the centre of care.
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