Tumori 2017; 103(2): e21 - e21
Article Type: CORRESPONDENCE
AuthorsElena Vegni, Lidia Borghi
- • Accepted on 29/12/2016
- • Available online on 16/01/2017
- • Published online on 24/03/2017
This article is available as full text PDF.
The Italian Association of Medical Oncology (AIOM) has recently drawn up a practical ethical guideline including principles and responsibilities for cancer care (the Ragusa statement) (1). Their reflections were inspired by the need for patient-centered medicine (PCM), a clinical model that focuses on patient autonomy and empowerment. We would like to contribute to this debate, raising some reflections on the meaning of PCM in cancer palliative care (PC).
As autonomy becomes the gold standard approach for clinical care, a possible risk arising from PCM is misunderstanding the role of medical responsibility: the result may be that of a physician’s disengagement leaving room for the patient’s preferences when there are no choices to offer or they are medically nonbeneficial. It is important to highlight that PCM is a method that advocates a deliberative model of physician-patient interaction (2), a balanced approach between patient autonomy and medical paternalism in which the clinical decision-making process is based on a shared decision-making continuum (3). A trend among physicians to hide behind patient autonomy has to be considered as a possible, tangible risk to avoid difficult medical communication. Literature contributes to the debate with the concept of palliative paternalism (4), a communication approach to PC that evaluates the effective room for decision given the clinical condition, and determines the appropriate level of patient autonomy and ability to decide, recognizing the patient’s psychoemotional intricacy to take part in his or her own end-of-life (EOL) process. Palliative paternalism could reduce confusion and suffering by avoiding the proposal of nonbeneficial care. Often in PC the truth is that there is no decision to be made and no space for negotiation. In this case, how is one to approach patient-centered care? Sometimes, being patient-centered is to deeply understand the unlikelihood of the other (patient or caregiver) to assume a decision, and to carry on the responsibility to communicate (vs share/discuss) EOL decisions.
This leads to another consideration: expecting patients or family members to make life or death decisions is a tremendous weight. Yet it was found that as patients approach death, physicians may defer these decisions to them and/or to their caregivers. Our previous study (5) of parents of children who died in a pediatric intensive care unit highlighted parents’ ambivalence about their involvement in EOL decisions. Some of them clearly expressed the importance of being informed and participating in the decision-making process, but they stressed the importance that clinicians have the words to talk about their decisions and uphold them during critical moments (
Excerpt from an in-depth interview with a couple whose child died in the intensive care unit (5)