Making decisions (for self, for others, for those who have no voice)
Editor-in-Chief and Editorial Director of Laborcare Journal talk about responsible decision-making law
By Gianluca and Mariella Orsi
We open this editorial by addressing an issue that is more topical than ever, which, in these two years of syndemic, has generated real crises both as far as Health Care Workers and sick people and their families are concerned.
In our opinion, the emergency due to Covid -9 has, in many cases, resurfaced the healthcare paternalism that for years has been stigmatized mainly for the lack of or poor involvement of the person being cared for and, in some cases, even their family.
Law 219/2017
Moreover, despite the approval of an important law, such as Law 219/2017, in which the “Norms on informed consent and advance treatment provisions” are established, there has been an almost total lack of that work of information and awareness among both Health Care Professionals and citizens, which is expressly provided for in Article 1 paragraph 9, which states, “Each public or private health care facility shall guarantee with its own organizational modalities the full and proper implementation of the principles set forth in this law, ensuring the necessary information to patients and the adequate training of staff.”
As Alfredo Zuppiroli points out in his article “DECIDING (for oneself, for others, for those who have no voice),” citing Art. 1 Paragraph 3 of the aforementioned law, “the right to know one’s health condition and to be informed is the essential prerequisite for being able to make responsible decisions regarding choices that affect the person, especially when that person is in serious health condition and the end of life is approaching.”
Testimonies
Listening then to family members and Health Care Workers, it emerged that this right has undergone a real “change of pace” aggravated even more by the isolation from their loved ones, in which sick people have been forced to live the last moments of their lives. […]
There were sick people who, thanks to the assumption of responsibility by many health professionals, had the albeit meager consolation of bidding farewell to their affections and life with a phone call or video call.
From a testimony of another nurse in a Covid ward, “You ask her to take the cell phone, put it in a little bag, disinfect it and hand it to you. Open the video call. All four children there — the patient didn’t expect it and is happy. And you with her. (…) The call lasts about half an hour and it’s as if a circle has come full circle, what was meant to be has been. She had held on just for them, to see them, to say goodbye. Your heart is in a thousand pieces. You think of you and your children and you understand everything … her every concern. He takes your hand, he says, “Thank you, I will watch over you, for what you have done.” And you struggle not to cry. The patient, after a few hours it goes away.”
How many “Why?” have gone unanswered in the past two years?
The Spazio Etico Association, active in Empoli since March 2013 , on March 25, 2022 invited physicians, sociologists, psychologists, philosophers and bioethicists to participate in a Working Table “with the intention of initiating an important reflection on why the ‘normalization’ pathways in the management of the pandemic have had different modalities in the application of protocols to allow access to hospitals, RSAs” in relation to the family members of the assisted persons.
The final purpose was to draft a Document (addressed to Institutions and Health Care Managers, as well as Third Sector Entities) called “The Charter of Why” which has as its ultimate goal to “call the attention not only of Health Care Organizations, Health Care Professionals, Institutions but also, of Civil Society, to reflect on certain decisions sometimes made without them being adequately explained.”
For all these reasons, we decided to dedicate this issue to one of the most important aspects of the Care relationship, just as Paolo Malacarne states in his article:
“Making decisions in medicine means confronting both the uncertainty that often characterizes prognosis and the uncertainty that equally characterizes the many steps in the care process. It traces a clinical history that, in the absence of the possibility of involving the person directly affected, has confronted health care providers and family members with ethical dilemmas.”
Knowing and applying the law in order to decide
After working so hard to pass Law No. 219/2017, Civil Society must demand both knowledge and application of those principles already written in Article 32 of the Italian Constitution.
Therefore, the responsibility for this falls not only on Health Managers but also on the Associations active in health care and, not least, to each citizen involved in the care process but sometimes forgotten.
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