Care is a right

 Editor-in-Chief and Editorial Director, in a “Laborcare Journal” article, talk about “right to care”

(By Gianluca Favero and Mariella Orsi)

In this last period, in many circles, there is talk about the rights to care that are less exacting because of the cuts in health care that the government has decided to make.

Caregivers and the treated are feeling, even more, the precariousness of a health care system that, from being universalistic and free, is in danger of progressively reducing the exigibility of what is declared in Article 32 of the Constitution and Law 833 of 1978.

Arthur Kleinman, a well-known social anthropologist, in the course of an interview[1], states that, increasingly, there is a “growth of social suffering that, in the cities touches the new poor and the most vulnerable groups, from the new homeless to the weak, to immigrants. In my opinion, politicians, economists, and psychiatrists are not fully aware of the gravity of the situation (…) social problems cannot be separated from health problems.”

Perhaps it is time that, even in our journal, we emphasize the importance of holding together respect for equity in the distribution of human, as well as financial, resources in the health care field with the duties of careful management that respects the needs of sick people.

Our society, in fact, is now engaged in the challenge of ensuring access to even life-saving drugs (see the case of those used in hepatitis C) that can change the natural history of many chronic diseases, as well as the adaptation of territorial services that must allow and facilitate home care, reducing improper hospitalizations.

It is necessary, in fact, to offer the right attention to people with rare diseases and those who are frail due to age or disability.

Therefore, we thought, in order to contribute to the theme also chosen for this issue 13 of the journal, “Reflections on Nursing Work,” to start from the summary of an important study carried out by some members of the Florence CNAI Core that aimed to “identify the aspects that were ‘characteristic and most affected’ by patients and caregivers regarding the figure of nurses,” trying to understand what image of nurses had been imprinted, in the minds of sick people and their families, during a course of illness.

Just as we close this issue, an important document was presented to the Senate, “Propositional lines on the caregiving relationship: the duties of medicine. The Rights of the Patient.”

Starting from the premise that the health care team-patient relationship must remain the focus of care, the document clarifies the three principles by which care must be guided:

appropriateness
proportionality
consensuality

Referring back to the document, which must be read with care and become the heritage of all health professions, we like to recall that these criteria are also the basis of two documents developed in Tuscany: the Pontignano Charter ( 2002) and the Florence Charter (2005).

Many of the contributions that health care professionals have offered to Laborcare Journal, are dictated by the concern of having, or not having, concretized ethical and deontological aspects by making care appropriate, proportionate but, sometimes, not respecting a real consent based on adequate information and in the real understanding of the interventions “authorized” by the patient only with the signature of a form.

While for end-of-life care provided by palliative care services advance care planning seems to be a rather widespread and established practice, still much, in our opinion, needs to be done to make all citizens aware of the possibility of making “advance declarations of care” involving also a fiduciary who, in case of future incapacity for sudden serious and/or acute events, can guarantee the respect of one’s wishes in the relationship with the care team.

Much clarity, still, needs to be made and the “Propositional Guidelines on the Care Relationship,” a document prepared by the Scientific Committee of the Courtyard of the Gentiles Foundation in the drafting of which members of SIAARTI and SICP actively participated, seems to us to be an authoritative contribution regarding the refusal of care understood as a “ necessary implication of consensuality and appropriateness of care, in relation to the benefit perceived by the patient.”

According to this paper, the main tools for implementing what is expressed are: “… The first, when care is not exhausted by single medical acts or modest treatment, is shared care planning. It enables the physician and the patient to foresee probable or possible situations and preferred or rejected treatment hypotheses. It thus guarantees a projection to the future of consent, which extends, if the patient requests it, even beyond a loss of capacity.

The second tool is the fiduciary, that is, the person by whom the patient can decide both to be supported and, in case of incapacity, to be represented and protected in the care relationship. The fiduciary is essential where the third tool, the patient’s advance declarations, is used. They are aimed at respecting the identity of the patient himself and serve to achieve, as far as possible, an equality of treatment between people who are currently capable and those who are no longer capable.

Of course, they should not be considered a burden on the person, who should be free to take advantage of them or not according to his or her own needs and beliefs. When they are there, addressed as they are to hypothetical future situations, they will remain entrusted to the collaboration between the physician and the trustee, who will have to actualize and concretize them with a view to the best respect for the preferences and will of the declarant in the given situation, in a sort of continuing continuation of the therapeutic relationship.
(…) The physician has a duty to discontinue treatment if it is not proportional to the person’s benefits and suffering (…) abstention and discontinuation are conduct that fulfills a deontological duty and as such must be exempt from sanction, both civil and criminal.”[2]

It might appear as contradictory the appeal to politicians-which closes the aforementioned document-to provide clarity with a law regarding this issue: if the three criteria of care are linked to the contingent situation and the characteristics of the individual sick person and the specific relationship with that team that cares for him or her, how can we expect a legislative measure to fully clarify the specificity of the “here and now” as opposed to a generalization of the various cases?

Here are the critical remarks to a government measure that reduces access to health care treatments/supplies conflicts with an assessment that only health care providers can make “in science and conscience” in each individual context.

[1] “Our Metropolises? Vulnerable and ill.” by Paolo Lambruschi, L’Avvenire:Dec. 14, 2011

[2] Excerpt from: “Summary of Propositional Lines on the Care Relationship.”
The document can be found at www.laborcare.it

 

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Source

• Laborcare Journal (Editorial No. 12)

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