By Nicola Panocchia, Viola D’Ambrosio, Serafino Corti, Eluisa Lo Presti, Marco Bertelli, Maria Luisa Scattoni, and Filippo Ghelma
The COVID-19 pandemic led to a shift in the medical paradigm from person-centered medicine to community-centered medicine. This shift gives “priority to community health above that of the individual patient in allocating scarce resources”. The patient-physician relationship has also undergone a sudden and profound change and has moved away from the shared decision-making model to return to a kind of paternalism. During a public health crisis, like Covid-19 pandemic, triage is used to select the patients to which resources are to be allocated. In triage, it is only physicians who make decisions through criteria that may be subject to criticism. What do this shift of medical paradigm and change of patient-physician relationship imply for people with disabilities? Does the community-centered medicine meet their medical needs on the basis of the principles of equality and non-discrimination, of the right to care, sanctioned by the UN Convention on the Rights of Persons with Disabilities (CRPD)?
First of all, ableism –discrimination against persons with disabilities– is a well-known problem in health care accessibility, even before Covid-19 pandemic. Decisions on the futility of care, judgment on the quality of life, allocation of poor resources, such as deceased-donor organ have always been affected by prejudices. The most frequent fallacy is to evaluate quality of life on a functional basis but not on a person’s satisfaction with their life.
In Italy, the “Charter of Rights for People Living with Disabilities in Hospital” (CRPD) introduced the term “health barriers” when referring to architectural, organizational, and cultural barriers that prevent or limit access to health services of people living with disabilities, hindering their right to health.
Furthermore, we must ask ourselves what “maximizing benefits” mean. From a utilitarian approach, it means achieving greater overall well-being, in terms of years of life and health-related quality of life, not saving more lives. This interpretation of well-being disadvantages people with disabilities. Indeed, we have seen that resources allocation (triage) protocols of numerous states have discriminated against people with disabilities.
According to Kittay:
“the benefits are unlikely to benefit disabled people, and surely not people with intellectual disabilities…. Benefits attach to people. So, who is benefited, and who decides what a benefit is or when it is maximized?” Prejudices and public perception of people with disabilities and their quality of life, can be easily and unfortunately included in the protocols for the rationing of health resources.
Persons with disabilities do not have special rights but do need special tools that guarantee the rights they share with every other people. The CRPD states these universal rights and prescribes various tools for assuring them: principles of non-discrimination, equality, equality of opportunity, the right to health, and reasonable accommodation.
The shift from person-centered to community-centered medicine offers both risks and opportunities. Historically, community-centered medicine has prioritized community interests at the expense of the most vulnerable. A negative effect of putting the community‘s safety and health before the individual’s interest may be the loss of trust in the medical profession, as patients may believe that physicians do not act in their best interests. However, privileging the health of an entire community can also be a tool to protect the most vulnerable ones included within the community, but this can only happen if the community treats these people as full members.
While it is not easy, it is necessary to try to save the specificity of medical care for each patient and the value of each human life even in the current pandemic. This is could be most easily achieved by person centered medicine, and only if the principle of proportionality of treatment guides decision making.
Recommendations and guidelines for the allocation of scarce health resources need to consider the rights of the most vulnerable, including people with disabilities. Reasonable accommodation should be the key principle to guarantee the right to medical treatment and care. People living with disabilities, even those with intellectual disabilities, should be involved in the decision-making processes according to their understanding and decision-making skills; this satisfies the legitimate request “nothing about us without us”.
Authors: Nicola Panocchia,a,b,* Viola D’Ambrosio,a,c Serafino Corti,d,b Eluisa Lo Presti,e Marco Bertelli,f,e Maria Luisa Scattoni,g and Filippo Ghelma e,h
a Fondazione Policlinico Universitario A. Gemelli, IRCCS, Roma, Italia
b Charter of Rights for People with Disabilities in Hospital
c Università Cattolica del Sacro cuore di Roma, Italia
dPsy.D Fondazione Istituto Ospedaliero di Sospiro
e ASMeD (Association for the Study of Medical Assistance to People with a Disability)
f CREA (Research and Clinical Centre), San Sebastiano Foundation, Misericordia di Firenze, Florence, Italy
g Research Coordination and Support Service, Istituto Superiore di Sanità, Italy
h DAMA (Disabled Advanced Medical Assistance) ASST Santi Paolo e Carlo, Milano, Italy
Competing interests: None
Social media accounts of post authors: @npanocc