No matter how severe their disability is, people with intellectual disabilities have the same status as people who do not have intellectual disabilities and who need support to live a full life. Therefore, the recognition of the person with intellectual disability is an essential condition to make the dignity of that person a reality.
To contextualize this issue, I would like to begin by saying that any definition and legislation on disability and consequent dependency reflects the way in which society deals with its problems and, at the same time, how it is asked to deal with them. Conceptions based on medical and psychological approaches are being progressively and decidedly changed by more functional ones, which focus on comprehensively assessing the needs of the person and determining the most effective way to provide the supports needed by the person with intelectual disability. The relationship between need and levels of support is one of the most important aspects for delving into the current conception of intellectual disability.
Perhaps, we should start by asking ourselves, how is it that, at this point in the history and evolution of humanity, the conception that society has regarding intellectual disability, as old as humanity itself, has evolved so little? It is true that modern definitions emphasize the need for support from the social environment and the right that people with disabilities have to it, in order to improve their functionality, their quality of life and their participation. But they are still insufficient for this purpose, from many areas of care. People with intellectual disabilities are not sick, they are citizens who in the field of health and health care may present singularities that the health system has to address and respond.
What is the reality? According to a study carried out in 2008 by the Spanish Confederation of Organizations in Favor of People with Intellectual Disabilities (Feaps) and the Autonomous University of Madrid, people with intellectual disabilities are notably discriminated against by the Spanish health system as they do not receive assistance on equal terms with the rest of the citizens. When they have to go to the doctor, they have difficulty waiting because delays cause them stress, they have difficulty in communication, which is a fundamental factor for a good quality of care. These people need constant and personalized attention from a companion while waiting and during the consultation, as well as during medical tests. There are also some ethical problems in care, in general, for people with intellectual disabilities such as intimacy, self-determination, personalization, normalization and in health care itself, in particular, there are also ethical problems in communication, when physical or pharmacological restraints are used, even in the behavior of professionals.
In light of Law 8/2021, of June 2, which reforms civil and procedural legislation to support people with disabilities in the exercise of their legal capacity, these people have legal capacity under the same conditions than other people; they are holders of the right and they also have the right to exercise it, so that they themselves can be the protagonists of their lives and can make the decisions they prefer, even if they need support on certain occasions; the dignity of the person is placed in the forefront, with all its circumstances and also has as a starting point the autonomy of the person; the support measures are from now on an essential and very marked issue, something that is in the very spirit and in the very title of the Law; It refers to the support that other people can and should give to the person with a disability, that is, they are “human-type support”.
In the light of ethics, respect for the dignity of the person in health care settings is based on the following aspects:
– Accepting the other as an autonomous being with full freedom of conscience and as an agent of his own life or health (autonomy).
– To procure the good and avoid the bad as far as possible, that is, to ensure the risk-benefit ratio of any intervention (beneficence-non-maleficence).
– Do not discriminate against him for reasons of origin, sex, age, level, etc., but positively on the basis of greater need (justice).
But what should we do? Both doctors and family members believe that health professionals in general should have adequate training in intellectual disability to improve the relationship with those affected and their families, as well as to better transmit the information that patients should know. We must guarantee that the person with intellectual disability participates in decision-making, as far as possible, throughout the care process. We must make reasonable accommodations in our health care that will help to not discriminate against people with intellectual disabilities, such as removing barriers, doing things differently, as well as providing something extra to enable them to get the care and treatment they need.
How should we do it? Ethical aspects must be translated into attitudes. We must consider that attitudes are indivisible from techniques and skills: knowing how to heal a wound consists not only in doing it effectively but also with warmth. Too often the doctor and the patient move on different levels and they will not be able to meet. The doctor knows very well the objective dimension of the disease suffered by the patient and recognizes with great skill the symptoms and organic manifestations of that disease, however, he is unaware of the crisis that the disease has created for the patient, he is unaware of his values, his expectations and his relationships. In this way, we will assist him from the aseptic technique of attitudes. In order to meet, we must move on the same levels, then the doctor-patient relationship will be fuller and, without a doubt, more effective. A basic aspect of communication with the patient is the issue of informed consent.
Patients who also have an intellectual disability have the right, like the rest of the patients, to be informed about the medical procedures that are going to be carried out on them and to decide whether they want to undergo them or not. Many people with this type of disability do have the capacity to decide about it if they are offered the opportunity and the necessary support. To do this, we must ensure that this person is capable of making this type of decision, that he is acting voluntarily and not under pressure, and that he has sufficient information to make the decision.
To facilitate communication and meet the needs of the patient, we must maintain a friendly and respectful treatment, explain him in advance the steps to follow, the tests that we are going to perform and the treatment. This will give him security and confidence. For this we must use simple language, with short and clear sentences. We have to answer his questions, making sure that the person has understood our answers. We have to be patient because people with intellectual disabilities can react slowly and take time to understand what is being said to them.
Perhaps it is convenient to make some reflections since the Covid-19 pandemic. The experience in situations in which it is necessary to decide whether or not to apply a treatment to a person with intellectual disability, such as those related to the futility of a medical intervention, has not been and is not very positive for these people. According to the US National Council on Disability (2019), there are negative biases and inaccurate assumptions about the quality of life of people with disabilities that are dominant in society, and from which health professionals are not exempt, which can lead to making discriminatory decisions about the group with the result of the devaluation or denial of some treatments.
Health care providers tend to significantly undervalue life with disability. During the Pandemic, there have been positions of some professionals that have been published in which it was assumed that, in health emergency situations such as that generated by Covid-19, people with intellectual disabilities were sadly not eligible to be treated in the ICU. When making the necessary value judgments to apply prioritization criteria, it is essential to prevent stereotypes and prejudices towards disability from biasing the assessment made of the patient by health professionals and, to this end, the State must guarantee that these professionals have accurate knowledge of disability. Any prioritization criteria established in health care must be disability-neutral, that is, it must be equally applicable to people with and without disabilities.
The real disability of humanity is its indifferent indolence, its exaltation of freedom translated into selfishness that ends up seeing people with intellectual disabilities as a public and annoying burden. Let us bear in mind that the way in which a society treats people with disabilities says a lot about its level of solidarity. (We reproduce the full article published in Redacción Médica on September 22, 2022).
Jacinto Bátiz Cantera
Director of the Institute for Better Care at San Juan de Dios Hospital in Santurce (Spain)
Head of the Bioethics Group of the Spanish Society of General and Family Physicians