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Abstract

There are many ethical issues that arise in the care of people with disabilities. The starting point in this care should be consideration of the patient’s best interest and a focus on them and their family. Among the challenges for an interdisciplinary rehabilitation team are the analysis and consideration of ethical issues related to autonomy, whether or not to prescribe different rehabilitation treatments in order to provide beneﬁt and not perform a harmful act, and, lastly, the assessment of allocation resources.

Introduction

Rehabilitation refers to interventions taken by an interdisciplinary team of physical medicine and rehabilitation physicians, nurses, and physical, occupational, and speech therapists; they seek to reduce disability, improve overall functionality and quality of life, and to achieve greater participation of the individual in all life activities.

Physical medicine and rehabilitation physicians, nurses, and physical, occupational, speech, and recreation therapists work as a team to help patients reduce their dependency on others and achieve the highest level of functional independence. The rehabilitation team may experience difﬁculties related to the planning and attainment of therapeutic goals, especially because it aims at long-term interventions, making it essential that not only the motivation but also the active participation of the disabled person and his or her family in the rehabilitation treatment is guaranteed since it is a process of shared responsibility. There will sometimes be differences between the decisions of the therapeutic team, which seeks better conditions of functionality, and the patient’s wishes. In addition to the difﬁculties of therapeutic decisions and the functional loss experienced by this population, there are ethical challenges that the team must assume, particularly those relating to respect for the autonomy of the patient and non-maleﬁcence, as well as proper use of the health system’s resources. Adequate information regarding the diagnosis, prognosis, treatment process, and active participation in the formulation of objectives and evaluation of goals achieved is necessary as a provisional way to help the rehabilitation team handle these ethical conﬂicts.

The treatment of people with disabilities has evolved over the course of history; in previous centuries these individuals were often viewed with compassion, ignored, even hidden from society, and had their dignity violated. Today, advances in medical technology provide a greater chance of treatment being possible, yet at the same time more ethical problems have emerged.

Kaplan (Kottow 2007a) describes paternalistic and contractual models of care in rehabilitation. In the paternalistic model, the doctor makes treatment decisions based on his or her expertise; this model is based on the premise that expert opinion is the most appropriate, without patient participation. In the contractual model, the right of the patient to be informed about therapeutic interventions is emphasized; this model recognizes that the patient plays an important and active role in decision making and the doctor is the source of information about diagnosis and treatment options (Barry and Edgman-Levitan 2012). There is a mutual participation, but the patient has the greater responsibility in decision making. For patients who do not want to participate in the decision or in situations of incompetence, the paternalistic model is appropriate.

Ethical Issues

A society is judged by its capacity and ability to care for its members, especially the most vulnerable and those with disability (Strax 2008). People with disabilities deserve attention in healthcare based not just on physiological and functional aspects, but also with consideration of ethical aspects in order to provide better rehabilitation care.

Healthcare for people with a disability who are undergoing rehabilitation treatment provides medical teams, along with society and governments in general, with a real ethical challenge. If it is already difﬁcult in some of today’s societies to establish respect for fundamental human rights (De Currea 2005), within this vast panorama of ethical challenges there are additional issues such as the duty to ensure health interventions do good and then do no harm as well as respect for the equality of governments and distributive justice of health resources. These ethical problems can be demonstrated in rehabilitation in people with disabilities with respect to autonomy, decision making (difﬁculty assessing decision-making capacity), the choice of rehabilitation treatment, and appropriate use of health resources and decisions at the end of life.

These challenges may present a wide range of difﬁculties ranging from the determination of mental age in people with a cognitive disability, addressing the issue of autonomy and informed consent, and what is referred to as the application of treatments of high cost in economically less developed societies (Nussbaum 2006). Accordingly, one of the ﬁrst steps in addressing this issue is to understand that, especially for a person with a disability, there are inﬁnite applications in healthcare and the economic development of different countries is linked to the likelihood of giving more or less attention to this issue.

Healthcare is a difﬁcult task for all states in the world: creating equitable care systems, including not only holistic opportunities to assess the health–disease process but also taking care of the welfare and conditions affecting quality of life, has become an unattainable ideal for many countries. Similarly, addressing economic development, the sustainability of the systems, and allowing access to the different technologies available imposes a great challenge. However, in addition to these sustainability challenges and opportunities in the healthcare and rehabilitation of people with a disability are additional situations that require much more complex care and protection.

Within these situations, and the focus of this chapter, are different ethical challenges, ranging from determining mental age in people with cognitive disabilities, essential to addressing the issue of autonomy and informed consent, to the use of rehabilitation treatments of high cost in less economically developed societies.

Likewise, it is equally important to understand that the development of new medical technologies and treatments grows at a much faster rate than the country’s economic growth. This results in medical budgets every year being set for healthcare needs that are lower than the growing needs as well as which are immeasurable to provide health care for humanity. By the same token (Hottois 1991), there are difﬁculties in approaching the issue when a society is in conﬂict, such as political, social, and economic wars. While not caused by purely medical reasons, conﬂicts leave a signiﬁcant number of disabled people who require special medical care.

Addressing the issue of autonomy in this population with disability requires determination of the patient’s capacity to understand, consent, and even deny a particular rehabilitation treatment. It is not enough in most cases to know the indicated medical treatment; it is more about knowing when to apply this treatment and under which conditions, while respecting the approval or denial thereof. In addition, the medical team is obliged to seek the outcome in the best interest of the person receiving the medical intervention along with maintaining their conﬁdentiality (McDonald and Raymaker 2013).

The ﬁrst point related to autonomy is competence. This is an indispensable requirement for being able to access the informed consent process and for participating in decisions regarding medical intervention. When speaking of a patient’s ability to participate in decision making, it means that they possess the core skills speciﬁc to making this decision (ten Have and Gordijn 2014). The ﬁrst of these skills is the ability of expression, verbal or non-verbal. Apart from expression, it is essential they understand the information received and that based on this information the decision is stable and consistent over time. This decision-making capacity is based on primary cognitive abilities, among which are attention, language, memory, and executive functions.

These cognitive skills can be diminished in a patient with a disability, which presents not only a technical challenge but also an ethical one for the team responsible for their medical care, particularly when treatment is not accepted. This issue is even more difﬁcult and problematic if it is understood that cognitive disabilities are variably expressed and that a patient with special needs may be unable to make decisions regarding some aspects of their life but capable of others. It is for this reason that healthcare should be patient centered regarding their different needs, wishes, and preferences . Thus, it should be understood that the decision of an autonomous patient is not always reasonable or in accordance with what the medical team proposes as the best option.

Next, it must be questioned as to when the medical team should decide to put aside informed consent for rehabilitation treatment in people with disabilities, especially cognitive disabilities?

Autonomy: Capacity

Case 1

A 22-year-old with Down syndrome and the mental age of a 6-year-old attends a consult. He is fearful in an unfamiliar environment and is terriﬁed of hospitals and needles. This young man requires hospitalization for intravenous antibiotic treatment due to a diagnosis of an initial systemic infection from a urinary infection. At 22 years of age, he is of legal adult age and should be responsible to consent to or refuse the therapeutic proposal that is indicated. However, with a mental age of a 6-year-old, how can he be left with the responsibility of deciding the course of treatment? Especially one that if not applied could end his life?

It is for this reason, among many, that informed consent should be understood as a process by which the physician–patient relationship or rehabilitation team and patient–family relationship is conducted using adequate and appropriate information and in pursuit of the best beneﬁt for the patient. The ﬁrst part allows the physician and/or interdisciplinary rehabilitation team to meet objectives for each patient and also permits the individual patient to assume an active role in achieving the best possible conditions for their state of health and disease. Informed consent is an ideal expression of respect for autonomy, but it is also a process that can present conﬂict in major situations such as the care of vulnerable populations. This can be seen particularly in people with cognitive disabilities since that consent is based on the understanding that the information received gives a determined medical intervention. Given that this intervention may be approved or denied, there is a real challenge for the medical team to recognize when the objective of consent has been fulﬁlled in this group. If these factors are taken into consideration in Case 1, the young man’s parents or legal guardian will need to be provided with adequate and sufﬁcient information during the consent process. Furthermore, assent from the young man should be attained, allowing the use of appropriate treatment within the margins of the minimal discomfort and fears of the patient. This means that despite the mental incapacity of the young man to make his own decisions due to his mental age of 6 years old, the medical team has the responsibility to respect him as a person, recognize his fears, and let him actively participate in the best possible way in the treatment.

Informed Consent: Disability

Case 2

A 21-year-old attends a gynecology consult accompanied by her mother. The young woman is deaf and would like to start to be sexually active with her boyfriend, a young man without disability. In addition, she is considering getting pregnant later on and wants to be advised on the best family planning method. Although she did not ﬁnish her studies, the young woman did learn sign language, how to read and write, and has completed some decorating courses. She is independent in her daily activities but is still ﬁnancially dependent on her parents who do not approve of her boyfriend and want a deﬁnitive method of contraception for her. Her mother says she does not want her daughter to have a pregnancy and the need to take care of a family. The young woman is aware of her mother’s position on the issue and requests that communication during the consult be carried out in writing. This way she will be able to understand what is going on since it is not possible for her to hear the conversation between her mother and the gynecologist.

This case concerns economic dependence and a language-related special need that has been overcome with sign language and reading and writing. Economic dependence can interfere in a decision such as this if we know that it involves a person of age with a communication disability, even if they have shown cognitive capabilities and additionally have adequate expression (though not verbal) of language. The medical challenge in this case begins with the recognition of the special communication needs, which have been overcome and are essential for proper consent. What is more, a focus on the desires of the young adult, according to her life plan, should be ensured.

The fact that this young woman can read and write gives her a distinct communication advantage over other deaf patients who cannot communicate through reading and writing and others who can only use sign language – language not shared by the vast majority of people. Language is one of the major limitations in communication.

The economic dependence described now joins other limitations including a partial limitation of non-verbal expression of language. Sign language has several limitations, which makes this case an ethical challenge. In sign language, there is a limitation to the full translation of written or spoken language into different languages. A translator works as a third party and interprets what they understand, but their interpretation is based on the language that they understand and that of the person they are interpreting from. Therefore, the medical team needs to concentrate their efforts on getting appropriate information (Gracia and Júdez 2004) to the young woman and must pay much attention to her ability to comprehend the information.

In summary, the informed consent process as an expression of respect for autonomy aims to:

Respect the patient’s rights and dignity;
Ensure and guarantee adequate information that allows the patient to participate in making the decisions that affect them;
Support the work of professionals, allowing them to share the process of decision making with the patient and his/her family; and
Determine the ﬁeld of action within which medical activity can legally develop from.

Furthermore, the process of informed consent for people with a disability enables the medical team, the patient, and the family to determine the different courses of action presented by each situation. In order to make the best decision, there must be a time for analysis and comprehensive understanding of each of these actions so that the consent process involves all parties in order to make the best decision.

Ethical Issues At End Of Life

The next issue that should be discussed is related to the decisions at end of life for people with disabilities. This is where the primary objective should be the patient’s best interest, which should therefore be taken into consideration during decision making. Hence, the decision-making process should be directed at patient-centered care, breaking away from the anatomical concentration of the disease and thus returning focus towards the patient and their family (Medicina de Rehabilitación 2013). Generally, this patient centered model emphasizes respect for the values of the patient and their preferences : and interests, etc. However, in some cases this is impossible to know because of the medical condition of the patient. Identifying what is in the patient’s best interest is a challenge that the interdisciplinary health team faces in making this decision and in which the rehabilitation team must participate.

Case 3

A 56-year-old man has a diagnosis of lung cancer with intensely painful spinal metastases associated with high spinal cord injury at the T2–T3 level. He is paraplegic and totally dependent in all activities of daily living. The sudden presence of a tonic-clonic seizure is followed by subsequent loss of consciousness. The patient is admitted to hospital and shows a cardiovascular compromise causing him to be admitted to the intensive care unit. Great metastasis extension in both cerebral hemispheres is evident and following 3 weeks of treatment there has been no recovery of a state of consciousness. Mechanical ventilation has not been withdrawn and the patient develops a deteriorating condition with symptoms of heart failure, renal injury, and increased intracranial pressure. The patient’s wife asks that all treatment that the patient requires continue.

In this case, as in many others, ‘best interest’ involves assessing multiple aspects such as quality of life, futility, burdens, beneﬁts, pain and suffering associated with treatment, and proportionality in the interventions used. In addition to all other relevant aspects of treatment, which can be seen not only from a medical perspective but also a more central view, is the consideration of the effect on the family and social circle.

Physicians have the ethical obligation to ensure that decisions are made in accordance with the values and best interests of the patient (ten Have and Gordijn 2001), The goal of determining the best interest of the patient is based on an assessment of the beneﬁts and risks of the proposed treatment. The consideration of the beneﬁts and burdens should go beyond simple survival statistics and include in a signiﬁcant way the patient’s quality of life. The physician is obliged to act in the patient’s best interests but, above all, to do no harm – the fundamental principle of their profession. If the treatment causes more harm than good, it would be acting in a negative fashion.

In virtue of their profession, physicians and also the interdisciplinary rehabilitation team are seen by society as having the knowledge and ability to determine how to provide the best care that is both beneﬁcial and harmless. Physicians have the moral authority to judge not only the potential damage but also the beneﬁts of the interventions applied. Their ethical obligation is then to have the ability to establish that a particular treatment is in the best interest of the patient, even when it does not align with the family’s wishes. In other words, the patient has a right of autonomy as does the physician, the latter being based on scientiﬁc criteria. The best option is a shared decision in which communication is fundamental in reaching the objective (Truog et al. 2008). When disagreements exist, the aim should be to approach them with the desire to understand and recognize the perspective of others who are affected by the decision and provide support throughout the process. In a patient centered model it is recommended that there should be constant and clear communication in order to reduce family stress. It is important to note that when an agreement as to what is in the best interest of the patient is not reached between the surrogate and the medical group, the physician is not required to perform treatments that he or she does not consider appropriate for the disabled patient. This issue has enabled many scientiﬁc associations to discuss the importance of ethical committees to collaborate in resolving these cases. Communication skills between interdisciplinary health groups and the family are important components in high-quality care for the patient. There is sufﬁcient evidence demonstrating that this allows better care to be delivered and reduces the moral stress that these decisions generate; in this manner, the family is able to feel greater satisfaction towards the healthcare provided.

In healthcare, there has been great controversy related to the futility of treatments. For many authors there still is no consensus on or a single deﬁnition of futility. This situation presents even more controversy for a disabled patient due to the presence of special needs.

Feudtner (2008) provides the following deﬁnition of futility: “At judging futility, physicians must distinguish between an effect, which is limited to a portion of the patient’s body, and a beneﬁt that sensibly improves the person as a whole.” Thus, treatments should be measured by their ability to beneﬁt the patient as a whole; if the treatment does not result in an overall improvement for the patient then its potential usefulness must be questioned. Ethically, treatment should always be given in an attempt to be beneﬁcial. Searching for relief of pain or suffering should also never be considered pointless. The determination of futility is relevant when the doctor questions the potential harm to the patient in order to try to achieve a certain beneﬁt. This issue has been controversial since its introduction.

The recognition that treatment will not be helpful is essential to avoid the patient being subjected to a treatment that does more harm than good. There are many factors that enter this discussion when it comes to a patient in rehabilitation, but the best choice will always be to see the patient as a whole, as a living being, and thus determining what is in their best interest.

Unfortunately, only one-third of healthcare providers receive training on issues related to decisions on end-of-life care. Though there has been progress in terms of education on end-of-life care decisions involving disabled patients, there are still signiﬁcant deﬁciencies in the instruction received by medical groups, therapists, and nurses during their training. Hence, there is a need for educational programs that offer interdisciplinary rehabilitation groups the opportunity to gain knowledge as well as the ability to express their experiences while caring for people with disabilities at end of life.

Finally, this ethical challenge for the healthcare of people with special needs leads to exploration of the ﬁeld of distributive justice in health resources based on equity.

The drawbacks and disadvantages experienced by a person with disabilities is demonstrated by the lack of health resources in different countries around the world. This inhibits the possibility of full participation and integration into a society. However, at the same time, the proper use of available resources also demands that it is reﬂected ethically and understood that it is not always possible to provide technology of high cost and little impact to large populations, only to a few. For countries with greater available resources this reﬂection should be based on establishing their utility as a beneﬁt and not as a burden for a person with a disability (Macklin 2008).

Healthcare is a major challenge for governments around the world, especially with regards to delivering adequate attention to the health problems of people with disabilities. The recognition of this difference as an essential element for equity means medicine has as one of its objectives the implementation of health policies in a globalized world. The different views on justice, ethics of protection, the concept of vulnerability, the right to health, the global economy, and integrity related to the development of health programs provide an immense and difﬁcult path to healthcare for vulnerable populations and patients with disabilities.

More than the obligation to be healthy, the right to health must to be understood as the required opportunity to access the resources necessary to achieve the best possible level of health. Access to these opportunities inevitably requires a stable economic resource. Given that technological growth and health research in rehabilitation grows at a faster rate than the economic development of different nations, resources required for healthcare are higher than established budgets in various countries each year.

The unprecedented growth of medical research has crossed frontiers, especially in underdeveloped countries. This is clearly related to the current social and economic context. The gap in access to health services and medicines between wealthy and underdeveloped countries is incalculable. The development of health policies goes hand in hand with the economic context in a country. The question then arises, how is it possible to speak of global health between disparate economies? With the huge gap that arises from the enormous differences in average family income between a rich and poor country, how could a world without borders be considered? Lessening the economic gap between the wealthiest countries and underdeveloped countries is now an obligation and a debt that rich countries owe to underdeveloped countries.

Allocation Of Resources

Case 4

A multinational medical device company specializing in rehabilitation would like to donate power wheelchairs to a group of amputees of both legs who live in a mountainous area of an underdeveloped country in exchange for an advertising campaign. The group of amputees is very happy and feels fortunate as they consider the advertising campaign a small compensation for the devices. There is, however, a mechanical difﬁculty in the utilization of the devices since the area where most live is highly irregular and many streets are not paved. For this reason, they have ﬁled a legal action against the health system to which they belong asking them to ﬁx the paths near different homes in order to be able to use their electric chairs. Through a legal decision, the health system is required to pave the streets of their neighborhoods to provide them with access to the roads necessary for the use of their devices. Everyone is pleased with this action.

From a common point of view, the beneﬁt of this action affects a limited number of people, and, more than being a responsibility of the medical team, it seems that this should be an obligation of the public works department. The money used in complying with the statutory provision to ﬁx the paths is money that the legal ruling has diverted to this action instead of its original purpose of addressing the health problems of the community. While a few are happy, the health interventions that will be postponed in this community due to this expenditure need to be considered. On that same note, although the power wheel chairs were a gift, it should be questioned whether they were medically indicated, and if the recipients’ circumstances made them a necessity. Additionally, it should be questioned who is responsible for the maintenance and replacement of these devices when they have reached their lifetime use. Should the cost of maintenance and replacement of these high-tech devices fall on the health system of an underdeveloped country? What is the responsibility of the multinational organization that donated these devices and has now created a need for high technology in this group of people? What beneﬁt did this donation bring to this underdeveloped country’s health system? Who should ensure the continuity of this technology in this country and what is the price of it?

The integrity and reciprocity of the ethical principles in medical research and marketing campaigns indicates that delivery must be consistent with contribution. Similarly, distributive justice requires that each member of society receive a fair distribution of the beneﬁts and burdens of the health system.

One of the most interesting breakthroughs in the ﬁeld of health research and resource distribution is the ‘10/90 gap’ issue, which means that only 10 % of the costs of health research are utilized for the health problems of 90 % of the world’s population. This has occurred because health problems that occur less frequently are less proﬁtable for the biomedical industry. And, within an economic system this industry sponsors a great part of the health research. Thus, investment is disposed to creating medical solutions for societies with greater purchasing power (Ohmae 2005), pushing these solutions away from purposes of social justice and the greater good.

Case 5

Sophia is a 35-year-old lawyer and mother of two children. Her youngest son is 5 years old and has cerebral palsy with profound mental retardation that requires constant attention. She has ﬁled legal action against the health system to which they belong and it is required to provide her home with a 24/7 nurse along with a therapist to comply with an exercise program. Since she works, she cannot take over the care of her son during the day and at night she must rest in order to be able to work the next day.

The ﬁrst thing that should be asked is whether health resources (that were already limited in budgets and economic development) should have to meet the social needs of the community and be used based on these legal provisions? All minors require special care, and this is an obligation of their parents. Can a special medical disability status detach parents from their obligation to care for their children? Without a doubt, the medical and ethical challenges in the care of a disabled child from the principle of fairness and justice of distribution of health resources should lead to identiﬁcation of the responsibility of individuals and, in this case in particular, the responsibility of parents and families in the child’s rehabilitation care. While these patients do require more attention from the healthcare system, it is also clear that greater care is correspondingly required from their families as well as an adaptation from them to their family members’ needs. The care of people with disabilities requires an increase in rehabilitation expenditure, which is why governments cannot treat these citizens with special needs as equals, hence producing an inequitable health system and creating not only economic but social burdens as well. Health budgets must be respectfully directed to healthcare, and while in complex health conditions there are many social factors involved, countries should implement and promote the attainment of resources in order to meet the social needs of its citizens and not load health systems and medical professionals with the responsibility for social justice from their medical practice. Social justice is the government’s duty and healthcare is a part of this, and the health system should not be alone in the responsibility that this burden represents.

Conversely, a model of global justice in health based on growth from “the ground up” as expressed by Meslin (2008) needs to be considered. This would mean a different motivation, in which medical, scientiﬁc, and technological innovation beneﬁts are arranged to provide for those who desperately need them. This is based on a global justice system supported by serious efforts to build capacity, which involves developing policies, procedures, and regulations to allow those who really need it to beneﬁt.

The construction of capacity from the ground up involves a commitment from governments of underdeveloped countries to partake in scientiﬁc and ethical revisions of both local and international research projects (Kottow 2007b). Thus, technological developments and various investigations may be better adapted to respond to the community that needs them. An atmosphere of responsible spending may also be generated for a health system with overwhelming needs and limited resources.

All of this reﬂects the need for an approach to global justice in health that takes into account the respect and recognition of the differences between countries and their economic and social systems as well as each of the individual needs of members of society.

Conclusion

As the general population of both adults and pediatrics with disabilities increases, it is essential that members of interdisciplinary rehabilitation groups pay attention to people with disabilities from a medical point of view but also to always reﬂect ethical considerations in their care. It is imperative that professionals in this area increasingly undergo formal training in the fundamentals of bioethics.

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