Fig. 4.1
The most important patients’ rights
A dilemma arises if the strict observation of one of the patient’s rights, such as the right to choose the method of treatment or to refuse a procedure, is not honored, as this may hinder or prevent the provision of the best care for the patient. Providing the best possible medical care for patients is not only the main task of every medical care provider but is also the essence and meaning of medical practice. Therefore, most practitioners believe that the most important right the patient may have is to receive the best possible medical treatment.
4.2 Illustrative Case (Patient’s Right to Receive Bad News)
A 25 year-old male law student was admitted for biopsy of a tumor in the dominant thalamus. The biopsy showed glioblastoma multiforme. The treating consultant and resident informed the patient clearly about the nature of his disease and the prognosis of a likely unfavorable outcome. He was informed in detail about the planned course of treatment which included transfer to the oncology center for further management. A few hours later, the patient attempted to commit suicide.
4.3 Approach to the Case
It is ethically correct that the treating neurosurgeon informed the patient about the nature of the disease, the expected outcome, and the management plan. The treating teams are obliged as well to answer any question the patient and his/her family may have. However, the serious outcome of that case may raise a question about the skills of delivering the bad news to the patient. Patients have the right to have information delivered honestly but also with compassion and as much optimism as is honestly doable. Delivering bad news should be well planned according to clear understanding of the patient’s psychology and expected reaction to such news. Sometimes it is advisable to ask close relatives to participate and be there during the delivery of bad news, although special precautions should be taken not to breach the patient’s confidentiality and privacy. The neurosurgeon should also choose the best time for the patient and the place to deliver any serious knows. Enough time should be given for the patient and the family to ask and receive honest and clear answers. The culture and faith of the patient may play an important role in altering the response of the patient (Ammar 1997; Bahus et al. 2012; Guven and Sert 2010; Jotkowitz and Glick 2009).
4.4 Discussion
4.4.1 Patients’ General Rights
There is not, and should not be, any conflict between patient’s rights and the treating neurosurgeons’ interests (Johnson and Johnson 2007). Patient’s rights may be taken for granted. Most professional medical societies like WFNS and EANS have documents on patient’s rights. In daily practice, many doctors, neurosurgeons, nurses, and patients may think that they know enough about patients’ rights; however, a deeper knowledge of bioethics and ethical implications and concepts is not very clear to many neurosurgeons and patients. Therefore, from time to time, ethical questions and dilemmas may arise. The ethical code of the American Medical Association (AMA Code of Ethics 2006) summarizes the patient’s rights as the following: “The right to receive information from physicians and to discuss the benefits, risks, and costs of appropriate treatment alternatives; the right to make decisions regarding the health care that is recommended by the physician; the right to courtesy, respect, dignity, responsiveness, and timely attention to health needs; the right to confidentiality; the right to continuity of health care and the basic right to have adequate health care.”
The AMA code (AMA Code of Ethics 2006) as other ethical codes puts in practice the main ethical principles of patients’ rights as the following: (a) autonomy, the patient has the right to refuse or choose his/her treatment (voluntas aegroti suprema lex); (b) beneficence, a practitioner should act in the best interest of the patient (salus aegroti suprema lex); (c) non-maleficence, “first, do no harm” (primum non nocere); (d) justice, concerns the distribution of scarce health resources and the decision of who gets what treatment (fairness and equality); (e) dignity, the patient and the person treating the patient have the right to be treated with dignity; and (f) truthfulness and honesty.
4.4.1.1 Right to the Best Treatment Available
Patients have the right to receive the best possible medical treatment. There are several levels of medical treatment which include:
(a)
Access to proper and efficient medical facilities such as outpatient clinics and hospitals
(b)
Opportunity to be admitted and adequately treated in the emergency ward in case of an emergency (in the unfortunate situation of a system in which the patient has to pay for health care privately, at minimum emergency, care must be a sacred right and guaranteed)
(c)
Access to the best possible standard of care including surgery
(d)
Access to adequate follow-up after discharge from the hospital
An uncommon but not rare difficult situation arises when a patient asks for inappropriate treatment (e.g., Gamma Knife radiosurgery for 74 metastases, spinal cord transplant, and surgery for a dominant thalamic hemorrhage in a 91 year-old with GCS 4). The surgeon must calmly and simply explain to the best of his/her ability why this request cannot be met, based on evidence, risk-benefit analysis, and/or availability of special resources (Weijer et al. 1998).
4.4.1.2 Right to Be Told the Truth
Every patient has the absolute right to receive honest and clear facts about his/her problem (Hebert et al. 1997). It is easy for neurosurgeons to be a bit “unclear” on some negative details, when they talk to patients; this is usually done to preserve the patient’s feelings and sense of hope and sometimes to spare the neurosurgeon extra grief. But qualitative research studies have clearly documented that patients want the truth (Yu and Bernstein 2011). The pain of being told untruths would trump the pain of the truth for most patients although cultural differences may be at play in some cases.
4.4.1.3 Right to Know Enough About the Medical Problem
The treating physician or neurosurgeon should tell the patient all the available facts about the patient’s medical problem that a reasonable person would want to know such as diagnosis, causes, different methods of treatment, the natural history with no treatment, complications, and expected outcome of each treatment options. Not every detail can or need be told, but certainly whatever the individual patient requests to know. This information should be given to the patient in simple understandable language avoiding complicated medical terms so the patient can understand, as best as possible and can digest the information. Mistakes and errors, which sometimes occur during the course of treatment, should be discussed in detail with the patient in honest and understandable language.
Pearl
Patient’s rights must be preserved and respected, without exception. The patient has to be ethically and clearly educated about the medical problem in understandable language.
4.4.1.4 Right to Participate in Making the Decision About Treatment
To ensure the success of any treatment plan, the patient should be included as an important partner in making the decision. The patient has the right to choose, agree upon, and decide about every step of treatment along the course of the disease. In order to prepare the patient for making such decisions and be a true partner in fighting the patient’s disease:
(a)
The patient should receive all information about his/her medical problem.
(b)
The patient should know the different options and alternatives for the suggested treatment.
(c)
The patient should know the outcome of every method of treatment.
(d)
The patient should have time to think about and discuss with his/her close relatives or friends about the medical conditions and management plan.
(e)
The patient should know the quality of service in the hospital and the qualifications and experience of the treating team (if he/she asks).
Pearl
The patient should be considered as a partner in the treatment plan and be heavily involved in the decision-making process. If he/she waives that right, it should be respected and well documented.
4.4.1.5 Right to Consent to Every Procedure
The patient or the patient’s decision-makers should consent to every procedure during the course of the treatment. With procedures with any risk, the patient should sign an informed consent form (e.g., surgery, radiation treatment). Verbal consent is generally adequate for less-invasive procedures such as venipuncture for blood tests or intravenous administration of fluids and insertion of urinary catheter.
4.4.1.6 Right to Confidentiality and Privacy
Confidentiality and privacy of all patients should be strictly respected. Every patient has the right to this unless he/she waives this right. The opportunities for potential abuse of these rights are rampant in the everyday life of a hospital in today’s complex health-care systems. So, constant vigilance by the health-care team is needed, as well as the patient’s self-advocacy to remind everyone to safeguard his/her privacy.
4.4.1.7 Right to Complain
Patients may feel during the course of treatment that the received treatment was not properly indicated, or properly executed, or there have been mistakes or errors in one way or another. The patient and the family should have the right to complain, at one or more of several levels:
(a)
The patient may complain to the treating neurosurgeon. The treating consultant should listen and take the complaint very seriously and try to make certain the patient knows he/she has been heard and positively respond to the patient’s concerns. If some corrective action is appropriate, the surgeon should try to take action to rectify the cause of complaint and keep the patient up to date on those actions. Many complaints go no further than this.
(b)
Patients and their families have the right to complain to the hospital authorities (e.g., the public relations department or to an administrator). The hospital authorities should contact the treating team and discuss the complaints and work to solve any problems. It is advisable to arrange meetings between the treating team and the patient and his/her family to solve any conflict. Such a meeting should be held in a constructive environment of honesty, care, and understanding.
(c)
Patients and their families have the right to complain to the surgeon’s governing body such as the local College of Surgeons.
(d)
The patient may sue any member of the treating team in the courts.
4.4.1.8 Right to Know Who the Treating Team Is
Building up a good professional relationship with patients and their families is very important for successful medical care. Such a relationship should be based on trust and honesty. So patients must know who is treating them and their qualifications and their experiences if asked. In case trainees are involved in part of the treatment under the supervision of senior consultants, patients must know that, although surgeons are generally poor at being explicit about this information (Knifed et al. 2008a, b). The patient should have the right to a second opinion, and the treating surgeon should be prepared to arrange this for the patient if asked to do so.
From time to time in every university surgeon’s practice, a patient states a wish to have the consultant surgeon do the operation and not have the residents involved. This request is not compatible with the workings of a teaching hospital, and the patient should be gently explained how things work and that the consultant takes full responsibility to provide an excellent operation. This explanation is honest and is generally sufficient for most patients to proceed.
4.4.1.9 Right to Have One’s Dignity Preserved
The patient’s dignity is central to ethical medical practice. Preserving the patient’s dignity is not only a basic human right but also important to ensure that the patient will follow medical instructions enabling the best outcome of his/her course of management. Besides the obvious large elements contributing to a patient’s dignity, there are many small issues which can be very important in making patients feel valued and worthwhile such as not waiting too long in the neurosurgeon’s waiting room and receiving an apology if they do wait too long or for other discourtesies.
Patients who feel respected and treated as a valuable human, equal to anybody else, will be able to make good decisions and positively cooperate with the treating team. A common cause for patient dissatisfaction is lack of communication and loss of dignity. While the dictionary definition of dignity is clear, dignity in daily medical practice is rather vague. The perspective of dignity may vary among the patient, neurosurgeon, and nursing staff, and the perspective may also vary according to culture, personality, self-evaluation, and expectation. Therefore, patients’ culture, beliefs, and personality should all be taken into consideration. They should be treated with respect regardless of the state of mind or the severity of the neurosurgical condition. In order to secure ethical respect of patient’s dignity, certain tools are available (Cheshire Dignity Assessment Tools 2009). At an organizational level, collaboration between clinical ethicists and risk management can lead to respectful patient care (Sine and Sharpe 2011).
Dignity should be spelled out clearly to avoid any ambiguous, vague application or misunderstanding among the hospital staff. Dignity is essentially concerned with how people feel, think, and behave in relation to the worth or value of themselves and others. To treat someone with dignity is to treat them as being of worth and value, in a way that is respectful of them as valued individuals.
4.4.1.10 Right to Have Education About Their Condition
Neurosurgeons around the world treat patients from different cultures and backgrounds and with different perspectives on medical problems and medical care. Culture, religion, health, and literacy levels each have a direct impact on the course of treatment. Patient education is an opportunity to distribute health information equally among diverse cultures and communities as a good example of justice, one of the fundamental ethics principles of medical practice.
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