Challenges Associated with End-of-Life Care in Saudi Arabia

Abstract

There is extensive literature on theoretical arguments and fundamental subjects for the study of bioethics challenges from Saudi healthcare providers’ perspective. Some of the core principles of end-of-life care in Saudi Arabia are respect for dignity of both the patient and the caregiver; compassion to the wishes of the patient and family; management of pain; assessment and management of the psychological and social needs of the patient and the family. However, healthcare professionals often neglect good clinical practice by failing to comply with informed consent. This insensibility leads to the reluctance of patients being aware of the procedures, although they have expressed an interest in decision-making process. The collective engagement of family and health care professionals is the ultimate level of success. Future research and education should involve healthcare professionals, patients, and their families in decision-making by providing the knowledge empowering intelligence on how to communicate with sensitivity, dignity, sympathy, and respect.

1. Introduction

Ethics is the study of the nature of morals and the adoption of specific moral choices. Some of these are common to humanity and transcend cultures, religions, and regions (common morality), while others include responsibilities and professional standards (particular morality) [1, 2, 3]. Bioethics comprises principles that focus on medical/clinical ethics (issues in healthcare), research ethics (issues in the conducting and implications of research), environmental ethics (issues that arise due to relationships between human activities and the environment), and public health ethics (issues in public health) [3, 4, 5].

Ethics is an inherent and integral part of clinical medicine, where the physician is expected to make decisions that often go beyond selecting an appropriate treatment or intervention. Beneficence, non-maleficence, autonomy, and justice are the four ethical principles. These principles are also part of the Islamic bioethics applicable in Saudi Arabia, where interest in various codes of medical ethics, as a separate area of scientific research, has grown over the past few years [2, 3, 4]. In addition, the medical sector in Saudi Arabia is governed by Islamic ethics requiring adherence to Islamic medical ethics, including the observance of fatwas—religious decisions that healthcare providers follow in the Muslim world [3, 4, 5]. Despite these well-established principles and fatwas covering a wide range of social, religious, and bioethical topics, healthcare providers in Saudi Arabia often face dilemmas in their daily practice [3, 4, 5].

It is well-established that end-of-life care includes physical, emotional, social, and spiritual support for patients and their families. The goal of end-of-life care is to control pain and other symptoms so the patient can be as comfortable as possible [6]. This process also includes various components of the doctor-patient relationship, such as informed consent and the do-not-resuscitate (DNR) order, that are often overlooked or not included as part of the whole treatment. Despite significant advances in end-of-life care in Saudi Arabia, the relevant knowledge of both the general population and practitioners is often limited by the focus on curing [4, 5]. Thus, as shown in the most recent comprehensive systematic review of ethical issues reported in Saudi Arabia, the five most discussed bioethical areas are: ‘Medical Ethics Curriculum in Saudi Arabia,’ ‘Doctor-Patient Relations,’ ‘Informed Consent,’ ‘Do-Not-Resuscitate,’ ‘Organ Donation and Transplantation’ [5].

Of these five areas, three constitute one of the most discussed topics in bioethics in Saudi Arabia and around the world, namely end-of-life care. These areas included ‘Doctor-Patient Relations,’ ‘Informed Consent, and ‘Do-Not-Resuscitate.’ This chapter aims to systematically appraise the research related to the doctor-patient relationship, informed consent, and DNR in the Saudi setting, and discuss their association with disease control and end-of-life care.

1.1 Physician-patient relationship

The doctor-patient relationship is a complex psychosocial interplay of vulnerability, trust and professional authority. It should be understood that the knowledge and skills of physicians are only some of the determining factors in building these relationships [7, 8]. Thus, the duty of the doctor is not only to inform the patient fully about their state of health, provide optimal treatment and refer the patient to the appropriate specialist if required, but also to build effective communication to increase patient satisfaction, reduce patient complaints and positively influence the overall clinical outcomes and mental health of patients.

According to the Saudi Commission for Health Specialties (2015), trust is at the core of any successful doctor-patient interaction, while integrity and honesty are essential for achieving trust [9]. Although patients do not expect perfection from their healthcare providers, they need to know that their doctor is reliable and trustworthy. Earlier in 2006, the Saudi government published the ‘Patients’ Bill of Rights (PBR)’ aimed at improving the experience of patients and healthcare professionals with a focus on quality of care [10]. The PBR defines patients’ rights as “accessible health care that meets their needs, to be treated with respect, to receive understandable information, to be involved in treatment options and plans, to file a complaint and to the inviolability of personal privacy.” Hence, doctors should effectively facilitate doctor-patient relationships and dynamic exchanges before, during, and after a medical appointment. In addition, healthcare professionals must be upfront with patients regarding their rights and responsibilities, and how those rights are supported through informed consent [9, 10].

At the same time, there are certain established clear boundaries for doctors regarding what is allowed and what is forbidden relating to medical practice and scientific research [2, 9]. The doctor cannot act against the patient’s will within these limits. However, the doctor’s task in diagnosis and treatment determines the urgency of medical intervention. Therefore, when treatment can save a life in certain cases, doctors have the right to disregard the patients’ will and start treatment. The doctor-patient relationship is a complex area made up of several factors, including doctor-patient communication, patient involvement in decision-making, and patient satisfaction. It is expected and recommended that the physician and patient work together to improve psychopathological conditions, giving particular attention to the therapeutic relationship that influences the patient’s thoughts, emotions, and behavior [1, 2, 9].

Due to the complex nature of this field and the delicate nature of the doctor-patient communication, this relationship is one of the most studied areas of Saudi bioethics. A general synthesis on the topic over the past decades has shown that, despite well-established provisions and fatwas, people, including medical professionals, knew little about the doctor-patient relationship. In addition, there was little knowledge of the PBR, and those who did know had fragmentary knowledge. Health professionals who were aware of the PBR expressed dissatisfaction with the shortage of staff and the lack of the necessary facilities that would allow full adherence to the PBR in primary healthcare centers. However, there was a strong consensus that every patient should be treated with honesty and dignity. Moreover, healthcare providers knew about patients’ rights to respect, privacy, and confidentiality. Patients of a high socioeconomic class should not be treated with extra care, and confidentiality should be maintained in all circumstances [5, 11, 12, 13].

The professional status of a doctor was found to be positively associated with patient satisfaction, empathy for the patient, and a better knowledge of bioethics. In addition, the manner of a doctor’s communication was influenced by the specialty of that doctor. Thus, family physicians were more closely associated with rapport building, psychosocial exchange, and patient orientation. Physicians working in public hospitals were more likely to enjoy a higher level of patient trust compared to private hospitals [14, 15, 16]. This picture suggests that, despite the lack of knowledge, the relationship with patients was generally satisfactory and positive from the perspective of physicians. However, in studies with a target population of patients, rather conflicting data have been obtained.

The overall level of satisfaction in a doctor-patient relationship was found to be less than moderate. Patients reported that lack of training, questionable awareness of cultural norms, patient participation in decision-making, gender differences between patients and physicians and lack of time were major barriers to effective communication skills with patients and their families [17, 18, 19]. Furthermore, some patients perceived the nurses to be lacking in responsiveness and compassion. Patients further encouraged doctors and nurses to improve their interpersonal skills and take a more holistic, patient-centered approach when privacy was a major concern for participants, especially women. While most participants supported informed consent in general, some studies reported that informed consent was incorrectly obtained. In addition, there was disagreement among patients/relatives and physicians over treatment decisions, including treating patients with impaired or uncertain decision-making, and conflict with administrative policies and procedures. Finally, participants with higher levels of relationship satisfaction had a stronger sense of self-efficacy in managing their chronic illnesses [5, 17, 18, 19].

It is well known that all areas of Saudi bioethics are intertwined with religion to provide a sense of legal-ethical discourse on matters pertaining to biomedical matters [2, 3]. The study of the relationship between the doctor and the patient showed, both patients and doctors noted the positive influence of religion on health and overcoming illnesses. At the same time, religion rarely caused feelings of guilt, anxiety, or other negative emotions that can lead to an increase in the suffering of the patient. Family physicians were more likely to initiate religious discussions, and physicians with intrinsic religiosity were more likely to share their religious views [17, 18, 19, 20].

While physicians are trained to maintain health and fight disease, the data presented in this area has shown that Saudi physicians lack detailed knowledge about communicating with patients and their families. This situation can escalate when it comes to end-of-life care. That said, good communication can help minimize pain, avoid fear and suffering, and allow patients’ families to suffer less. Conversely, poor communication can lead to suboptimal care, patients and their families may be subjected to undue mental or physical suffering.

As mentioned above, Saudi patients are more likely to seek companionship than treatment. Consequently, most patients are interested in discussing end-of-life care with their physicians, and most feel that physicians should introduce the topic. Physicians must take responsibility for a timely dialog, as many patients will wait for their doctor to raise this issue. Thus, acquiring communication skills during medical education and participating in continuing education courses can lead to a competitive advantage. Medical educators should use the patient’s understanding of their care, and focus on areas of study that will help practitioners meet patient expectations when treating common flu or when caring for terminally ill patients at the end-of-life stage.

1.2 Informed consent

Patient rights are one of the most important ethical issues relating to patients, their families, and society, including such important ethical issues as: autonomy, informed consent, privacy, confidentiality, risk information, refusal of treatment, personal safety and protection, and a process for resolving patient complaints [1, 2, 21]. Informed consent is the means by which a healthcare provider informs a patient about risks, benefits, consequences, and alternatives of a given procedure or intervention. According to the Saudi Ministry of Health (1988), before delivering medical treatment or carrying out an operative procedure, the legally competent patient’s consent shall be obtained, whether they be male or female. This ethical and legal obligation for medical practitioners in Saudi Arabia stems from the patient’s right to direct the treatment process. In addition, the doctor shall adequately explain to the patient or his guardian the nature of the medical treatment or operative procedure he intends to apply [2, 9, 22]. The informed consent procedure involves assessing the patient’s understanding of the treatment, providing objective advice, and documenting the process. When providing informed consent, doctors are expected to fully disclose all medical facts related to the disease and intervention so that the patient makes a decision based on a full understanding of all the facts. The disclosure must include the following:

• Explanation of the diagnosis as much as possible to a lay patient

• Explanation of the intended procedure in non-technical terms

• Disclosure of all known side effects and benefits of the procedure

• Enable the patient to make an informed decision

• Disclose alternative procedures and treatments, their benefits and side effects

• Disclose the financial costs of the procedure, but preferably at a later stage, as this may adversely influence the patient’s decision [2, 9, 22].

Since the family plays an important role in decision-making in Saudi Arabia, patients cannot be isolated from their families, and often want to consult with family members about the religious and social significance of a given treatment. In addition, the patient often expects a trusted person to make a decision on his/her behalf [2, 9]. It could be argued that this approach to informed consent does not preserve the principle of autonomy as intended, since it often extends to the patient’s family rather than an individual’s opinion and point of view. However, the family is the central pillar of Saudi society, the basic cell of social organization in traditional and modern Saudi Arabia. Saudis are expected to be loyal and give and receive support for and from their family, especially in protecting their family members [2, 4]. Therefore, in this context, informed consent aims to inform the patient and his family about the expected consequences of the course of a treatment. Consequently, Saudi doctors should recognize the importance of informed consent in their practice, and its relation to the patient’s family. While Saudi doctors have a reasonable understanding of this, they need more training, as evidenced by the available data, both from the point of view of doctors and patients [2, 4, 9].

The overall data synthesis shows that Saudi physicians support informed consent, have a positive attitude toward obtaining consent, and know that patients should always be informed about treatment procedures. Moreover, physicians recognize that each new procedure should be consented to and seen as an ongoing process rather than a one-time decision [23, 24]. At the same time, a study among medical trainees from the Eastern Province has found that participants agreed that the surgeon could exceed consent in the case of an emergency and/or the absence of a guardian, and only a few agreed that the patient should be allowed to review their medical records or make copies [25].

Despite this knowledge and the recognition of the importance of informed consent, the quality of informed consent is low regarding experiences with informed consent processes and transparency [23, 24, 25]. Thus, some healthcare providers report that, although they have a reasonable knowledge of informed consent for surgery, most do not provide patients with the full information about a procedure before obtaining consent. For instance, a study by Alsaihati et al. among n = 140 surgeons in Saudi Arabia found that, while there is sufficient knowledge about informed consent for surgery and how to obtain it, most surgeons do not fully inform patients about the procedure before obtaining consent [26]. Some see consent as merely a preoperative routine or simply a matter of signing a document. The majority are against the use of consent for all surgical procedures [25, 26].

Physicians believe that consent should be clear and contain the necessary information for patients. One of the main considerations put forward by the doctors is that some consider the process of obtaining consent strange for Saudi psychology and are against the use of consent during the entire surgical procedure. Senior physicians are the primary physicians receiving informed consent from patients, while interns are the least comfortable with obtaining consent [5, 23, 24, 25, 26].

Regarding pediatric treatment, physicians consider parental consent mandatory and necessary from the moment the child is admitted to the hospital and throughout treatment. Moreover, the majority prefer both parents to consent, and the parental consent forms are detailed enough to obtain maximum information. In contrast, it is considered that the child’s assent form should be kept short to avoid increasing the burden on the child since the decision belongs with the parents [27, 28]. According to Saudi Guidelines for Informed Consent and Saudi Commission for Health Specialties, the age of seven is considered the age when a child can make some decisions. It is prudent to listen to them and consider their views, fully aware that the parents will give consent; children can only assent. However, children below the age of seven have no say in treatment decisions; parents make decisions. Children who have reached puberty are effectively adults, and unless there is evidence of their incompetence, they should be allowed to make decisions about their treatment. Parents may assent to the decision of a fully capable post-pubertal child under the age of majority, currently 18 years old, in Saudi Arabia [9, 27, 28].

Patient safety is a major concern in healthcare, and informed consent is critical. Health professionals are expected to make it clear that the patient is involved in the decision-making process, and not allow the patient to feel compelled to agree with their treatment decision. However, despite having knowledge and understanding of the informed consent procedures, healthcare providers in Saudi Arabia often view the procedure as a routine that can be avoided, as shown by the data provided. Therefore, it is equally important to explore the opinion of Saudi patients about informed consent: how they are informed about the proposed intervention, their role in decision-making on issues, such as a discussion of alternatives to the proposed intervention, and the risks of the proposed intervention.

The general attitude toward informed consent is positive, and this process is important for patients. However, some patients have expressed dissatisfaction with the poor quality of informed consent regarding their experience with information delivery procedures and transparent risk communication. Further synthesis of the data shows a low awareness of the patients’ rights. The consent form followed by the registration of a complaint about the service provided is the best-known guarantee of patient rights. However, patients feel that their decision is irrelevant and trust the physician to make decisions on their behalf, and are not interested in obtaining a copy of the informed consent [29, 30].

On the other hand, despite the lack of knowledge about the risks of intervention and alternative treatment, there is a desire for more self-decision-making and better disclosure. Furthermore, the general patterns show that the quality of informed consent is generally low in content and administration, whereas the doctor’s explanation predicts a higher quality of informed consent. Finally, issues relating to the lack of or incomplete informed consent attracted attention only when the procedure resulted in adverse events or patient dissatisfaction [27, 28, 29, 30].

One of the goals of end-of-life care is to prevent or alleviate suffering as much as possible, while respecting the patient’s wishes [1, 2, 3, 4]. As important as it is for disease management, informed consent in end-of-life care is especially important. Respect for wishes and decisions at the end of life gives the patient permanent freedom to choose how he/she wants to live. Informed consent demonstrates the commitment of clinicians and researchers to respecting the dignity and autonomy of patients and participants. Therefore, it is important to allow patients and their families to participate in decision-making to protect the rights and dignity of all parties involved in the informed consent process. Thus, the Saudi Council for Health Specialties has developed guidelines on informed consent as part of the ethics of the medical profession to raise awareness by involving patients and their families in health care in all medical facilities in the KSA regions [2, 9]. To ensure that an informed consent is valid, consent must be given by a professional who understands the nature and implications of the procedures. Medical procedures or scientific research require the legal proof of patient consent in Saudi Arabia. While consent can be easily explained to patients and their families, doctors’ and patients’ awareness and adherence to these guidelines in Saudi Arabia remain unclear and controversial.

1.3 Do-not-resuscitate

Physicians play a vital role by fulfilling patients’ rights and providing effective and satisfactory treatment that increases their life expectancy [1, 2, 31]. At the same time, it is equally important to have patient-centered care at the end of life for patients suffering from incurable diseases, and to support patient participation at all stages, including discussing such sensitive topics as do-not-resuscitate (DNR) order, an important decision for critically ill patients [2, 4].

Illness in Islam is considered to be a trial the patient must go through, and the doctor does not have the right to take the patient’s life [32]. However, when death becomes imminent, as determined by physicians assigned to terminally ill patients, the Islamic concept regarding the decision of the DNR must be implemented, as was recorded in Fatwa No. 12086, issued on March 28, 1409 (1989), stating: “If three knowledgeable and trustworthy physicians agreed that the patient condition is hopeless; the life-supporting machines can be withheld or withdrawn. The family members’ opinion is not included in decision-making as they are unqualified to make such decisions.”

According to the fatwa, there are six situations in which DNR is granted: (i) if the patient arrives at the hospital dead; (ii) if a team of doctors determines that the patient’s condition is incurable and their death is imminent; (iii) if the patient’s condition does not render him or her a suitable candidate for resuscitation; (iv) if the patient suffers from a severe heart or lung condition, or repeated cardiac arrest; (v) if the patient is in a vegetative state; (vi) if resuscitation is considered futile. The fatwa also clarifies that the patient’s family should be informed of the decision, but they cannot intervene as they are not considered qualified, which is why the decisions and integrity of these specialists and competent doctors are to be respected. Nevertheless, as with informed consent, medical practice in Saudi Arabia involves families and caregivers when discussing the DNR. If the family still objects the DNR policy after clarifying the fatwa, they should be offered the option of transferring the patient to another hospital that is ready to accept the patient. Despite the existing rules and legislation, a synthesis of the literature shows that the debate about the practice of the DNR continues to vary greatly [32].

Evidence of knowledge of the DNR order and fatwa in studies among healthcare professionals indicates that while most physicians participate in DNR discussions with patients and family members or decision-makers, they cannot confirm whether there is a clear local or national DNR policy [33, 34, 35]. However, most Muslim doctors believe that the DNR is not contrary to Islamic rules. The study by Almoallem et al. shows that non-Saudi physicians conducting life-sustaining treatment or DNR decisions are more likely to consult ethics committees than Saudi physicians [36]. On the other hand, Saudi doctors who were educated and graduated abroad are confident in their knowledge of ethics in medical practice, but are less confident in making life-sustaining treatment decisions or DNR orders. They also suggest that additional educational programs would increase their competence in dealing with issues related to DNR discussions. One approach that has been proposed to improve knowledge is the establishment of a structured curriculum to teach skills relating to end-of-life issues, such as DNR orders in the Saudi medical system [5].

Essentially, physicians and nurses feel that the patient should be involved in the decision-making process and that each patient should receive advance directives [33, 34, 35, 36]. A living will (advance directive) is a document in which a healthy person explains in writing what treatment one would accept or refuse at a critical moment when one may not be able to express one’s wishes, i.e., in case of emergencies, incurable diseases and situations where they may not be able to make decisions. This document helps the attending physician to withhold or withdraw certain medical procedures and allows the patient to die naturally. In addition, Muslim patients, incompetent to make health care decisions, can approach an authorized representative to express their wishes and make treatment decisions on behalf of their best interests [2, 9, 22].

The most common limitation to meaningful DNR discussions is a lack of understanding of the patient’s family, education level, and cultural background. The study by Abu Yahya et al. shows that most nurses want to be aware of a legal basis for DNR policy, and want to know more about patients’ rights regarding end-of-life and the use of the DNR order [37]. The pattern reported by the nurses is similar to that seen in n = 203 pediatricians in the study by Aljethaily et al. Thus, most of the study sample could not correctly determine the DNR, the policies and procedures are unclear to them. While half of the participants believed that the DNR is a doctor’s decision, only a few reported that they were comfortable discussing the DNR with parents [35]. Most believe that patients are entitled to intensive care, despite their incurable disease.

In contrast to this general knowledge of doctors, residents, and nurses about the DNR and its procedures, studies among medical students have found that most of them are familiar with the DNR order, and believe that there is a fatwa governing the DNR on an Islamic level [38]. Moreover, compared with information and knowledge about informed consent, students report that lectures at medical schools about the DNR are the main source of information. Similar to practicing doctors, Saudi medical students strongly agree that patients should be involved in DNR decision-making and suggest that misunderstanding patients and their families is one of the most important barriers to effective DNR discussions [36, 37, 38].

Data on the knowledge of the DNR order among the general public and patients show that while most populations in various studies can determine the DNR order to some extent, they require more in-depth knowledge. This is especially noticeable when participants’ opinions regarding the compatibility of the DNR order, in terms of religion and ethics, are divided along ethical, religious, and medical grounds [5, 39, 40]. In fact, medical education, higher education, and knowledge of the DNR are associated with the acceptance of DNR. The most common reasons for the DNR’s refusal are hope, cultural factors, and religious concerns, and the DNR’s orders are thought to be a response to a reduction in the number of physicians providing clinical care. As with informed consent, the study by Al Ahmadi et al. shows that most participants choose the physicians responsible for the DNR decision [40]. The data synthesis can be expressed as follows: although patients can make informed judgments about end-of-life decisions, they also lack knowledge about health status, advance planning and life support, but are willing to participate in end-of-life care planning discussions with doctors.

As an extremely sensitive and controversial area that every doctor must deal with, the DNR remains an ethically elusive topic. In Saudi Arabia, the DNR is a legally binding order applicable only in the event of cardiopulmonary arrest, and does not cover the suspension or discontinuation of other supportive care. While this policy and fatwa are available to healthcare providers and the general Saudi public, the extensive evidence presented shows a significant degree of heterogeneity in knowledge and in the application of the law.

2. Summary

End-of-life care is the support and care provided in the period leading up to death. Some people may want to stay home when they die, while others prefer to be treated in a hospital or facility until the end. The truth is that everyone deserves to be allowed to maintain a sense of normality, despite death being the inevitable result. Everyone, regardless of age, culture, background, beliefs, or health condition, has the right to feel comfortable and pleased as their last day approaches.

The main goal of the healthcare system and providers is to cure the disease and alleviate symptoms and, in end-of-life care, the main goal is to improve the quality of life of patients facing complex problems associated with the disease and to provide psychological assistance to their families. While physicians have witness death many times, patients and their families need time to comprehend and understand the entire process and procedures of this unique and often devastating experience. Patients are primarily interested in discussing end-of-life care with their physicians. Therefore, clinicians should take responsibility for initiating a timely dialog to reduce patients’ fear of pain, humiliation, abandonment, and fear of the unknown. Open and direct conversations with patients and their families can alleviate many of these fears and lessen the sense of isolation experienced by the dying person. Thus, providing quality end-of-life care requires understanding and empathetic communication through discussions in which most decisions are made comfortably and without disagreement.

Some of the core principles of end-of-life care in Saudi Arabia are respect for dignity of both the patient and caregiver; sensitivity to the wishes of the patient and family; management of pain or other symptoms; assessment and management of the psychological and social needs of the patient and family. However, despite this well-established evidence and these policies governing Saudi medical ethics, exploring the primary areas that define the basic needs for end-of-life care suggests that this domain is still in its infancy. What is even more alarming and thought-provoking is the lack of knowledge of physicians who are expected to educate patients and their families who are not always aware of all stages of treatment.

Healthcare professionals often neglect good clinical practice by failing to comply with informed consent. This insensibility leads to the reluctance of patients being aware of the procedures, although they have expressed an interest in decision-making. On the other hand, when treatment concerns children, doctors consider it their duty and obligation to present all stages to parents. This suggests that despite not being aware of certain fatwas or rules, Saudi physicians are aware of the importance of adherence to bioethics, which can be seen as another issue of selective application of medical ethics (e.g., children vs. adults).

In order to further develop end-of-life care services in this country and focus efforts on this vital sector, future research and education should aim to involve healthcare professionals, patients and their families in the decision-making process by providing knowledge on how to communicate openly and honestly, with empathy, dignity, and kindness. Moreover, multilateral cooperation is of great importance for enriching knowledge and improving the attitude of healthcare providers toward all areas of bioethics and their application in practice. This approach will help maintain transparency in care, better serve patients, and provide accountability for high-quality care and outcomes.