|Year : 2022 | Volume
| Issue : 2 | Page : 50-57
Advanced medical directives or written living wills among saudi intensive care units, current practice and need to optimization: Opinion of trainees
Eyad Fareed Alsayed1, Baraa O Tayeb2, Abdulaziz Boker2
1 Department of Anesthesia and Critical Care, Faculty of Medicine, King Abdulaziz University; Anesthesia Services Division, King Abdulaziz University Hospital, Jeddah, Saudi Arabia
2 Department of Anesthesia and Critical Care, Faculty of Medicine, King Abdulaziz University; Anesthesia Services Division, King Abdulaziz University Hospital; Clinical Skills and Simulation Center, King Abdulaziz University, Jeddah, Saudi Arabia
|Date of Submission||13-May-2022|
|Date of Decision||02-Jul-2022|
|Date of Acceptance||21-Sep-2022|
|Date of Web Publication||30-Sep-2022|
Eyad Fareed Alsayed
Department of Anesthesia and Critical Care, Faculty of Medicine, King Abdulaziz University, Jeddah
Source of Support: None, Conflict of Interest: None
Background: Ethical dilemmas are mostly developed in critically ill patients near the end of life. The point where the treating physician decides to withhold the intensive medical support represents a daily challenge on the current intensive care medicine. Considering patients' wishes in near-death events and their vision, through writing an advance medical directive (also known as Living Will), was introduced early in the developed western countries. On the other hand, it is not easy to talk about near-death events in many other regions of the world, mainly because of cultural and religious differences. Objectives: The study aimed to explore the current practice regarding near-death events in one of the Middle Eastern countries, particularly in Saudi Arabia. The main objectives of this study were measuring the involvement of patient's wishes in near-death medical decisions and analyzing the need and usefulness of encouraging the practice of writing advance medical directives in this demographic area. Methods: The data were obtained from a group of Saudi intensivists, who are dealing the most among other groups of physicians with near-death events, almost daily. They were affiliated with ten hospitals or intensive care units in Saudi Arabia. Data were collected during the period from March 2018 to July 2018. It was done based on participants' knowledge. Due to the low response rate, data were analyzed using descriptive statistics only. Results: A total of 51 physicians working in different intensive medical care units had responded to our survey. About 88% of them were male, 47% aged between 31 and 40 years of age; with different levels of experience (45% were residents, 35% worked as a senior registrars and 20% were consultants' intensivists). Although in Saudi Arabia, a (living will) be not considered legal writing, 31.35% of the respondents had seen many cases where patients openly discussed their near-death wishes with the family members. From the respondents, 84.31% believed that a living will tend to help in their decision-making, and 92.16% considered living wills helpful in making the final call regarding withholding/withdrawing the treatment. According to 72.55% of them, the presence of living wills would help in decreasing the near-death anxiety and depression among family members of a deceased patient and tend to help ease out the situation as they consider it as a final wish of the patient. Conclusion: It is concluded that the patient's wishes are essential in making an end-of-life decision; they should be represented by the patient and should also be respected by the clinical staff. However, more studies needed to explore the willingness of the general population in this culture to express their wishes and the best method to elicit these wishes should be sought, with respect to the cultural and religious beliefs and differences.
Keywords: Advanced medical directive, end of life decisions, ethical dilemmas, intensive care units, living will
|How to cite this article:|
Alsayed EF, Tayeb BO, Boker A. Advanced medical directives or written living wills among saudi intensive care units, current practice and need to optimization: Opinion of trainees. Saudi Crit Care J 2022;6:50-7
|How to cite this URL:|
Alsayed EF, Tayeb BO, Boker A. Advanced medical directives or written living wills among saudi intensive care units, current practice and need to optimization: Opinion of trainees. Saudi Crit Care J [serial online] 2022 [cited 2022 Dec 6];6:50-7. Available from: https://www.sccj-sa.org/text.asp?2022/6/2/50/357643
| Introduction|| |
The ethical dilemma was raised in modern intensive care along with the growing advances in the medical support that can be provided to the patients. Mechanical ventilation and hemodynamic support both are essential when the patient cannot respire or have acute hemodynamic instability. These maneuvers were invented to support the physiological bodily process until it becomes able to regain its own functions. Whenever we started to provide this intensive medical support to a body that cannot retrieve his function; it means we started to provide a nonmeaningful support. Nevertheless, it will be associated with more pain and suffering to the patient as much as unnecessary procedures and interventions will take place before he dies.
The decision to provide or discontinue intensive medical care initially originated from the doctor and not the patient or the concerned family. The patient's awareness and taking into account her/his desire to refuse medical care, the right to die from natural causes, and the desire to participate in end-of-life decisions are all matters that have increased interest over time. Together, these have raised the fear of continuing to provide critical medical care endlessly by offering unwanted or harmful treatments with a consecutive rise in worrying about the patient himself, or the avoidable financial and psychological pressure on her or his family.
In Western countries, those concerns led to the initiation of advance care planning (ACP) in the form of living wills or advanced medical directives (ADs). ACP is based on the fact that it is the patient's right to take part in the decision-making regarding his medical condition and this right should be preserved wherever possible. ACP has been defined as a process of formal decision-making that aims to help patients establish decisions about future care that take effect when they lose capacity.
However, in many other countries in the world is patient involvement in such decisions still variable. In the Middle East, the ACP is not officially established either because of lack of familiarity or lake of organizing laws, or both. It is essential to mention that the cultural, regional, and religious differences play a significant role in this regard.
In Saudi Arabia, for instance, there is a shortage of feasible studies about the current practice of ACP. In addition, the attitude toward it on the level of the medical staff or the general population was not adequately explored.
As the advanced directives tend to facilitate patients in the best possible way toward the end of their life. Therefore, the present study had analyzed the attitudes of Saudi doctors toward advanced directives. The study had also analyzed the factors that affect the doctor's preferences toward the advanced directives. The Saudi people are unfamiliar with the concept of AD, which has resulted in increased dilemmas in the selection of life-support and affects clinical decision-making. Providing Saudi nationals with proper knowledge regarding AD is a crucial step to promoting the socio-medical practice. Therefore, the present study aims to assess the attitude of Saudi nationals, who are among the Saudi intensivists, toward advance medical directives.
Ethical dilemmas are mostly developed in critically ill patients near the end of life. The point where the treating physician decides to withhold the intensive medical support represents a daily challenge on the current intensive care medicine. Considering patient's wishes in near-death events and their vision, through writing an advance medical directive (also known as living will), was introduced early in the developed Western countries.
On the other hand, it is not easy to talk about near-death events in many other regions of the world. It has been evaluated that the necessary awareness about ADs lacks among the general population. In most of the cases, the differences occur based on religious or cultural grounds. Such limitations make it even harder to educate them. Furthermore, they do not have the basic understanding that it is ethically allowed if a patient wishes to die of a natural cause and refuse any intervention. It also created hurdles in legalizing and developing ADs in developed countries.
Tayeb et al. had explored the understanding of the patient to ACP in one of the Hematology-oncology Wards, focusing on incurable cases and patients under palliative conditions; he had discovered that the wishes of patients near death differ from those of patients in the Western world. When most patients' wishes in the Western world are centered on quality of life and painless end-of-life events, this has not been the case in Saudi Arabia. Muslims consider suffering a divine test that atones for one's sins. The researcher has met patients who reject painkillers because they worship God with their sense of pain and showing patience, believing that this earns them more good deeds and makes them purer and purer. Moreover, the study also showed other wishes for this Islamic community that was not mentioned in Western studies such as dying heading to Qibla (heading toward the Holy Mosque in Mecca) or death in one of the sacred places (e.g., Mosque) or times (e.g., Ramadan).
Nevertheless, in another publication, Al-Jahdali et al. had refused the definitive linkage between the religion and the limited spread of ADs in the society. In his trial to explore the Term from Islamic perspectives, he found that the prophet Mohammed (the prophet for the Islamic Religion) refused to take the medications at the end of his life as he knew that he is facing an end-of-life event. Most of the patients showed a total lake of knowledge about two of the essential procedures near end-of-life events, namely cardiac resuscitation and mechanical ventilation. Moreover, the study showed that 82% and 74% of the patients did not know any information about these maneuvers, respectively.
This lack of awareness might be because there is no sufficient debate or literature work published. That is why not much advancement has been made in Middle Eastern countries, and for so, Saudi intensivists are not much aware of it. Thus, it was decided to take ethical theories into account to find out the possible reasons behind the change in the relationship between physician and patient.
China was considered as well in such regards. It was identified that most of the Chinese people were unfamiliar with the concept of ACP as well as ADs. Such lack of awareness was taken into account as it could result in poor decision-making and life-support choices. To perceive a clear picture, a survey was conducted. Participants did not have dementia or malignancies. The end result was that highly educated people had a greater awareness of ADs than the less educated ones. The majority of people choose hospitals as their preferred place to spend the last days of their life, but without unwanted intervention. Once this survey was conducted, many patients were willing to make medical decisions in advance. Although the awareness of ADs is still low in China and many such developed countries, it is of utmost importance that they are provided with the proper education and knowledge regarding culturally sensitive issues as well as to start promoting sociomedical practices.
Mainly, when it comes to critical illness, decisions like limiting or withdrawing life-support in the intensive care unit (ICU) are often made without patient's will or their family's inclusion. Whereas in cases where relatives are asked to make the decision, they get under emotional stress, or they end up making decisions that are not accurate or appropriate to the patient's health situation. Many factors can influence the decision of whether to continue providing intensive medical care to the patient or not, as the age and the presence of a preexistent severe medical condition. Furthermore, from the patients' perspective, the factors may vary, like their age, number of children, their education, and knowledge regarding CPR and its consequences.
Specific protocols did come into existence to facilitate decisions regarding the 'do-not-resuscitate' (DNR) policy. These protocols were in accordance with ensuring patients that they can make decisions for themselves as well as their rights are preserved.
Although advancements had been made in this regard, many countries in the middle east still left where DNR is considered a controversial issue, like in Iran. Sabetian et al. investigated the efforts that were made regarding ADs in Iran. He suggested that there should be proper implementation and deployment of DNR policies to reduce psychological stress among patients and their family members as well as to prevent prolongation of death.
The concept of CPR was used to rescue patients, who were found pulseless. With the continuation of CPR; it was later found out that it did not prove out to be beneficial, but instead ended up inflicting suffering to the dying patient. The reason behind such lack of awareness is that there are no national medical guidelines regarding DNR, and for so, the Saudi intensivists are not much aware of it. The only reason why DNR is taken into account in KSA is when the majority of physicians decide to go about it. Physicians usually opt for DNR when they agree that they would not be able to receive meaningful benefits from CPR.
However, it is of utmost importance that Saudi intensivists become aware of ADs and consider it as a basic right of every patient to decide for himself regarding his end-of-life preference.
| Research Methodology|| |
In terms of research methodology, the study had enlisted medical sub-specialists, who are solely responsible for taking care of critically ill patients. During the period from March 2018 to July 2018, data had been collected as a part of a feasibility study. It was done based on participants' knowledge. This survey was comprised 2 parts; the first part will include the demographic details of the participant. These details include the age, gender, and position of the participant. Whereas the second part was based on their knowledge and attitude toward advanced directives. It will be done in accordance to find out how many people are aware of ADs as well as what are their views regarding such issues. In most cases, people are not much aware of ADs, and it creates an obstacle when it comes to make decisions regarding life support or DNR. However, due to the low response rate, we could not apply inferential statistics. Once the survey was completed, data were analyzed through descriptive statistics only and were summarized accordingly.
| Results|| |
For this study, the data were obtained from 51 physicians working in intensive medical care, who were affiliated from 10 hospitals or ICUs. Among these respondents [Figure 1], 88% of them were male sub-specialists; whereas, only 12% of these respondents were females. Moreover, 47% of these participants aged between 31 and 40 years of age; whereas, 25% of them were <30 years old. Furthermore, these subspecialists were asked about their position in these industries, for which 45% of them stated that they are designated as a resident; whereas, 35% of them were designated as a senior registrar and 20% were consultants' intensivists. In addition, these respondents were asked how often they partake in advanced medical care planning; 37% of them stated that they go about advanced medical planning weekly; whereas, 25% of them stated that they go about medical care planning daily. About 51% of these respondents were associated with the Western region such as Makkah, Almadinah, Altaif, and Jeddah. However, 33% of these subspecialists were from the middle region, like Alqassim and Riyadh.
In our survey, we tried to explore different aspects regarding the current practice of the advance directives in Saudi Arabia [Figure 2], the awareness of this practice among the Saudi intensivists, the Impact of a legalized living will on the current practice. We also aimed to estimate its impact on the relatives and surrogates of a dying patient who will probably not benefit from prolonging the intensive medical support.
|Figure 2: Current Practice and the Impact of a legalized Living Will on the Decision-making|
Click here to view
Even though in Saudi Arabia, a living will be still not considered legal writing, the respondents were asked to state whether they have seen such situations where patients openly discuss writing a living will with their family members. As a result, 68.63% of the respondents never saw such a case in their life whereas, 31.35% of them stated that they had seen many such cases where patients openly discuss writing a will. Moreover, these respondents were asked to state their opinion regarding engaging patients in decision-making regarding near-death events. 70.59% of these respondents affirmed this statement as, according to them, one should respect patient wishes. Whereas, 29.41% of them did not consider that it was all right to engage patients in such practices. In addition, respondents were asked whether a living will play a vital role in decision making regarding withholding or withdrawing the treatment. The findings revealed that 84.31% of these respondents believed that a living will tend to help in their decision-making, whereas 15.69% did not consider it an integral part of such a practice. Respondents were asked that, in a situation where advanced intensive medical care is not paying off and not showing fruitful outcomes, whether a living will help them in making the final call regarding withholding the treatment. As a result, 92.16% of these respondents considered living will helpful; whereas, only 7.84% of them did not consider a living will beneficial in this regard.
Participants were further asked if they believe that living will from the patient's end changes the perspective of family members regarding practices as withdrawing or withholding. Among these respondents, 86.27% of them affirmed this statement; whereas, 13.73% did not think that just because of legal writing, the perception of family members can be changed.
The intensivists were asked about their opinion regarding the living will and whether it helps in decreasing the anxiety and depression among family members [Figure 3]. According to 72.55% of them, living will tend to help ease out the situation as they consider it as a final wish of the patient. However, 27.45% of respondents did not find writing a will as a helpful measure.
To measure the cultural Impact and the religious beliefs on the current practice of advance medical directives in Saudi Arabia, respondents were asked to respond to this Statement: (From a religious point of view, the patient has no right to refuse the medical treatment. Every patient should receive the full intensive medical support unless we notice that we are prolonging an active dying process). The responses from the intensivist to this statement were very inconclusive as the responses were almost uniformed distributed (23.53%, n = 12 strongly disagreed/13.73%, n = 7 disagreed/21.57%, n = 11 were neutral/21.57%, n = 11 agreed/19.61%, n = 10 strongly agreed).
| Discussion|| |
Our practice – in most of the case – in Saudi Arabia meanwhile; that withholding or withdrawing the treatment from a patient is only acceptable in a Hopeless case, which already reaches a state of the dying process. Three consultants in the field should assess this situation and sign a written form that continuing intensive care is only prolonging the active dying. There is no real influence on the patient himself or their relatives on the situation.
Most of the respondents to our survey (84.31%, n = 43%) agreed that introducing and legalizing advanced medical directives in the country will make an additive value to the daily practice. It is not only because of the appreciation of patient's wishes and respecting their own decisions, but it is also relieving the stress from the treating physicians themselves involved in such Decisions. This practice does not mean that every patient who has such an advance directive will automatically receive a DNR order.
It worth to mention that deciding to limit intensive care support is a nerve-wracking procedure. It needs a great experience; confidence, and it applies more psychological stress in addition to the daily fundamental decisions the intensivist must take. According to our respondents, most of them (92.16%, n = 47%) find the presence of (advance directives) will ease the decision of withholding or withdrawing the treatment. These findings were also described by Periyakoil et al. This workgroup made a comparison between the attitude of two groups of physicians in two different periods to explore the impact of the spread of this practice on their attitudes. They used the results of a study done on a cohort of doctors in 1989 (1 year before the law was passed in the USA; Patient Self Determination Act in 1990) and applied comparative research on a cohort from 2103. The 2013 cohort had more confidence in their decision if it complied with the medical advance directive (P = 0.001, AUC = 0.58) and were less apprehensive about the legal consequences of withdrawing treatment if they were compatible with the ADs (P = 0.001, AUC = 0.57). However, they did not feel that the spread of the procedure led to less invasive medical interventions, even in patients who did not have ADs (P = 0.001, AUC = 0.77).
Practicing advanced health-care directives were introduced early in developed countries. For example, in the USA, the Patient Self-Determination Act was passed by the United States Congress in 1990 as an improvement to the Omnibus Budget Reconciliation Act. This law required the concerned institutes to develop strategies and regulations to facilitate the application of the advance directives. As well as inquire about their existence, recording the preferences in the patients' medical files in various institutions such as hospitals or nursing homes.
In contrast, in our survey, the majority of the respondents (68.63%, n = 35) have never seen a case where the patient discussed his wishes regarding end-of-life concerns with his family members either in written form or even verbally. These results emphasize again that discussing near-death events and patient participation in decision-making is not a common practice in this society.
Dealing with surrogates in the daily intensive care practice makes another challenge to the intensivist. They support the patient in his last days or hours in life; spend a lot of time and effort to be close to the beloved patient. No matter what the patient has experienced, many of them will always still have hope that the patient will improve and go home soon to practice his regular daily life activity. Going to the relatives and telling them that the patient is not improving with our intensive medical treatment and he is already in a dying process well sometimes faced with a lot of anxiety and depression from the relatives. It was shown in the literature that the presence of a living will and that the family knowing the patient's wishes regarding end-of-life decisions will lead to more acceptance from the patient's relatives and will be associated with less degree of depression and anxiety among them. In a Prospective controlled trial, Detering et al. randomized 309 inpatients, aged 80 years and over and were in good mental health, into two groups. One was provided with regular healthcare and the other provided with the same health care in addition to ACP. Then he followed them for 6 months or until they died. Of patients who died within 6 months and were in the intervention group, family members who exposed to deceased patients had significantly less stress (intervention 5, control 15; P < 0.001), less anxiety (intervention 0, control 3; P = 0.02), and less depression (intervention 0, control 5; P = 0.002) than the control group. It is noteworthy that the wishes of the deceased in the intervention group were likely to be known (25/29, 86%) and, therefore, easier to implement than the control group (8/27, 30%; P < 0.001).
The higher satisfaction level demonstrated by this study in deceased family members in the intervention group was also consistent with many other studies.,, That was also well reflected in the present study as most of the respondents (86.27%, n = 44) were aware that the presence of the advance medical directives would increase the acceptance for such decisions (withholding/withdrawing of the treatment) from the relatives point of view, and (72.55%, n = 37) were convinced that the presence of (a living will) will decrease the onset of associated near-death depression and anxiety among the relatives.
Interpretation of living will is a daily challenge to ICU doctors even in the Western world, where the doctors have already dealt with a lot of such cases. Most of the patients present in acute deterioration necessitating a rapid intervention (e.g., intubation and mechanical ventilation) while they have a (living will) wishing not to get intubated in case they will not be able to practice their daily life activity after this phase of the disease. The formulation of the living will is always loos and not specific and might not fit the clinical picture the patient presenting with.
The exception to this case is noticed in specific cases when the living will is thoroughly discussed within a process of advanced health-care planning, including (DNR/DNI Status) with the treating team (for example: in palliative care Situations). No wonder why the living will in most of the cases, together with involving the Surrogate in the decision making, will only aid the clinical judgment from the intensivist rather than make a definite guide for him. As Hartog and his colleagues compared, in their retrospective cohort study, patients who have had advanced directives refusing “life-sustaining measures” to those without advance medical directives and showed that the presence or absence of advance directives did not influence the length of stay in the ICU or the therapy limiting the decisions. Although, cardiopulmonary resuscitation was less performed in those with advance directives (9% vs. 23%, P =0.029) and more DNR orders (DNR; Do Not Resuscitate) were applied to them (77% vs. 56%, P =0.007).
While improving quality of life is more important for the Western population than extending life; i.e., regardless of health status, this might not be the case for the Islamic societies. and more studies are needed to seek the feasibility of introducing advance care directives in Islamic societies. This cultural Impact was clearly reflected in the responses to our statement: (From a religious point of view, the patient has no right to refuse the medical treatment. Every patient should receive the full intensive medical support unless we notice that we are prolonging an active dying process). The responses from the intensivist to this statement were very inconclusive as the responses were almost equally distributed (23.53%, n = 12 strongly disagreed/13.73%, n = 7 disagreed/21.57%, n = 11 were neutral/21.57%, n = 11 agreed/19.61%, n = 10 strongly agreed).
Most of Muslim patients believe that feeling pain and showing patience at the end of life will help to clear one's sins and will be rewarded more by God., Nevertheless, No doubt that electing patient's wishes regarding near-death events is more important for particular groups like terminally ill patients or patients in palliative care because of malignancy or other chronic diseases. Furthermore, the studies conducted in this subgroup of patients in Saudi Arabia showed that these patients are willing to engage in discussions about end-of-life care and willing to make their own decisions with certainty in this regard. Considering these cultural differences, it would not be easy for the population in the country to accept discussing near death events in advance with them. That will make a new challenge in introducing such an idea to society.
Even in the Western world, specifically in an extensive population-based survey among seven European countries, it was showed that a large proportion of the public prefers not to make decisions about their care in advance in case of incapacity. Another sizeable population-based survey in the USA showed that the most reason not to have an advance directive is low awareness. In this study, only 26.3% of the 7946 respondents had an advance directive. These results stress again on the need for society education, raising the awareness of this practice, and the need to introduce this practice throw treating physicians or the family physicians when they see that the patient must fulfill an advance directive plan. Utilizing the Internet can play an essential role in raising awareness among society members. Preparing patients for communication and decision-making through a patient-centered Website significantly improved engagement in the process of ACP and encouraging behavior change.
However, it is rarely the job of the intensivist to discuss the living will of the patient when he does not already have one. Formally, it will be introduced by the Family physician or the treating Team when the patient is still mentally capable of discussing and communicating his wishes. Although the Family Physician or the General Practitioner has a long-term relationship with the patient and seems to be the best to trigger such conversation about ACP, there were many barriers identified in the Literature preventing the General Practitioners from being the initiators for such discussion. For example, general practitioners' unfamiliarity with the terminal cases, patients lack of knowledge about their diagnosis, treatment options, and prognosis in complex medical situations, and the unawareness of the right moment to initiate ACP, all were identified as barriers.
In our survey, the majority (80.39%, n = 41) of the respondents have chosen a multidisciplinary approach as the best method to explain the different situations and discuss this sensitive issue of near-death events with the patient thoroughly [Figure 4]. This perspective from the respondents strengthens that it is a matter of communication issue between the patient and the health care provider either as a family physician or even as a treating team, the communication between the health care providers should also be enhanced and optimized, and this will not be reached without adequate training. There are many interventions which can improve triggering and carrying out better-systemized conversations with the patient about goals of care in near-death events; policies to facilitate initiation of advance directives, the standard of procedures to identify the right patient and trigger the discussion at the right time and better education for physicians, patients, and their family members.
|Figure 4: In case of writing (a patient's living will) it is advised to write it together with a medical staff who can explain the different situations and discuss this sensitive issue of near-death event thoroughly. Who will fulfill this criterion the best in your country?|
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A noteworthy limitation of this study is that it was performed on only one part involved in the decision-making, the intensive care physicians. Whereas issues related to end-of-life care are more complex and involve many parties. Moreover, the participants in this study – mainly due to low response rate and failure to access – were not representative of the sample examined. Larger studies are needed to explore this issue and to infer the data collected.
| Conclusion|| |
The patient's wishes are essential in making an end-of-life decision; they should be represented by the patient and should also be respected by the clinical staff. However, more studies needed to explore the willingness of the general population in this culture to express their wishes, and the best method to elicit these wishes should be sought, with respect to the cultural and religious beliefs and differences. More studies should be done on the population to estimate their acceptance and willingness to discuss such issues. Another challenge to this practice whether the general population in Islamic society generally and in Saudi Arabia mainly will be able to understand the differences between limiting and continuing their intensive medical care and the subsequent result of these predefined decisions.
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Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2], [Figure 3], [Figure 4]