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Saudi Journal of Kidney Diseases and Transplantation
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ORIGINAL ARTICLE Table of Contents   
Year : 2009  |  Volume : 20  |  Issue : 2  |  Page : 232-239
Advance care planning preferences among dialysis patients and factors influencing their decisions


1 Pulmonary Division, King Saud Bin Abdulaziz University for Health Sciences, Riyadh, Saudi Arabia
2 Intensive Care Departments, King Saud Bin Abdulaziz University for Health Sciences, Riyadh, Saudi Arabia
3 College of Medicine, King Saud Bin Abdulaziz University for Health Sciences, Riyadh, Saudi Arabia
4 Nephrology Division, King Faisal Specialist Hospital and Research Center-Jeddah, Saudi Arabia
5 Division of Nephrology, King Saud Bin Abdulaziz University for Health Sciences, Riyadh, Saudi Arabia

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   Abstract 

To determine the resuscitation preferences of hemodialysis (HD) Saudi patients, we con­ducted a cross-sectional, observational descriptive questionnaire study in two major tertiary hospitals in Saudi Arabia from March to December 2007. We enrolled all the patients on HD for two years or more, and excluded the patients who were transplant candidates, confused, or demented. The questionnaire was com­posed of 4 sections. The first 3 sections were concerned with demographic data, education levels, employ­ment, family size, number of children, and functionality status besides knowledge about cardiopulmonary resuscitation (CPR), mechanical ventilation, and ICU admission. The fourth section contained different sce­narios and questions on personal and preferences such as end of life decisions, medical interventions, CPR, ICU admission, and the decision maker in these events. A total of 100 patients (53% males, 67% Saudis, and 85% married) were enrolled in the study. The mean duration on dialysis was 6.0 years (± 4.1). More than 70% of the patients viewed themselves as above average in the religiosity score, and 44% disclosed a good life quality. More than 95% had little or no knowledge about cardiac resuscitation, intubation, and mechanical ventilation. The majority of the patients authorized their treating physician to decide for them about cardiac resuscitation in case they did not make advanced directives and only 22% believed that this decision should be made by their family members. If their physician believed their condition was hopeless, 77% preferred to stay at home. We conclude that the majority of our patients had limited awareness about cardiac resuscitation measures. The majority of the patients trust their physicians to decide about the futility of resuscitation. Patients were able to decide reasonably well when they are well informed.

Keywords: Dialysis, Advanced directive, Questionnaire, Cross-sectional, Hemodialysis

How to cite this article:
Al-Jahdali HH, Bahroon S, Babgi Y, Tamim H, Al-Ghamdi SM, Al-Sayyari AA. Advance care planning preferences among dialysis patients and factors influencing their decisions. Saudi J Kidney Dis Transpl 2009;20:232-9

How to cite this URL:
Al-Jahdali HH, Bahroon S, Babgi Y, Tamim H, Al-Ghamdi SM, Al-Sayyari AA. Advance care planning preferences among dialysis patients and factors influencing their decisions. Saudi J Kidney Dis Transpl [serial online] 2009 [cited 2019 Nov 20];20:232-9. Available from: http://www.sjkdt.org/text.asp?2009/20/2/232/45528

   Introduction Top


The majority of patients with chronic and serious medical conditions prefer to make their own decisions regarding the acceptability of life-sustaining care. [1],[2],[3] Moreover, studies have shown that patients prefer to discuss advance directives early in the patient-physician rela­tionship and that advance care planning can be effectively introduced in the outpatient setting. [4],[5],[6],[7],[8],[9],[10]

Studies also have shown that patients often discuss end of life issues with their families but rarely with their physicians. [11],[12],[13]

Many physicians find that discussing death, dying, or advance directives with patients or their families to be stressful. Patients' preferen­ces regarding cardiopulmonary resuscitation (CPR), admission to intensive care units (ICU) and end of life medical decisions are in most cases left to family members, and patients may be subjected to medical measures that may be contrary to their wishes. Several studies repor­ted that discussions of physicians with hospi­talized patients about CPR and ICU admission preferences occur infrequently and have variable content. [14],[15],[16],[17] However, Ezekiel J et al, found that structured interviews on these topics are rarely stressful and frequently helpful. [18]

The issues surrounding advance directives are complicated and require well-practiced communication skills with patients by physician. [17],[19],[20] Guidelines have been published to help nephrologists effectively address the issues related to dialysis initiation and withdrawal. [21]

Studies on health care provider-patient discu­ssion about the end of life issues in a variety of patient populations have shown that most of the time health care providers fail to identify the predictors of patients' preferences. [17],[22]

The decision about advance directives is in­fluenced by many factors, including prognosis, overall patient performance status, quality of life, and socioeconomic support. Other factors may also include patients' beliefs, age, ethni­city, family support, number of children, level of education, and knowledge about CPR and its outcome. [23],[24],[25],[26]

Previous studies have shown that approxi­mately 50% of patients undergoing chronic dialysis would not approve attempts of CPR if it would result in coma, persistent vegetative state, severe dementia, or terminal illness. [27]

Studied have shown that end-stage renal di­sease (ESRD) patients who refuse dialysis are unlikely to choose other life sustaining mea­surements. However, about one third of pa­tients who choose dialysis, refuse other life sustaining treatments, and more likely to refuse cardiac resuscitation than to discontinue dialysis. [28],[29],[30]

The concept of advance directives, including health care issues, is a deep-rooted concept in Islamic teachings, though rarely practiced in the Islamic world today. Furthermore, although Islamic beliefs encourage Muslims to docu­ment, revise, and update their living will perio­dically, this issue seems to be ignored in cu­rrent Islamic culture, and there is a paucity of literature addressing this issue in Muslims communities.

The objective of this study is to study the preferences for CPR and end of life medical intervention among Saudi hemodialysis patients.


   Methods Top


This is multi-center, cross-sectional, and ob­servational descriptive study conducted in two major tertiary hospitals in Saudi Arabia; King Abdulaziz Medical City, King Fahad National Guard Hospital (KAMC-KFNGH-Riyadh), and King Abulaziz University Hospital (KAUH­Jeddah) from March to December 2007.

We developed an Arabic language structured questionnaire comprising 4 sections. The first 3 sections were concerned with demographic data, education levels, employment, family size, number of children, and functionality status besides knowledge about cardiopulmonary re­suscitation (CPR), mechanical ventilation, and ICU admission. The fourth section contained different scenarios and questions on personal and preferences such as end of life decisions, medical interventions, CPR, ICU admission, and the decision maker in these events.

The questionnaire was initially tested on 20 patients, to evaluate the clarity, and unders­tanding of the questions and to correct any am­biguity. The Research and Ethics Committee in KAMC-KFNGH-Riyadh approved this study.

Included in the study were all the patients on hemodialysis for two years or more, but we excluded the patients who were transplant can­didates and those who refused to take part in the study and those confused or demented.

The patients consented to participate in the study, and they were asked to complete the en­tire questionnaire during their dialysis session.

Statistical analysis

All data were entered into EXCEL software then transferred to SPSS software version 13 for analysis. Statistical analysis was performed by unpaired t-test and the Mann-Whitney U­test for non-parametric data, where appropriate. A p-value of less than 0.05 was considered significant.


   Results Top


Of 420 patients undergoing dialysis only 100 patients met our inclusion criteria and were enrolled in the study. 10 patients refused to continue after completing part of the ques­tionnaire. The mean age (± SD) of the patients was 51.1 years (± 15.5), 55% were males. The majority of the patients were Saudi (67%) and 85% were married. The mean number of chil­dren was 6.0 (± 4.0), and the mean family size was 6.2 (± 3.2). Only 10% of the responders were employed, and the mean duration of educa­tion was 5.6 years (± 5.54). The mean duration of dialysis was 6.0 years (± 4.1) years. [Table 1] shows the characteristics of the study patients.

Using a Visual Analogue Scale for measuring quality of life, that ranged between 0 (poor quality of life) and 100 (excellent quality of life); the majority of patients (83%) scored themselves as having a quality of life of more than 40%. To assess religiosity, we also used Visual Analogue Scale that ranged between 0 (not religious al all) and 100 (very religious); 70% scored 70% or greater [Table 1].

Of all the respondents, 72% were admitted at least once to hospital in the preceding 24 months, with 52% to the ICU; 37% of the res­pondents have visited friends or family mem­bers in an ICU. The percentage of patients who perceived themselves as burden to their families or themselves was 28%. Only 14% knew about their disease prognosis. The majo­rity of respondents were little informed about CPR and mechanical ventilation [Table 2].

Of all the respondents, 77% felt that the physician should make the decision about CPR if their condition does not permit them to make such a decision themselves; only 23% wanted the decision to be taken by members of their family. However, when the question was posed differently by asking the patients whether they would agree or not that their physicians decide against cardiac resuscitation in case of cardiac arrest, only 26% of the participants agreed to it.

The percentages of patients who wished to undergo cardiac resuscitation were dependent on the expected outcome of the resuscitation: 79 % agreed to undergo resuscitation if they would recover completely from their acute ill­ness and become independent after recovery. This number dropped to 35% if they would sustain brain damage following the resusci­tation

When the patients were asked about their pre­ference for terminal care, if their condition de­teriorated to impending death, 73% wished to remain at home. This percentage increased to 87% if they would be supported by home health care services.

When the patients were asked about their pre­ference for setting off care, if they knew that that hospitalization and medical intervention would not improve their condition, 77% of the patients chose to stay at home, and 66% pre­ferred to consult their family members before making any decision. Only 20% wanted to be admitted to the hospital/ICU even though ad­mission is not likely to change or improve their condition. This same group still preferred resuscitation measures to be continued in case of deterioration of their medical conditions in the ICU, or if recovery was unlikely [Table 3].

We did not find any significant correlations between the patients' end of life decision pre­ferences and religiosity, quality of life, dialysis duration, family size, number of children, wor­king status, gender, age, or marital status.


   Discussion Top


In Western countries, advance directives are widely discussed with the patients who have chronic diseases. However, in the Saudi socie­ty this issue is rarely, if ever, discussed. There are many factors peculiar to our society to explain these differences in the approach to end of life care. It is clear that religion is not the reason for not discussing end of the life issues. Muslims believe in "Qadar or fate" as determined by God. This means that Muslims must accept sickness as God's will. However, at the same time, Islam teaches Muslims that they should seek remedies for their illnesses "for each disease there is a remedy". These be­liefs are very helpful for patients and give them at least psychological comfort in accep­ting their sickness. However, by the same token, Muslim patients and their relatives usually believe that it is within God's power to heal and cure even the most incurable disease. Furthermore, Islamic teachings permit the phy­sician to withhold treatment or the patient to refuse treatment, if the treatment is believed to be futile.

Our study examines advance care planning preferences (advanced directives) among Mus­lim dialysis patients and factors influencing their decisions.

The issues of advance care planning prefe­rences are rarely discussed with patients or their families. Physicians may lack the time or training, or may not be comfortable with end­of-life discussions. They think patients may not accept or be distressed of these issues. In addi­tion, the inadequate determination of the over­all prognosis of the patients may hinder end­ of-life discussions. [30],[31],[32],[33] Furthermore; physicians tend to use medical jargon, which may not be well understood by the patients. Without a clear communication, physicians may fail to predict the patients' end-of-life preferences and expectations. [34]

In our study, the majority of patients were willing to answer all the questions related to end-of-life health issues. Only 10 patients re­fused to complete these questions, which re­lieved our concerns, since we expected our patients to be uninterested or unwilling to dis­cuss these issues. This was compatible with previous studies that have shown that interest of dialysis patients to discuss end-of-life issues with their family members. [22],[27],[31]

In our study, we found that the majority of patients disagreed with physicians regarding the "do not resuscitate" decisions, though they trusted them to make decision related to end­of-life health issues. This may be due to lack of information and understanding about post­CPR prognosis. Our patients also believed that CPR is successful in 50-90%. After being in­formed that the CPR success rate is less than 25% and often leads to organ damage, still ap­proximately 50 % desired application of CPR, whereas 37% disagreed to its application under any circumstances. [23]

Similar to other studies, most of our patients had no or very limited knowledge about CPR and ventilatory support. [23],[24],[25],[26] This is possibly because the majority of our patients have a limited education. Studies have shown that when patients did not know about the poor prognosis post-CPR, the majority of respon­dents chose to undergo CPR. However, when patients become aware of the poor prognosis and low percentage of recovery post-CPR, the agreement for future application of CPR dec­reased to 46%. When respondents were in­formed that resuscitation could lead to depen­dency on a ventilator, brain injury, and coma, the number decreased further to 35%. This illustrates that when discussing advance direc­tives or CPR with patients, the physician should have a clear understanding of the patient's prognosis, possible intervention options, and outcome.

Our study disclosed that despite their inade­quate knowledge about CPR and low educa­tional level, our patients were able to make sensible decisions. These decisions appear to be based on the patients' best judgment and instincts rather than other factors such as religiosity, family size, quality of life, or pre­vious hospitalization experiences. Interestingly, the majority of our patients had been hos­pitalized at least one time in the two years preceding the survey and about half of them were admitted to an ICU during that period, and 37% visited someone close to them in an ICU. Thus, most of the respondents experienced one time at least a critical medical condition, or saw someone close to them go through this experience.

We conclude that contrary to the common be­lief that the patients do not desire to or could not participate in discussion pertaining to end­of-life issues; this study suggests that our pa­tients, despite limitation of their knowledge about CPR or intubation ventilation, are willing to engage in a discussion and decide sensibly about end-of-life care. Physicians should inform their patients about their disease and prognosis and discuss the benefits and the adverse effects of future medical interventions. Informed pa­tients are better able to participate in the dis­cussion and make reasonable choices about end-of-life issues.

 
   References Top

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Correspondence Address:
Hamdan H Al-Jahdali
Department of Medicine, King Saud Bin Abdulaziz University for Health Sciences, King Abdulaziz Medical City, P.O. Box 22490, Riyadh 11426
Saudi Arabia
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    Tables

  [Table 1], [Table 2], [Table 3]

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