|Year : 2010 | Volume
| Issue : 3 | Page : 447-453
|Factors associated with decision-making about end-of-life care by hemodialysis patients
Salim A Baharoon1, Hamdan H Al-Jahdali2, Abdullah A Al-Sayyari3, Hani Tamim4, Yaser Babgi4, Saeed M Al-Ghamdi5
1 Intensive Care Department, King Saud Bin Abdulaziz University For Health Sciences, Riyadh, Saudi Arabia
2 Pulmonary Division, King Saud Bin Abdulaziz University For Health Sciences, Riyadh, Saudi Arabia
3 Nephrology Division, King Saud Bin Abdulaziz University For Health Sciences, Riyadh, Saudi Arabia
4 College of Medicine, King Saud Bin Abdulaziz University For Health Sciences, Riyadh, Saudi Arabia
5 Nephrology Division, King Faisal and Research Center Hospital, Jeddah, Saudi Arabia
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|Date of Web Publication||26-Apr-2010|
| Abstract|| |
The current cross sectional study is based on a questionnaire database on patients with end-stage renal disease (ESRD) to determine their preferences about end-of-life care and differences of certainty regarding the application of cardiopulmonary resuscitation and life sustaining measures in case of cardiac arrest. The study was performed on 100 patients on hemodialysis for at least 2 years and not on the transplant list in two tertiary hospitals in Saudi Arabia; King Fahad National Guard in Riyadh and King Faisal Specialist Hospital in Jeddah in March 2007. More than two thirds of the surveyed patients were willing to make decisive decisions. Having more than 5 children was the only factor significantly associated with the ability to make decisive decisions; there was an insignificant association with factors such as marital status or nonSaudi nationality. Factors such as self-perception or disease curability, previous admissions to hospital or intensive care units, prior knowledge of mechanical ventilation, or cardiopulmonary resuscitation did not have any influence on making certain decisions on end-of-life care. There was a significant lack of knowledge in our study patients of cardiopulmonary resuscitation, mechanical ventilation, and disease outcome.
|How to cite this article:|
Baharoon SA, Al-Jahdali HH, Al-Sayyari AA, Tamim H, Babgi Y, Al-Ghamdi SM. Factors associated with decision-making about end-of-life care by hemodialysis patients. Saudi J Kidney Dis Transpl 2010;21:447-53
|How to cite this URL:|
Baharoon SA, Al-Jahdali HH, Al-Sayyari AA, Tamim H, Babgi Y, Al-Ghamdi SM. Factors associated with decision-making about end-of-life care by hemodialysis patients. Saudi J Kidney Dis Transpl [serial online] 2010 [cited 2020 Sep 18];21:447-53. Available from: http://www.sjkdt.org/text.asp?2010/21/3/447/62723
| Introduction|| |
The ability and competence for decision making are frequently limited by the nature of the critical illness, or by the effects of treatment. Major decisions including limiting or even withdrawing life-support in the intensive care unit (ICU) are often made without the direct involvement of the patient, whose preferences regarding end-of-life treatment are usually unknown.  Asking relatives to participate in the decision making regarding appropriateness of treatment intervention during the terminal stages of illness usually subjects them to tremendous emotional stress and they may not consistently make decisions that accurately reflect their relative's wishes. ,,
Making advanced directives are rarely practiced. In North America, only 32% of patients with relapsed hematological malignancy have made advanced directives, while the number of advanced directives in patients with unanticipated critical illness is even more limited, with only 5-11% of patients having an advanced directive. ,,,,
The decision to limit or even withdraw therapy in the ICU is influenced by many factors, including the chances of curability, overall patient performance status, quality of life, local practice variations of the attending intensivists, and the socioeconomic support. ,, From the patients prospective, other factors may also include patients' beliefs, perception of illness curability, age, ethnicity, family support, number of children, level of education, and knowledge about cardiopulmonary resuscitation and its outcome. ,
Studies have shown that ESRD patients who refuse dialysis treatment are unlikely to choose other life sustaining measures. , However, among patients who continue receiving dialysis, about one third refuse other life sustaining treatments, and are more likely to refuse cardiac resuscitation than to discontinue dialysis. , Furthermore, approximately 50% of patients undergoing chronic dialysis voted against cardiopulmonary resuscitation (CPR) if this would result in to coma, persistent vegetative state, severe dementia or terminal illness. 
There is a paucity of studies about prevalence and factors influencing decision-making about end-of-life care in dialysis patients in the Muslims world.
Our study aims at determining the preferences of the ESRD patients on dialysis about end-of-life care and differences of certainty regarding the application of cardiopulmonary resuscitation and life sustaining measures in case of cardiac arrest
| Patients and Methods|| |
The study was performed on 100 adult patients (There were 54 (54%) males) on hemodialysis for at least 2 years and not on the transplant list in two tertiary hospitals in Saudi Arabia; King Fahad National Guard in Riyadh and King Faisal Specialist Hospital in Jeddah in March 2007. The Research and Ethics Committee at KAMC-KFNGH-Riyadh approved this study.
We used an Arabic language questionnaire comprising 4 sections. The first 3 sections were concerned with the collection of demographic data including: age, gender, education levels, employment, family size, number of children, functionality status, level of knowledge about CPR and mechanical ventilation, and prior ICU admissions. The third section contained different scenarios followed by questions on personal wishes and preferences related to these scenarios that address: end-of-life decisions, medical interventions, CPR, ICU admission, and who should be the decision maker in these events. An example of such scenarios and questions includes one like "Would you like your doctor to perform cardiac resuscitation if it can revive your heart, but: Only if you would remain independent for your basic needs after recovery, Even if this will not change your overall condition and your prognosis, Even if this may leave you permanently hooked to the machine, Even if this may lead to permanent brain injury and coma. Another example is "If your medical condition deteriorates rapidly (impending death) what would your wishes be: Remain at home with family, Remain at home with family and take prescribed treatment, Remain at home with family ,take prescribed Rx and follow up by home care, Be transferred to the hospital.
The questionnaire was initially tested on 20 patients to evaluate the clarity and understanding of the questions and to correct any ambiguities.
Certainty of responses was defined as an answer to all of sections 3 questions with a either agree or disagree, while uncertainty of responses was defined as an answer to any of the section 3 questions with "I do not know".
We investigated if "certainty" or 'uncertainty" could be attributed to any of these factors: gender, age, nationality, QOL, previous admissions to ICU or hospitalization, degree of religiosity, previous knowledge of cardiac resuscitation or ventilation, education, employment, perception of being a burden to the family, marital status, number of children and expectation of cure.
| Statistical Analysis|| |
Data management and analyses were carried out using the SPSS, version 16. Descriptive analyses were carried out by calculating the number and percent for categorical data, and the mean and standard deviation for continuous data. Comparing the two groups in terms of the different characteristics was done by using the Chi-Square or Students' "t" test, as appropriate. A P value of less than 0.05 was considered statistically significant.
| Results|| |
Of the study patients, 67 (67%) were certain in answering to the cardiac resuscitation questions, while 33 (33%) were not.
[Table 1] shows the responses to the questionnaire of the study. Gender was not a significant variable among the "certainty" and the "uncertainty" group (P= 0.7). The mean age of the "certainty" was slightly younger than "uncertainty" (53.27 vs 46.79, P= 0.05). Both groups were similar in viewing their quality of life measured by quality of life visual score (mean of 63.73 and 63.33, respectively (P= 0.44). There were 67 (67%) Saudis and 33 (33%) non-Saudis who were comparable in their responses "certain" and "uncertain"; 61.2% vs 78.8 % among Saudis compared to 38.1%vs 21.2% among non-Saudis, respectively, (P=0.08).
Similarly, being single was associated with non-significant trend toward un "certainty" (89.6% vs 75.8%. among married compared to 10.4 vs 24.2% among singles, P= 0.07).
Having more than 5 children was significantly associated with uncertainty" among our sampled group (76.9% of patients with more than 5 children gave "certain" responses as compared to only 57.4% in patients with less than 4 children (P= 0.04). Most of the persons surveyed (90) were not working at the time of the survey. Among those certain on their decisions, only 7.5% were working at the time of survey, while the majorities are not working 92.5 %. Employment did significantly impacted on decision making (P= 0.2).
Among non-educated participant, 38.8% were certain while 34.4% were not. With education up to elementary school still more participants were among the certainty group 31.3% vs 15.6%. Interestingly, the reverse is seen with higher education with more participants becoming less certain on decisions (29.8% vs 48.5%).
We used a visual scale of 0-10 with 0 was equal to considering oneself as least religious and 10 as most religious. Of the study patients, 58% (58) scored themselves as 8 and above. Among this group 59.7% (40) were decisive, while 54.5% (18) were not, while among the "least religious group" 40.3% (27) were decisive and 45.5% (15) were not.
Past admission to hospitals did not significantly impact on ability to make certain decision (P= 0.1). Respondents trended to become less certain in their responses with increasing number of hospital admissions (18.2 % of those with no admission, 36.4% in those with 1-3 previous admissions and 45.5% in those with more than 3 admissions). Neither a previous admission to ICU nor visiting a friend or a relative in ICU influenced ability to make decisions.
Whether perceiving themselves as a burden to their family or not, this had no influence on decisiveness of the patients to make end-of-life decisions (P= 0.1).
Interestingly, although most patients were on HD for many years, 72% expected that their kidney disease would recover, whereas only 14% admitted knowing the incurability of their condition and 14% claimed that did not know the chances of recovery. Among those thinking that their disease was curable,74.6% were certain and 66.7% were not compared to 13.4% and 15.2% among those who think their disease was not curable ( P= 0.7).
The level of knowledge about cardiac resuscitation and mechanical ventilation was poor with 82% and 74% not knowing anything at all about these two procedures, respectively, with the rest having very inadequate knowledge
| Discussion|| |
The results of our study show that HD patients were willing to make their own decisions with certainty regarding their preferences and wishes about end-of-life care issues (more than two thirds of the studied population). Without a clear, direct and unambiguous communication, physicians may fail to predict the patient's preferences and expectations, or their willing-ness to discuss end-of-life care. 
The Study to Understand Progress and Preferences for Outcome and Risks of Treatment (SUPPORT), which was done in 1995 indicated that end-of-life care standard in hospitalized patients leaves a lot to be desired with 50% of patients experiencing moderate to severe pain during the last 3 days of life, less than 50% of doctors discuss cardiopulmonary resuscitation with their patients, and almost half of the do not resuscitate (DNR) orders were written within 2 days of death. 
More recent studies show that patients and relatives worry about pain and symptom management  and complain that communication with doctors about end-of-life issues is suboptimal. , Nevertheless, a report from New Zealand paints a better picture showing that endof-life issues were discussed with 82% of the patients and three-quarters of those who died had a DNR order in their files, and 96% of the patients were pain free.  Our study suggests that, contrary to popular belief, out patients with chronic illness are ready and capable in answering questions about their own end-of-life decisions.
It was found in a study in USA that advanced directives were made in a third of people over age of 65 years although only 15% of them talked to their doctors on end-of-life issues, although among those who did talk to their doctors, the chances of writing an advanced directive were significantly higher. The making of advanced directives was found to be positively associated with age, but not with gender, marital status, or self-rated health status.  In our study, older patients were more certain about their decisions than the younger ones. However, we found no impact of gender, marital status, or self-assessment of quality of life on making these decisions.
In a study comparing end of life decisions between White and Black Americans, it was shown that Black Americans are more likely to wish all treatment to be given to prolong life.  Furthermore, Kwak et al  found that Asians and Hispanics are more likely to leave the decisions about end-of-life care to their family members. In this connection, the Arabs/ Moslems tend to be similar to the American Asians and Hispanics and thus are more likely to give up their autonomy regarding end of life issues and submit to the family's paternalistic decisions. We found a difference in the responses by the Saudis and non-Saudis, but we doubt if this is a racial/cultural difference, as the nonSaudis are also Arabs and Moslems. However a factor that might be relevant here is that nonSaudis might be economically less well off and thus do not want to be a burden to their families.
Patients who perceive a good prognosis of their illness tended to prefer active resuscitation as opposed to those who do not.  In our study, however, we found no difference between those who believed their illness to be curable and those who did not; it might be related to the fact that as Moslems, our patients believe there is always hope in a miraculous cure form God.
An interesting study by Bambauer and Gillick, using the Palliative Performance Scale to measure health status reported that lower scores were associated with preferences for comfort and higher scores with preference for maintaining function and life expectancy. 
We used the visual scoring for quality of life and found no difference based on QOL score. This is somewhat surprising but might be related to the low prevalence of patients who considered themselves a burden to their families (24.5%).
Religiousness has been found to be significantly associated with wanting all measures to extend life.  We found no impact of religiousness in our study, but it is important to be clarify the concept of religiousness among Moslems as compared to non-Moslems. Moslems consider religiousness to mean the strict performance of religious duties and rituals such as praying five times a day. Anyone not doing so may be considered not very religious by many Moslems. On the other hand, in the West religiousness might be considered to equate spirituality and belief only. If this is the case then most of our patients who scored low in religiosity should consider themselves religious.
We conclude that our study found that HD patients were willing to make their own decisions with certainty regarding their preferences and wishes about end-of-life care issues. More and larger studies are required to explore more factors related to the end-of-life care.
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Salim A Baharoon
Consultant Critical Care, King Abdulaziz Medical City, King Fahad National Guard Hospital, P.O. Box 22490, Riyadh-11426
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