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Saudi Journal of Kidney Diseases and Transplantation
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ORIGINAL ARTICLE Table of Contents   
Year : 2010  |  Volume : 21  |  Issue : 3  |  Page : 447-453
Factors associated with decision-making about end-of-life care by hemodialysis patients


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 Publication26-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 Nov 25];21:447-53. Available from: https://www.sjkdt.org/text.asp?2010/21/3/447/62723

   Introduction Top


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. [1] 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. [2],[3],[4]

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. [5],[6],[7],[8],[9]

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. [1],[10],[11] 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. [12],[13]

Studies have shown that ESRD patients who refuse dialysis treatment are unlikely to choose other life sustaining measures. [14],[15] 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. [16],[17] 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. [16]

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 Top


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 Top


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 Top


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 Top


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. [17]

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. [18]

More recent studies show that patients and relatives worry about pain and symptom mana­gement [19] and complain that communication with doctors about end-of-life issues is subopti­mal. [20],[21] 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. [22] 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. [23] 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. [24] Furthermore, Kwak et al [25] 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. [26] 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. [27]

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. [28] 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.

 
   References Top

1.Wunsch H, Harrison DA, Harvey S, Rowan K. End-of-life decisions: A cohort study of the withdrawal of all active treatment in intensive care units in the United Kingdom. Intens Care Med 2005;6:823-31.  Back to cited text no. 1      
2.Teno JM, Lynne J, Phillips RS, Murphy D, et al. Do formal advance directives affect resusci­tation decisions and the use of resources for seriously ill patients? SUPPORT Investi­gators. Study to understand prognoses and pre­ferences for outcomes and risks of treatments. J Clin Ethics 1994;5:23-30.  Back to cited text no. 2      
3.Azoulay E, Pochard F, Kentish-Barnes N, and the FAMIREA Study Group, Risk of post­traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med 2005;171:987-94.  Back to cited text no. 3      
4.Emmanuel EJ, Emmanuel LL. Proxy decision making for incompetent patients: An ethical and empirical analysis. JAMA 1992;267:2067-­71.  Back to cited text no. 4      
5.Kish Wallace S, Martin CG, Shaw AD, Price KJ. Influence of an advance directive on the initiation of life support technology in critically ill cancer patients. Crit Care Med 2001;29: 2294-8.  Back to cited text no. 5  [PUBMED]  [FULLTEXT]  
6.Goodman MD, Tarnoff M, Slotman GJ. Effect of advance directives on the management of elderly critically ill patients. Crit Care Med 1998;26:701-4.  Back to cited text no. 6      
7.Faber-Langendoen K. A multi-institutional study of care given to patients dying in hospitals. Ethical and practice implications. Arch Intern Med 1996;156:2130-6.  Back to cited text no. 7  [PUBMED]  [FULLTEXT]  
8.Karlawish JH, Hall JB. Managing death and dying in the intensive care unit. Am J Respir Crit Care Med 1997; 155:1-2.  Back to cited text no. 8  [PUBMED]    
9.Johnson RF, Baranowski-Birkmeier T, O'Donnell JB. Advance directives in the medical intensive care unit of a community teaching hospital. Chest 1995;107:752-6.  Back to cited text no. 9      
10.Predergast TJ, Claessens MT, Luce JM. A national survey of end-of-life care for critically ill patients. Am J Respir Crit Care Med 1998; 158:1163-7.  Back to cited text no. 10      
11.Bernat JL. Medical futility. Definition, deter­mination, and disputes in critical care. Neurocrit Care 2005;2:198-205.  Back to cited text no. 11  [PUBMED]  [FULLTEXT]  
12.Wu A. Long term outcomes in survivors from critical illness. Anaesthesia 2004;59:1049-52.  Back to cited text no. 12      
13.Maynard SE, Whittle J, Chelluri L, Arnold R. Quality of life and dialysis decisions in critically ill patients with acute renal failure. Intensive Care Med 2003;29:1589-93.  Back to cited text no. 13  [PUBMED]  [FULLTEXT]  
14.Singer PA. Advance care planning in dialysis. Am J Kidney Dis 1999;33:980-91.  Back to cited text no. 14      
15.Singer PA, Thiel EC, Naylor CD, et al Life­sustaining treatment preferences of hemo­dialysis patients: Implications for advance direc­tives. J Am Soc Nephrol 1995;6(5):1410-7.  Back to cited text no. 15      
16.Holley JL, Finucane TE, Moss AH. Dialysis patients' attitudes about cardiopulmonary resuscitation and stopping dialysis. Am J Nephrol 1989;9(3):245-51.  Back to cited text no. 16      
17.Liddle J, Gilleard C, Neil A. The view of elderly patients and their relatives on cardio­pulmonary resuscitation. J R Coll Physicians Lond 1994;28(3):228-9.  Back to cited text no. 17      
18.The SUPPORT investigators. A controlled study to improve care for seriously ill hospi­talized patients: The study to understand pro­gress and preferences for outcome and risks of treatment (SUPPORT). JAMA 1995;274:1591­-8.  Back to cited text no. 18      
19.Pantilat SZ. End of life care for the hospi­talized patient. Med Clin North Am 2002; 86:749-70.  Back to cited text no. 19  [PUBMED]    
20.Abraham JL. Update in palliative medicine and end of life care. Annu Rev Med 2003;54:53-72.  Back to cited text no. 20      
21.Azoulay E, Chevret S, Leleu G, et al. Half the families of intensive care unit patients experience inadequate communication with physic­cians. Crit Care Med 2000;28:3044-9.  Back to cited text no. 21  [PUBMED]  [FULLTEXT]  
22.Glasgow JL, McLennan SR, High KJ, Celi LA. Quality of dying in a New Zealand teaching hospital. Qual Saf Health Care 2008;17:244-8.  Back to cited text no. 22  [PUBMED]  [FULLTEXT]  
23.Gordon NP, Shade SB. Advance directives are more likely among seniors asked about end-of­life care preferences. Arch Intern Med 1999; 159:701-4.  Back to cited text no. 23  [PUBMED]  [FULLTEXT]  
24.Hopp FP, Duffy SA. Racial variations in end­of-life care. J Am Geriatr Soc 2000;48(6):658­-63.  Back to cited text no. 24      
25.Kwak J, Haley WE. Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist 2005;45(5):634-41.  Back to cited text no. 25      
26.Weeks JC, Cook EF, O'Day SJ, et al Relation­ship between cancer patients' predictions of prognosis and their treatment preferences. JAMA 1998;279(21):1709-14.  Back to cited text no. 26      
27.Bambauer KZ, Gillick MR. The Effect of underlying health status on patient or surrogate preferences for end-of-life care: A Pilot study. Am J Hosp Palliat Care 2007;24:185-90.  Back to cited text no. 27  [PUBMED]  [FULLTEXT]  
28.Balboni TA, Vanderwerker LC, Block SD, et al. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 2007;25:555-60.  Back to cited text no. 28  [PUBMED]  [FULLTEXT]  

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Correspondence Address:
Salim A Baharoon
Consultant Critical Care, King Abdulaziz Medical City, King Fahad National Guard Hospital, P.O. Box 22490, Riyadh-11426
Saudi Arabia
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