NUR 390: Bioethical Issue Paper Grading Criteria
f a nonverbal 98 year old cancer patient on a feeding tube is a full code because he is his daughter's only family, I think the ethics committee should be involved. If he codes, I do not think it is fair to torture his body with CPR if treatments are futile.
NUR 390: Bioethical Issue Paper Grading Criteria
Objectives/Criteria for Bioethical Issue Paper:
1. Describe a specific ethical issue you have witnessed or are passionate about in your profession.
2. Select a position (support/oppose) of the ethical issue you have chosen to defend. NUR 390: Bioethical Issue Paper Grading Criteria
3. Defend your position with reasoned arguments using ethical theories and principles, facts, research, and/or case examples (NOT OPINION).
4. Examine critically potential objections to your position based on opposing commentary in the literature.
5. Based on preceding two positions, state the implications for nursing practice and health care policy.
6. Must include three (3) evidence-based articles supporting position.Use APA format, correct grammar and spelling, and demonstrate logical, concise organization of content. NUR 390: Bioethical Issue Paper Grading Criteria
Points
5
5
30
20
20
20
ORIGINAL ARTICLE
Timing of code status documentation and end-of-life outcomes in patients admitted to an oncology ward
Amanda Caissie & Nanor Kevork & Breffni Hannon & Lisa W. Le & Camilla Zimmermann
Received: 4 June 2013 /Accepted: 11 September 2013 /Published online: 28 September 2013 # Springer-Verlag Berlin Heidelberg 2013
Abstract Purpose Guidelines recommend documentation of care pref- erences for patients with advanced cancer upon hospital ad- mission. We assessed end-of-life outcomes for patients who did or did not have code status (CS) documented within 48 h of admission. Methods This was a retrospective cohort study of patients who died on an inpatient oncology ward between January 2004 and February 2009. Primary end-of-life outcomes were “code blues” and cardiopulmonary resuscitation (CPR) at- tempts; secondary outcomes included unsuccessful CPR at- tempts, intensive care unit (ICU), consultations, and ICU admissions. Using logistic regression, outcomes were com- pared between those with and without CS documentation ≤48 h from admission (full code or do-not-resuscitate), con- trolling for significant confounders. NUR 390: Bioethical Issue Paper Grading Criteria
Results The 336 patients had a median age of 61 years; 97 % had advanced cancer. The median time from admission to death was 12 days (range <1–197 days); 151 patients (45 %) had CS documentation ≤48 h from admission. Controlling for confounders of reason for admission and marital status, pa- tients with CS documentation ≤48 h from admission had fewer “code blues” (2 vs. 15 %; adjusted odds ratio (AOR) 0.12, 95 % confidence interval (CI) 0.02–0.43), CPR attempts (1 vs. 11 %; AOR 0.12, 95 % CI 0.01–0.51), unsuccessful CPR attempts (0 vs. 11 %), ICU consultations (9 vs. 30 %; AOR 0.19, 95 % CI 0.08–0.40) and ICU admissions (2 vs. 5 %; AOR 0.18, 95 %CI 0.02–0.85). Conclusions In patients who died on an oncology ward, CS documentation within 48 h of admission was associated with less aggressive end-of-life care, regardless of the reason for admission. NUR 390: Bioethical Issue Paper Grading Criteria
Keywords Cancer . Code status . Intensive care unit .
Cardiopulmonary resuscitation . Advance directives
Introduction
When first introduced around 1960, cardiopulmonary resus- citation (CPR) was used mainly intra-operatively [1]. In the 1970s, The American Medical Association recommended documentation of code status in the hospital chart, and hospi- tal policies made CPR the default unless do-not-resuscitate (DNR) orders were written [2]. Decades later, this policy remains in place, yet there are low rates of code status docu- mentation in hospitalized patients [3–5] Such documentation is important, given the low rates of CPR success in hospital inpatients. Although approximately 4 out of 10 patients have a return of spontaneous circulation, only 10–20 % survives to hospital discharge [6, 7]. NUR 390: Bioethical Issue Paper Grading Criteria
A. Caissie Department of Radiation Oncology, Dalhousie University, Halifax, NS, Canada
B. Hannon :C. Zimmermann Division of Medical Oncology and Hematology, Department of Medicine, University of Toronto, Toronto, Canada
N. Kevork : B. Hannon :C. Zimmermann (*) Department of Psychosocial Oncology and Palliative Care, Princess Margaret Hospital, Toronto, University Health Network, 610 University Ave., 16-712, M5G 2M9 Toronto, ON, Canada e-mail: camilla.zimmermann@uhn.on.ca
C. Zimmermann Campbell Family Cancer Research Institute, Ontario Cancer Institute, Princess Margaret Hospital, Toronto, University Health Network, Toronto, Canada
L. W. Le Department of Biostatistics, Princess Margaret Hospital, Toronto, University Health Network, Toronto, Canada
Support Care Cancer (2014) 22:375–381 DOI 10.1007/s00520-013-1983-4. NUR 390: Bioethical Issue Paper Grading Criteria
The success rate of CPR is even lower in patients with cancer, and is further reduced by metastatic disease, poor performance status, advanced age, and acute illnesses includ- ing infection [6, 8, 9]. A meta-analysis of 42 studies from 1966 to 2005, specifically in hospitalized patients with cancer, reported an overall survival rate to discharge of 6.2 % (9.5 % in patients with localized disease and 5.6 % in patients with metastatic disease) [9]. For patients whose cardiac arrest was anticipated, rather than occurring unexpectedly, the survival rate to discharge after CPR was 0 % [8]. NUR 390: Bioethical Issue Paper Grading Criteria
Due to these exceedingly low rates of success for CPR in hospitalized patients with cancer, guidelines recommend that for patients with advanced cancer, goals of care should be reviewed and documented within 48 h of any admission to a hospital [10]. While the latter publication does not explicitly define advanced cancer, it has been defined elsewhere as cancer that is incurable [11]. NUR 390: Bioethical Issue Paper Grading Criteria. These recommendations for goals of care discussions are in line with the Patient Self Determination Act, which requires that all institutions in the USA that are receiving Medicare/Medicaid funds inform pa- tients, upon admission, of their right to accept or refuse treatment and their right to an advance directive, regardless of whether or not their cancer is in the advanced stages [12]. NUR 390: Bioethical Issue Paper Grading Criteria. However, the guideline of documenting goals of care within 48 h is founded only from level III evidence (textbooks, opinions, and descriptive studies) [10]. Scant evidence exists regarding both the frequency with which code status is actu- ally documented within 48 h of admission, and whether this serves to reduce aggressive end-of-life care [13]. NUR 390: Bioethical Issue Paper Grading Criteria
Early code status documentation may decrease the number of patients subjected to aggressive interventions not appropri- ately aligned with goals of care. The aims of the current study were (1) to assess the timing of code status documentation in all patients who died after admission to an oncology ward and (2) to examine whether code status documentation within 48 h was associated with less aggressive end-of-life care. We hypothe- sized that code status documentation within 48 h would be associated with fewer “code blues” and CPR attempts. Second- ary outcomes included unsuccessful CPR attempts and inten- sive care unit (ICU) consultations and admissions before death. NUR 390: Bioethical Issue Paper Grading Criteria
Materials and methods
Study site and sample
The study took place at Princess Margaret Hospital (PMH), a comprehensive cancer center and member of the University Health Network (UHN) in Toronto, Canada. In addition to PMH, the UHN also includes two general hospitals: Toronto General Hospital and Toronto Western Hospital. The study sample included consecutive inpatients that died between Janu- ary 2004 and February 2009, inclusive, on the two general oncology (medical or radiation oncology) wards at PMH, which have a total of 40 beds. Patients admitted to these wards all have solid tumors, with the exception of a small minority of patients with lymphoma or multiple myeloma who are admitted for palliative radiation. NUR 390: Bioethical Issue Paper Grading Criteria. PMH also has 69 beds allocated for patients with hematologic malignancies and a 12-bed palliative care unit (PCU); patients who died on these units were not included in the study. PMH has no emergency department; however, patients have access to the emergency departments of the other UHN hospitals. Patients may be admitted either directly from ambula- tory care; transferred from general medical or surgical wards at another hospital; or transferred after presenting at the emergency department at another hospital.While PMH has no ICU, patients have access to ICU care at the adjacentMount Sinai Hospital via a bridge connecting the two hospitals. NUR 390: Bioethical Issue Paper Grading Criteria
This research was conducted following approval of the UHN Research Ethics Board. Two investigators (AC and NK) conducted a thorough retrospective chart review, using a standardized abstraction spreadsheet. Data abstracted included information on patient demographics, cancer diagnosis and stage, admission date, reason for admission, admitting service, status of the physician admitting the patient (patients may be admitted onto the service of a staff physician by this physician personally or by a hospitalist, fellow, or resident), code status documentation, ICU consultations and admissions, CPR at- tempts (and outcome thereof), and date and cause of death. NUR 390: Bioethical Issue Paper Grading Criteria
Data collection was facilitated by the availability of data- bases and standardized forms. The reason for admission is specified by the admitting physician at the time that the patient is placed on the waiting list for admission, and is then entered into the standardized database by the admissions coordinator (a registered nurse) using a drop-down menu of different potential reasons for admission. NUR 390: Bioethical Issue Paper Grading Criteria. When there are multiple reasons for admission, the primary reason is recorded. For this study, the 28 reasons for admission listed in the database were grouped into three categories: symptom control, cancer treat- ment or investigation, and palliative planning (Table 1). The last category was taken unaltered from the database, and refers to patients whose condition is deteriorating at home, and who are admitted with the anticipation of transfer to hospice or PCU or discharge home with further support. NUR 390: Bioethical Issue Paper Grading Criteria
Code status documentation and ICU consultations and admissions were abstracted from the physician’s orders and from the chart notes. Code status documentation was taken from the inpatient medical orders, because according to UHN policy, this is where DNR documentation must be, to be followed for inpatients. Code status was classified as “full code” or “DNR”. A DNR order precludes the interventions of chest compressions, defibrillation, or intubation in the event of a cardiopulmonary arrest, but does not preclude an ICU consultation or admission. Details of code blues and CPR attempts and outcomes were abstracted from standardized forms completed by the code blue team. The date and cause. NUR 390: Bioethical Issue Paper Grading Criteria
376 Support Care Cancer (2014) 22:375–381
of death was obtained from the death certificate, a copy of which was included in each chart.
A “code blue” was defined as any medical emergency where there was documented involvement of the code blue team (cardiopulmonary arrest or near-cardiopulmonary ar- rest). CPR attempts were defined as instances where there were documented attempts at resuscitation, including chest compressions, defibrillation, and/or intubation. CPR was de- fined as “successful” if the patient was revived and survived for one or more days and “unsuccessful” if the patient was not revived or survived for less than 1 day. All ICU admissions at PMH are preceded by an ICU consultation, but an ICU consultation does not necessarily result in an admission to the ICU. NUR 390: Bioethical Issue Paper Grading Criteria. All code blues result in an ICU consultation; in addition, the ICU staff may provide consultations on the PMH oncology wards for medical emergencies that have not yet progressed to the severity of a code blue. ICU consulta- tions may also be requested pre-emptively, to provide input regarding whether or not CPR and ICU admission would be appropriate for a particular patient. These pre-emptive consul- tations are rare and supplement rather than replace the more usual situation of a code status discussion with the primary oncologist, admitting oncology team, or palliative care team. NUR 390: Bioethical Issue Paper Grading Criteria
A UHN policy is in place to guide the medical team through decision making with respect to life support interventions and code status discussions. During the study period, there was no institutional policy or guideline regarding the actual timing of such code status discussions, nor is there one currently. NUR 390: Bioethical Issue Paper Grading Criteria
Statistical analysis
Associations between timing of initial code status documen- tation (≤48 h from admission, vs. longer or not at all) and patient characteristics were assessed using chi-square, Fisher’s exact, and t tests, as appropriate. Associations between timing of code status documentation and end-of-life outcomes (code blue, CPR attempt, unsuccessful CPR attempt, ICU consulta- tion, ICU admission) were then assessed using multivariable logistic regression analyses, adjusting for significant con- founders. NUR 390: Bioethical Issue Paper Grading Criteria. Confounders were defined as patient characteristics associated with both timing of code status documentation and any end-of-life outcome (p <0.05). Marital status and reason for admission met criteria as confounders and were included in the multivariable analysis. Among the reasons for admis- sion, inclusion of “palliative planning” caused separation of the data, because a large majority of patients admitted for palliative planning also had code status assessed within 48 h of admission. Therefore, patients admitted for palliative plan- ning were excluded from the multivariable analysis. NUR 390: Bioethical Issue Paper Grading Criteria
Results
Table 2 shows the timing of relevant end-of-life events for the 336 patients who died on the oncology wards during the study period. Of 336 patients, only 151 (45 %) had code status documentation ≤48 h from admission (141 as DNR and 10 as full code) and 28 (8 %) had no documentation of their code status before death. Of note, 16 patients had a change in their code status: for 12 patients (whom had code status documen- tation within 48 h), an initial “full code” status was subse- quently changed to DNR; for 4 patients, (whom had code status documentation within 48 h) an initial DNR status was changed to full code, and then back to DNR prior to death. NUR 390: Bioethical Issue Paper Grading Criteria. Twenty-eight patients died within 48 h of admission; 23/28 had code status documented, and 5/28 did not. Of the 23 who did have code status documented, one (documented as full
Table 2 End-of-life milestones
End-of-life events All patientsa
Code status documented before death 308 (92) NUR 390: Bioethical Issue Paper Grading Criteria
Code status documentation within 48 h of admission 151 (45)
Code status documentation within 48 h of death 88 (26)
Time from admission to death; median (range), in days 12 (1–197)
Time from admission to initial documentation of code statusb; median (range), in days
3 (1–178)
Time from initial code status documentation to deathb; median (range), in days
6 (1–97)
Time from initial code status to final code statusc; median (range), in days
3 (1–39)
Time from final code status to deathc; median (range), in days
6 (1–34) NUR 390: Bioethical Issue Paper Grading Criteria
a Unless specified, units for all characteristics are number (%), and n =336 b n=308 patients who had their code status documented c n=16 patients who had a change in code status
Table 1 Categories of reasons for admission listed in oncology database
Category Reasons for admission listed in oncology database
Symptom control Pain control, dehydration, neurological changes, biochemical abnormality, hematological abnormality, bleeding, bowel obstruction, nausea/vomiting, distal vein thrombosis/ pulmonary embolus, superior vena cava obstruction, seizures, hypercalcemia, fever not yet diagnosed, off-treatment deterioration, febrile neutropenia, infection, pleural effusion, respiratory problems, other medical problem
Cancer treatment or investigation
Radiation therapy, radiation chemotherapy, chemotherapy, investigation, cord compression, staging, gastrostomy tube, on- treatment deterioration
Palliative planning Palliative planning
Support Care Cancer (2014) 22:375–381 377 NUR 390: Bioethical Issue Paper Grading Criteria
code) was transferred to the ICU after a code blue and success- ful CPR. Of the five who did not have code status documented, all had unsuccessful CPR after a code blue. All of these patients had advanced illness and deteriorating status on admission.
The demographics of all 336 patients are presented in Table 3, both for the entire study population and according to timing of code status documentation. Of all patients, (295/336) had stage IV disease on admission; of those with non-stage IV disease, all but 10 (3 % of the whole sample) had advanced, incurable disease at admission (for example advanced glioblastoma). Ninety-six percent died of their cancer, with the remaining 13 patients dying either from complications of the disease or from severe medical comorbidities. NUR 390: Bioethical Issue Paper Grading Criteria. Code status documentation ≤48 h after admission was associated with being married and admis- sion for palliative planning and negatively associated with ad- mission for cancer treatment or investigation. Specifically, 29/34 (85 %) of patients admitted for palliative planning, 87/195 (45 %) admitted for symptom control, and 35/107 (33 %) of patients admitted for cancer treatment or investigation, had code status documentation within 48 h.NUR 390: Bioethical Issue Paper Grading Criteria
After excluding the 34 patients who were admitted for palliative planning, and adjusting for other reason for admis- sion and marital status, patients with code status documenta- tion ≤48 h from admission had significantly fewer code blues, CPR attempts, and ICU consultations and admis- sions (Table 4). All 20 CPR attempts in the group that did not have code status documented within 48 h after admission were unsuccessful (for 18 attempts the patient was not revived; for 2, the patient survived less than 24 h), whereas the 2 in the ≤48 group (both “full code” documentations) were successful in reviving the patient. In both of these cases with successful CPR attempts, the patient’s code status was changed to DNR upon transfer back to the oncology ward (3 to 11 days post- CPR), and cancer-related death occurred within 3 weeks of initial resuscitation. NUR 390: Bioethical Issue Paper Grading Criteria
We repeated the analyses discounting the patients who died within 48 h of admission, and the results remained significant for all outcomes (p <0.05).
Discussion
Current recommendations for patients with advanced cancer are to discuss and document goals and preferences for care within 48 h of admission to hospital [10]. This 48-h window allows for appropriate code status documentation, while leav- ing time for the oncology team to gather information that may aid in the discussion, including the input of the primary treating oncologist. The results of our study support documen- tation of code status within this time frame. NUR 390: Bioethical Issue Paper Grading Criteriat
The large majority of patients who died on the inpatient oncology service during the 5-year study period had incurable cancer. Although code status was documented in more than
90 % before they died, documentation was completed within 48 h of admission in only 45 % of the overall sample, and did not take place consistently even in patients admitted for pal- liative planning. In those patients who had code status docu- mented within 48 h, there was less aggressive end-of-life care for all measured outcomes, even after adjusting for confound- ing variables of reason for admission and marital status. NUR 390: Bioethical Issue Paper Grading Criteria
Other studies have demonstrated the effect of end-of-life discussions on less aggressive medical care near death, dem- onstrating lower rates of ventilation, resuscitation, and ICU admissions [14, 15]. In a recent study of patients with ad- vanced lung or colorectal cancer, those who had end-of-life discussions before the last 30 days of life were less likely to receive aggressive measures at the end-of-life, including che- motherapy and acute hospital-based care [16]. NUR 390: Bioethical Issue Paper Grading Criteria. As well, in a retrospective study of 118 terminally ill oncology inpatients, earlier recognition that the patient was dying was associated with timelier establishment of goals of care, including earlier DNR code status documentation and discontinuation of anti- cancer therapy [13]. Our study adds to this body of literature encouraging appropriate discussion of end-of-life planning, by specifically supporting the documentation of code status in patients with advanced cancer within 48 h of hospital admission. NUR 390: Bioethical Issue Paper Grading Criteria
It is increasingly accepted that aggressive end-of-life care for patients with advanced cancer is not only cost-ineffective but also represents poor quality care [17–20]. CPR is a highly costly intervention [21], and the very small chance that pa- tients with advanced cancer have of surviving to discharge after a cardiopulmonary arrest [9] approaches zero when the arrest is anticipated [8]. NUR 390: Bioethical Issue Paper Grading Criteria. In the current study, 11 % of those who had their code status documented greater than 48 h after admission died after an unsuccessful CPR attempt, compared to none in the ≤48 h group. This is an unpleasant way to die and can have adverse effects for all involved. Aggressive care in the final week of life has been associated with poor patient quality of life, as well as with a higher risk ofmajor depression in bereaved caregivers [15]. Unsuccessful CPR attempts are also highly disturbing for those performing it; generally, phy- sicians in training [22]. NUR 390: Bioethical Issue Paper Grading Criteria
Code status discussions are complex and challenging, and physicians may feel reluctant to discuss such a sensi- tive topic [23]. Patients generally have a poor understand- ing of CPR and its low success rate in patients with advanced illnesses [24] and this is important to convey in a clear and sensitive manner [25]. Evidence suggests that patients are receptive to discussions about code status and other advance directives on admission to hospital [26, 27], and that code status discussions at admission do not affect patient or surrogate satisfaction with care [28]. Indeed, having a DNR order at the time of death has been associ- ated with higher quality of end-of-life care ratings by family members [29]. Ideally, these discussions take place
378 Support Care Cancer (2014) 22:375–381 NUR 390: Bioethical Issue Paper Grading Criteria
Table 3 Patient characteristics according to timing of code status
Characteristic All patients (n =336) Code status documented within 48 h of admission Univariable
Numbers (%) Yes (n =151) No (n =185) OR (95 % CI) p Value
Age (years)
median (range) 61 (23–94) 63 (23–87) 61 (27–94) 1.00 (0.98-1.01) 0.71
Sex
Female 186 (55) 81 (54) 105 (57) 0.88 (0.57–1.36) 0.57
Male 150 (45) 70 (46) 80 (43) –
Marital status
Married/common law 229 (69) 112 (76) 117 (64) 1.76 (1.08–2.84) 0.02
Not marrieda 102 (31) 36 (24) 66 (36) –
Unknown 5 3 2 –
Interpreter needed
Yes 37 (11) 20 (87) 17 (9) 1.51 (0.76–3.00) 0.24
No 299 (89) 131 (13) 168 (91) –
Religious affiliation
Yes 136 (41) 65 (43) 71 (38) 1.21 (0.78–1.88) 0.39
No 200 (59) 86 (57) 114 (62) –
Primary cancer site 0.16
Gastrointestinal 74 (22) 32 (21) 42 (23) 1.27 (0.62–2.58)
Lung 64 (19) 37 (25) 27 (15) 2.28 (1.10–4.76) NUR 390: Bioethical Issue Paper Grading Criteria
Gynecological 55 (16) 22 (15) 33 (18) 14.11 (0.52–2.39)
Breast 30 (9) 13 (9) 17 (9) 1.28 (0.52–3.14)
Genitourinary 30 (9) 17 (11) 13 (7) 2.18 (0.88–5.37)
Head and neck 27 (8) 9 (6) 18 (10) 0.83 (0.32–2.19)
Other 56 (17) 21 (14) 35 (19) –
Stage at admission
Stage IV 295 (88) 134 (89) 161 (87) 1.18 (0.61–2.28) 0.63
Other 41 (12) 17 (11) 24 (13) –
Cause of death
Cancer 323 (96) 147 (97) 176 (95) 1.88 (0.57–6.23) 0.30
Other 13 (4) 4(3) 9 (5) –
Admitting service
Medical oncology 249 (74) 119 (79) 130 (70) 1.57 (0.95–2.60) 0.08
Radiation oncology 87 (26) 32 (21) 55 (30) –
Admitting physician
Staff/hospitalist 155 (46) 68 (45) 87 (47) 0.92 (0.60–1.42) 0.72
Otherb 181 (54) 83 (55) 98 (53) –
Reason for admission <0.0001
Palliative planning 34 (10) 29 (19) 5 (3) 7.20 (2.67–19.37)
Cancer treatment or investigation 107 (32) 35 (23) 72 (39) 0.60 (0.37–0.99)
Symptom Control 195 (58) 87 (58) 108 (58) –
Time from diagnosis to admission 0.27
>1 year 103 (31) 53 (35) 50 (27) 1.54 (0.88–2.69)
>1 month to ≤1 year 135 (40) 58 (38) 77 (42) 1.09 (0.64–1.85) ≤1 month 98 (29) 40 (26) 58 (31) –
a Not married includes single, separated, divorced or widowed bOther includes fellows, residents and unknown
Support Care Cancer (2014) 22:375–381 379 NUR 390: Bioethical Issue Paper Grading Criteria
with the primary oncologist prior to admission as a part of advance care planning, in which case, the status just needs to be reverified and documented on admission to a hospital. NUR 390: Bioethical Issue Paper Grading Criteria
Patients and family members may be reassured by knowing that a DNR status does not preclude other active treatments directed either at the cancer itself or at complications such as infections [30]. As well, not all code status discussions necessarily result in a DNR order. Interest- ingly, in the current study, all those patients who initially had “full code” status documentation (whether before or after 48 h from admission) either had successful codes (n =2), or had their code status subsequently changed to DNR before a code blue was called (n =10). This may indicate that early code status discussions resulting in full code orders may also allow patients and substitute-decision makers the time to consider less aggressive end-of life care and reconsider DNR orders. NUR 390: Bioethical Issue Paper Grading Criteria
In the present study, only 33 % of those admitted for cancer treatment or investigation had documentation of code status within 48 h. However, the large majority of the latter group of patients had incurable disease, and the treatments offered were thus of palliative intent. Patients undergoing such treatments may have misconceptions re- garding the purpose of palliative treatment or of the poor prognosis associated with their disease [31]. Of note, there was an increased rate of DNR discussions ≤48 h from admission in patients with a spouse/partner, which is sim- ilar to results of another study documenting lower rates of CPR in married individuals [32]. These results may reflect an opportunity for discussions about advance directives amongst partners and/or the desire of patients not to place the burden of end-of-life decisions on their spouse in the case of incompetence to make decisions. NUR 390: Bioethical Issue Paper Grading Criteria
Our study has strengths and limitations. Unlike other studies [4, 5, 13], we used as our main variable timing of any code status documentation, including “full code” as well as DNR. We felt that what was important was the discussion regarding code status and the documentation of this decision, regardless of whether it was full code or DNR. It is possible that additional code status discus- sions took place, for which the outcome was not docu- mented as an order, particularly as a full code is implied unless a DNR order is written. Other limitations of this study include its retrospective nature and the collection of data from a single tertiary cancer care center. NUR 390: Bioethical Issue Paper Grading Criteria. The cohort of patients examined all died on the oncology wards; thus we do not have information on patients who were admitted and survived, or who were admitted and subsequently died in a different setting after being transferred. In particular, this likely resulted in an under- estimation of ICU admissions, because patients who were transferred to the ICU and died there were not included in the study. NUR 390: Bioethical Issue Paper Grading Criteria
Routine discussion and documentation of code status on admission in all patients with advanced cancer can avoid misunderstandings regarding patient wishes and prevent aggressive end-of-life care. It has been recom- mended that all healthcare institutions should have a “do not attempt resuscitation” policy [33]. Many health care facilities, including our own, have established policies to guide clinical-decision making with respect to wishes regarding CPR as a treatment and establishing limits when CPR is deemed almost certainly of no benefit to a patient. The results of this study provide support for the inclusion within such policies of guidelines for routine docu- mentation of code status within 48 h. NUR 390: Bioethical Issue Paper Grading Criteria
Table 4 Timing of code status and end-of-life outcomes
Code status ≤48 h OR (95 % CI) Exact p Value AOR (95 % CI) Exact p Value
Yes (n =151) No (n =185)
Code blue 3 (2 %) 28 (15 %) 0.11 (0.03–0.38) 0.0004 0.12 (0.02–0.43) 0.0001
CPR attempt 2 (1 %) 20 (11 %) 0.11 (0.03–0.48) 0.0005 0.12 (0.01–0.51) 0.001
Unsuccessful CPR attempt 0 (0 %) 20 (11 %) NE NE NE NE
ICU consultation 13 (9 %) 56 (30 %) 0.22 (0.11–0.42) <0.0001 0.19 (0.08–0.40) <0.0001
ICU admission 3 (2 %) 11 (5 %) 0.32 (0.09–1.17) 0.10 0.18 (0.02–0.85) 0.03
AOR adjusted odds ratio (adjusting for reason for admission and marital status), CPR cardio-pulmonary resuscitation, ICU intensive care unit, NE not evaluable (due to zero value for outcome with code status ≤48 h)
380 Support Care Cancer (2014) 22:375–381 NUR 390: Bioethical Issue Paper Grading Criteria
Disclosures There are no financial disclosures from any of the authors. This research was funded by the Canadian Cancer Society (grant #700862; CZ), the Bluma Appel Research Fund and the Ontario Ministry of Health and Long Term Care. Dr. Zimmermann is supported by the Rose Chair in Supportive Care, Faculty of Medicine, University of Toronto.NUR 390: Bioethical Issue Paper Grading Criteriat
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15. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T et al (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjust- ment. JAMA 300(14):1665–1673
16. Mack JW, Cronin A, Keating NL, Taback N, Huskamp HA, Malin JL et al (2012) Associations between end-of-life discussion characteristics
and care received near death: a prospective cohort study. J Clin Oncol 30(35):4387–4395
17. Earle CC, Park ER, Lai B, Weeks JC, Ayanian JZ, Block S (2003) Identifying potential indicators of the quality of end-of-life cancer care from administrative data. J Clin Oncol 21(6):1133–1138
18. Earle CC, LandrumMB, Souza JM, Neville BA, Weeks JC, Ayanian JZ (2008) Aggressiveness of cancer care near the end of life: is it a quality-of-care issue? J Clin Oncol 26(23):3860–3866
19. Grunfeld E, Lethbridge L, Dewar R, Lawson B, Paszat LF, Johnston G et al (2006) Towards using administrative databases to measure population-based indicators of quality of end-of-life care: testing the methodology. Palliat Med 20(8):769–777
20. Barbera L, Paszat L, Chartier C (2006) Indicators of poor quality end- of-life cancer care in Ontario. J Palliat Care 22(1):12–17
21. Lee KH, Angus DC, Abramson NS (1996) Cardiopulmonary resus- citation: what cost to cheat death? Crit Care Med 24(12):2046–2052 NUR 390: Bioethical Issue Paper Grading Criteria
22. Menezes BF, Morgan R (2008) Attitudes of doctors in training to cardiopulmonary resuscitation. Clin Med 8(2):149–151 NUR 390 : Ethical Dilemma in the Nursing Field Assignment
23. Sulmasy DP, Sood JR, Ury WA (2008) Physicians’ confidence in discussing do not resuscitate orders with patients and surrogates. J Med Ethics 34(2):96–101
24. Heyland DK, Frank C, Groll D, Pichora D, Dodek P, Rocker G et al (2006) Understanding cardiopulmonary resuscitation decision mak- ing: perspectives of seriously ill hospitalized patients and family members. Chest 130(2):419–428
25. Volandes AE, Paasche-Orlow MK, Mitchell SL, El Jawahri A, Davis AD, Barry MJ et al (2013) Randomized controlled trial of a video decision support tool for cardiopulmonary resuscitation decision making in advanced cancer. J Clin Oncol 31(3):380–386
26. Reilly BM, Magnussen CR, Ross J, Ash J, Papa L, Wagner M (1994) Can we talk? Inpatient discussions about advance directives in a community hospital. Attending physicians’ attitudes, their inpatients’ wishes, and reported experience. Arch Intern Med 154(20):2299– 2308
27. Reilly BM,Wagner M, Ross J, Magnussen CR, Papa L, Ash J (1995) Promoting completion of health care proxies following hospitaliza- tion. A randomized controlled trial in a community hospital. Arch Intern Med 155(20):2202–2206
28. Anderson WG, Pantilat SZ, Meltzer D, Schnipper J, Kaboli P, Wetterneck TB et al (2011) Code status discussions at hospital admission are not associated with patient and surrogate satisfaction with hospital care: results from the multicenter hospitalist study. Am J Hosp Palliat Care 28(2):102–108
29. Finlay E, Shreve S, Casarett D (2008) Nationwide veterans affairs quality measure for cancer: the family assessment of treatment at end of life. J Clin Oncol 26(23):3838–3844 NUR 390: Bioethical Issue Paper Grading Criteria
30. Smith CB, Bunch OL (2008) Do not resuscitate does not mean do not treat: how palliative care and other modalities can help facilitate communication about goals of care in advanced illness. Mt Sinai J Med 75(5):460–465
31. Guo Y, Palmer JL, Bianty J, Konzen B, Shin K, Bruera E (2010) Advance directives and do-not-resuscitate orders in patients with cancer with metastatic spinal cord compression: advanced care plan- ning implications. J Palliat Med 13(5):513–517 NUR 390: Bioethical Issue Paper Grading Criteria
32. Chen JS, Wang HM, Wu SC, Liu TW, Hung YN, Tang ST (2009) A population-based study on the prevalence and determinants of car- diopulmonary resuscitation in the last month of life for Taiwanese cancer decedents, 2001–2006. Resuscitation 80(12):1388–1393
33. Deakin CD (2005) New standards for cardiopulmonary resuscitation. BMJ 330(7493):685–686
Support Care Cancer (2014) 22:375–381 381
Copyright of Supportive Care in Cancer is the property of Springer Science & Business Media B.V. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. NUR 390: Bioethical Issue Paper Grading Criteria
- Timing of code status documentation and end-of-life outcomes in patients admitted to an oncology ward
- Abstract
- Abstract
- Abstract
- Abstract
- Abstract
- Introduction
- Materials and methods
- Study site and sample
- Statistical analysis
- Results
- Discussion
- References
‘‘Allow Natural Death’’ versus ‘‘Do Not Resuscitate’’: What Do Patients with Advanced Cancer Choose?
Miloš D. Miljković, MD, MSc,1 Dennis Emuron, MD,2 Lori Rhodes, MS,3
Joseph Abraham, ScD, MS,4 and Kenneth Miller, MD5 NUR 390: Bioethical Issue Paper Grading Criteria
Background: Many patients with advanced cancer at our hospital request full resuscitative efforts at the end of life. We assessed the knowledge and attitudes of these patients towards end-of-life (EOL) care, and their preferences about ‘‘Do Not Resuscitate’’ (DNR), ‘‘Allow Natural Death’’ (AND), and ‘‘full code’’ orders. Methods: The first 100 consenting adult patients with advanced cancer were surveyed regarding their diagnosis, prognosis, and attitudes about critical care and resuscitation. NUR 390: Bioethical Issue Paper Grading Criteria. They were then presented with hypothetical scenarios in which a decision on their code status had to be made if they had one year, six months, or one month left to live. Half were given a choice between being ‘‘full code‘‘ and ‘‘DNR,’’ and half could choose between ’’full code’’ and ‘‘AND.’’ Results: All 93 of the participants who completed the survey were considered by their attending physician to have a terminal illness, but only 42% of these interviewees believed they were terminally ill. In addition, only 25% of participants thought that their primary oncologist knew their EOL wishes. NUR 390: Bioethical Issue Paper Grading Criteria. Participants were equally likely to choose either of the ‘‘no code’’ options in all hypothetical scenarios ( p > 0.54), regardless of age, sex, race, type of cancer, education, or income level. A similar proportion of patients who had a living will chose ‘‘AND’’ and ‘‘DNR’’ orders instead of ‘‘full code’’ in all the scenarios (47%–74% and 63%–71%). In contrast, among patients who did not have a living will, 52% chose ‘‘DNR,’’ while 19% opted for ‘‘AND.’’ Conclusions: We hypothesized that ‘‘AND’’ orders may be more acceptable to patients with advanced cancer, but there was no statistically significant difference in acceptability between ‘‘AND’’ and ‘‘DNR’’ orders. NUR 390: Bioethical Issue Paper Grading Criteria
Introduction
On admission to acute care hospitals, patients ortheir surrogate decision makers must be asked if the patient has advance directives (ADs). In addition, the ad- mitting provider may inquire which life-prolonging mea- sures, if any, should be performed in case of active or impending cardiorespiratory arrest. In medical jargon, al- lowing all such measures is considered ‘‘full code,’’ while an order not to perform any such procedures is called a ‘‘Do Not Resuscitate’’ (DNR) order. These discussions are often conducted between a patient with a serious illness and a clinician who has never met them before. The dialogue may be open and frank, yet lack a broader perspective on the patient’s life, their illness, and their goals. If a patient’s medical condition worsens, a more pressing decision about actual end-of-life (EOL) care may follow. NUR 390: Bioethical Issue Paper Grading Criteria
It has been proposed that using the ‘‘softer, more com- forting, warmer’’ term ‘‘Allow Natural Death’’ (AND) in- stead of DNR may be more acceptable to patients and families considering EOL issues.1 The phrase ‘‘AND’’ was first introduced at the St. David’s Medical Center in Austin, Texas, with the hope that it would ‘‘increase the number of terminally ill patients who were allowed a death with digni- ty.’’2 In subsequent studies with neutral participants and surrogate decision makers—but not patients themselves— examinees were more likely to choose an AND than a DNR order.3,4 Unfortunately, there is paucity of information about terminally ill cancer patients’ acceptance of ‘‘AND’’ and ‘‘DNR’’ orders, about their knowledge of EOL treatment options, and about which factors contribute to the decisions they make regarding EOL care. NUR 390: Bioethical Issue Paper Grading Criteria. This is a study of how pa- tients with advanced cancer perceive their own prognosis and EOL care in general. In addition, their preferences towards
1Medical Oncology Service, National Cancer Institute, Bethesda, Maryland. 2Department of Internal Medicine, 3Alvin & Lois Lapidus Cancer Institute, Sinai Hospital of Baltimore, Baltimore, Maryland. 4Apex Epidemiology, Baltimore, Maryland. 5Division of Hematology/Medical Oncology, Alvin & Lois Lapidus Cancer Institute, Sinai Hospital of Baltimore, Baltimore, Maryland. Accepted February 9, 2015. NUR 390: Bioethical Issue Paper Grading Criteria
JOURNAL OF PALLIATIVE MEDICINE Volume 18, Number 5, 2015 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2014.0369
457
being full code versus either ‘‘DNR’’ or ‘‘AND’’ were ex- plored and analyzed in relation to patients’ characteristics, attitudes, and perceived prognosis.
Methods
Patients were invited to participate in the survey if their attending oncologist indicated they had advanced cancer and a projected life expectancy of less than one year, and they met the following criteria: (1) had capacity to make their own health care decisions, (2) spoke English as their first lan- guage, (3) were older than 18 years of age, (4) agreed to participate, and (5) their physician agreed that they could be approached for consent. After verbal agreement from the attending physician for the patient to participate, interviewers approached the patient and obtained informed consent. NUR 390: Bioethical Issue Paper Grading Criteria. The information gathered was not shared with the patients’ health care providers, though patients were encouraged to discuss these issues with them. A total of 112 patients were asked to participate and 100 agreed (89%). Seven of the 100 patients did not complete the interview. Two reported feeling un- comfortable with the topics that were being discussed, and five needed to be taken for additional testing, treatment, or for an unanticipated admission. NUR 390: Bioethical Issue Paper Grading Criteria
Upon approval of the institutional review board (IRB), a research associate or a resident physician in internal medicine not directly involved in patient care conducted semistructured interviews with 100 patients with advanced cancer who were seen at the outpatient cancer center or were admitted to the hematology-oncology inpatient service in a community hospital. Responses were recorded by the interviewer and entered into an IRB-approved database.
After obtaining demographic data and inquiring about the patients’ past medical history and current cancer stage, in- cluding whether they believed they had a terminal illness, they were asked about their general knowledge and attitude regarding life support and resuscitation orders (see Table 1). At the end of the interview participants were given three
hypothetical scenarios in which their projected life expec- tancies were one year, six months, and one month. Patients were randomly assigned to either be presented with the op- tion of being ‘‘full code’’ or ‘‘DNR,’’ or ‘‘full code’’ and ‘‘AND.’’ A sample size of 100 was planned to allow for the ability to determine a 20% difference in response rate to this portion of the study. Standard descriptive statistics were used as appropriate. Paired t-test and chi square test were used for testing statistical significance of parametric and nonpara- metric variables respectively. NUR 390: Bioethical Issue Paper Grading Criteria
Results
Of the 93 patients who completed the entire interview, 47 received the ‘‘DNR’’ and 46 the ‘‘AND’’ word choice in the hypothetical scenarios. The groups were similar in gender, ethnicity, education and income levels, cancer type, number of comorbidities, religion, and spirituality (see Table 1). Despite the two groups being similar demographically and in their reported knowledge of life-sustaining interventions, their attitudes towards those interventions were not the same (see Table 2). More patients in the ‘‘AND’’ than in the ‘‘DNR’’ group wanted to be maintained on a ventilator, have a tracheostomy and feeding tube placed, and receive CPR if they were to be in a permanent vegetative state ( p values 0.009–0.038). Patients in both groups were more agreeable to CPR than any other life-prolonging measure. NUR 390: Bioethical Issue Paper Grading Criteria
The patients’ knowledge and beliefs about life-prolonging measures are shown in Table 2. Of note, all of the participants were considered by their attending physicians to have a ter- minal illness, but only 42% of interviewees believed they had one. In addition, just 25% of participants thought that their primary oncologist knew their EOL wishes. Of the 64 interviewees who had not made their wishes known to their primary oncologist, 36 (56%) did not want to discuss life support wishes with them in the future. NUR 390: Bioethical Issue Paper Grading Criteria
Participants were equally likely to choose either of the ‘‘no code’’ options in all hypothetical scenarios ( p values > 0.54; see Fig. 1). Choosing ‘‘DNR’’ and ‘‘AND’’ was not correlated
Table 1. Demographic Characteristics of Participants
‘‘AND’’ group (n = 46) ‘‘DNR’’ group (n = 47) Total (n = 93)
Median age (range) 64 (29–88) 62 (31–88) 62 (29–88) Men (%) 15 (32.6) 15 (31.9) 30 (32.3) Caucasian (%) 29 (63.0) 26 (55.3) 55 (59.1) College degree or higher (%) 13 (28.3) 13 (27.7) 26 (28.0)
Income < 20,000 USD/year 11 (23.9) 8 (17.0) 19 (20.4) 21,000–50,000 USD/year 13 (28.3) 11 (23.4) 24 (25.8) > 50,000 USD/year 11 (23.9) 13 (27.7) 24 (25.8)
Cancer type Gastrointestinal 11 (23.9) 15 (31.9) 26 (30.0) Genitourinary 13 (28.3) 9 (19.1) 22 (23.7) Hematological 8 (17.4) 5 (10.6) 13 (14.0) Breast 6 (13.0) 6 (12.8) 12 (12.9) Lung 5 (10.9) 7 (14.9) 12 (12.9) Sarcoma 4 (8.7) 2 (4.3) 6 (6.4) Glioblastoma 1 (2.2) 2 (4.3) 3 (3.2) Other 2 (4.3) 2 (4.3) 4 (4.3)
One or more comorbidities (%) 23 (50.0) 16 (34.0) 39 (41.9)
458 MILJKOVIĆ ET AL. NUR 390: Bioethical Issue Paper Grading Criteria
with any of the demographic characteristics presented in Table 1 ( p values > 0.05). The proportion of patients who chose ‘‘DNR’’ or ‘‘AND’’ increased as their hypothetical survival time shortened.
As could be expected, patients who were in favor of CPR, intubation, tracheostomy, or feeding tube placement in case of a permanent vegetative state were significantly less likely to choose ‘‘AND’’ or ‘‘DNR’’ versus ‘‘full code’’ in any of the scenarios ( p values < 0.001; see Fig. 1). For patients who were against having CPR, the proportion choosing ‘‘DNR’’ (when given the option of ‘‘DNR’’ or ‘‘full code’’) grew as the hypothetical prognosis worsened. In contrast, for those who were opposed to having CPR and were given the choice between ‘‘AND’’ and ‘‘full code,’’ the proportion choosing ‘‘AND’’ was already high when one year survival was pro- jected, and did not increase significantly as projected life expectancy was shorter ( p values 0.003–0.031; see Fig. 1). Of patients who reported not having a living will, 45% chose the ‘‘DNR’’ order but only 8% chose ‘‘AND’’ when these
options were offered along with being ‘‘full code’’ ( p val- ues < 0.001). NUR 390: Bioethical Issue Paper Grading Criteria
Discussion
In this study of patients with advanced cancer, 58% of participants did not believe that their condition was terminal, 50% did not have a living will, and 61% had not appointed a health care power of attorney. Nearly all participants self- reported having knowledge about CPR, intubation, and other life-prolonging measures; but the minority of participants had a living will (LW) (49%) or durable power of attorney for healthcare (DPOA) (39%), similarly to previous reports.5,6 NUR 390: Bioethical Issue Paper Grading Criteria
Seventy-five percent of patients reported that the oncologist did not know their EOL wishes, which was consistent with previous studies.7,8 Interestingly, 56% of the patients in this study whose oncologists did not know their EOL wishes did not wish to discuss this topic with the clinician.
Previous studies with health care providers and patients’ family members indicated that ‘‘AND’’ phrasing might be more
Table 2. Participants’ Knowledge and Beliefs about EOL Care and Life-Prolonging Measures
‘‘AND’’ group % (n = 46) ‘‘DNR’’ group % (n = 47) Total % (n = 93)
Believes they have a terminal illness 15 (32.6) 24 (51.1) 39 (41.9) Has a living will 21 (45.6) 25 (53.2) 46 (49.5) Has DPOA 18 (39.1) 18 (38.3) 36 (38.7)
Knows about: ventilators 37 (80.4) 37 (78.7) 74 (79.6) intubation 39 (84.8) 40 (85.1) 79 (84.9) tracheostomy 41 (89.1) 43 (91.5) 84 (90.3) feeding tubes 46 (100) 45 (95.7) 91 (97.8) CPR 46 (100) 47 (100) 93 (100)
If permanently unconscious, would want: to be on a ventilator 18 (39.1) 7 (14.9) 25 (26.9) to have a tracheostomy placed 20 (43.4) 10 (21.3) 30 (32.3) to have a feeding tube placed 22 (47.8) 10 (21.3) 32 (34.4) to have CPR performed on me 27 (58.7) 17 (36.2) 43 (46.2) NUR 390 : Ethical Dilemma in the Nursing Field Assignment
Doctor knows these wishes 13 (28.3) 10 (21.3) 23 (24.7) DPOA/someone close knows these wishes 36 (78.3) 33 (70.2) 69 (74.2)
DPOA, durable power of attorney for healthcare. NUR 390: Bioethical Issue Paper Grading Criteria
FIG. 1. End-of-life choices in three different scenarios of patients presented with ‘‘DNR’’ and ‘‘full code’’ orders, and patients presented with ‘‘AND’’ and ‘‘full code’’ orders, overall and by different CPR preferences. AND, allow natural death; DNR, dot not resuscitate; PVS, permanent vegetative state.
‘AND’ VERSUS ‘DNR’ 459
acceptable than ‘‘DNR.’’3,9 In our sample of 93 patients with advanced cancer, however, there was no statistically significant difference in acceptability between ‘‘AND’’ and ‘‘DNR,’’ even as the clinical scenario predicted shorter survivals, to even one month of life (AND acceptance 47.83% versus DNR acceptance 61.70% at one month of predicted survival; see Fig. 1). NUR 390: Bioethical Issue Paper Grading Criteria
Since the interviewees’ emotional response and comfort with the two discussions was not evaluated and compared, we cannot know their effect on what participants chose in each scenario. Another limitation of the study is that, despite randomization being successful in terms of demographic characteristics (see Table 1), significantly more patients in the ‘‘AND’’ group were in favor of CPR beforehand; and fewer had living wills, making the number of patients that chose the ‘‘no code’’ order in each group harder to compare. NUR 390: Bioethical Issue Paper Grading Criteria
Proponents of ‘‘AND’’ phrasing cite emotional comfort as one of its advantages when compared to ‘‘DNR.’’8,9 We hypothesized that ‘‘AND’’ would be more acceptable than ‘‘DNR,’’ but overall the two orders were equally acceptable. For a subset of patients who were given a projected life ex- pectancy of one year and indicated that they would not want CPR, the ‘‘DNR’’ order was more acceptable than ‘‘AND.’’ Instead of using different phrasing to affect the patients’ choices, providers could use other methods to educate pa- tients about EOL care—including video decision support tools11,12 or palliative care consult teams.13,14
Author Disclosure Statement
No competing financial interests exist. NUR 390: Bioethical Issue Paper Grading Criteria
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References
1. Cohen RW: A tale of two conversations. Hastings Cent Rep 2004;34:49.
2. Meyer C: ‘‘Allow Natural Death An Alternative to DNR?’’ Hospice Patients Alliance Website. 2014. www.hospicepatients .org/and.html. (Last accessed December 10, 2013.)
3. Venneman SS, Narnor-Harris P, Perish M, et al.: ‘‘Allow natural death’’ versus ‘‘do not resuscitate:’’ Three words that can change a life. J Med Ethics 2008;34:2–6.
4. Barnato AE, Arnold RM: The effect of emotion and physician communication behaviors on surrogates’ life- sustaining treatment decisions: A randomized simulation experiment. Crit Care Med 2013;41:1686–1691.
5. Guo Y, Palmer JL, Bianty J, et al.: Advance directives and do-not-resuscitate orders in patients with cancer with met-
astatic spinal cord compression: Advanced care planning implications. J Palliat Med 2010;13:513–517. NUR 390: Bioethical Issue Paper Grading Criteria
6. Sharma RK, Dy SM: Documentation of information and care planning for patients with advanced cancer: Associa- tions with patient characteristics and utilization of hospital care. Am J Hosp Palliat Care 2011;28:543–549.
7. Virmani J, Schneiderman LJ, Kaplan RM: Relationship of advance directives to physician-patient communication. Arch Intern Med 1994;154:909–913.
8. Lamont EB, Siegler M: Paradoxes in cancer patients’ ad- vance care planning. J Palliat Med 2000;3:27–35.
9. Jones BL, Parker-Raley J, Higgerson R, et al.: Finding the right words: Using the terms allow natural death (AND) and do not resuscitate (DNR) in pediatric palliative care. J Healthc Qual 2008;30:55–63.
10. Kelley CG, Lipson AR, Daly BJ, et al.: Advance directive use and psychosocial characteristics: An analysis of pa- tients enrolled in a psychosocial cancer registry. Cancer Nurs 2009;32:335–341. NUR 390: Bioethical Issue Paper Grading Criteria
11. Volandes AE, Paasche-Orlow MK, Mitchell SL, et al.: Randomized controlled trial of a video decision sup- port tool for cardiopulmonary resuscitation decision making in advanced cancer. J Clin Oncol 2013;31:380– 386.
12. Epstein AS, Volandes AE, Chen LY, et al.: A randomized controlled trial of a cardiopulmonary resuscitation video in advance care planning for progressive pancreas and hepatobiliary cancer patients. J Palliat Med 2013;16:623– 631.
13. Gonsalves WI, Tashi T, Krishnamurthy J, et al.: Effect of palliative care services on the aggressiveness of end-of-life care in the Veteran’s Affairs cancer population. J Palliat Med 2011; 14:1231–1235.
14. Sacco J, Deravin Carr DR, Viola D: The effects of the Palliative Medicine Consultation on the DNR status of African Americans in a safety-net hospital. Am J Hosp Palliat Care 2013;30:363–369.
Address correspondence to: Miloš D. Miljković, MD, MSc
National Cancer Institute Medical Oncology Service
10 Center Drive, Room 12N226 Bethesda, MD 20814
E-mail: milos@miljko.org
460 MILJKOVIĆ ET AL.
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Letters to the Editor
Exploring the Definition of an Informed Health Care Proxy
Joseph D. Ma, PharmD,1,2 Melanie Benn, LCSW,3 Sandahl H. Nelson, MS,1
Ashleigh Campillo, BS,1 Sean F. Heavey, BS,1 Arlene Cramer, NP1 Carolyn Revta, MPH,1
Kathryn Thornberry, LCSW,3 and Eric J. Roeland, MD, FAAHPM1
Dear Editor: The goal of advance care planning (ACP) is for patients to
communicate their end-of-life (EoL) treatment preferences to a selected proxy. However, it is not clear what information must be shared to adequately inform a proxy. Given the practical challenges of measuring ACP conversations, previous studies have focused on measuring ACP surrogates such as code status documentation or completion of advance directives (ADs) and/ or physician orders for life-sustaining treatment (POLSTs).1,2
However, it has been demonstrated that AD completion alone does not necessarily promote high-quality EoL communication or understanding between patients and proxies.3 NUR 390: Bioethical Issue Paper Grading Criteria
The aim of this pilot study was to determine the feasibility of completing a focused ACP conversation identifying an informed proxy in a single clinic visit. This study was com- pleted in adult cancer patients with a prognosis of less than one year. A clinical social worker led the ACP intervention between study patients and proxies focusing on three EoL preferences: (1) the patient’s personal definition of quality of life, (2) his or her specific plan if he or she cannot achieve this quality of life, and (3) desired location of death. The proxy was deemed ‘‘informed’’ if he or she understood these three
EoL preferences. Patients were encouraged but not required to complete an AD/POLST and followed until death. NUR 390: Bioethical Issue Paper Grading Criteriat
Thirty-five patients were screened and 34 patients were available for the analytic sample (Table 1). Eighty-two per- cent (n = 28) of proxies were ‘‘informed’’ following the in- tervention, and 65% (n = 22) completed the intervention in a single visit. Following the intervention, 54% completed a new AD (n = 15) and 9% (n = 3) completed a POLST. There was a statistically significant increase in AD/POLST com- pletion ( p < 0.001). For those patients that died (n = 31), there was 81% (n = 25) and 61% (n = 19) concordance of desired and actual code status and location of death, respectively. Neither concordance was significantly different based on the completion of an AD/POLST ( p = 0.34 and p = 0.27). These rates are higher than those demonstrated in prior studies,1 NUR 390: Bioethical Issue Paper Grading Criteria
including our institutional historical rate.4
In this study we explored the definition of an ‘‘informed’’ health care proxy through the use of this ACP approach and observation of desired versus actual EoL preferences. Results of this pilot study suggest a focused ACP intervention was feasible and may be sufficient to inform a proxy and achieve EoL preferences, but require further prospective validation. NUR 390: Bioethical Issue Paper Grading Criteria
Table 1. Results
Number Percentage p value
AD/POLST before the intervention 7 of 34 21%
Completed intervention & identified an ‘‘informed’’ proxy 28 of 34 82% Completed in a single clinic visit 22 of 34 62% New and/or revised AD/POLST 22 of 34 65% Rate of new AD/POLST completion 18 of 34 53% p < 0.001 Selected DNR code status 29 of 34 85% Selected ‘‘out of hospital’’ as preferred location of death 22 of 34 65%
Patients followed until death 31 of 34 91% Actual code status determined 27 of 31 87% Code status concordance 25 of 31 81% Actual location of death determined 25 of 31 81% Location of death concordance 19 of 31 61% ‘‘Informed proxy’’ and concordant code status p = 0.57 Completion of AD/POLST and concordance with code status p = 0.27
AD, advance directive; DNR, do not resuscitate; POLST, physician orders for life-sustaining treatment. NUR 390: Bioethical Issue Paper Grading Criteria
1Moores Cancer Center, 2Skaggs School of Pharmacy & Pharmaceutical Sciences, University of California, San Diego, La Jolla, California.
3University of California, San Diego Medical Center, San Diego, California. Accepted October 26, 2015.
JOURNAL OF PALLIATIVE MEDICINE Volume 19, Number 3, 2016 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2015.0439
250 NUR 390: Bioethical Issue Paper Grading Criteria
Acknowledgments
This study was supported in part by the American Cancer Society Institutional Research Grant 70-002 provided through the University of California San Diego Moores Cancer Center. NUR 390: Bioethical Issue Paper Grading Criteria
References
1. Temel JS, Greer JA, Admane S, et al.: Code status docu- mentation in the outpatient electronic medical records of patients with metastatic cancer. J Gen Intern Med 2010; 25:150–153.
2. Chiarchiaro J, Arnold RM, White DB: Reengineering ad- vance care planning to create scalable, patient- and family- centered interventions. JAMA 2015;313:1103–1104.
3. Shalowitz DI, Garrett-Mayer E, Wendler D: The accuracy of surrogate decision makers: A systematic review. Arch Intern Med 2006;166:493–497.
4. Horton JM, Hwang M, Ma JD, Roeland E: A single-center, retrospective chart review evaluating outpatient code status documentation in the epic electronic medical record for patients with advanced solid tumor cancer. J Clin Oncol (meeting abstracts) 2013;31. NUR 390: Bioethical Issue Paper Grading Criteria
Address correspondence to: Eric J. Roeland, MD, FAAHPM
University of California, San Diego Moores Cancer Center
La Jolla, CA 92093
E-mail: eroeland@ucsd.edu
LETTERS TO THE EDITOR 251
Copyright of Journal of Palliative Medicine is the property of Mary Ann Liebert, Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. NUR 390: Bioethical Issue Paper Grading Criteria
ORI GIN AL PA PER
Religious, Ethical and Legal Considerations in End-of- Life Issues: Fundamental Requisites for Medical Decision Making
Puteri Nemie Jahn Kassim • Fadhlina Alias
Published online: 10 January 2015 � Springer Science+Business Media New York 2015
Abstract Religion and spirituality have always played a major and intervening role in a person’s life and health matters. With the influential development of patient autonomy and the
right to self-determination, a patient’s religious affiliation constitutes a key component in
medical decision making. NUR 390: Bioethical Issue Paper Grading Criteria. This is particularly pertinent in issues involving end-of-life deci-
sions such as withdrawing and withholding treatment, medical futility, nutritional feeding
and do-not-resuscitate orders. These issues affect not only the patient’s values and beliefs, but
also the family unit and members of the medical profession. The law also plays an intervening
role in resolving conflicts between the sanctity of life and quality of life that are very much
pronounced in this aspect of healthcare. Thus, the medical profession in dealing with the
inherent ethical and legal dilemmas needs to be sensitive not only to patients’ varying
religious beliefs and cultural values, but also to the developing legal and ethical standards as
well. There is a need for the medical profession to be guided on the ethical obligations, legal
demands and religious expectations prior to handling difficult end-of-life decisions. The
development of comprehensive ethical codes in congruence with developing legal standards
may offer clear guidance to the medical profession in making sound medical decisions.
Keywords End-of-life decisions � Religious considerations � Ethical dilemmas � Legal standards
Introduction
Technological and pharmacological advances in medicine have created more challenges to
healthcare professionals as modern medical interventions progress to increase life
P. N. Jahn Kassim (&) Civil Law Department, Ahmad Ibrahim Kulliyyah of Laws, International Islamic University Malaysia, 53100 Kuala Lumpur, Malaysia e-mail: puterinemie@hotmail.com
F. Alias Ahmad Ibrahim Kulliyyah of Laws, International Islamic University Malaysia, 53100 Kuala Lumpur, Malaysia
123 NUR 390: Bioethical Issue Paper Grading Criteria
J Relig Health (2016) 55:119–134 DOI 10.1007/s10943-014-9995-z
expectancy of terminally ill patients. These life-prolonging measures have made end-of-
life care an emerging aspect in the medical field. Decisions at the end of life are no longer
confined to clinical assessments as to what would be in the best interests of the patient from
a purely medical perspective, but involve due consideration of a patient’s religious beliefs,
customs and values, which ultimately have significant influence on a patient’s response to
illness, suffering and dying. NUR 390: Bioethical Issue Paper Grading Criteria. Furthermore, the decision-making process also affects
healthcare providers, particularly if the doctor and patient come from diverse cultural
backgrounds and adhere to different sets of values. The conflicting ethical views and
developing legal standards in this area on matters concerning the sanctity and quality of
life, patient autonomy and medical paternalism have also made end-of-life decisions an on-
going debate (Agarwal and Murinson 2012; Billings and Krakauer 2011; Cantor 2005;
Chin 2002; da Rocha 2009; Huxtable 2002; Kuhse 1981; Orentlicher 1998; Rabiu and
Sugand 2014). In any event, all affected parties carry with them their own individual life
experiences, values and beliefs to the decision-making process; accordingly, the event of
death itself, the manner in which it takes place, and the patient’s quality of life are
significant matters that have spiritual and psychological consequences for each of them.
The Importance of Ethics, Religion and Law as Guidance for Medical Decision Making
Ethics is classified as a sub-branch of applied philosophy that is intrinsically related to
morality (Padela 2007). NUR 390: Bioethical Issue Paper Grading Criteria. The correlation between ethics and morality is that morality refers
to social norms that distinguish from right to wrong, while ethics describes moral conduct
based on the character and principles in each profession (Elsayed and Ahmed 2009).
Medical ethics is a subdivision of ethics that is concerned with moral principles as they
relate to biomedical science in the clinical and investigational arenas (Padela 2007).
Ethical principles are essential in helping to guide medical judgements that need to be
made and should be intrinsically linked to the application of clinical skills and knowledge,
which are used for delivering what is in the best interests of the patient (Tallon 2012).
Accordingly, medicine and morality are thus very much interrelated, as the primary
function of medicine is not only ‘‘to cure illness…but to cure people of their illnesses’’ (Steinberg 2003). The importance of observing medical ethics can be outlined as follows: NUR 390: Bioethical Issue Paper Grading Criteria
(1) ethical standards promote the aim of medical care; (2) medical care is built on the
communication, trust and respect between the medical team on the one side, and the patient
and/or family on the other side; (3) ethical standards help generate public support for
healthcare; (4) public awareness and support for healthcare will promote ethical conduct by
healthcare providers in the performance of their duties; and (5) ethical standards promote
moral and social values and facilitate cooperation and collaborative work between different
medical disciplines, leading to a healthy healthcare environment (Elsayed and Ahmed
2009). All existing medical codes of ethics directly and indirectly incorporate into their
provisions the fundamental principles which form the ethical basis of medical care, i.e.
autonomy, paternalism, non-maleficence, beneficence and justice.
In recognition of the fact that culture and its components of religion and spirituality
constitute major social factors that greatly influence the provision of medical care, espe-
cially at the end of life, some countries have also expressly included these components in
their ethical codes. For example, the Good Medical Practice: a code of conduct for doctors
in Australia issued by the Medical Board of Australia (‘‘GMC’’) contains provisions on
‘‘Culturally Safe and Sensitive Practice’’ which state that ‘‘good medical practice involves
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genuine efforts to understand the cultural needs and contexts of different patients to obtain
good health outcomes’’ which includes: (1) having knowledge of, respect for and sensi-
tivity towards the cultural needs of the community that one serves, including those of
indigenous Australians; (2) acknowledging the social, economic, cultural and behavioural
factors influencing health, both at individual and population levels; and (3) understanding
that one’s own culture and beliefs influence one’s interactions with patients (Medical
Board of Australia n.d.; Medical Council of New Zealand 2013). Furthermore, in Clause
3.12 of the GMC, which deals with end-of-life care, respect and support for the values and
wishes of the patient and family members are emphasised, including ‘‘different cultural
practices related to death and dying’’ (Medical Board of Australia n.d.). NUR 390: Bioethical Issue Paper Grading Criteria
Cultural competence, i.e. the acquisition of the knowledge and skills that enhance the
management of cultural issues in the clinical environment requires skilled verbal and non-
verbal communication as a means of appreciating differences (Carey and Cosgrove 2006).
Better healthcare especially at the end of life can only be achieved if these factors are given
due consideration as medicine does not merely deal with elements of pure science, but also
major and intrinsic humanistic and ethical components (Steinberg 2003). In Part 3 of the
End of Life Care Strategy issued by the Department of Health in the UK (UK Department
of Health 2008), guidelines are provided to address the spiritual needs of patients nearing
the end of life. This is complemented by the NHS Chaplaincy (UK Department of Health
2003), which acts as a guidance to those involved in the provision of chaplaincy-spiritual
services. It is submitted however that the content of the End of Life Care Strategy and NHS
Chaplaincy, while respecting and recognising the importance of religious and spiritual
considerations in end-of-life care, is not intended to specifically provide an understanding
of the different values and beliefs on end-of-life issues. It is noteworthy that the
Queensland Health Multicultural Services in collaboration with the Islamic Council of
Queensland has published a series of handbooks for healthcare providers in attending to
Muslim, Hindu and Sikh patients, respectively (Queensland Health and Islamic Council of
Queensland n.d., 2010, 2011). NUR 390: Bioethical Issue Paper Grading Criteria. Specific areas covered in the handbooks include religious
approaches to end-of-life issues, pain management and the concept of death and dying.
These are intended to support healthcare providers by building their knowledge of the
diverse needs of their patients, noting that ‘‘those who display cross-cultural capabilities in
their work use self-reflection, cultural understanding, contextual understanding, commu-
nication and collaboration to provide culturally appropriate, responsive and safe health
care’’ (Queensland Health and Islamic Council of Queensland n.d., 2010, 2011).
In addition to the above, an integrated effort to develop a codified religious-based
system of ethical conduct can also be seen in the form of the Islamic Code of Medical
Ethics (First International Conference on Islamic Medicine 1981) (‘‘Islamic Code’’), which
was drawn up and adopted at the First International Conference on Islamic Medicine in
1981. The Islamic Code aims to provide a guideline to Muslim doctors in understanding
the tenets of Islam, which are relevant to the performance of their duties. The Islamic Code
cites authorities from the Shari‘ah and provides the Islamic perspective on an array of
subject matters concerning medical care, including end-of-life issues such as the preser-
vation of life, the refusal of a patient to a prescribed plan of treatment, medical inter-
ventions and futile therapy. In addition, the duty to respect the autonomy of the patient, as
well as the obligation to ensure that harm is prevented (non-maleficence), and medical
decisions are made to the benefit and best interests of the patient (beneficence), are inherent
ethical values in the Islamic Code. The extent of application of the Islamic Code in
healthcare policies and legislation of countries populated by Muslims, however, are of
varying degrees from one country to the next. NUR 390: Bioethical Issue Paper Grading Criteria
J Relig Health (2016) 55:119–134 121 NUR 390: Bioethical Issue Paper Grading Criteria
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In general, the majority of Arab countries emphasise the importance of healthcare
professionals to respect human dignity, provide the best care available to patients and their
families, as well as protecting their rights, safety and confidentiality (UNESCO Cairo
Office 2011). Countries such as Jordan, Libya and Indonesia have gone further in their
efforts to take steps to include guidelines pertaining to certain end-of-life decisions in their
regulatory framework (Majelis Kehormatan Etik Kedokteran Indonesia 2001; UNESCO
Cairo Office 2011), while in other countries such as Malaysia and the UAE, the extent of
application of Islamic principles in the same area is uncertain, as specific provisions on the
subject matter have yet to be incorporated in their respective laws or ethical codes
(Malaysian Medical Association 2002; UNESCO Cairo Office 2011). NUR 390: Bioethical Issue Paper Grading Criteria
The intervention of law in the area of medicine has been regarded as pivotal, particu-
larly in offering clear guidance in issues that raise ethical, philosophical and religious
dilemmas. The law has been seen as a means of controlling the medical profession in the
interests of the community as a whole. As advocated by Lord Hoffman in Airedale NHS
Trust v Bland (‘‘Airedale NHS Trust v. Bland’’ 1993), ‘‘…medical ethics [is] to be formed by the law rather than the reverse’’ (‘‘Airedale NHS Trust v. Bland’’ 1993). However, legal
intervention in itself may cause problems particularly when the courts may find themselves
drawn in to act as mediators in complex and frequently distressing clinical matters. In any
event, judges have to make decisions to protect public policy and do justice to both the
patient and the doctor.
The judicial courts in Malaysia have yet to decide on issues involving end-of-life
decisions; thus, at the moment, such matters are considered to be purely medical decisions
(Kassim and Adeniyi 2010; Talib 2002). As the law in this area has yet to reach its fullest
extent, the developments in countries such as the UK and the USA have been able to shed
light on how conflicting ethical principles are resolved by the courts and the application of
different tests in their decisions. Accordingly, their experience would provide invaluable
lessons for Malaysia to develop holistic ethical codes that are in congruence with devel-
oping legal standards. This is because by virtue of section 3 of the Civil Law Act 1956, due
to the lacunae in Malaysian law on end-of-life decisions, English common law and the
rules of equity would be applicable as a source of reference for the courts.
The Scope of End-of-Life Care
End-of-life care refers to the health and social care system required to address the physical,
social, spiritual and emotional needs of patients who are in the final stages of their lives as
well as those who are afflicted with terminal illnesses (Colello et al. 2011; Tallon 2012).
From the healthcare perspective, end-of-life care encompasses both palliative care and
hospice care, which aim to provide a comfortable environment to restore and improve
patients’ quality of life as far as it is practically possible (Centre for Bioethics 2005; Chater
and Tsai 2008; Tallon 2012). The World Health Organization defines palliative care as ‘‘an
approach that improves the quality of life of patients and their families facing the problem
associated with life-threatening illness, through the prevention and relief of suffering by
means of early identification and impeccable assessment and treatment of pain and other
problems, physical, psychosocial and spiritual’’ (World Health Organisation n.d.).
Although both palliative care and hospice care share the same objectives, these two
areas should not be confused with one another. Palliative care focuses on reducing the
severity of disease symptoms for patients who are seriously ill, and can be delivered along
with curative treatment at any time during the course of the patient’s illness (Centre for
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Bioethics 2005; Colello et al. 2011). In addition, palliative care is not restricted to patients
near the end of life and can be used in both acute and long-term settings (Centre for
Bioethics 2005). Hospice care on the other hand is focused on terminally ill patients, who
no longer seek curative medical treatment, and is generally offered when the patient is
expected to live for 6 months or less (Colello et al. 2011). A salient similarity between
palliative care and hospice care is that both involve the mobilisation of an interdisciplinary
team of professionals comprising doctors, nurses, social workers and psychologists, with
the assistance of chaplains, nutritionists, pharmacists and others (Centre for Bioethics
2005; Colello et al. 2011). NUR 390: Bioethical Issue Paper Grading Criteria
The Ethical Considerations in End-of-Life Care
Conflicting ethical values between healthcare providers and patients may impede the
decision-making process in end-of-life care (Carey and Cosgrove 2006; Chater and Tsai
2008; Mazanec and Tyler 2003). On the part of the healthcare provider, respecting the
patient’s autonomy in the decision-making process may at times be inconsistent with the
performance of their ethical obligations of beneficence and non-maleficence. Ethical
challenges are further compounded in cases where the patient is incapable of interaction
and deciding for himself, whereby family members would stand in as proxy to decide what
would have likely been the wishes of the patient pertaining to a certain course of action.
The ethical considerations in end-of-life care which have raised ethical dilemmas can be
looked at from three aspects: NUR 390: Bioethical Issue Paper Grading Criteria
Withholding and Withdrawal of Medical Interventions
Medical interventions such as resuscitation, ventilators and the use of antibiotics in cases of
infection may operate to save and prolong the life of a terminally ill patient. However, such
treatments may run counter to the patient’s wishes who may request that the same be
withdrawn or refuse them altogether. For example, some patients may view cardiopul-
monary resuscitation as a death-delaying act, which contradicts with their values and
beliefs that one should not alter the course of nature (Markwell 2005; Mazanec and Tyler
2003; Sachedina 2005). In cases where the condition of the patient necessitates respiratory
therapy, some patients and family members may view it as a non-beneficial treatment
which only serves to impede in what they believe should be the natural process of dying
(Centre for Bioethics 2005). Consequently, such patients or their family members may
seek a do-not-resuscitate order from their doctor. In such circumstances, doctors are
confronted with ethical dilemmas on whether to adhere to the patient’s and family
members’ wishes or to decide on what is the best course of action for the patient. For
example, if the decision to withdraw treatment is carried out and death is thereby hastened,
would this action violate the ethical principal of non-maleficence which demands that
actions taken must prevent harm to the patient? Nevertheless, it has also been argued that it
is permissible to withhold or withdraw treatment and allow the disease process to progress
to a natural death for the patient (Kinsella and Booth 2007). However, any decision to
withhold or withdraw treatment should be based upon the expectation that the patient can
no longer benefit from that treatment, it is medically futile and the doctor’s intention when
doing so must be to relieve the patient of the burdens associated with that treatment
(Kinsella and Booth 2007). NUR 390: Bioethical Issue Paper Grading Criteria
J Relig Health (2016) 55:119–134 123
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Withdrawing medical treatment has always been seen as acceptable as there is a clear
distinction between positive acts and omissions. According to the acts–omissions dis-
tinction, ‘‘in certain contexts, failure to perform an act, with foreseen bad consequences of
that failure, is morally less bad than to perform a different act which has the identical
foreseen consequences. It is worse to kill someone than to let them die’’ (Glover 1977).
Thus, acting to kill a patient even for good reasons may seem wrong, whereas omitting to
act by withholding life-saving treatment may seem right in certain compelling circum-
stances. It follows that permitting an illness to progress naturally, as opposed to making
something happen by acting intentionally, appears to be more acceptable legally and
ethically (Glover 1977; McLachlan 2008). NUR 390: Bioethical Issue Paper Grading Criteria
Medical Futility
Medical futility is described as an intervention that will not be able to reach the intended
goal of the intervention (Cavalieri 2001). This usually occurs during assessments on
whether to forego or withdraw life-sustaining treatments (Centre for Bioethics 2005). The
determination of medical futility raises ethical concerns, particularly, on the reasons for
considering the treatment as futile. The fact that such decision rests solely in the hands of
the healthcare providers may lead to possibilities of the discretion being exercised arbi-
trarily. For instance, medical treatment may be discontinued not only because it no longer
benefits the patient, but such continuation may be considered futile in order to save cost
(Centre for Bioethics 2005; Zahedi et al. 2007). NUR 390: Bioethical Issue Paper Grading Criteria. Further, discontinuation of life-sustaining
treatments particularly artificial nutrition and hydration causes a great deal of ethical
tension and emotional burden, especially to the family members of a dying patient (al-
Shahri and Al-Khenaizan 2005; Bülow et al. 2008). Food and water are considered to be
the basic sustenance of human survival, and denying them to a patient may be viewed by
family members as starving their loved one to death (Noah 2006). NUR 390: Bioethical Issue Paper Grading Criteria
However, medical opinions vary on this issue. Some argue that continuing artificial
nutrition and hydration prevents suffering to a certain extent, while others claim that it is an
unnecessary burden with no clear symptom benefit (Olsen et al. 2010). There are also those
that hold the view that nutrition and hydration treatments are palliative care that fulfil a
basic human need and should not be denied at the end of life (Centre for Bioethics 2005;
Zahedi et al. 2007). However, in some circumstances, the continuous supply of nutrition
and hydration may not be beneficial to a dying patient and may in fact be distressing as the
patient’s gastrointestinal function deteriorates (Kahn et al. 2003). It is therefore suggested
that the principle of proportionality be applied with regard to life-sustaining treatments at
end-of-life care. Nutrition and hydration may thus be ethically withheld or discontinued if
the dying patient suffers burdens that outweigh the life-prolonging benefit, irrespective of
whether death will be the result (Centre for Bioethics 2005). NUR 390: Bioethical Issue Paper Grading Criteria
Pain Management/Terminal Sedation
Terminal sedation is used in end-of-life care to relieve severe suffering. It refers to the use
of medications to induce decreased or absent consciousness to the extent that the patient
will no longer feel pain, air hunger or other forms of distress (Kahn et al. 2003; Olsen et al.
2010). In the practice of euthanasia, a lethal injection is administered in an amount that is
certain to bring about and ultimately intended to cause the death of the patient, while
terminal sedation differs from euthanasia in that the dose of medication is maintained
rather than increased once sedation is achieved; the intent being not to hasten death but to
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relieve suffering (Kahn et al. 2003). Several ethical concerns have been raised, particularly
on the unknown effect that terminal sedation may have on hastening death, and the
potential abuse of patients who are rendered unconscious during the process, in which right
to autonomy is inhibited (Centre for Bioethics 2005; Kahn et al. 2003).
On the risk of exposing patients to a premature death, two major arguments have been
forwarded to justify and dispel this notion: firstly being the doctrine of double effect. The
double effect doctrine, as applied in medicine, is based on two basic presuppositions: the
doctor’s motivation is to ease suffering, and the treatment must be proportional to the
illness (Malik 2012). The doctrine applies if (1) the desired outcome is judged to be good,
e.g. relief of suffering and is not in itself immoral; (2) the bad outcome, e.g. death of
patient is not intended even if it is foreseen; (3) the good outcome is not achieved by means
of the bad; and (4) the good outcome outweighs the bad (Malik 2012; Markwell 2005).
Secondly, it has been argued that the fear that palliative sedation hastens the dying process
is unfounded since studies have shown that sedatives administered appropriately and
proportionately are able to prolong the chances of survival and improve the quality of life
(Centre for Bioethics 2005; Olsen et al. 2010; Tallon 2012). NUR 390: Bioethical Issue Paper Grading Criteria
Further, the effects of pain management also give rise to ethical dilemmas in terms of
the patient’s cognitive perceptions. Since critically ill patients who are sedated are put
into a state of reduced consciousness, this results in the loss of their social interaction.
This not only hampers their ability to effectively communicate and partake in any further
decision-making process regarding their medical care, but also affects the emotional state
of their loved ones. The idea of being put into a deep sleep may not be well tolerated
with certain patients and their families whose spiritual belief includes that one should
face death with a clear, alert and unclouded state of mind (Keown 2005; Zahedi et al.
2007). NUR 390: Bioethical Issue Paper Grading Criteria
Religious and Spiritual Considerations in End-of-Life Care
In end-of-life care, religion and religious traditions serve two primary functions, namely
the provision of a set of core beliefs about life events and the establishment of an ethical
foundation for clinical decision-making (Daaleman 2000). Spirituality, on the other hand,
revolves around a sense and purpose of life, which may not necessarily involve religious
beliefs and practices. Both religion and spirituality support a person’s sense of security
and belonging, and can be especially significant in end-of-life care, offering the patient a
way to find meaning in dying as in life (Chater and Tsai 2008; Daaleman 2000; Mazanec
and Tyler 2003). Clinical assessments on quality of life involve the examination of how
a patient’s illness and well-being are influenced by the patient’s physical, social and
psychological conditions (Tallon 2012). Thus, the inclusion of measures of religiousness
and spirituality into such framework will enable doctors to have a better understanding
of patients’ beliefs, values, expectations and needs and at the same time facilitate a
dynamic interaction between patients, family members and healthcare professionals.
Religion and spirituality can potentially mediate quality of life by enhancing a patient’s
well-being through social support, stress and coping strategies (Daaleman 2000). The
following paragraphs outline the different ethical considerations relating to end-of-life
care from the Roman Catholic, Jewish, Buddhist and Islamic perspectives in issues such
as sanctity of life, withholding and withdrawing of medical interventions and pain
management. NUR 390: Bioethical Issue Paper Grading Criteria
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The Roman Catholic Perspective
There are two basic human values underlining Catholic bioethics, that is, human dignity,
and interconnectedness of every individual to promote a just social order (Markwell 2005;
Padela 2006). The value of human dignity stems from the fundamental belief that life is
sacred as Catholics believe that they are mere stewards of their human bodies and are
therefore accountable to God for the life that they have been given (Markwell 2005; Padela
2006). The value of interconnectedness relates to the relationship and responsibility that
each member of society holds towards one another. These two central elements of Catholic
bioethics influence end-of-life decisions in the following manner. Firstly, the dignity of the
human person, as one who is oriented towards God, requires him or her to make choices for
the good within a free and informed conscience; and secondly, the interaction between
doctor and patient must take the form of a mutual relationship of trust and respect: the
patient trusts that the doctor’s intentions and acts are carried out in good faith, and the
doctor seeks to understand what the patient’s wishes might be (Markwell 2005).
Accordingly, Christianity prioritises the significance of patient autonomy and veracity in
ethical decision-making. The doctor is under an obligation to provide the patient and
family members with the requisite medical information, advice and analysis, but it is
ultimately the patient who will decide which treatment or course of action is best aligned
with his personal values and beliefs. NUR 390 : Ethical Dilemma in the Nursing Field Assignment
In terms of withholding and withdrawing of futile therapy, the Catholic Church allows
this to be done if it is burdensome, dangerous, extraordinary or disproportionate to the
expected outcome (Bülow et al. 2008). Likewise, the same principle is adopted in cases of
pain management or palliative sedation (Bülow et al. 2008; Markwell 2005). While the
issue of pain and suffering is important to Catholic bioethics as an opportunity to induce
personal growth and gain closeness to God, this belief does not imply that pain relief
should be withheld in order that a patient might come to understand the redemptive nature
of suffering (Markwell 2005). Christianity allows for the administration of analgesia and
sedation to alleviate terminal suffering if this does not, by obtunding consciousness, take
away a final chance for repentance (Zahedi et al. 2007). The aforesaid views of the
Catholic Church take cognizance of the applicability of the doctrine of double effect in
bioethical issues (Bülow et al. 2008; Malik 2012; Markwell 2005), and it is considered to
be one of the ‘‘most significant principles proposed by all Catholic medical ethicists’’
(Curran 2008; Malik 2012). Withdrawal of artificial nutrition and hydration from patients
at the end of life and for people in a persistent vegetative state, however, is a controversial
issue in the Christian faith. In 2004, the then Pope John Paul II issued a pronouncement
stating that the cessation of nutrition and hydration resulting in death by starvation
amounted to euthanasia which is strictly forbidden (Bülow et al. 2008; Noah 2006). This
view has been met with criticism by most bioethicists and medical ethics organisations, as
it contradicts much of the Catholic doctrine on matters of end-of-life care (Noah 2006). NUR 390: Bioethical Issue Paper Grading Criteria
The Jewish Perspective
There are three main principles in Jewish medical ethics: life is of utmost value; ageing,
illness, and death are a natural part of life; and improvement of the patient’s quality of life
is a constant commitment (Padela 2006). When applied in the context of end-of-life care,
the Jewish position is that dying is a natural part of life’s journey that should be addressed
with dignity and compassion (Loike et al. 2010) and human beings have both the per-
mission and the obligation to heal (Zahedi et al. 2007). The principle of sanctity of life
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connotes that any decision that may directly or indirectly result in hastening death is
prohibited. However, Jewish law recognises that ‘‘if situations necessitate foregoing certain
rules and regulations for a higher purpose, for example, that of saving life or improving
quality of life or avoiding harm, then one is allowed to do so’’ (Padela 2006). According to
the Jewish legal system or Halacha (which to those of the Jewish faith represents a
comprehensive guide to human life, regulating all aspects of behaviour through assigning
moral values to actions as well as determining sacred law), there are several basic
guidelines related to end of life that distinguish between: (a) acts of omission and acts of
commission; (b) treatments pertaining to the dying process (or illness) and treatments
unrelated directly to the dying process; (c) treatments that are continuous in nature in
which withdrawing of such treatments is considered an act of commission and treatments
that are cyclic in nature in which the withholding of the next cycle of treatment is con-
sidered an act of omission; and (d) patients who are expected to die within 6 months and
those patients with less serious medical conditions (Loike et al. 2010). NUR 390: Bioethical Issue Paper Grading Criteria
Based on the above, on the issue of withholding and withdrawing life-sustaining
treatment, Jewish law allows for such act or omission to be carried out only if such
treatment is of a recurrent nature and provided that the patient has clearly consented to it.
This includes withholding any life-prolonging activities such as intubation, surgery, che-
motherapy or dialysis, even after initiation of the same, because such action is viewed as
omitting the next treatment rather than committing an act of withdrawal (Bülow et al.
2008). If the same constitutes a continuous form of life-sustaining treatment, for example, a
respirator or cardiac pacemaker, then such withdrawal is forbidden. The strictest position
in Judaism restricts permission to withdraw or withhold treatment to cases where doctors
assume that the patient will die within 72 h (Dorff 2005; Zahedi et al. 2007). Patients and
doctors are allowed to withhold or withdraw clinical treatment in cases where the patient is
diagnosed with incurable terminal illness, as long as it is within the patient’s best interests.
Further, the Halacha considers oxygen, food and fluids to be essential components of life
to which every human being is entitled. Accordingly, a dying patient cannot be denied
these basic needs, and withdrawal of artificial nutrition and hydration is not allowed as it is
seen as an act leading to death. However, in cases where the continuance of artificial
nutrition and hydration cause suffering and complications to a patient who is approaching
death, such support may be withdrawn upon the request of the patient or if it can be
ascertained that that was the patient’s wish (Bülow et al. 2008). NUR 390: Bioethical Issue Paper Grading Criteria
Movement’s Committee on Jewish Law and Standards adopted a somewhat dissimilar
view in classifying artificial nutrition and hydration as medicine, permitting their removal
where there is not likely to be any reasonable prospect for recovery at the end of life
(Zahedi et al. 2007). It is suggested that when the decision is made to discontinue artificial
nutrition and hydration, the focus of communication should be on ‘‘what will be done to
demonstrate respect for the patient, rather than on emphasising what will be withdrawn or
withheld’’ (Gillick 2001; Loike et al. 2010). With regard to palliative sedation, there is a
general agreement in Jewish law that this is permitted in spite of the risk that the
administration of such drugs may shorten life, based on the principle of double effect
(Bülow et al. 2008; Loike et al. 2010). NUR 390: Bioethical Issue Paper Grading Criteria
The Buddhist Perspective
The two most fundamental values in Buddhism are compassion and respect for life (Keown
2005). According to the Buddhist faith, life ‘‘begins at conception and ends at death: in the
interval between these events, the individual is entitled to full moral respect, regardless of
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the stage of psycho-physical development attained or the mental capacities enjoyed’’
(Keown 2005). The manner of dying and death is of particular significance in Buddhism;
death with an unclouded mind is believed to lead to a better rebirth in the next life (Keown
2005; Zahedi et al. 2007), and death is an experience that will recur many times. Con-
sequently, this concept has significant bearing on end-of-life issues such as palliative
sedation and pain management, as the concern would be to maintain a mental and sensory
clarity at all times. In terms of artificial nutrition and hydration, the Buddhist perspective
maintains that such life-sustaining support cannot be discontinued, even from patients in a
persistent vegetative state (Keown 2005; Zahedi et al. 2007). This stems from the notion
that in Buddhism, damage to the brain is not differentiated from injury to any other part of
the human body when considering the ethics of treatment (Keown 2005). NUR 390: Bioethical Issue Paper Grading Criteria
The above does not, however, mean that there is a moral obligation in Buddhism that
life must be preserved at all costs. The ethical validity of an act or omission in Buddhism is
measured against the aim or motive of such conduct. If a patient ‘‘makes death his aim’’,
then the refusal of medical care is considered to be an offence; declining further treatment
due to the patient’s acceptance that recovery is grim and death is inevitable, is on the other
hand legitimate (Keown 2005). NUR 390: Bioethical Issue Paper Grading Criteria. men. It follows that proceeding with futile treatment goes against
the teachings of Buddhism; ‘‘to seek to prolong life beyond its natural span by recourse to
increasingly elaborate technology when no cure or recovery is in sight is a denial of the
reality of human mortality, and would be seen by Buddhism as arising from delusion and
excessive attachment’’ (Keown 2005).
The Islamic Perspective
The Shari‘ah or Islamic law is based on two primary sources, the Holy Qur‘an (the Holy Book
which Muslims believe to be the word of God Almighty) (Al-Qur’an 2:2) and the Sunnah of
Prophet Muhammad (peace be upon him) (his words, conduct and tacit approval) (Al-Qur’an
4:59). The secondary source of the Shari‘ah is found in ijtihad (deductive reasoning) (Su-
laiman 2008, Sunan Abu Dawud, Book 24, Hadith no. 3585). The guiding principles, rules
and regulations in the main sources govern the Islamic way of life and, together with ijtihad,
provide a comprehensive moral and juridical framework to address and accommodate issues
relating to human conditions (Gatrad and Sheikh 2001). In Islamic jurisprudence, each
deliberation towards resolving any given issue must observe the following five fundamental
principles which are known as maqasid al-shari‘ah: preservation of life, protection of an
individual’s freedom or belief, maintenance of intellect, preservation of honour and integrity,
and protection of property. Congruently, end-of-life issues in Islamic bioethics involve
ethical considerations on the sanctity of human life. This ruling is ordained in the Holy Qur’an
in the following verse: ‘‘Do not take life which God has made sacred except in the course of
Justice’’ (Al-Qur’an 6:151). It is accordingly forbidden for anyone to deliberately end a life:
‘‘Whosoever takes a human life, for other than murder or corruption in the earth, it is as if he
has taken the life of all of mankind’’ (Al-Qur’an: 5:32). NUR 390: Bioethical Issue Paper Grading Criteria
The saving of a life is considered one of the highest merits and imperatives in Islam
(Zahedi et al. 2007). Doctors must do everything they can to prevent a premature death.
However, this does not come at all costs; when death is inevitable, and clinically evaluated
treatment is obviously futile, it ceases to be mandatory (Khan 2002). Islam recognises that
there are times in which human beings need to recognise their own limits and let nature
take its course (Al-Qur’an 39:42); resorting to futile treatment in order to put off death is
not acceptable in Islam (Zahedi et al. 2007). Muslim jurists agree that it is possible for a
collective decision to be reached between the attending doctor, patient and family members
128 J Relig Health (2016) 55:119–134
123 NUR 390: Bioethical Issue Paper Grading Criteria
to refuse medical interventions and discontinue life-sustaining treatments if such proce-
dures will in no way improve the condition or quality of life, on the basis of informed
consent (Bülow et al. 2008; Sachedina 2005; Zahedi et al. 2007). However, if invasive
treatment has been intensified to save a patient’s life, Muslim jurists have ruled that life-
saving equipment cannot be switched off unless the doctor is certain about the inevitability
of death (Sachedina 2005). NUR 390 : Ethical Dilemma in the Nursing Field Assignment
Islam maintains the position that patients should not be denied their basic human rights
of nutrition and hydration even at the end of life. This is due to the fact that withdrawal of
such needs would hasten death, which is forbidden in Islam (Bülow et al. 2008; Gatrad and
Sheikh 2001; Khan 2002). However, administering analgesia to lessen suffering in end-of-
life care is permitted even if in the process, death is hastened, based on the Islamic teaching
that ‘‘actions are to be judged by their intentions’’ (Bülow et al. 2008; Gatrad and Sheikh
2001; Sachedina 2005; Zahedi et al. 2007). It follows that the intended purpose of palli-
ative sedation is not to facilitate death, but rather to save a patient from severe discomfort,
which renders it ethically legitimate from the Islamic viewpoint. NUR 390: Bioethical Issue Paper Grading Criteria
In Islam, pain is believed to be a form of trial from God to test a Muslim’s faith and
spiritual standing (Al-Qur’an 2:153–7). Muslims should thus endure pain with patience and
perseverance, but this does not mean that they are forbidden to seek a means to alleviate
the suffering. The Holy Qur’an states that ‘‘surely the good deeds will drive away the evil
deeds [which cause suffering]’’ (Al-Qur’an 11:114); inferentially, this implies the per-
missibility for a person’s endeavour to overcome pain (Albar 2007; Sachedina 2005). This
precept is further substantiated by other verses in the Holy Qur’an and the Sunnah that
encourage Muslims to remove harm and difficulty (Al-Qur’an 2:185, 5:6 and 94:28; al-
Bukhari 1997 (Book 2, Hadith no. 38)). In Islamic ethics, an individual’s welfare is
intimately linked with his or her family and community (Sachedina 2005). Hence, neither
autonomy nor paternalism is the determining factor in deciding a course of action in
matters relating to end-of-life decisions, but rather, a joint decision made by all parties
associated with the patient, which may require the involvement of religious authorities, if
needed (Sachedina 2005). NUR 390: Bioethical Issue Paper Grading Criteria
The Developing Legal Standards
Decision making at the end of life must necessarily take into account the courts’ standing
on such issues and the legal implications that would ensue. In order for a comprehensive
ethico-legal framework to exist where medical codes of ethics are affirmed as good
practice, the latter must be compatible with current developments of the law. In the UK,
when decisions are made on behalf of a patient, the principle of ‘‘best interests’’ has
consistently been the determinative principle in legal cases. A responsible decision by a
team of medical experts to withdraw life-sustaining treatments and withhold further
medical interventions which have been determined to be futile and would not be in the
patient’s best interests is permissible under the law and would not subject healthcare
professionals to criminal proceedings. This principle was enunciated in the landmark case
of Airedale NHS Trust v Bland (‘‘Airedale NHS Trust v. Bland’’ 1993), where the House
of Lords discussed its legal justification in relation to the principle of sanctity of life and
patient autonomy. NUR 390: Bioethical Issue Paper Grading Criteria
The case concerned one Anthony Bland, a victim of the disaster at the Hillsborough
Football Stadium who suffered irreversible damage to his cerebral cortex which rendered
him in a persistent vegetative state. He was fed artificially and mechanically with a
J Relig Health (2016) 55:119–134 129
123 NUR 390: Bioethical Issue Paper Grading Criteria
nasogastric tube and showed no cognitive response to his surroundings. All his natural
bodily functions had to be operated with nursing intervention, requiring 4–5 h of nursing
attention by two nurses daily. After three and a half years of remaining in this condition, a
court declaration was sought by Bland’s attending doctor to cease further treatment, which
involved extubation, i.e. withdrawal of artificial nutrition and hydration and withholding of
antibiotic treatment in case of infection. The declaration was based on a clinical assessment
by medical experts that there was absolutely no hope for recovery for Bland and thus any
medical intervention would be futile and not in the best interests of the patient. In arriving
at its judgement, the court ruled that the principle of sanctity of life was not absolute; ‘‘it
must yield to the right of self-determination’’ (per Lord Goff in Airedale NHS Trust v
Bland (‘‘Airedale NHS Trust v. Bland’’ 1993 at p. 866). The principle of self-determination
requires that the patient’s wishes be respected to the extent that if a patient of sound mind
refuses to consent to a medical treatment which would prolong his life, the doctor
responsible for his care must abide by the former’s wishes, regardless of the fact that such
refusal is unwise. NUR 390: Bioethical Issue Paper Grading Criteria
In the case of an insensate patient like Bland who lacked the capacity to validly consent
or refuse medical treatment, the lawfulness of such medical treatment depended upon
whether it was in the best interests of the patient (per Sir Thomas Bingham in Airedale
NHS Trust v Bland (‘‘Airedale NHS Trust v. Bland’’ 1993 at p. 843). The court further held
that doctors were not under an unqualified duty to prolong life at all costs; accordingly, the
duty to provide medical care ‘‘ceases when such treatment can serve no humane purpose’’
(per Lord Hoffman in Airedale NHS Trust v Bland (‘‘Airedale NHS Trust v. Bland’’ 1993
at p. 856). In Bland’s case, the futility of the treatment in providing him any quality of life
ethically justified its termination (per Lord Goff in Airedale NHS Trust v Bland (‘‘Airedale
NHS Trust v. Bland’’ 1993 at p. 870). NUR 390: Bioethical Issue Paper Grading Criteria
A patient’s right to autonomy was reiterated in Ms B v An NHS Hospital Trust (‘‘Ms B
v An NHS Hospital Trust’’ 2002). Here, the case involved a patient who was mentally
competent and had repeatedly yet unsuccessfully requested for the withdrawal of medical
therapy to which she was subjected. Ms B suffered a spinal cavernoma, which necessitated
neurological surgery to remove it. During the course of her hospitalisation and treatment,
she executed a living will stating that if at any point of time, she was incapable of giving
instructions, she wanted treatment to be withdrawn if she was suffering from a life-
threatening condition, permanent mental impairment or permanent unconsciousness.
Unfortunately, as a result of the surgery, Mrs B became completely paralysed from the
neck down and was treated with a ventilator to ease her respiratory problems. She even-
tually regained some movement in her head and was able to speak, pursuant to which she
requested to her clinicians on several occasions to have the ventilator removed. The
clinicians were not prepared to do so as they considered it to not be in her best interests, i.e.
it would inevitably lead to her death. In allowing Mrs B’s claim for a declaration that the
hospital had been treating her unlawfully, the court upheld the principle of self-determi-
nation, referring to the judgements delivered by the bench in Airedale NHS Trust v Bland
(‘‘Airedale NHS Trust v. Bland’’ 1993) on the interface between the two conflicting
principles of autonomy and preservation of life. It was accordingly ruled that the principle
of ‘‘best interests’’ was not applicable in cases where the patient had the mental capacity to
make relevant decisions about her medical treatment, and therefore, a doctor was under an
obligation to respect the wishes of the patient, even if it was plain to all parties, including
the patient, that death would ensue. NUR 390: Bioethical Issue Paper Grading Criteria
The approach to the issue on end of life adopted by the US courts is not entirely
dissimilar to the law in the UK (it is noted that although the House of Lords in Airedale
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123 NUR 390: Bioethical Issue Paper Grading Criteria
NHS Trust v Bland (‘‘Airedale NHS Trust v. Bland’’ 1993) declined to apply the test of
‘‘substituted judgment’’ used by the US courts in the case of an incapable patient, Lord
Hoffman at p. 857 noted that such principle, to the extent that it pays respects to what most
likely would have been the patient’s views, ‘‘may be subsumed within the English concept
of best interests’’). In the absence of the expressed wishes of a patient (be it in the form of
oral statements or advance directives), decisions are based on the patient’s presumed
wishes (Meisel 2008). This is known as the doctrine of ‘‘substituted judgement’’. Under
this doctrine, a surrogate appointed by a patient is legally authorised to make decisions on
behalf of the patient, or where there is no surrogate, the patient’s family members, based on
the patient’s values and beliefs. This practice marks the difference between the USA and
the UK positions; in the UK, it is not a legal requirement for relatives to assent on behalf of
a patient who is unable to give consent (per Lord Goff in Airedale NHS Trust v Bland
(‘‘Airedale NHS Trust v. Bland’’ 1993 at p. 872). Discussions with relatives are never-
theless of utmost value because they assist in providing indications about the patient’s own
attitudes and values concerning treatment (Kinsella and Booth 2007). NUR 390: Bioethical Issue Paper Grading Criteria
The prolific Florida case of Theresa Marie Schiavo (‘‘Schiavo ex rel. Schindler v.
Schiavo’’ 2005) is noteworthy not only to illustrate the application of the ‘‘substituted
judgement’’ test, but also due to the controversial intervention of the executive body and
conservative groups in the dispute surrounding her medical care, which attracted intense
media coverage. Theresa Schiavo was in a persistent vegetative state for 15 years, fol-
lowing a cardiac arrest. Although she suffered from irrevocable cerebral cortex, she was
able to breathe on her own and was kept alive through artificial nutrition and hydration
which was delivered by way of a tube implanted in her body. After having accepted the
grim medical prognosis that his wife’s incapacity was permanent, Michael Schiavo
attempted to seek the court’s permission for the removal of her feeding tube so that she
could die peacefully, stating that it would have been against Theresa’s wishes and values to
have her life prolonged in a vegetative state with no hope of recovery. Since Theresa
Schiavo had not appointed a surrogate, in accordance with Florida law, her husband was
authorised to act as the proxy decision-maker, ahead of her other family members (‘‘FLA.
STAT. § 765.401(1)’’ 2005; Noah 2006). In an ensuing series of intense court battles over a
period of 7 years, including the controversial intervention of the US Congress, Theresa
Schiavo’s parents, Robert and Mary Schindler, fought against Michael Schiavo’s desig-
nation as legal surrogate and his request to withdraw the life-sustaining treatment from his
wife. Despite immense pressure from political groups, all state and federal courts which
heard the case ruled in favour of Michael Schiavo’s application. NUR 390: Bioethical Issue Paper Grading Criteria
In 2004, in what is seen to have been a response to Theresa Schiavo’s case, a pro-
nouncement was made by the then Pope John Paul II concerning the impermissibility of the
withdrawal of artificial nutrition and hydration (Bülow et al. 2008; Noah 2006). This was
relied on by the Schindlers, arguing that since their daughter was a practising Catholic, she
would have been inclined to abide by the papal decree (Noah 2006). Although the courts
recognised the relevance of a patient’s religious affiliations, no proper inference could be
made as to Theresa’s personal understanding and level of adherence to Catholic principles,
and thus, it was difficult to form a decision in that respect (Noah 2006). This highlights the
need for a more effective mechanism to facilitate religious and spiritual awareness in end-
of-life care, so that ethical and social implications can be ‘‘anticipated and acted upon in
advance rather than post factum’’ (Steinberg 2003). On that note, it is argued that the legal
system is not the most appropriate platform to cope with the different ethical dilemmas
created by the dynamic changes in the medical world; instead, multidisciplinary ethic
committees may prove to be more efficacious in developing and recommending policies
J Relig Health (2016) 55:119–134 131
123 NUR 390: Bioethical Issue Paper Grading Criteria
and procedures to resolve ethical conflict (Steinberg 2003), which are more pronounced at
the end of life.
Conclusion
In a world of increasing cultural pluralism and multi-faith societies, there is an undeniable
need for those involved in health services to have increased awareness and understanding
of the various and distinct value and belief systems of the patients whom they attend to.
Sensitivity towards cultural and religious differences leads to increased trust between
doctor and patient, resulting in a compassionate and improved end-of-life care environ-
ment. Further, aspects of end-of-life care such as withholding and withdrawal of medical
interventions, futile treatments and palliative sedation involve a manifold of ethical
dilemmas, necessitating a structured approach into the different value systems of each
individual patient. It is thus important that healthcare providers inquire into and evaluate a
patient’s religious and spiritual beliefs as well as his personal attitude towards end-of-life
issues such as illness, pain and death. This may accordingly be facilitated through the
formulation and implementation of ethical codes which give due consideration to the
characteristics of religion, culture and locality. The importance of adequate and effective
communication between doctor and patient must also not be underestimated, as it plays a
crucial role in minimising misunderstanding and resolving conflict, as well as promoting a
mutual and collective approach to decision-making. NUR 390: Bioethical Issue Paper Grading Criteria
Acknowledgments This paper was funded by the Ministry of Higher Education Malaysia and presented at the Asian Conference on Ethics, Religion and Philosophy 2014 (ACERP—Osaka 2014).
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- Religious, Ethical and Legal Considerations in End-of-Life Issues: Fundamental Requisites for Medical Decision Making
- Abstract
- Introduction
- The Importance of Ethics, Religion and Law as Guidance for Medical Decision Making
- The Scope of End-of-Life Care
- The Ethical Considerations in End-of-Life Care
- Withholding and Withdrawal of Medical Interventions
- Medical Futility
- Pain Management/Terminal Sedation
- Religious and Spiritual Considerations in End-of-Life Care
- The Roman Catholic Perspective
- The Jewish Perspective
- The Buddhist Perspective
- The Islamic Perspective
- The Developing Legal Standards
- Conclusion
- Acknowledgments
- References
NUR 390: Bioethical Issue Paper Grading Criteria