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Treatment refusal: the beliefs and experiences of Alberta nurses
International Journal of Nursing Studies 39 (2002) 71–77
Treatment refusal: the beliefs and experiences of Alberta nurses Ursula Dawe, Marja J. Verhoef *, Stacey A. Page Department of Community Health Sciences, Faculty of Medicine, University of Calgary, 3330 Hospital Drive NW, Calgary, AB, Canada T2N 4NI Received 27 July 2000; received in revised form 20 November 2000; accepted 6 December 2000
Abstract This study explored the beliefs and experiences of Alberta nurses concerning withholding and withdrawal of treatments from incurably or terminally ill patients. A mailed survey containing closed and open-ended questions was used to gather data. A response rate of 47% was achieved. The majority of respondents believed patients should legally be able to request that treatments be withheld (98%) or withdrawn (97%). More than half of the respondents had received requests from patients, families or physicians to withhold or withdraw treatments. Occasionally, nurses acted without physicians’ knowledge. Three different positions with respect to decision-making in withholding and withdrawing of care, ‘subordinate’, ‘collaborative’ and ‘independent’, emerged from nurses’ written comments on the questionnaire. Consensus among health care practitioners and consumers is critical to end-of-life decision-making. # 2001 Elsevier Science Ltd. All rights reserved. Keywords: Withholding/withdrawing treatment; Nursing ethics
1. Introduction Nurses are frequently the primary care givers to the terminally or incurably ill, providing constant care and attendance. Through this role, nurses often form close relationships with patients and their families, developing an intimate appreciation of their circumstances. On occasion, nurses may be confronted with situations where patients, families or physicians request that nurses withhold or withdraw life-sustaining treatments. These actions may be followed by the patient’s death as the underlying illness or condition is allowed to run its natural course. Treatments withheld or withdrawn range from basic interventions such as hydration and nutrition through to mechanical ventilation, renal dialysis or cardiopulmonary resuscitation. Requests for withholding or withdrawing treatments may create conflict for nurses’ professional and personal values. Respect for patient autonomy is central in the Code of Ethics for Nursing (Canadian Nurses Association, *Corresponding author. Tel.: +1-403-2207813; fax: +1-4032707307. E-mail address: [email protected] (M.J. Verhoef).
1997). Consistent with this principle, the Canadian Nurses Association (CNA) supports the rights of all competent persons to make informed decisions about their health care and treatment including the right to refuse or discontinue life-sustaining treatments. For nurses, this fundamental respect for autonomy guides patient advocacy and caring. At the same time, the CNA also supports nurses’ rights to decline participation in procedures that are contrary to their professional or personal moral values, in which case care of the patient would be transferred to another nurse who is comfortable with the proposed course of action. In some cases, nurses and other health care professionals may be asked to carry out decisions as written in personal directives. The Personal Directives Act, which came into effect in Alberta in 1997, requires that service providers follow any clear instructions in the personal directive or follow the instructions of a designate (e.g., family member) if one has been named. Health care decisions contained within personal directives, generally pertain to what type of treatment is to be used or discontinued and cannot contain instructions relating to aided suicide, euthanasia, or other actions prohibited by law. Similar to the CNA guidelines, the Act does not
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require the health care professional to carry out instructions in personal directives if such instructions are contrary to the professional’s moral or professional ethics, and again care of the patient would be transferred to another health professional (Government of Alberta, 1996). It has been argued that the Canadian Criminal Code does not provide clear guidance regarding the issues of withholding or withdrawing treatment and there is some debate as to whether it could create criminal liability for health care practitioners in these situations (Fish and Singer, 1992; Lemmens, 1996). Conversely, Canadian law prohibits the administration of treatments without informed consent and thus health care professionals who treat patients without consent are open to criminal charges of battery and/or assault (Government of Canada, 1985). The well publicized case of Nancy. B, in which the 25-year old incurably ill woman sought to have her respiratory support withdrawn illustrates problems inherent with the status quo (Fish and Singer, 1992). Amendments to the Code clarifying these issues have been presented but not adopted, leaving room for continued ambiguity in its interpretation. Parallel cases could arise in common law (i.e., law based on judicial decisions versus statutes) with action of negligence and battery arising. Thus, nurses often face competing obligations when dealing with end-of-life decisions for those in their care: they are responsible to patients and families as care givers and advocates; they have professional responsibilities to physicians and institutions regarding patient care protocols and compliance with medical orders; they are answerable to the legal system; and finally they are accountable to their own value systems and consciences. While many papers have provided theoretical discussions of the issues at hand in the withholding or withdrawing of treatments, or have explored nurses’ and/or other health care providers’ reactions to hypothetical vignettes (e.g., Berky, 1998; Breier, 2000; Burck, 1996; Cook et al., 1995; Dalinis and Henkelman, 1996; Day et al., 1995; Goodhall, 1997; Iserson, 1996; Luce, 1997), little has been reported about nurses’ actual beliefs and experiences regarding the withholding or withdrawing of treatments as only a few studies have investigated these practices/issues. In one of the few studies in literature, a survey of Australian nurses, it was reported that 502/920 (55%) of the respondents who had treated terminally or incurably ill patients had been asked by at least one patient to hasten death (Kuhse and Singer, 1992). Of this proportion, approximately two-thirds received requests to have treatments withheld or withdrawn. One in ten nurses (10%) indicated they had complied with such patient requests without having been asked by a physician to do so: the primary reason given for these actions was respect for the patients’ wishes. In a subsequent replication study
also conducted in Australia, 77% (132/171) of responding palliative care or oncology nurses had been asked by patients to hasten their deaths and that 66% of these requests were to forego life-sustaining treatments. A slightly higher proportion of respondents (16%) indicated they complied with the patient request without having been asked to do so by a physician (Aranda and O’Conner, 1995). Both of these studies must be interpreted with caution, however, given their modest response rates (49% and 45%, respectively). Specific knowledge about Canadian nurses’ beliefs and practices with respect to end-of-life care is important for understanding the nurses’ role in ethical decision making, to raise awareness of the issues and to aid future policy development. This paper describes the beliefs and experiences of Alberta nurses practicing in care settings where withholding and withdrawing treatments are often a part of end-of-life care. Ethical approval was obtained from the Conjoint Health Research Ethics Board at the University of Calgary.
2. Methods The sample consisted of registered nurses in active practice in the province of Alberta. The Alberta Association of Registered Nurses (AARN) assisted by randomly selecting 1000 nurses from its registration database. Eligibility criteria included: employment in general medicine or oncology in a general hospital, with annual hours of work equivalent to at least 75% full time. The list file of names and addresses was delivered to an independent third party contracted by the researchers to distribute the study questionnaires. In this way the identity of participants remained unknown to the researchers. The eight-page questionnaire was composed of items developed specifically for this study, as well as relevant items from similar surveys of Australian nurses (Kuhse and Singer, 1993) and Alberta physicians (Verhoef and Kinsella, 1993). Approximately half the questionnaire contained items pertaining to withholding/withdrawing treatments while the remaining half contained items assessing sociodemographic characteristics and items pertaining to active euthanasia. This paper focuses on the data resulting from the sections on withholding and withdrawal of treatment: the data on active euthanasia will be presented in a future publication. Questions addressing opinions and practices regarding withholding and withdrawing treatments were laid out in a parallel manner in the questionnaire. For example, see Table 1. Other questions assessed whether nurses had been asked by patients, family members and/or physicians to withhold or withdraw treatments and how they responded to these requests. These questions were laid out in a similar manner as the example in Table 1.
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Table 1 Example of questionnaire layout Withholding treatment
Withdrawing treatment
At present, patients can legally request the withholding of life-sustaining measures. What is your opinion about this? & Patients should be able to request withholding of treatments & Patients should not be able to request the withholding of treatments & Uncertain
At present, patients can legally request the withdrawal of life-sustaining measures. What is your opinion about this? & Patients should be able to request withdrawal of treatments & Patients should not be able to request the withdrawal of treatments & Uncertain
Closed and open-ended questions were asked to elicit nurses’ beliefs about, and experiences with these issues. In addition, respondents were invited to write additional comments elaborating on their responses if they so desired. An initial covering letter and questionnaire were mailed to the sample followed by a second questionnaire four weeks later in an effort to maximize the response rate. The questionnaires did not have any identifiers on them to preserve the anonymity of respondents. Continuous variables were summarized using means ( SD) or medians (IQR) as appropriate. Categorical variables were summarized using proportions. The influence of specific respondent characteristics (number of years in practice, religious activity, religious affiliation) on beliefs about morality and on compliance with requests was explored. Responses to questions about withholding treatments were compared to responses about withdrawing treatments. Depending on the level of measurement, Chi squares or t-tests were used to examine these relationships. Written comments were synthesized using a content analysis where the ideas within the narrative were analyzed and recurring themes were identified.
3. Results Four hundred and sixty-six completed, useable surveys were returned to the investigators for a response rate of 47%. Most nurses were female (96%) and educated in Canada (88%); 16% had earned an undergraduate degree. The average age of the sample was 41.4 yr (SD=9.7 yr). Slightly more than one-half of nurses were employed in either Edmonton or Calgary (58%); the remainder worked in other Alberta cities (17%) or in smaller communities throughout the province (25%). The primary work setting for most nurses (90%) was inpatient acute care. The remainder worked in outpatient clinics, cancer centers and long term care facilities. The types of nursing practice most often reported in these care settings were general medicine (81%), and/or palliative care (40%) and/or oncology (26%). The median weekly caseload of patients suffering in the end stages of some terminal illness or incurable
condition was three (IQR 1.5–5). Fifty-five percent indicated their religious affiliation was Protestant, 28% Catholic, 13% unaffiliated and 4% were from other religious groups. Level of religious activity was described as ‘regular’ by 32%, as ‘occasional’ by 34% and as ‘not active’ by 33%. 3.1. General beliefs and practices The majority of respondents felt that patients should legally be able to request life-sustaining treatments be withheld (98%) or withdrawn (97%). Nurses’ experience with patient, family and physician requests to withhold or withdraw treatments is summarized in Tables 2–4. Slight differences in numbers in these Tables (e.g., 280 versus 272 and 185 versus 182 in Table 2), are due to missing data. The majority of responding nurses had been asked by patients, families and/or physicians to withhold or withdraw treatments. Treatments most frequently cited in nurses’ responses to an open-ended question were nutrition, hydration, antibiotics, other medications for managing medical conditions and assisted ventilation. With the exception of patient requests to withhold (60%) versus withdraw (50%) treatments (p=0.003), the pattern of responses comparing withholding to withdrawing treatments were quite similar and did not differ significantly. Having received requests, nurses were more likely to comply with them than not. Compliance with requests did differ however according to who was making the request; nurses were significantly most likely to comply with requests from physicians, followed by family and patients (p50.0001). Of the nurses who had received requests, most had received requests from or on behalf of, several patients (i.e., more than three patients). When the request came from the patient or family members, the results suggest that most nurses would obtain physician approval prior to taking any action. Nevertheless, relatively large proportions (20%) of nurses who had received requests to withhold or withdraw treatments from either patients or family complied without physician involvement in the decision. Nurses complying with patient requests to withhold or withdraw treatments and complying with family requests to withdraw treatments had significantly fewer
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Table 2 Patient requests for withholding or withdrawing treatments Issue
Withhold
Withdraw
Had been asked by a patient to withhold or withdraw treatments
280/466 (60%) 185/272 (68%) 51/182 (28%)
226/452 (50%) 148/221 (67%) 32/146 (22%)
Had complied at least once with patient request to withhold or withdraw treatment Had complied at least once with patient request to withhold or withdraw treatment without physician order
Table 3 Family member requests for withholding or withdrawing treatments Issue
Withhold
Withdraw
Had been asked by a family member to withhold or withdraw patient treatment Had complied at least once with family request to withhold or withdraw treatment Had complied at least once with family request to withhold or withdraw treatment without physician order
253/460 (55%) 183/244 (75%) 38/180 (21%)
232/452 (52%) 151/226 (67%) 28/149 (19%)
Table 4 Physician requests for withholding or withdrawing treatments Issue
Withhold
Withdraw
Had been asked by a physician to withhold or withdraw patient treatment
274/456 (60%) 263/267 (98%)
247/433 (57%) 235/237 (99%)
Had complied at least once with physician request to withhold or withdraw treatment
years of practice experience (p=0.001, 0.005 and 0.03, respectively). Similarly, nurses complying with family requests to withhold treatment tended to have fewer years of practice experience (p=0.07). The number of nurses who did not comply with physician requests to withhold (n=5) or withdraw treatments (n=2) was too small to test meaningfully. No relationships were found between compliance with patient, family or physician request and religious affiliation or activity. 3.2. Moral perspectives Nurses were asked whether it was sometimes morally right to comply with patient or family requests to withhold or withdraw treatments. Approximately equal proportions of nurses agreed with the morality of such actions (68% and 66%, respectively) suggesting little difference in the way these actions are evaluated. The remaining responses were fairly evenly split between nurses who felt withholding or withdrawing treatments
was morally wrong (16% and 19%, respectively) and those who were uncertain (16% and 15%, respectively). If however, the order to withhold or withdraw treatment was written by a physician approximately three quarters of those who were uncertain, or thought it morally wrong, indicated that their opinion on the morality of these actions would change. The fewer the number of years in practice, the more likely the nurses were to believe it was sometimes morally right to withhold (p=0.002) or withdraw (p=0.05) treatments. Nurses who described themselves as regularly religiously active were less likely to support the moral rightness of withholding (p=0.04) or withdrawing (p=0.008) of treatments compared to those who were not regularly religiously active. 3.3. Qualitative data About 35% of nurses provided comments of varying length that were usable for qualitative analysis.
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Consistent with the quantitative data, results of the content analysis of written comments indicated that respondents used the terms withhold and withdraw interchangeably or differed only slightly in their answers to these questions, therefore these findings are presented together. The first category of comments related to issues around decision-making in the withholding or withdrawing of care. Three different positions were described by the respondents; these were labeled ‘subordinate,’ ‘collaborative’ and ‘independent’ by the authors. Those holding the subordinate perspective espoused the view that decisions to withhold or withdraw treatment should only ever be made by a physician and cited knowledge of condition, prognosis and legal responsibilities as their rationale. For example, ‘‘Physicians have greater knowledge to assess patient condition and legal responsibility’’ and ‘‘Decisions are NEVER nurses to make.’’ A second group of nurses indicated these decisions should be made collaboratively, as a team. For example, it was suggested that conferences including family members, physicians, nursing staff should be held before decisions are made. Moreover, the importance of patient participation where possible was stressed: ‘‘Withdrawing/withholding is something that should not be a decision made by one person. It should be dealt with between the patient, the family, physician and nursing staff and if necessary, the ethics committee.’’ A final group of nurses presented a perspective of independence, and indicated that they are willing to act directly on patient or family requests, with subsequent notification or involvement of the doctor. For example, ‘‘I have withheld and withdrawn treatments when it is a patient or family request and have discussed it with the doctor after the fact.’’ Within this category of responses the importance of advocating for families and patients was noted and the nurse’s role in facilitating the decision making-process for patients and families was discussed. A second category of comments described nurses’ observations and experiences with conflicts around decisions to withhold/withdraw treatments. Nurses described their experience with apparently conflicting desires of patients and family members: ‘‘Usually families asked to continue and give aggressive treatment against patient wishes.’’ When describing such conflicts, some indicated that the expressed wishes of the patient should take precedence. Comments also described nurse’s frustration with a perceived reluctance by physicians to withhold/withdraw treatments following patient requests. For example, ‘‘. . .most doctors are cowards when a humanitarian act is requested by patients and family members to hasten death.’’ Perceived legal barriers to complying were also a source of frustration: ‘‘We as professionals are patient advocates. . .we are taught to respect these wishes, but legally we cannot’’ and ‘‘it may be morally right to comply. . .but legally unwise.’’
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Also described were personal conflicts experienced by nurses in following through with patient/family requests and physicians’ orders when these actions are at odds with their own beliefs: ‘‘Orders must be written and if I feel there is a problem, I will discuss my concerns with the physician. If I am not comfortable with this request, I will not do it.’’ The final category of comments consisted of nurses’ reflections on the morality of withholding/withdrawing treatment. Arguments consistent with principle-based ethics were observed. The moral ‘‘rightness’’ of these actions was justified by a firm belief in patient autonomy. For example, ‘‘Patients have the ABSOLUTE right to choose for themselves what treatments they will or will not accept.’’ Beneficence and nonmaleficence were illustrated by comments pertaining to the morality of futile treatment prolonging patient suffering: ‘‘If death is imminent, to prolong suffering is cruel and unnecessary.’’ Others indicated that withholding/withdrawing treatments may be a means of improving the quality of remaining life as the treatments themselves may be uncomfortable: a hastened death was thus viewed as a side effect of making patients more comfortable: ‘‘. . .they wanted to stop feeling ill due to the treatment. They knew it would hasten their death but saw that as a side effect to improving their quality of life however brief that may be.’’ Consistent with the quantitative data, a few respondents said the moral rightness of these actions was dependent upon the agreement of the attending physician: ‘‘Morally it would be wrong to withhold treatment without consent of the doc.’’
4. Discussion Findings of this study suggest that many Alberta nurses have received requests from patients, family members and physicians to withhold or withdraw treatments. The vast majority of responding nurses supported patients’ rights to have treatments withheld and withdrawn, however, they were less certain as to whether it is morally right to comply with requests to forego treatments or have treatments withdrawn. Nurses’ beliefs about the morality of their compliance was influenced by their views on patient autonomy, their conviction about the avoidance and relief of suffering, their degree of religious activity, the number of years they had been in practice and their perceived role in the decision-making process. Nurses’ actions depended in part upon who made the request, legal considerations, their number of years in practice and their own moral convictions. Certainty about the rightness or wrongness of their actions was not absolute and changed if a physician’s order was given for withholding/withdrawing treatments.
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Although the response rate of this survey was relatively low, it was consistent with others in this area, and was not unexpected considering the sensitive nature of the topic. It does however justify caution in the interpretation of the results as the responses of this sample of nurses cannot be taken to reflect the beliefs or actions of Alberta nurses as a whole. The focus of this survey was to gather relatively objective information on nurses’ beliefs and actual practices in withholding and withdrawing treatments and it is limited by the fact situational or contextual factors were not systematically explored. The survey findings were strengthened by the qualitative data, which allowed nurses to clarify and expand their views if they so desired. The proportion of nurses having received withholding/withdrawing requests from patients is similar to proportions reported in earlier surveys (Kuhse and Singer, 1993; Aranda and O’Conner, 1995). The proportion of nurses who had complied with patient requests to have treatments withheld or withdrawn independent of physicians’ orders so was somewhat higher than the previous surveys. This may be due to the rising amount of responsibility and autonomy that has been described in nurses’ roles in the contemporary healthcare system (Wurzbach, 1995). An interesting finding was that, with one exception, there was very little distinction overall between nurses’ responses to parallel questions regarding withholding versus withdrawing treatments. This was apparent both within the structured questionnaire and within the written comments. Although the terms were not explicitly defined in the questionnaire, the fact questions were asked separately, as previously described, should have highlighted their implied difference to the respondents. The assumption that nurses were knowledgeable of the difference is supported by the one question where responses were significantly different in which nurses reported receiving more requests from patients to withhold versus withdraw treatments. Similarity of the remaining responses would therefore be due to nurses encountering situations involving withholding and withdrawing of treatments with comparable frequency. Conversely, it could be that the overall similarity of responses is attributable to the distinction between withdrawing and withholding not being an important one for respondents. If a treatment cannot benefit a patient, it may not matter if the treatment is not given in the first place, or if it is removed. With either action, the outcome for the patient would be the same and therefore the moral/professional evaluation and subsequent action for the nurse would also be the same. Whether a moral distinction exists between withholding and withdrawing of treatments has been considered in greater detail by others (Beauchamp and Childress, 1994) Another interesting finding from this study relates to the apparent inconsistency between the proportion of
nurses indicating patients should legally be able to request that life sustaining treatments be limited (99%), and the proportion believing it would be sometimes morally right for nurses to comply with such requests (67%). A possible explanation for this discrepancy may be that while nurses condone such an autonomous request from patients, they are less able to condone nurses independently complying with this request. Consistent with this observation, we found that belief in the morality of withholding and withdrawing treatment changed depending on whether or not physicians’ orders existed. This shift in moral evaluation might be a reflection of the collaborative role adopted by some nurses. As such, it may illustrate a need for shared responsibility in complying with patient requests and/or of a need to validate that compliance with the patient’s request was an appropriate course of action based on the physician’s prognostic evaluation of the patient’s condition. Similarly, this change in moral judgement may be interpreted more strictly in the context of the subordinate role described by other respondents in which nurses described that such decisions were not theirs to make. Thus while nurses were able to personally, morally condone patients’ requests, they were unable professionally to comply unless a physicians’ order existed. In addition to role responsibilities, this shift in moral judgement may relate to perceived moral accountability for the action. It has been reported that when the decision to withhold or withdraw has been made by one party (physician, family), the party that carries out the decision (often a nurse) may do so without accepting any responsibility for the action (Reckling, 1995). This latter hypothesis is supported in part by qualitative comments made in the present study which suggested nurses would carry out the action if directed to by a physician, as the physician was then the one who was legally accountable. Taken one step further, the nurses may perceive the physician to be morally accountable then also. While most survey respondents indicated they complied with patient or family requests after receiving a physician’s order, a significant proportion (20%) indicated they took independent action following patient or family requests. From this survey, it is not possible to discern whether or not these actions would have been in conflict with physician judgement; however they clearly reflect a breakdown in communication between those involved in the end-of-life decision making process. Taken together, the results of this study demonstrate that patients and families encounter different attitudes regarding the end-of-life treatment options patients have, and that the care the patient ultimately receives may vary according to the individual moral values of a particular nurse. The fact that individual characteristics of healthcare professionals may influence decisions to withhold or withdraw treatments has been reported previously (Cook et al., 1995). These findings underscore
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the importance of institutions developing mechanisms in the form of guidelines, policies or formal ethics consultation services, to ensure end-of-life decisions are made in a consistent, respectful and open manner. Further, they suggest that monitoring and evaluation of the end-of-life treatment decision making may be warranted. In a statement recently published jointly by the Canadian Healthcare Association, the Canadian Medical Association, the Canadian Nurses Association and the Catholic Health Association of Canada (1999), consensus among the person receiving care and all others involved in his or her care is the ideal in making health care decisions. Recognizing that ethical conflicts arise when ‘‘people of good will are uncertain of, or disagree about the right thing to do when someone’s life, health or well-being is threatened by disease of illness,’’ the statement offers excellent guidance for policy development in the prevention and resolution of ethical conflicts regarding the appropriateness of initiating, continuing, withholding or withdrawing care or treatment.
5. Conclusion The decision to withhold or withdraw treatment from a terminally or incurably ill patient is a serious one. The results of this survey indicate this is a weighty issue faced by many nurses practicing in Alberta and that the ‘right’ course of action is not always clear. Consensus among all members of the health care team, family, and when possible the patient, regarding the goals of care and treatment is essential to the preservation of integrity in therapeutic relationships and to the provision of high quality end-of-life care. Achieving consensus may be facilitated in part by clear institutional guidelines and clarifications in the Criminal Code.
References Aranda, S., O’Connor, M., 1995. Euthanasia, nursing and care of the dying: rethinking Kuhse and Singer. Australian Nursing Journal 3 (2), 18–21. Berky, P.S., 1998. Withholding end-of-life medical nutrition and hydration: an ethically sound decision or an inhumane practice? Maryland Nurse 17 (8), 8–9. Beauchamp, T.L., Childress, J.F., 1994. Principles of Biomedical Ethics, 4th ed.. Oxford University Press, Toronto.
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Breier, S.J., 2000. Ethics and total parenteral nutrition: issues for intravenous nurse professionals. Journal of Intravenous Nursing 23 (1), 52–77. Burck, R., 1996. Feeding, withdrawing and withholding: ethical perspectives. Nutrition in Clinical Practice 11 (6), 243–253. Canadian Healthcare Association, Canadian Medical Association, Canadian Nurses Association, Catholic Health Association of Canada, 1999. Joint statement on preventing and resolving ethical conflicts involving health care providers and persons receiving care. Ottawa: author. Canadian Nurses Association, 1997. Code of ethics for nursing. Ottawa: author. Cook, D.J., Guyatt, G.H., Jaeschke, R., Reeve, J., Spanier, A., King, D., et al., 1995. Determinants in Canadian health care workers of the decision to withdraw life support from the critically ill. Canadian critical care trials group. Journal of the American Medical Association 273 (9), 703–708. Dalinis, P., Henkelman, W.J., 1996. Withdrawal of treatment: ethical issues. Nurse Manager 27(9), 32AA-BB, DD. Day, L., Drought, T., Davis, A.J., 1995. Principle-based ethics and nurses’ attitudes toward artificial feeding. Journal of Advanced Nursing 21 (2), 295–298. Fish, A., Singer, P.A., 1992. Nancy B.: the Criminal Code and decisions to forgo life-sustaining treatment. Canadian Medical Association Journal 47 (5), 637–742. Goodhall, L., 1997. Tube feeding dilemmas: can artificial nutrition and hydration be legally or ethically withheld or withdrawn? Journal of Advanced Nursing 25 (2), 217–222. Government of Alberta, 1997. Personal Directives Act, Revised Act, Revised Statutes of Alberta. Chapter P-4.03, as enacted in 1997. Government of Canada, Criminal Code, Revised Statutes of Canada, 1985. Chapter C-34, Section 14, 45, 215–217, 219, 220, 222–240. Iserson, K.V., 1996. Withholding and withdrawing medical treatment: an emergency medicine perspective. Annals of Emergency Medicine 28 (1), 51–54. Kuhse, H., Singer, P., 1993. Voluntary euthanasia and the nurse: an Australian survey. International Journal of Nursing Studies 30 (4), 311–322. Lemmens, T., 1996. Towards the right to be killed? Treatment refusal, assisted suicide and euthanasia in the United States and Canada. British Medical Bulletin 52 (2), 341–353. Luce, J.M., 1997. Withholding and withdrawal of life support from critically ill patients (Commentary). Western Journal of Medicine 167 (6), 411–416. Reckling, J.B., 1995. Withholding and withdrawing lifesustaining treatment. Medsurg Nursing 4 (4), 327–330. Verhoef, M.J., Kinsella, T.D., 1993. The Alberta euthanasia survey: Part II. Physicians’ opinions about the medicalization and reporting of active euthanasia. Canadian Medical Association Journal 148 (11), 1929–1933. Wurzbach, M.E., 1995. Long-term nurses’ moral convictions. Journal of Advanced Nursing 21 (6), 1059–1064.
Treatment refusal: the beliefs and experiences of Alberta nurses Ursula Dawe, Marja J. Verhoef *, Stacey A. Page Department of Community Health Sciences, Faculty of Medicine, University of Calgary, 3330 Hospital Drive NW, Calgary, AB, Canada T2N 4NI Received 27 July 2000; received in revised form 20 November 2000; accepted 6 December 2000
Abstract This study explored the beliefs and experiences of Alberta nurses concerning withholding and withdrawal of treatments from incurably or terminally ill patients. A mailed survey containing closed and open-ended questions was used to gather data. A response rate of 47% was achieved. The majority of respondents believed patients should legally be able to request that treatments be withheld (98%) or withdrawn (97%). More than half of the respondents had received requests from patients, families or physicians to withhold or withdraw treatments. Occasionally, nurses acted without physicians’ knowledge. Three different positions with respect to decision-making in withholding and withdrawing of care, ‘subordinate’, ‘collaborative’ and ‘independent’, emerged from nurses’ written comments on the questionnaire. Consensus among health care practitioners and consumers is critical to end-of-life decision-making. # 2001 Elsevier Science Ltd. All rights reserved. Keywords: Withholding/withdrawing treatment; Nursing ethics
1. Introduction Nurses are frequently the primary care givers to the terminally or incurably ill, providing constant care and attendance. Through this role, nurses often form close relationships with patients and their families, developing an intimate appreciation of their circumstances. On occasion, nurses may be confronted with situations where patients, families or physicians request that nurses withhold or withdraw life-sustaining treatments. These actions may be followed by the patient’s death as the underlying illness or condition is allowed to run its natural course. Treatments withheld or withdrawn range from basic interventions such as hydration and nutrition through to mechanical ventilation, renal dialysis or cardiopulmonary resuscitation. Requests for withholding or withdrawing treatments may create conflict for nurses’ professional and personal values. Respect for patient autonomy is central in the Code of Ethics for Nursing (Canadian Nurses Association, *Corresponding author. Tel.: +1-403-2207813; fax: +1-4032707307. E-mail address: [email protected] (M.J. Verhoef).
1997). Consistent with this principle, the Canadian Nurses Association (CNA) supports the rights of all competent persons to make informed decisions about their health care and treatment including the right to refuse or discontinue life-sustaining treatments. For nurses, this fundamental respect for autonomy guides patient advocacy and caring. At the same time, the CNA also supports nurses’ rights to decline participation in procedures that are contrary to their professional or personal moral values, in which case care of the patient would be transferred to another nurse who is comfortable with the proposed course of action. In some cases, nurses and other health care professionals may be asked to carry out decisions as written in personal directives. The Personal Directives Act, which came into effect in Alberta in 1997, requires that service providers follow any clear instructions in the personal directive or follow the instructions of a designate (e.g., family member) if one has been named. Health care decisions contained within personal directives, generally pertain to what type of treatment is to be used or discontinued and cannot contain instructions relating to aided suicide, euthanasia, or other actions prohibited by law. Similar to the CNA guidelines, the Act does not
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require the health care professional to carry out instructions in personal directives if such instructions are contrary to the professional’s moral or professional ethics, and again care of the patient would be transferred to another health professional (Government of Alberta, 1996). It has been argued that the Canadian Criminal Code does not provide clear guidance regarding the issues of withholding or withdrawing treatment and there is some debate as to whether it could create criminal liability for health care practitioners in these situations (Fish and Singer, 1992; Lemmens, 1996). Conversely, Canadian law prohibits the administration of treatments without informed consent and thus health care professionals who treat patients without consent are open to criminal charges of battery and/or assault (Government of Canada, 1985). The well publicized case of Nancy. B, in which the 25-year old incurably ill woman sought to have her respiratory support withdrawn illustrates problems inherent with the status quo (Fish and Singer, 1992). Amendments to the Code clarifying these issues have been presented but not adopted, leaving room for continued ambiguity in its interpretation. Parallel cases could arise in common law (i.e., law based on judicial decisions versus statutes) with action of negligence and battery arising. Thus, nurses often face competing obligations when dealing with end-of-life decisions for those in their care: they are responsible to patients and families as care givers and advocates; they have professional responsibilities to physicians and institutions regarding patient care protocols and compliance with medical orders; they are answerable to the legal system; and finally they are accountable to their own value systems and consciences. While many papers have provided theoretical discussions of the issues at hand in the withholding or withdrawing of treatments, or have explored nurses’ and/or other health care providers’ reactions to hypothetical vignettes (e.g., Berky, 1998; Breier, 2000; Burck, 1996; Cook et al., 1995; Dalinis and Henkelman, 1996; Day et al., 1995; Goodhall, 1997; Iserson, 1996; Luce, 1997), little has been reported about nurses’ actual beliefs and experiences regarding the withholding or withdrawing of treatments as only a few studies have investigated these practices/issues. In one of the few studies in literature, a survey of Australian nurses, it was reported that 502/920 (55%) of the respondents who had treated terminally or incurably ill patients had been asked by at least one patient to hasten death (Kuhse and Singer, 1992). Of this proportion, approximately two-thirds received requests to have treatments withheld or withdrawn. One in ten nurses (10%) indicated they had complied with such patient requests without having been asked by a physician to do so: the primary reason given for these actions was respect for the patients’ wishes. In a subsequent replication study
also conducted in Australia, 77% (132/171) of responding palliative care or oncology nurses had been asked by patients to hasten their deaths and that 66% of these requests were to forego life-sustaining treatments. A slightly higher proportion of respondents (16%) indicated they complied with the patient request without having been asked to do so by a physician (Aranda and O’Conner, 1995). Both of these studies must be interpreted with caution, however, given their modest response rates (49% and 45%, respectively). Specific knowledge about Canadian nurses’ beliefs and practices with respect to end-of-life care is important for understanding the nurses’ role in ethical decision making, to raise awareness of the issues and to aid future policy development. This paper describes the beliefs and experiences of Alberta nurses practicing in care settings where withholding and withdrawing treatments are often a part of end-of-life care. Ethical approval was obtained from the Conjoint Health Research Ethics Board at the University of Calgary.
2. Methods The sample consisted of registered nurses in active practice in the province of Alberta. The Alberta Association of Registered Nurses (AARN) assisted by randomly selecting 1000 nurses from its registration database. Eligibility criteria included: employment in general medicine or oncology in a general hospital, with annual hours of work equivalent to at least 75% full time. The list file of names and addresses was delivered to an independent third party contracted by the researchers to distribute the study questionnaires. In this way the identity of participants remained unknown to the researchers. The eight-page questionnaire was composed of items developed specifically for this study, as well as relevant items from similar surveys of Australian nurses (Kuhse and Singer, 1993) and Alberta physicians (Verhoef and Kinsella, 1993). Approximately half the questionnaire contained items pertaining to withholding/withdrawing treatments while the remaining half contained items assessing sociodemographic characteristics and items pertaining to active euthanasia. This paper focuses on the data resulting from the sections on withholding and withdrawal of treatment: the data on active euthanasia will be presented in a future publication. Questions addressing opinions and practices regarding withholding and withdrawing treatments were laid out in a parallel manner in the questionnaire. For example, see Table 1. Other questions assessed whether nurses had been asked by patients, family members and/or physicians to withhold or withdraw treatments and how they responded to these requests. These questions were laid out in a similar manner as the example in Table 1.
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Table 1 Example of questionnaire layout Withholding treatment
Withdrawing treatment
At present, patients can legally request the withholding of life-sustaining measures. What is your opinion about this? & Patients should be able to request withholding of treatments & Patients should not be able to request the withholding of treatments & Uncertain
At present, patients can legally request the withdrawal of life-sustaining measures. What is your opinion about this? & Patients should be able to request withdrawal of treatments & Patients should not be able to request the withdrawal of treatments & Uncertain
Closed and open-ended questions were asked to elicit nurses’ beliefs about, and experiences with these issues. In addition, respondents were invited to write additional comments elaborating on their responses if they so desired. An initial covering letter and questionnaire were mailed to the sample followed by a second questionnaire four weeks later in an effort to maximize the response rate. The questionnaires did not have any identifiers on them to preserve the anonymity of respondents. Continuous variables were summarized using means ( SD) or medians (IQR) as appropriate. Categorical variables were summarized using proportions. The influence of specific respondent characteristics (number of years in practice, religious activity, religious affiliation) on beliefs about morality and on compliance with requests was explored. Responses to questions about withholding treatments were compared to responses about withdrawing treatments. Depending on the level of measurement, Chi squares or t-tests were used to examine these relationships. Written comments were synthesized using a content analysis where the ideas within the narrative were analyzed and recurring themes were identified.
3. Results Four hundred and sixty-six completed, useable surveys were returned to the investigators for a response rate of 47%. Most nurses were female (96%) and educated in Canada (88%); 16% had earned an undergraduate degree. The average age of the sample was 41.4 yr (SD=9.7 yr). Slightly more than one-half of nurses were employed in either Edmonton or Calgary (58%); the remainder worked in other Alberta cities (17%) or in smaller communities throughout the province (25%). The primary work setting for most nurses (90%) was inpatient acute care. The remainder worked in outpatient clinics, cancer centers and long term care facilities. The types of nursing practice most often reported in these care settings were general medicine (81%), and/or palliative care (40%) and/or oncology (26%). The median weekly caseload of patients suffering in the end stages of some terminal illness or incurable
condition was three (IQR 1.5–5). Fifty-five percent indicated their religious affiliation was Protestant, 28% Catholic, 13% unaffiliated and 4% were from other religious groups. Level of religious activity was described as ‘regular’ by 32%, as ‘occasional’ by 34% and as ‘not active’ by 33%. 3.1. General beliefs and practices The majority of respondents felt that patients should legally be able to request life-sustaining treatments be withheld (98%) or withdrawn (97%). Nurses’ experience with patient, family and physician requests to withhold or withdraw treatments is summarized in Tables 2–4. Slight differences in numbers in these Tables (e.g., 280 versus 272 and 185 versus 182 in Table 2), are due to missing data. The majority of responding nurses had been asked by patients, families and/or physicians to withhold or withdraw treatments. Treatments most frequently cited in nurses’ responses to an open-ended question were nutrition, hydration, antibiotics, other medications for managing medical conditions and assisted ventilation. With the exception of patient requests to withhold (60%) versus withdraw (50%) treatments (p=0.003), the pattern of responses comparing withholding to withdrawing treatments were quite similar and did not differ significantly. Having received requests, nurses were more likely to comply with them than not. Compliance with requests did differ however according to who was making the request; nurses were significantly most likely to comply with requests from physicians, followed by family and patients (p50.0001). Of the nurses who had received requests, most had received requests from or on behalf of, several patients (i.e., more than three patients). When the request came from the patient or family members, the results suggest that most nurses would obtain physician approval prior to taking any action. Nevertheless, relatively large proportions (20%) of nurses who had received requests to withhold or withdraw treatments from either patients or family complied without physician involvement in the decision. Nurses complying with patient requests to withhold or withdraw treatments and complying with family requests to withdraw treatments had significantly fewer
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Table 2 Patient requests for withholding or withdrawing treatments Issue
Withhold
Withdraw
Had been asked by a patient to withhold or withdraw treatments
280/466 (60%) 185/272 (68%) 51/182 (28%)
226/452 (50%) 148/221 (67%) 32/146 (22%)
Had complied at least once with patient request to withhold or withdraw treatment Had complied at least once with patient request to withhold or withdraw treatment without physician order
Table 3 Family member requests for withholding or withdrawing treatments Issue
Withhold
Withdraw
Had been asked by a family member to withhold or withdraw patient treatment Had complied at least once with family request to withhold or withdraw treatment Had complied at least once with family request to withhold or withdraw treatment without physician order
253/460 (55%) 183/244 (75%) 38/180 (21%)
232/452 (52%) 151/226 (67%) 28/149 (19%)
Table 4 Physician requests for withholding or withdrawing treatments Issue
Withhold
Withdraw
Had been asked by a physician to withhold or withdraw patient treatment
274/456 (60%) 263/267 (98%)
247/433 (57%) 235/237 (99%)
Had complied at least once with physician request to withhold or withdraw treatment
years of practice experience (p=0.001, 0.005 and 0.03, respectively). Similarly, nurses complying with family requests to withhold treatment tended to have fewer years of practice experience (p=0.07). The number of nurses who did not comply with physician requests to withhold (n=5) or withdraw treatments (n=2) was too small to test meaningfully. No relationships were found between compliance with patient, family or physician request and religious affiliation or activity. 3.2. Moral perspectives Nurses were asked whether it was sometimes morally right to comply with patient or family requests to withhold or withdraw treatments. Approximately equal proportions of nurses agreed with the morality of such actions (68% and 66%, respectively) suggesting little difference in the way these actions are evaluated. The remaining responses were fairly evenly split between nurses who felt withholding or withdrawing treatments
was morally wrong (16% and 19%, respectively) and those who were uncertain (16% and 15%, respectively). If however, the order to withhold or withdraw treatment was written by a physician approximately three quarters of those who were uncertain, or thought it morally wrong, indicated that their opinion on the morality of these actions would change. The fewer the number of years in practice, the more likely the nurses were to believe it was sometimes morally right to withhold (p=0.002) or withdraw (p=0.05) treatments. Nurses who described themselves as regularly religiously active were less likely to support the moral rightness of withholding (p=0.04) or withdrawing (p=0.008) of treatments compared to those who were not regularly religiously active. 3.3. Qualitative data About 35% of nurses provided comments of varying length that were usable for qualitative analysis.
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Consistent with the quantitative data, results of the content analysis of written comments indicated that respondents used the terms withhold and withdraw interchangeably or differed only slightly in their answers to these questions, therefore these findings are presented together. The first category of comments related to issues around decision-making in the withholding or withdrawing of care. Three different positions were described by the respondents; these were labeled ‘subordinate,’ ‘collaborative’ and ‘independent’ by the authors. Those holding the subordinate perspective espoused the view that decisions to withhold or withdraw treatment should only ever be made by a physician and cited knowledge of condition, prognosis and legal responsibilities as their rationale. For example, ‘‘Physicians have greater knowledge to assess patient condition and legal responsibility’’ and ‘‘Decisions are NEVER nurses to make.’’ A second group of nurses indicated these decisions should be made collaboratively, as a team. For example, it was suggested that conferences including family members, physicians, nursing staff should be held before decisions are made. Moreover, the importance of patient participation where possible was stressed: ‘‘Withdrawing/withholding is something that should not be a decision made by one person. It should be dealt with between the patient, the family, physician and nursing staff and if necessary, the ethics committee.’’ A final group of nurses presented a perspective of independence, and indicated that they are willing to act directly on patient or family requests, with subsequent notification or involvement of the doctor. For example, ‘‘I have withheld and withdrawn treatments when it is a patient or family request and have discussed it with the doctor after the fact.’’ Within this category of responses the importance of advocating for families and patients was noted and the nurse’s role in facilitating the decision making-process for patients and families was discussed. A second category of comments described nurses’ observations and experiences with conflicts around decisions to withhold/withdraw treatments. Nurses described their experience with apparently conflicting desires of patients and family members: ‘‘Usually families asked to continue and give aggressive treatment against patient wishes.’’ When describing such conflicts, some indicated that the expressed wishes of the patient should take precedence. Comments also described nurse’s frustration with a perceived reluctance by physicians to withhold/withdraw treatments following patient requests. For example, ‘‘. . .most doctors are cowards when a humanitarian act is requested by patients and family members to hasten death.’’ Perceived legal barriers to complying were also a source of frustration: ‘‘We as professionals are patient advocates. . .we are taught to respect these wishes, but legally we cannot’’ and ‘‘it may be morally right to comply. . .but legally unwise.’’
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Also described were personal conflicts experienced by nurses in following through with patient/family requests and physicians’ orders when these actions are at odds with their own beliefs: ‘‘Orders must be written and if I feel there is a problem, I will discuss my concerns with the physician. If I am not comfortable with this request, I will not do it.’’ The final category of comments consisted of nurses’ reflections on the morality of withholding/withdrawing treatment. Arguments consistent with principle-based ethics were observed. The moral ‘‘rightness’’ of these actions was justified by a firm belief in patient autonomy. For example, ‘‘Patients have the ABSOLUTE right to choose for themselves what treatments they will or will not accept.’’ Beneficence and nonmaleficence were illustrated by comments pertaining to the morality of futile treatment prolonging patient suffering: ‘‘If death is imminent, to prolong suffering is cruel and unnecessary.’’ Others indicated that withholding/withdrawing treatments may be a means of improving the quality of remaining life as the treatments themselves may be uncomfortable: a hastened death was thus viewed as a side effect of making patients more comfortable: ‘‘. . .they wanted to stop feeling ill due to the treatment. They knew it would hasten their death but saw that as a side effect to improving their quality of life however brief that may be.’’ Consistent with the quantitative data, a few respondents said the moral rightness of these actions was dependent upon the agreement of the attending physician: ‘‘Morally it would be wrong to withhold treatment without consent of the doc.’’
4. Discussion Findings of this study suggest that many Alberta nurses have received requests from patients, family members and physicians to withhold or withdraw treatments. The vast majority of responding nurses supported patients’ rights to have treatments withheld and withdrawn, however, they were less certain as to whether it is morally right to comply with requests to forego treatments or have treatments withdrawn. Nurses’ beliefs about the morality of their compliance was influenced by their views on patient autonomy, their conviction about the avoidance and relief of suffering, their degree of religious activity, the number of years they had been in practice and their perceived role in the decision-making process. Nurses’ actions depended in part upon who made the request, legal considerations, their number of years in practice and their own moral convictions. Certainty about the rightness or wrongness of their actions was not absolute and changed if a physician’s order was given for withholding/withdrawing treatments.
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Although the response rate of this survey was relatively low, it was consistent with others in this area, and was not unexpected considering the sensitive nature of the topic. It does however justify caution in the interpretation of the results as the responses of this sample of nurses cannot be taken to reflect the beliefs or actions of Alberta nurses as a whole. The focus of this survey was to gather relatively objective information on nurses’ beliefs and actual practices in withholding and withdrawing treatments and it is limited by the fact situational or contextual factors were not systematically explored. The survey findings were strengthened by the qualitative data, which allowed nurses to clarify and expand their views if they so desired. The proportion of nurses having received withholding/withdrawing requests from patients is similar to proportions reported in earlier surveys (Kuhse and Singer, 1993; Aranda and O’Conner, 1995). The proportion of nurses who had complied with patient requests to have treatments withheld or withdrawn independent of physicians’ orders so was somewhat higher than the previous surveys. This may be due to the rising amount of responsibility and autonomy that has been described in nurses’ roles in the contemporary healthcare system (Wurzbach, 1995). An interesting finding was that, with one exception, there was very little distinction overall between nurses’ responses to parallel questions regarding withholding versus withdrawing treatments. This was apparent both within the structured questionnaire and within the written comments. Although the terms were not explicitly defined in the questionnaire, the fact questions were asked separately, as previously described, should have highlighted their implied difference to the respondents. The assumption that nurses were knowledgeable of the difference is supported by the one question where responses were significantly different in which nurses reported receiving more requests from patients to withhold versus withdraw treatments. Similarity of the remaining responses would therefore be due to nurses encountering situations involving withholding and withdrawing of treatments with comparable frequency. Conversely, it could be that the overall similarity of responses is attributable to the distinction between withdrawing and withholding not being an important one for respondents. If a treatment cannot benefit a patient, it may not matter if the treatment is not given in the first place, or if it is removed. With either action, the outcome for the patient would be the same and therefore the moral/professional evaluation and subsequent action for the nurse would also be the same. Whether a moral distinction exists between withholding and withdrawing of treatments has been considered in greater detail by others (Beauchamp and Childress, 1994) Another interesting finding from this study relates to the apparent inconsistency between the proportion of
nurses indicating patients should legally be able to request that life sustaining treatments be limited (99%), and the proportion believing it would be sometimes morally right for nurses to comply with such requests (67%). A possible explanation for this discrepancy may be that while nurses condone such an autonomous request from patients, they are less able to condone nurses independently complying with this request. Consistent with this observation, we found that belief in the morality of withholding and withdrawing treatment changed depending on whether or not physicians’ orders existed. This shift in moral evaluation might be a reflection of the collaborative role adopted by some nurses. As such, it may illustrate a need for shared responsibility in complying with patient requests and/or of a need to validate that compliance with the patient’s request was an appropriate course of action based on the physician’s prognostic evaluation of the patient’s condition. Similarly, this change in moral judgement may be interpreted more strictly in the context of the subordinate role described by other respondents in which nurses described that such decisions were not theirs to make. Thus while nurses were able to personally, morally condone patients’ requests, they were unable professionally to comply unless a physicians’ order existed. In addition to role responsibilities, this shift in moral judgement may relate to perceived moral accountability for the action. It has been reported that when the decision to withhold or withdraw has been made by one party (physician, family), the party that carries out the decision (often a nurse) may do so without accepting any responsibility for the action (Reckling, 1995). This latter hypothesis is supported in part by qualitative comments made in the present study which suggested nurses would carry out the action if directed to by a physician, as the physician was then the one who was legally accountable. Taken one step further, the nurses may perceive the physician to be morally accountable then also. While most survey respondents indicated they complied with patient or family requests after receiving a physician’s order, a significant proportion (20%) indicated they took independent action following patient or family requests. From this survey, it is not possible to discern whether or not these actions would have been in conflict with physician judgement; however they clearly reflect a breakdown in communication between those involved in the end-of-life decision making process. Taken together, the results of this study demonstrate that patients and families encounter different attitudes regarding the end-of-life treatment options patients have, and that the care the patient ultimately receives may vary according to the individual moral values of a particular nurse. The fact that individual characteristics of healthcare professionals may influence decisions to withhold or withdraw treatments has been reported previously (Cook et al., 1995). These findings underscore
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the importance of institutions developing mechanisms in the form of guidelines, policies or formal ethics consultation services, to ensure end-of-life decisions are made in a consistent, respectful and open manner. Further, they suggest that monitoring and evaluation of the end-of-life treatment decision making may be warranted. In a statement recently published jointly by the Canadian Healthcare Association, the Canadian Medical Association, the Canadian Nurses Association and the Catholic Health Association of Canada (1999), consensus among the person receiving care and all others involved in his or her care is the ideal in making health care decisions. Recognizing that ethical conflicts arise when ‘‘people of good will are uncertain of, or disagree about the right thing to do when someone’s life, health or well-being is threatened by disease of illness,’’ the statement offers excellent guidance for policy development in the prevention and resolution of ethical conflicts regarding the appropriateness of initiating, continuing, withholding or withdrawing care or treatment.
5. Conclusion The decision to withhold or withdraw treatment from a terminally or incurably ill patient is a serious one. The results of this survey indicate this is a weighty issue faced by many nurses practicing in Alberta and that the ‘right’ course of action is not always clear. Consensus among all members of the health care team, family, and when possible the patient, regarding the goals of care and treatment is essential to the preservation of integrity in therapeutic relationships and to the provision of high quality end-of-life care. Achieving consensus may be facilitated in part by clear institutional guidelines and clarifications in the Criminal Code.
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