Hugo Rios
6
stYear Medical Student at Abel Salazar Biomedical Institute – Oporto
University/Oporto Hospital Center, Portugal
E-mail: [email protected]
Largo Prof. Abel Salazar, 2, 4099-003 Oporto, Portugal
Paulo Maia
Department of Intensive Care, Oporto Hospital Center, Oporto, Portugal
Mario Baras
The Hebrew University – Hadassah School of Public Health, Hadassah Medical Center,
Jerusalem, Israel
Charles L. Sprung - ETHICATT Study Group
Department of Anesthesiology and Critical Care Medicine, Hadassah Hebrew
University Medical Center, Jerusalem, Israel
The artificial nutrition and hydration in
critical patients: the decision making
Hugo Rios, Paulo Maia, Mario Baras, Charles L. Sprung
Mestrado Integrado em Medicina ICBAS-UP/CHP-EPE
Ano Lectivo 2009/2010
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Abstract
Objective: The decision about withholding or withdrawing artificial nutrition and hydration should regard
wishes and values of the patient in a complex process involving patients, families and the health care team.
Methods: The ETHICATT questionnaire was answered by physicians and nurses working in ICUs,
patients who survived ICU and families of ICU patients in six European countries. Responses from
physicians and nurses regarding three hypothetical case scenarios of withholding or withdrawing artificial nutrition and IV fluids were analyzed: when the patient was alone without family, the family insisted everything to be done and the family insisted to let patient die.
Results: Questionnaires were completed by 528 of 895 physicians (59%) and 629 of 1,160 nurses (54%).
In the first case scenario, overall answers were against both withholding or withdrawing nutrition and fluids. We found significant differences concerning factors like medical specialty, religion and region. In the two other case scenarios, attitudes tend to follow the same direction of families wishes.
Conclusions: The present study evaluated determining factors in the decision making about artificial
nutrition and hydration. In the absence of the family, determinants to the decision are religion and region. The tendency observed in the other case scenarios showed that family has a major influence. This is in accordance with a worldwide revision of laws and ethical codes about decision in the case of incompetent patient, with emphasis to the principle of autonomy. The divergence in the decision making reflects the multiple factors involved around all people.
Keywords
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Introduction
Humans require nutrients and fluids to live. Eating and drinking is a behavior with the goal of satisfying these basic needs modulated by complex neurohormonal networks. This behavior is shaped by several influences like social, cultural, economic, religion, media, group identity and others factors. People eat in a socially normative way (i.e., through the mouth) and with social normative tools (e.g., knives and forks) [1].
Artificial nutrition and hydration (ANH) are not socially normative and represent medical treatments that allow a person to receive nutrition and hydration when they are no longer able to take them by mouth [2]. General but not universal agreement has established ANH as medical treatments that patients or their surrogates may accept or refuse as any other treatment decisions based on the potential benefits and risks of the treatment and the religious and cultural beliefs of the patients or surrogates [3]. The ethics manual of the American College of Physicians state “Artificial administration of nutrition and fluids is a life-prolonging treatment. As such, it is subject to the same principles for decisions as other treatments” [4]. The American Medical Association (AMA) has stated that “Life-sustaining treatment may include, but is not limited to, mechanical ventilation, renal dialysis, chemotherapy, antibiotics, and artificial nutrition and hydration.”[5] On the other hand, some physicians consider medically provided nutrition and hydration a basic human need, and they fear subjecting the patient to a painful death through starvation and dehydration [1, 6].
ANH is usually administered through a nasogastric tube, a gastrotomy or jejunostomy tube (Enteral Nutrition) [3]. ANH may also be administered parenterally through peripheral or central venous access and hydration can also be provided by subcutaneous infusion [3]. Professional skills and training are necessary to insert the tube, to make decisions about how much and what type of nutrition to give and to monitor for side effects. The enjoyment of taste and the texture of food and liquids does not occur with ANH [2].
There are also adverse effects of ANH. These include for tube feeding diarrhea, nausea, vomiting, esophageal perforation and increased risk of aspiration pneumonia and for intravenous infusions infections, phlebitis and electrolyte imbalances [3].
For instance, patients with dementia who receive ANH through a gastrotomy tube are likely to be physically restrained and have increased risk of problems associated with tube-feeding removal by the patient [7]. In addition, when a patient’s renal function declines in the last days of life, ANH may cause choking due to increased oral and pulmonary secretions, dyspnea due to pulmonary edema and abdominal discomfort due to ascites [3].
There are several medical conditions that can require ANH: Persistent Vegetative State (PVS), dementia, terminal cancer patients, pos-operative of some GI tract surgeries, degenerative neurologic diseases like amyotrophic lateral sclerosis and many others.
The Multi-Society Task Force on PVS defined vegetative state, in 1994, as a clinical condition of complete unawarenessof the self and the environment, accompanied by sleep-wake cycles,with either complete or partial preservation of hypothalamicand brain-stem autonomic functions. If repeated
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examinations yield no evidence of sustained, reproducible, purposeful, or voluntary behavioral response to visual, auditory, tactile, or noxious stimuli, a diagnosis of vegetative state is established. [8]
Other conditions of severe neurologic disability or alteredconsciousness include coma, brain death, locked-in syndromeand dementia.
An important condition to the differential diagnosis of PVS is “minimally conscious state”, which describes patients that show inconsistent but reproducible signs of awareness, including the ability to follow commands, but remain unable to communicate interactively. The main goals of the differential diagnosis are to determine whether the patient retains the capacity for a purposeful response to stimulation, although inconsistent, and transform any available response into a form of reproducible communication by intervention. The diagnosis approach is complex and as a high rate of diagnostic errors (approximately 40%) [8].
A recent study, which used functional magnetic resonance imaging (MRI) to assess brain responses in PVS and minimally conscious state patients, shown that a small proportion of patients in these states have brain activation reflecting some awareness and cognition. This finding can change the diagnostic approach of the disorders of consciousness. [9]
The decision process of withholding or withdrawing involves physicians, nurses, patients and families, sometimes even the courts. The medical team has the responsibility to give all relevant information to the patient or surrogate (when the patient is incapable to make decisions).
There should be discussion about medical prognosis; quality of life; potential benefits of the treatment (outweighing the potential discomforts) and patient wishes in regard to the use of life-sustaining treatment. In most cases, this decision is responsibility of the surrogate, which is determined by the hierarchy present in the respective country law.
The physicians can assume four distinct roles during this process [10]. In the informative role, physicians give all information to the surrogate, which decides alone without deliberations or recommendations of the physicians. In the facilitative role, physicians try conjugate all information and discuss with the surrogate about the wishes, values, religiosity and the different points of view in all process, not giving direct recommendation. This makes the difference to the collaborative role, in which is given a recommendation. In the directive role, physicians assume complete control over the decision, offering minimal information and making a treatment decision independently.
Although some physicians use only one approach others adopt multiple roles during the same conference, which means that they change roles based on unspoken cues perceived from surrogates during the conversation. In some situations the families explicitly requested more guidance from physicians, which in 45% of the conferences explicitly expressed support for the family’s ultimate decision [10]. However, the major problem arouses if the physician doesn’t ask the surrogate which role he/she desires in the decision process. This issue can create serious problems of communication. The important social component of feeding influences the perspective of the families about withholding or withdrawing ANH, comparing with other life-sustaining treatments like mechanical ventilation.
In the last few years, some cases of PVS claim public attention with media and politics involvement.
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The Terri Schiavo case [11, 12] and more recently the Eluana Englaro [13, 14] case brought to public discussion the concept of autonomy, capacity, competence or incompetence to give consent, “best interest” of the patient and the general consideration that ANH is a medical treatment. In the cases of patients kept alive with ANH is more usual being families ask to withdraw than the medical team [15]. For some people, it is more acceptable to withholding a treatment than to withdrawing it. Probably this happens because families feel that withdrawing the treatment will allow the patient to die. However, ethical and legal reasoning don’t support this distinction [3].
There are important differences between countries on the role of the physicians and families in the decision process. The major concern should be respect to patient’s wishes and values through a conference between the medical team and the families in order to achieve these goals in the best interest of the patient. However, when both have little strong evidence about the patient wishes the decision becomes even more hard and painful. The decision should respect the expressed patient wishes when existing a strong and confidence evidence of that (autonomy).
The two cited cases above involve many years of judicial processes with interference of the government, legislators and religious leaders. As a result, many countries decided to review the laws and ethical recommendations. The implementation of advance directives like living wills can give a strong base of information about patient’s wishes. However adhesion was poor until now.
The present study was performed to evaluate the attitudes of ICU physicians and nurses regarding withholding and withdrawing artificial nutrition and intravenous fluids in incompetent ICU patients with little likelihood of survival.
Methods
The ETHICATT study was performed in six European countries (Czech Republic, Israel, The Netherlands, Portugal, Sweden and the United Kingdom). Questionnaires were completed by physicians and nurses working in ICUs, patients who survived ICU and families of surviving and non-surviving ICU patients. For the purposes of this study only the answers of physicians and nurses were used. A case scenario was presented of an ICU patient with little likelihood of survival and incompetent to make health care decisions. Questions pertaining to withholding or withdrawing artificial nutrition and intravenous fluids were asked for three hypothetical scenarios: the patient was alone without family, the family insisted everything be done and the family insisted to let patient die. Questionnaire development, reliability and validity and translation were previously published [16]. Ethics Committee approval included informed consent from respondents or a waiver of informed consent.
The attitudes of physicians and nurses were compared by the Chi square and Fisher’s exact tests for the following variables: age, sex, marital status, religion, religiosity, years practicing in ICU, special training in ICU, hospital practice (academic or non-academic; public or private), specialty in medicine and region (Northern– Sweden, United Kingdom and The Netherlands; Southern – Czech Republic, Israel and Portugal). The McNemar’s Test was used to compare the attitudes of the same subject concerning the first case scenario.
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Results
Questionnaires were completed by 528 of 895 physicians (59%) and 629 of 1,160 nurses (54%). Physicians and nurses from 142 hospitals responded. The physicians included 300 senior physicians (64%) and 166 who were in training (36%); 222 had practiced for 10 years or more, and 259 for less than 10 years [16].
In the first case scenario where the incompetent ICU patient has little likelihood of survival and no family, more physicians and nurses thought was that fluids should not be withheld or withdrawn [785 (72%) and 861 (81%) than nutrition should not be withheld or withdrawn [565 (52%) and 600 (56%)] (Table 1).
Table 1 Case scenario: If the patient has no family
Physicians Nurses Total Respondents
Withholding fluids YES 159 31% 151 26% 310 28%
NO 352 69% 433 74% 785 72%
Withdrawing fluids YES 88 18% 120 21% 208 20%
NO 415 83% 446 79% 861 81%
Withholding nutrition YES 260 56% 254 44% 514 48%
NO 245 49% 320 56% 565 52%
Withdrawing nutrition YES 225 45% 241 43% 466 44%
NO 279 55% 321 57% 600 56%
Demographic factors like age, gender and marital status didn’t show potential influence over attitudes of health care professionals.
There was no difference in responses from professionals in public and private practice for all questions. Medical specialty showed some influence in attitudes, with internal medicine physicians more willing to withhold [47 (39%)] and withdraw fluids [41 (35%)] and nutrition [71 (59%) and 65 (54%)] compared to anesthesiologists [fluids - 95 (29%) and 38 (12%); nutrition - 169 (53%) and 141 (44%)] and surgeons [fluids - 1 (6%) and 1 (6%); nutrition - 5 (28%) and 5 (28%)], p < 0.05.
Responses had meaningful differences based on the religion of the professional. Respondents with religious affiliations were more frequently against withholding and withdrawing fluids, particularly Jewish physicians and nurses (93%). On the other hand, there were different positions about nutrition. While Protestants favored withholding and withdrawing nutrition, and Catholic respondents were against withholding and withdrawing nutrition (Table 2).
Respondents from the Northern and Southern countries were against withholding and withdrawing fluids whereas respondents from the North would withhold and withdraw nutrition but those from the South would not, p < 0.01 (Table 3).
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Table 2 Religion
Catholics Protestants Jewish Atheists Others Total
Withholding fluids YES 93 56 11 25 125 310 34% 21% 7% 31% 38% 28% NO 178 214 136 56 201 785 66% 79% 93% 69% 62% 72% Withdrawing fluids YES 53 53 11 25 66 208 20% 20% 8% 31% 21% 20% NO 209 211 134 55 252 861 80% 80% 92% 69% 79% 80% Withholding nutrition YES 116 165 33 39 161 514 44% 62% 23% 49% 50% 48% NO 150 102 112 40 161 565 56% 38% 77% 51% 50% 52% Withdrawing nutrition YES 96 156 46 40 128 466 36% 60% 32% 51% 40% 44% NO 167 106 98 39 190 600 64% 40% 68% 49% 60% 56% p<0,05 Table 3 Region
North South Total
Withholding fluids YES 150 160 310 24% 34% 28% NO 470 315 785 76% 66% 72% Withdrawing fluids YES 157 51 208 26% 11% 20% NO 451 410 861 74% 89% 80% Withholding nutrition YES 343 171 514 56% 37% 48% NO 272 293 565 44% 63% 52% Withdrawing nutrition YES 325 141 466 54% 31% 44% NO 280 320 600 46% 69% 56% p<0,01
Comparison between the attitudes regarding artificial nutrition and hydration with other medical procedures like ventilators and CPR was done. About withholding ventilators, the global answer was no,
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with no statiscally significant difference between the several factors analyzed. On withdrawing ventilators, we saw same similarities with withdrawing fluids and the factors with variability were hospital practice, medical specialty, religion and region.
Attitude about CPR was completely different with all groups of discrimination being favorable to withholding CPR.
Concerning the attitudes of professionals related to withholding vasopressors, the majority was favorable to; of this group, the majority of physicians were also favorable to withholding nutrition [248 (50%) answered YES and 172 (35%) answered NO]. The same questions about fluids showed that between the professionals which answered YES about vasopressors, more than 50% were against withholding fluids [271 (54%) physicians and 287 (51%) nurses answered NO] (p=0,000).
The health care professionals gave more bearing to quality of life instead of the value of life [15]. Between them, they were divided in relation to withholding nutrition [193 (47%) physicians and 191 (42%) nurses answered YES]. However, the majority was against withholding fluids [246 (59%) physicians and 302 (65%) nurses answered NO] (Table 4).
Table 4 Case scenario: If the patient has no family Value of life vs Quality of life
Quality Higher Value Higher Total
Withholding nutrition Physicians YES 193 47% 28 7% 221 54% NO 167 41% 21 5% 188 46% Nurses YES 191 42% 26 6% 217 47% NO 207 45% 35 7% 242 53% Withholding fluids Physicians YES 119 29% 13 3% 132 32% NO 246 59% 36 9% 282 68% Nurses YES 104 22% 14 3% 118 25% NO 302 65% 48 10% 350 75% McNemar Test p=0,00
In the second case scenario - family insists everything to be done, the overall answer was NO in all four hypothesis. Both physicians and nurses were more frequently favorable to do not withhold and withdraw either fluids or nutrition comparing to the first case scenario (Table 5).
In the third case scenario – family insists you let patient die now, we saw a different approach only to nutrition. Concerning this, both physicians and nurses were more willing to withhold [598 (56%)] and withdraw [535 (51%] comparing to the first case scenario [withhold - 514 (48%) and withdraw - 466 (44%)] (Table 6).
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Table 5 Case scenario: If the family insists everything to be done
Physicians Nurses Total Respondents
Withholding fluids YES 101 20% 111 19% 212 20%
NO 406 80% 470 81% 876 81%
Withdrawing fluids YES 39 8% 68 12% 107 10%
NO 458 92% 493 88% 951 90%
Withholding nutrition YES 193 39% 175 31% 368 34%
NO 308 62% 394 69% 702 66%
Withdrawing nutrition YES 135 27% 147 26% 282 27%
NO 362 73% 416 74% 778 73%
Table 6 Case scenario: If the family insists you let patient die now
Physicians Nurses Total Respondents
Withholding fluids YES 184 36% 190 33% 374 35%
NO 323 64% 386 67% 709 66%
Withdrawing fluids YES 126 25% 157 28% 283 27%
NO 370 75% 408 72% 778 73%
Withholding nutrition YES 294 59% 304 54% 598 56%
NO 206 41% 263 46% 469 44%
Withdrawing nutrition YES 259 52% 276 50% 535 51%
NO 241 48% 281 50% 522 49%
Discussion
The present study evaluated ICU physicians and nurses determining the important factors in the decision making about artificial nutrition and hydration. This is the first study comparing attitudes of physicians and nurses of several European countries concerning medical treatments in the end of life like ANH, ventilators or vasopressors through eventual case scenarios.
The study demonstrates that the presence or not of the patient’s families, religion and region were the major factors determining the decisions.
In the first case scenario, all responsibility about the decision belong to the medical team, which means that it is possible to evaluate better the factors concerning the health care professionals decisions.
In the other two case scenarios, it was observed that the large majority answered in the same direction of the family wishes, meaning that family can be a major influence in medical decisions. This statement is stronger concerning withholding or withdrawing nutrition, which means that nutrition and fluids have different approaches independently of the family position.
The evidence of family bearing arises when several Western countries are revising their laws and ethical codes about end of life decisions (proxy, next of kin, and advance directives) [17]. It was a
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paradigm change from a parental approach to the principle of autonomy of the patient, who has the right to assign someone to substitute judgment. For example, in the United Kingdom, it was the physician that made all decisions until 2005, when the Mental Capacity Act created two schemes of proxies (Lasting power of attorney and the Court-appointed deputies). This document represented a significant change in English Law, as for the first time, the next of kin can validly give or refuse consent to medical treatment [18,19]. In the Netherlands, where Euthanasia is legal, the opinion which prevails is from physicians. In case of disagreement, the family has to appeal to Court [20]. In a previous study by Ganz, FD et al [21], over one third (36%) of the families were consulted for end of life decisions. When the families weren’t involved in decision, these physicians argue that when the treatment was not beneficial and hadn’t more to offer, no decision was necessary by the family. A particular aspect of ANH is that despite of being a medical treatment, for families have a symbolic meaning associated with the social behavior of eating. This idea should be present every time that physicians dialogue with families.
There were different approaches to fluids and nutrition. A possible explanation for withholding or withdrawing nutrition more than fluids is the evidence showing that patients in persistent vegetative state die for dehydration and not for starvation after withdrawing ANH, as it described in Terri Schiavo autopsy report [11]. However, in such patients, death occurs quickly from metabolic causes after fluid restriction [17]. As stated in previous studies [23], no difference was observed between withholding and withdrawing.
Concerning religion, the principle of sanctity of life described in the Halacha and the definition of nutrition and fluids as basic needs and not as a medical treatment, is seen in the answers of Jewish in this study [21, 22]. On the other hand, Protestants agree with withholding or withdrawing medical treatments if the clinical situation is irreversible. However, there has diversity of opinion among Protestants between regions [22]. The same situation seems to occur in Catholics, with different point of views beyond the traditional which allow withholding or withdrawing futile therapy [22, 24]. The results observed may represent a change of paradigm with emphasis in the finitude of human life, limitations of the medical science and the principle of autonomy.
The differences described regarding religion are deeply influenced by region[24]. As described in other studies [21, 23], the South showed lower levels of withholding or withdrawing nutrition which means a regional cultural aspect. These differences are also seen concerning the recent revision of laws and ethical codes. The definition of surrogates and autonomy is in public discussion on the Northern countries while in Southern is just in the beginning. These variations were also observed regarding ventilators, while withholding CPR is overall accepted. This means that ANH still is a point of controversy in the health care.
In the end of life, all values account for the decisions of patients, families, physicians and nurses. In Sprung, CL et al [16], the more important factor for health care professionals was quality of life. The analyzed data highlight that maintaining fluids may be a support for quality in the end of life. About nutrition, it’s hard to identify some relationship.
Strengths of the present study include the enrollment of a large number of professionals of several countries, extensive characterization of respondents and well developed and consensual case
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scenarios. Limitations include the fact that attitudes rather than behaviors were evaluated and it’s not possible to analyze the physician’s role in surrogate decision making [10].
In conclusion, there are many others clinical situations beyond PVS wherein decisions about withholding or withdrawing treatments may need to be taken. At present time these difficult situations aren’t as rare as we can imagine and all health care professionals should reflect about this. Some famous cases bring ANH to public discussion. In one side there is an increasingly technological medicine able to replace some organic functions, in the other, our mission is to take care of ill people providing the adequate treatment and to know when this treatment is more harmful than beneficial – the concept of futile treatment. In the complex process of decision between physicians and nurses, we can see the experience of dealing everyday with the human suffering and personal culture, religion, region and education. Nowadays, religion and region seem to be major conditioning factors. In the next decades, the principle of autonomy will be discussed extensively and new laws and guidelines may help physicians and nurses to decide.
Acknowledgements
I would like to thank to Dr Paulo Maia for the total support and availability along this year; to Professor Charles Sprung for the opportunity to work on the ETHICATT Study Group and to Dr Mario Baras for the statistical analysis; to Sofia Rocha, for her fundamental support; finally, to Nuno Delgado and Margarida Coelho for helping me in the linguistic revision of the text.
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