|
From ArmandGirbes.com End of Life Introduction
The end of life Despite the fact that it seems easy to grasp rationally, people die at the end of their life [6]. People do not necessarily have to die in an Intensive Care Unit (ICU) and/or while they are intubated and mechanically ventilated. This may seem self-evident for the reader, but the actual practice is not always easy. In the USA in 20% of all cases, patients die during or immediately after an intensive care admission [7]. Maybe the fact that intensivists are primarily focused on saving the life of a patient plays a role and our acquired knowledge and skills are especially directed at this aspect. It is therefore always tempting as an intensivist to do “everything possible”. From personal experience I know that in life threatening situations it is much easier to do a as lifesaving intended intervention than to withhold an intervention. It is also much easier to explain to a patient or his relatives that “all possible interventions” will be done. But it is not always in the best interest of the patient to undergo every possible intervention. A frequently heard misunderstanding is that doctors should at a given moment decide to stop treatment. In fact doctors should never stop treatment [8]. However, goals of treatment can be changed. The original therapeutic goal of complete cure or life prolongation can be switched to optimal palliative treatment when it becomes clear that the patient has reached the end of his life. In EOL decisions several medical and ethical essentials are present: 1. the clinical data must have a high level of certainty; 2. fundamental bioethical values as i. protecting life, ii. primum non nocere, iii. respecting patient autonomy, social justice and proportionality (e.g. not spending one year department budget on one patient); 3. compliance with existing legislation [9]; 4. treatment should be in accordance with the will of the patient and state of the art. From these fundamentals it becomes clear that a patient has the right to refuse (any) treatment, also ongoing lifesaving/life prolonging treatment.
Confusion in terminology There is a lot of confusion in terminology, which makes discussions even more difficult [10]. Not starting a new modality of treatment is generally called withholding treatment, i.e. withholding a not already used modality of treatment in a specific patient. Terminating an ongoing treatment modality is called withdrawing. I want to emphasize again that a treatment modality can be stopped, but we never stop treating our patients. In the international, mainly Anglophone, literature the term “terminal weaning” is used to indicate withholding or withdrawing mechanical ventilation or another lifesustaining treatment. Weaning is in my view an inappropriate euphemism. Passive euthanasia is a confusing term and is in fact a contradictio in terminis. Euthanasia (Greec: Eu = good, thanein = knock down, kill) is the act of actively ending life of a patient on his repeated and persistent request, without pain and discomfort. For this reason passive euthanasia cannot exist. Frequently, whenever “passive euthanasia” is mentioned, withholding and/or withdrawing of a treatment modality resulting in dying of the patient is meant. The term “passive euthanasia” should be banned for it is incorrect and confusing. However, the term “euthanasia” is also wrongly used for murder, killing without request of the patient or symptomatic palliative care with morphinomimetics and anxiolytics. Symptomatic palliative care with morphinomimetics and anxiolytics may shorten life duration, but the intention is not to shorten life, but to make the naturally occurring dying process as comfortable as possible by treating unbearable pain, anxiety and/or respiratory distress. Of course, this should only be treated when present and the dose should be guided by (anticipated) symptoms. The administration of (high-dose) morphinomimetics (with or without anxiolytics) without the presence of pain or respiratory distress or other treatable symptoms, but with the purpose to hasten the dying process is either euthanasia (if it is on the request of the patient) or murder (if there is no request). An important determinant to identify the patient who is at the end of his life is the presence of futility. A treatment is considered to be futile whenever the maximum quality of life (QoL) that is attainable, is less than the minimum acceptable QoL (for the patient). From the definition of futility it can be derived that medical judgment plays a major role to determine the presence of futility. Whenever it is ascertained that a given medical treatment is futile, the goal of treatment can be shifted to optimal palliation [8].
Determination of futility The question that rises of course is whether, how, and when are we able to know what the maximum QoL will be in a specific patient [11]. In 521 critically-ill patients the presence of futility was determined on a daily basis by both nurses and physicians during 1932 admission days in a Swiss six bed ICU [12]. Only patients with an expected stay of > 24 hours were included. Of all patients judged by the nurses to have futile treatment at any moment, 45 survived more than 6 months. Of these 45 patients only seven reported after 6 months a bad QoL. Physicians appeared to be a less pessimistic and judged 26 patients to have a futile treatment, of whom only two reported a bad QoL after 6 months. Although this study was performed in a relatively small ICU, it can be concluded that nurses and physicians are not very accurate in assessing futility in critically-ill patients. Also from other studies, whether scoring systems were used or not, it becomes clear that clinical judgment is poor in determining futility and not sufficiently accurate for individual cases [13,14]. The American Critical Care Society has summarized items, intended to facilitate making EOL decisions (table 1) [15]. It should however, be taken into consideration that the American starting point is he autonomy of the patient or his proxy. The European starting point focuses primarily on the fact that the medical decision making is more important in EOL decisions. This approach is then again considered to be paternalistic by “the Americans”. Making the decision in an individual patient that he has reached the end of his life is a very difficult one. It is therefore of utmost important to take all the necessary time to collect all important data, to hear all necessary opinions and observe the course of the patient and the response to the treatment. Part of the required data is also information listing and assessing the will of the patient, including information from family and friends. Although it may seem obvious, but one should acknowledge that patients can die only once. So there is in general no need to hurry. In my view a decision to switch from therapeutic treatment with the aim to prolong life to palliative treatment, aiming at a peaceful dying process without suffering, should “never” be taken by one single physician. In the decision process in the ICU, apart from the physicians and surgeons involved, nurses and other paramedics such as physiotherapists should be engaged. Naturally, the intensivist has the final responsibility for the medical treatment. But intensive care is teamwork and the contribution of intensive care nurses and physiotherapists is in my experience of great importance. This involvement will also add to the undivided support of the decision that is borne by the team. In table 1, according to the American Society of Critical Care, it is stated that the fact whether a complication is iatrogenic should play a role in the decision making process. This is a misunderstanding. It cannot be that iatrogenic complications deserve another approach than non-iatrogenic complications. All complications deserve optimal treatment, independent of the cause [8]. And of course the best treatment can be palliative treatment.
Communication with family and beloved After the medical decision has been taken that the goal of therapy “aimed at recovery” has been switched to “aimed at optimal palliation and peaceful dying” the family must be informed about this, if necessary on repeated occasions. This information should not be a surprise for the family, since preceding discussions have taken place explaining the critical life threatening situation. The presence of nurses during all discussions with the family is of high importance. Nurses can give important supplemental information from their trust relationship. The communication with the family requires great communication skills of the intensivist. Aspects as taking time, the incentive behind the decision is not a shortage of ICU beds, and mentioning of the limitations of medicine, should be mentioned in my experience. In families with strong religious backgrounds it is of importance to bring up that it is not the physician who takes the decision that the patient has reached the end of his life and therefore will die. The physician only lets happen what higher – by religion determined – forces have decided. Showing compassion, inform, sincerity, (willingness for) involvement of other medical specialists, offering a second opinion and giving a clear framework for discussion, are keywords for solid fundaments for communication with the family. In my opinion it is undesirable (unethical would be too pronounced) to ask the family to make a decision to switch the goal of therapy to optimal support/guidance of the dying process. This is however, in some countries the standard.
Time and discussion As I underscored above, taking time is an important factor to be able to determine whether a patient has reached the end of his life. After all, if a decision is taken too early it will be a self fulfilling prophecy and the doctor will be “correct”. The study of Frick et al [12] demonstrates that doctors should be very modest with respect to their competence to predict outcome. A recent study from Le Conte et al showed that in 50% of all cases where a life sustaining treatment was withdrawn of withheld in the Emergency Room, the decision was made within 3 hours [16]. In addition, in 30% of all cases the decision was made by a single physician. Also in French intensive cares similar decisions are taken in 12% by a single physician and in 34% the nurses were not involved in the decision process [2]. There are no data on the Dutch situation. With respect to involvement of family, Esteban et al reported that in 28% of all cases of withholding or withdrawing treatment, the family was not involved [3]. In the process of EOL decisions various stakeholders should be involved. Multidisciplinary consultation, where these decisions come up for discussion, belongs to be a component of the organised structural care in an intensive care department. Doctors are generally well in rational reasoning in my experience and underestimate as a rule that emotional factors play an important role in opinion shaping for nurses. In any case, I have significantly underestimated this in past. Understanding and sympathy for these factors and an open spirit for these feelings are important for a successful multidisciplinary approach concerning EOL decisions. Although the (alleged) will of the patient is of primary importance, the direct family becomes involved in the complete decision process as well of course. For this reason discussions with the family need to be planned structurally, and should not take place on an ad hoc basis only.
Misunderstandings concerning EOL decisions and euthanasia Abroad, but also in The Netherlands, many misunderstandings concerning EOL decisions and euthanasia exist, not only among patients and their family/beloved, but also among journalists, politicians and coroners. From conversation with foreign colleagues it has become clear to me that part of the misunderstandings relies on the unique Dutch legislation concerning euthanasia. In our ICU a 52 year old until recently healthy, woman was admitted with severe necrotizing pancreatitis and MODS. Although this disorder is known to have a high mortality, survival chances are substantial. The spouse was informed at different occasions by our physicians and nurses, as could be derived from the case record form. He came to me on Monday with the message that during the weekend the family had discussed extensively the medical situation of his wife. And the family unanimously decided that the ongoing treatment had to be stopped because “she suffered too much”. The good intentions of the spouse were beyond doubt and I have interpreted his request as a request by love. Apart from the fact that it can be concluded that we failed as treating physicians to provide sufficient information, he did in fact a naive proposal for an inappropriate, illegitimate treatment. He also justified and backed up his proposal with a written “euthanasia declaration” of the patient. In this declaration, made with the help of the “Dutch Society for Voluntary End of Life”, she stated her wish to end her life by euthanasia in case of severe and unbearable suffering, also when she is not able anymore to express herself. Apparently, the spouse assumed that this was such a situation. Similar requests are no incidents. It has also been shown repeatedly that misunderstandings occur at the office of the public prosecutor. A 22 year old previously healthy, traumatic quadriplegic patient, due to a C1-C2 fracture, was admitted at the ICU. During many weeks of his admission he stated repeatedly and persistently that he did not want the lifesaving indispensable mechanical ventilation anymore. He grinded his teeth audibly to underscore his wish to stop the mechanical ventilation, knowing that this would result in his death. The family and his friends stated that this was his natural thing to say. After he was informed on all treatment options exhaustively and repeatedly, and the psychiatrist determined that his wish was not the consequence of a depression, a second opinion was asked. No new views were revealed. Therefore, the situation was in fact that a (life-saving) treatment was given to a competent patient against his will. Consequently the mechanical ventilation was gradually stopped and fentanyl was given to prevent and treat any possible dyspnea. The family and friends were at his bedside when he died. Since his death was the consequence of an accident (unnatural death) the public prosecutor was informed. He made clear he wanted to prosecute the doctor (the author of this paper) as a test process, because euthanasia was not reported. In order to escape from prosecution the doctor decided - wrongfully and contre coeur – to report it as euthanasia. Two recent verdicts illustrate in my view the confusion in the Netherlands [17,18]. A doctor who gave a deadly injection to a patient, who was in coma, but without apparent suffering or distress, was convicted without punishment. There was no (previous) request of euthanasia. On the contrary, the patient had declared in the past that she would not want any treatment that could shorten her life. In my view only palliative care was appropriate and probably the patient would have died only some hours or days later. This was in fact a case of killing a patient and not euthanasia. The permissive attitude of the court in this case, which contrasts with the prosecution of a registrar who gave palliative care to a terminal patient in respiratory distress, is incomprehensible for me [18]. The registrar who gave appropriate doses of morphine and midazolam to a patient with a severe CVA in respiratory distress. The patient died some hours later in the presence of the family. Two weeks the registrar was carried away with a shuttered police force vehicle. He stayed 9 days in a prison of 2.5 x 2.5 meters. The public prosecutor demanded 172 days prison sentence. The registrar was, eventually, cleared twice, also after appeal. The misunderstandings abroad are even more important and should deserve the attention of the Dutch. In "The Washington Times" of 26 December 2004 a former republican member of the house of delegates from Georgia writes, inspired by the euthanasia legislation in the The Netherlands: “Were he attempting to escape allied justice today, dr. Joseph Mengele, the Nazi "Angel of Death," would not have make his way to the jungles of Brazil; the Netherlands would probably welcome him with open arms. It's the new "Dutch Treat." In the same paper, expressing his fears of alleged murder of children, he states: “Anyone considering having a child while in the Netherlands, or travelling there with someone whom the Dutch authorities might consider disabled, should think again.” Perhaps it is best not to respond to such publications, probably classified by most doctors as nonsense. However, I think this image of the Netherlands does represent a problem. And the Dutch should try to clarify the actual situation. In contrary to what the BBC thought (they requested an interview on euthanasia in the ICU in view of the Dutch euthanasia legislation), euthanasia plays no role in the ICU.
Conclusions EoL decisions in intensive care patients are a structural part of work of intensivists. Therefore structural anchoring in the management of this decision-making process, where beside several members of the medical team also nurses are involved, is necessary. The doctors should be aware of their limited competence in predicting outcome in individual critically-ill patients. In patients treated for a long time in the ICU, it may be thought that treatment is likely to be futile. However, a recent analysis from our hospital shows that the survival of patients who spent more than 60 days on the ICU, 1-year and 5-year survival was 44 and 33%, respectively [19]. The use of unclear terminology such as "passive euthanasia" must be avoided. Stopping a treatment modality at the request of a will-competent patient or because of futility is no euthanasia. Euthanasia plays no role in the ICU.
Acknowledgement Many discussions with many colleagues concerning this subject were the basis of the given view. I want to thank especially dr. T.S. van der Werf and dr. J.G. Zijlstra, and prof. F. Lemaire for the fruitful discussions. © Copyright by ArmandGirbes.com |
