© Springer International Publishing Switzerland 2017
Benjamin W. Starnes, Manish Mehta and Frank J. Veith (eds.)Ruptured Abdominal Aortic Aneurysm10.1007/978-3-319-23844-9_1919. Ethical Issues Regarding rAAA
(1)
Department of Surgery, Harborview Medical Center, 325 9th Ave, Seattle, WA 98104, USA
(2)
Department of Surgery, University of Washington, Harborview Medical Center, 325 9th Ave, Seattle, WA 98104, USA
Keywords
EthicsBeneficenceNonmaleficenceAutonomyJusticeAdvance directiveSurrogateFamily meetingPalliative careEnd-of-life careKey Points
The fundamental ethical principles that should govern all medical care are beneficence, nonmaleficence, autonomy, and justice.
In modern medicine, especially in the Western world, we have embraced the concept of shared decision-making, or a collaborative process by which patients and their providers make healthcare decisions together.
Timely, clear, compassionate, and ongoing communication between clinicians, nurses, and family members of critically ill patients is of utmost importance.
One of the most important aspects of an effective family conference is taking the time to listen to the family.
Palliative care services may be offered to patients and families dealing with critical illness at any time and is not limited to end-of-life care.
It is our duty as physicians to learn to recognize patients who are going to die despite aggressive medical care and guide patients and their families through the myriad medical options that exist in an attempt to balance prolongation of life with quality of life.
Introduction
Medical advances and technological progress have affected the management of ruptured abdominal aortic aneurysms (rAAAs) as much as almost any other pathology. With modern skills we now rescue, resuscitate, and perform surgical procedures on patients who in the past were unsalvageable, often with excellent results. Such progress makes it even more difficult to recognize those times when our best is not good enough. It is imperative that we work with patients to identify when we are faced with a problem that medicine cannot fix. Recognizing these situations is not easy nor is it easy to translate the same tremendous energy and effort that we put into saving lives toward quality end-of-life care. This is a reality that must be confronted in the care of the critically ill patient. Regardless of whether the goal is to pursue aggressive life-sustaining care or quality end-of-life care, the basic ethical principles remain the same, as does the need for constant, effective, and clear communication between the interdisciplinary medical team and the patient and his or her family.
In this chapter, we will explore ethical issues that will likely arise in the care of a critically ill patient with a ruptured AAA. We will discuss some of the most basic ethical principles that should be at the core of all medical care. In the intensive care unit, the patient in question is oftentimes unable to make decisions, meaning a family member or surrogate must make critical life-and-death decisions. With this come a host of ethical issues and challenges that we will also discuss. We will then provide some evidence-based strategies for most effectively communicating with critically ill patients and their families followed by a discussion of the role of palliative care and issues specific to end-of-life care.
Body
Basic Ethical Principles
Despite the tremendous changes that have and will continue to occur in the field of medicine, the basic ethical principles that are at the heart of medicine have not changed since they were first described in the Hippocratic oath in the late fifth century BCE. These fundamental ethical principles that should govern all medical care are (1) beneficence, or the physician’s obligation to do good for patients; (2) nonmaleficence, or the duty to avoid harm; (3) autonomy, or respect for a patient’s right to self-determination; and (4) justice, or the fair allocation of healthcare resources. These very principles form the basis of the physician-patient relationship, and it is the duty of the physician to keep these basic principles at the center of all medical decisions that are made to ensure that they are always acting in the best interest of the patient.
Decision-Making
In modern medicine, especially in the Western world, we have embraced the concept of shared decision-making, or a collaborative process by which patients and their providers make healthcare decisions together. Ideally this is done by taking into account the best scientific evidence available in context with the patient’s values and beliefs. This concept can quickly become problematic in the intensive care unit where patients are often unable to participate in discussions about their care. In some instances, a patient’s wishes regarding care in the case of his or her incapacity may be known in advance; however, in many instances they are not.
The process by which patients can, with or without the help of their families and healthcare providers, plan for future medical care is known as advance care planning [1]. The results of these deliberations are known as advance directives, a very broad term that refers to any verbal or written, formal or informal, instructions to healthcare providers, family members, or others involved in a patient’s care regarding treatment that may be required while the patient is unable to participate in medical decision-making [2]. Unfortunately, these advance directives are rarely specific enough to provide meaningful guidance regarding day-to-day care in the ICU [3], and as such, physicians most often rely on surrogate decision-makers for patients who are unable to make decisions for themselves.
The determination of the most appropriate surrogate decision-maker can be complex. A patient can complete a legal document that gives statutory authority to an individual to make medical decisions for a patient in case of incapacity, a document referred to as a durable power of attorney for health care. If the patient has assigned a durable power of attorney for health care, the decision with regard to who the legal surrogate decision-maker should be becomes easy. However, it does not mean that the identified individual is prepared for or desires the role. Not surprisingly, most patients have not completed a form legally making someone their surrogate decision-maker in the event of incapacity. In many cultures, in these instances, we turn to a designated hierarchy of surrogates determined by law. A typical sequence might be: (1) spouse, (2) eldest child, (3) next eldest child, (4) parent, and (5) sibling. In addition to such legal standing however, it is important to consider the person’s moral standing to act as a surrogate decision-maker. Additionally, regardless of documentation that exists or family members that are present, it is prudent, if the opportunity exists, to ask any patient who may become incapable of making medical decisions for themselves who they would like to appoint as their surrogate decision-maker.
Code status is a more limited form of an advance directive that should be sought on admission to the hospital and certainly on admission to the intensive care unit. This is an advance directive that specifically addresses a patient’s (or surrogate’s) preferences regarding cardiopulmonary resuscitation and other measures in the event of a cardiopulmonary arrest. Patients and family members often link limitation in code status to less aggressive care overall. It is imperative when having these discussions that code status be completely disentangled from the aggressiveness of disease-oriented care.
In order to respect a patient’s autonomy, all decision-making, even that which occurs via a surrogate, must involve an informed consent. The basic tenants of informed decision-making are (1) the patient or surrogate must be competent, meaning they must be capable of understanding and manipulating the relevant information in order to formulate and communicate a choice; (2) the patient or surrogate must have enough information in order to be able to make an informed decision about their medical care; and (3) the decision by the patient or surrogate must be voluntary and free of coercion.
Making critical and often life-or-death decisions in the intensive care unit on behalf of a loved one is never easy and can easily be overwhelming for a surrogate decision-maker. It is important to remember, and to remind family members, that the surrogate is not necessarily being asked to independently make medical decisions for the patient but rather that this is a shared responsibility by the patient’s surrogate and other people close to the patient with input from the care team as to the best course of therapy. Most surrogate decision-makers really prefer such a shared decision-making approach, and there is consensus among multiple critical care societies in Europe and North America that the shared decision-making model should be the default in the intensive care unit setting [4, 5]. However, there is considerable heterogeneity among patients and families regarding their desired role in decision-making, and one must be able to individualize one’s approach in order to best meet the needs of the individual patient and family.
Effective Communication with Families of Critically Ill Patients
There is no substitute for timely, clear, compassionate, and ongoing communication between clinicians, nurses, and family members of critically ill patients. A focus on communication with the families of all critically ill patients is important, not just those expected to die. Not surprisingly, surrogate decision-makers report improved satisfaction when physicians are accessible and when they are comprehensive in their communication [6], and there is a higher risk of posttraumatic stress disorder among family members who feel that communication in the intensive care unit is inadequate [7].
Family conferences play a key role in the care of the critically ill patient. These are seminal events for family members and surrogate decision-makers who sometimes feel ill equipped to make decisions on behalf of their loved one. This type of meeting, when done well, with skilled communication by an interdisciplinary ICU team, has the potential to improve outcomes for both patients and family members [8]. There are some core, teachable, evidence-based communication skills that are vital in leading an effective family conference. In this section, we will highlight some of these skills while providing a basic framework for leading an effective family meeting.
Timing of family conferences should be determined on an individual basis taking into consideration the clinical situation and the specific needs of the family. It should, however, be noted that studies suggest that family conferences early in the intensive care unit stay are beneficial, with both decreased use of critical care resources among patients who die and higher quality of death and dying reported by family members when family conferences are held within 72 h of ICU admission [9, 10]. One of the very important tenants of a good family meeting is consistent communication among different members of the medical team, and as such, having a “preconference” immediately prior to a scheduled family meeting can be invaluable [11]. Having a dedicated room for a family conference has also been associated with decreased anxiety among family members and whenever possible should be arranged [12].
The crux of leading an effective family conference, however, is really taking the time to listen to the family while communicating with them in an empathic fashion. Most physicians spend the majority of time when meeting with patients and families talking rather than listening. Families have been shown to have a higher level of satisfaction with lower levels of perceived conflict with clinicians who speak less and listen more [8, 13]. When having a family meeting, it is imperative for the clinician to really focus on listening to the patient and family. Expressions of empathy while relating medical information are important but should not predominate or interrupt family members.
There is an approach called the “Ask-Tell-Ask” approach that can be a helpful tool to assess baseline understanding and evaluate understanding of the information provided [14]. This consists of first “asking” the patient or surrogate to describe his/her understanding of their medical disease and prognosis followed by “telling” the patient or surrogate what you understand about their medical disease and prognosis and then “asking” the patient or surrogate to explain things in their own words in order to allow for an assessment of their understanding.
Once you have gained an appreciation for the family’s level of understanding and have had a chance to provide a medical update, a useful tool in enhancing clinician-family communication that has been shown to improve mental health outcomes of family members is the VALUE tool [15]. This is a mnemonic that features five key components to an effective family meeting that stands for: value family statements, acknowledge family emotions, listen to the family, understand the patient as a person, and elicit family questions.