Tremendous strides in medicine and technology throughout the 20th century led to unprecedented advances in medical care and increases in life expectancy. However, the need to provide quality end-of-life (EOL) care for terminally ill patients did not gain similar attention, and the emergence of the modern hospice movement in the 1960s grew out of the eventual recognition that improvements in EOL care were sorely needed (Clark, 2007). The need to improve EOL care for hospitalized patients gained increased attention in 1995 with publication of the landmark SUPPORT study (Connors et al., 1995), which highlighted the pain, indignity, and social isolation experienced by those dying in the hospital, particularly those experiencing life-sustaining treatment (LST) in the intensive care unit (ICU). Since that time, extensive research efforts and numerous practice recommendations have not achieved desired improvements in quality of dying in the ICU (Callahan, 2005; Curtis et al., 2011; Emanuel & Emanuel, 1998; Goodman et al., 2010; Institute of Medicine (IOM), 1997; Puntillo et al., 2004, 2010). Patients at EOL, the majority of whom are older adults, continue to experience pain and uncomfortable symptoms related to ineffective and unwanted treatment.
The purpose of this article is to explore several key factors that contribute to the problem of poor EOL care among older adults in the ICU and a proposed solution. Although this problem is complex, five distinct factors are highly relevant:
- The prevailing technological and research imperatives in modern medicine.
- The lack of explicit informed consent with regard to ongoing treatment provided in the ICU.
- A lack of clarity about the role of a surrogate.
- The inadequacy of most advance directives (ADs), when they exist, to provide clear direction on values and preferences.
- The difficulty of prognostication, especially with nononcological conditions or those that do not follow a predictable trajectory.
This is followed by a proposed solution: a mandatory review of goals of care conducted at 48 hours after admission—with all ICU patients at high risk of dying or with their surrogates—to address the negative ethical and patient-care sequelae associated with each of these elements.
Prevailing Technological and Research Imperatives
The technological imperative is described as an unfettered compulsion toward the use of technology in health care (Hofmann, 2002). Hofmann conceptualized the technological imperative as a multidimensional phenomenon consisting of multiple imperatives. Among these are: the imperative of possibility and action (if it is possible, it should be attempted); the imperative of commitment (once a technological treatment trajectory is chosen, it must be followed); the imperative of demand (the public expects and demands the technological option); and the imperative of means as ends (technology in health care is not a means to a good, but a good in and of itself). Hofmann (2002) argued that we have extensively embraced technology, yet we have failed to consider the moral imperatives associated with these multiple technological imperatives. Thus, the pervasive use of technology in modern health care has resulted in a reduced and displaced responsibility toward its use. The technology is not the problem; it is our failure as clinicians, consumers, and authors of health care policy to consider the corresponding moral imperatives that accompany the use of technology. The widespread use of LSTs such as mechanical ventilation (MV) and continuous renal replacement therapy at EOL are examples of this issue. In effect, the contemplation of things we should do needs to “catch up” with the attention paid to things we can do. Institutional policies that seek to balance technological imperatives with attention to moral imperatives can serve to safeguard the well-being of vulnerable critically ill patients.
Closely related to the technological imperative is the research imperative, which has been described as the overwhelming focus of medical research on prolonging life through the eradication of disease to the exclusion of attention to quality of life or quality of death (Callahan, 2000). This drive to eradicate disease at its origins ignores the many older adults who presently live and die with symptoms of chronic life-limiting illness. To combat the research imperative, Callahan (2000) argued that medicine should expend as much effort on research directed toward ensuring a good death as it does on that which is directed toward prolonging life. The combination of these dominant imperatives in modern medicine has reduced medical practice to a technological and scientific endeavor that has as its primary goal eventual cure, not the present understanding and reduction of suffering related to human illness (Callahan, 2000; Lewis, 2007).
Informed Consent in Critical Illness
Perhaps as problematic as the technological and research imperatives is the nature of critical illness and the ICU (and its frequent precursor, the emergency department). When a critically ill patient is brought to the emergency department or the ICU, it is often in a state of crisis, and treatment choices are protocol-driven rather than deliberated. The goal is to stabilize the patient, then work to identify and correct the underlying source of instability. In these situations, unless clinicians have some a priori knowledge that a patient would not want standard resuscitative and curative treatment, the practice described above is the most practical and ethical approach. In most cases, the risk of patient harm related to delayed treatment outweighs any gains that may be realized by verifying patient preferences for care. This is described by Beauchamp and Childress (2009) as implicit or implied consent and is recognized as a “complexity in respecting autonomy” (p. 107).
Once the patient is stabilized, many of the LSTs that were initially used continue to be needed while the underlying problems are diagnosed and treated. These treatments may include MV, intravenous medications to maintain blood pressure and heart rate/rhythm, intra-aortic balloon pump therapy, and acute renal dialysis/continuous renal replacement therapy. The use of these LST modalities has been identified as a major source of pain and discomfort for patients (Bergbom-Engberg & Haljamäe, 1989; Hweidi, 2007; Puntillo et al., 2010; Rotondi et al., 2002; Samuelson, 2011). However, in the ICU there is no natural transition point where emergent care is considered completed and standard intensive care ensues; therefore, there is no corresponding point at which explicit consent is sought for the ongoing use of these LSTs. Given that these treatment modalities carry known risk (beyond the pain and discomfort described above) and are of potentially limited benefit for some (approximately 20% of ICU patients do not survive [Angus et al., 2004]), the need for more explicit consent to these treatments is essential. Because the principle of autonomy, or respect for individuals, is upheld primarily through the exercise of informed consent (Beauchamp & Childress, 2009), the prevailing patterns in ICU practice represent a serious departure from that standard.
It is important to recognize the limitations inherent in the concept of the patient as an individual, autonomous decision maker. In many cultures, decision making is viewed as a collective process involving various immediate and extended family members, and possibly community and religious leaders (Kwak & Haley, 2005). Research shows that even in mainstream Western culture, many individuals facing life-limiting illness prefer some form of shared decision making involving the input of family members and physicians (Nolan et al., 2005; Sulmasy et al., 2007). Yet, even if decision making is not achieved through a single, autonomous decision maker, there remains an obligation to confirm that the treatments being used are consistent with the preferences and values of those central to the decision.
Clearly these situations are quite different from the classic examples of the informed consent process, where a conscious patient carefully deliberates (after risks, benefits, and alternatives are disclosed) an isolated surgical procedure or a course of chemotherapy. Due to the effects of illness and the sedative and analgesic agents required to implement LSTs (Hofsø & Coyer, 2007), many ICU patients are not sufficiently conscious or decisionally capable to participate in discussions about treatment or are only able to participate to a limited extent. In these instances, there is a heavy reliance on decisional surrogates. Admittedly, the process of informed consent in these settings is difficult; however, the obligation to determine and honor individual values and preferences remains.
Another impediment to participation in decision making is communication difficulty, which in the ICU is commonly the result of orotracheal intubation or tracheostomy placement. Although patients may be awake and aware, the voicelessness imposed by these treatment modalities significantly impacts the communication process (Bergbom-Engberg & Haljamäe, 1989; Happ, 2000). Communication techniques and assistive devices are available, but the degree to which they are used is unknown. Without successful communication, patients are excluded from the dialogue, and instead of maximizing patient participation in decision making, a lower standard of decision making is accepted.
The Role of the Surrogate
In instances where patients are not able to act as the primary decision makers, surrogate decision makers, either designated by the individual through an AD or privileged by their legal relationship to the patient (i.e., parent, spouse, or sibling), are engaged to decide on behalf of the patient (Buchanan & Brock, 1989). The surrogate is responsible to act in accordance with the values and preferences of the patient. If the patient’s preferences vis-à-vis the choice at hand have been clearly defined in an AD such as a living will, this task is made easier. However, if the directive is unclear, or if none exists, the surrogate is required to decide in accordance with what he or she believes the individual would have chosen. This is referred to as the substituted judgment standard (Beauchamp & Childress, 2009; Buchanan & Brock, 1989). Admittedly, no clear line exists between autonomous and surrogate decision making, and the process, in practice, may more accurately resemble a shared decision-making model (Charles, Gafni, & Whelan, 1999). However, even in shared decision making, where input from physicians and family members is included, the goal is to arrive at a decision that is patient centered. Unfortunately, many individuals who are called on to act as decisional surrogates do not understand this principle and believe they are being asked to make the decision based on their own wishes or preferences (Rabow, Hauser, & Adams, 2004; White, 2011) Not only does this put increased burden on the surrogate(s), it undermines patient autonomy. Formalized processes that educate surrogates about their role in the decision-making process can help reinforce patient autonomy.
Inadequacy of Advance Directives
ADs are instructions. They are typically executed in the form of legal documents that indicate treatment preferences and designate decision makers to be consulted in the event the individual is decisionally incapacitated (Beauchamp & Childress, 2009). The passage of the Patient Self Determination Act in 1990 mandated that health care institutions: (a) ask each patient if he or she has an AD, (b) acknowledge any existing ADs, and (c) offer information about ADs if the individual is interested. The hope of this legislation was that individuals would indicate their preferences for LST and designate a surrogate decision maker via these instructions, thereby ensuring that their preferences would be known in the event of decisional incapacity. However, this effort is considered to be only partially successful, primarily because ADs focus on accepting or rejecting specific treatments in the event of irreversible illness, not on outcomes (e.g., functional status). In addition, they often limit the conditions of withholding or withdrawing LSTs to situations of permanent unconsciousness or persistent minimal consciousness, situations that are rare and contentious in terms of diagnosis and prognosis (Teno, Gruneir, Schwartz, Nanda, & Wetle, 2007). Given that the ADs of many older critically ill patients can offer only limited guidance in decision making, other measures to support clinician and surrogate decision making must be used.
Difficulty with Prognostication
A final reason that critically ill ICU patients experience prolonged LST at EOL is the reluctance of physicians to prognosticate about chances of survival, despite the fact that 20% of patients receiving ICU care in the United States will not survive hospitalization (Angus et al., 2004). The mortality rate for critically ill older adults is even higher, with estimates between 39% and 46% for those receiving prolonged MV (Farfel, Franca, Sitta, Filho, & Carvalho, 2009; Wunsch et al., 2010). Even if survival of hospitalization is achieved, the chances of profound functional impairment are high (Barnato, Albert, Angus, Lave, & Degenholtz, 2011; Carson et al., 2012; Chelluri et al., 2004). Some physicians claim prognostic information is upsetting to patients and families and will cause them to lose hope; however, research has not supported this claim. In addition, this information is essential to decision makers when weighing the risks and benefits of LST options.
Severity of illness or prognostic scores can offer an objective measure of the likelihood a patient will not survive. Instruments such as the APACHE II are well validated (Al-Khafaji, Angus, & Knaus, 2007) and have been used in EOL research to identify those at high risk of death (Puntillo et al., 2010). In addition, other scoring mechanisms, such as the ProVent score, offer an accurate estimate of 1-year survival (Carson et al., 2012). Although these tools are not perfect, they can assist clinicians in identifying those most likely to die or have serious functional impairment, thereby serving as screening tools to target those most likely to benefit from interventions to improve EOL care.
It is clear there are multiple barriers to ensuring that ICU patients at high risk of dying or profound functional impairment receive care that is consistent with their values and preferences and imposes a minimum burden of pain and uncomfortable symptoms. To address these barriers, I propose that ICUs institute a mandatory review of goals of care, conducted at 48 hours after admission with all ICU patients at high risk of dying or serious functional impairment, or with their surrogates. A prior study by Lilly et al. (2000) demonstrated the effectiveness of meetings at 72 hours post-ICU admission for similarly ill patients, and this general timeframe has been recommended by Nelson, Walker, Luhrs, Cortez, and Pronovost (2009). I would argue, however, for an earlier time-frame for meetings—48 hours—to formally establish that ongoing LST is consistent with a patient’s preferences and values.
If it is reasonable and appropriate for patients to participate, they should be engaged in the discussion. If unable to participate fully, patients should still be included to the greatest extent possible. Surrogates should only be the primary decision makers when patients are completely unable to participate in the process, thereby upholding patient autonomy at the highest level possible. Those involved should know that the patient is seriously ill and there is a significant possibility he or she will not survive hospitalization. These meetings should continue to be held at routine intervals as long as the patient remains at high risk of dying.
In the discussion, each LST modality used should be reviewed. Clinicians should offer information regarding the risks (pain, disability), benefits (improvement in function versus prolonging life in the current state), and alternatives for each modality. This will compel clinicians to offer a candid appraisal of the potential benefits ongoing use of the treatments will offer. In other words, what goals do they hope to achieve with this treatment regimen? It will also serve to acknowledge the pain and other discomforts the patient might be experiencing and stimulate interventions to alleviate these. Clinicians should also address potential future treatments that may be needed in the event of a worsening clinical picture and discuss risks, benefits, and alternatives to these. This discussion serves to address the moral imperatives that balance the technological and research imperatives outlined above. It also creates a structured opportunity to move from the implied consent of rescue to more explicit informed consent for ongoing treatment. Regular meetings to review goals of care are recommended by the Agency for Health-care Research and Quality (AHRQ, 2006), but this recommendation has not been consistently followed (Penrod et al., 2012).
If the patient is unable to participate in the discussion but had executed a clear, detailed AD that offers guidance in the decision about ongoing care, the AD should be viewed as expression of prior competent choice. If, on the other hand, the AD is vague or not applicable to the care decision, it may only provide general guidance. In that case, surrogates will serve as the primary decision makers. It should be clear that—to the best of their abilities—they are to make the decision they believe the patient would have made, if he or she were able to. Clinicians can encourage surrogates to think about what was important to the person, even if no formal discussions about values or treatment preferences occurred (Scheunemann, Arnold, & White, 2012). This deliberate process serves to reinforce patient autonomy and minimize the provision of care that is inconsistent with patient preferences and values. This is achieved by using what information is available about preferences and values in the ADs and engaging surrogates in an ethical manner. At the close of the discussion, if the current treatments and resulting outcomes are not consistent with the values and preferences of the patient, steps should be taken to make appropriate changes to the care regimen.
Several arguments opposing this mandatory review of goals of care could be made. Physicians may argue that the process will take too much time or that they lack the skills to have these discussions. Although it is true that ICU physicians are extremely busy, palliative care consultants (PCCs) may be able to fill the gap. (However, the appropriateness of being unskilled in a clinical situation that fully 1 in 5 patients will face is questionable for those who choose to practice in the ICU.) The prevalence of PCC services has increased dramatically in the past decade, and it is now estimated that 75% of academic medical centers have a formal PCC service (Center to Advance Palliative Care, 2006). For those situations in which physicians lack the time or skill to conduct these discussions, PCC services could be used. An additional benefit would be the consultant’s skill in pain and symptom management and spiritual support for both the patient and family. A lack of time or skill does not justify dispensing with a process that preserves patient autonomy.
Another argument against this proposal is the possibility that family members may refuse to engage in the discussion or act as surrogates. Although family members cannot be compelled to serve as decisional surrogates, upholding the autonomy of the patient demands that clinicians at least attempt to engage them. Research has shown that surrogate decision making for a loved one in the ICU is very stressful, with the prevalence of psychological or physical distress among family members of ICU patients exceeding 80% in some studies (McAdam, Dracup, White, Fontaine, & Puntillo, 2010). However, the provision of consistent emotional support may enable family members to better engage in the process (Davidson, Jones, & Bienvenu, 2012). Again, PCCs may be helpful, as they could provide additional emotional and spiritual support to families when ICU staff lack the time or skill to do this.
Implications for Gerontological Nursing
Providing good quality EOL care for older adults in the ICU remains a clinical and ethical challenge. Instituting mandatory goals-of-care discussions, conducted within 48 hours of ICU admission for all patients at high risk of dying, would serve to address the current deficiencies and improve outcomes for critically ill patients and their families at EOL in the ICU. Gerontological nurses can play a pivotal role in this effort, as they are uniquely situated in the care environment (White, 2011). There are numerous barriers and challenges to assembling family members/surrogates of critically ill older adults—the surrogate may be a frail spouse or an adult child with multiple, competing caregiving responsibilities. In situations where there are multiple family members involved in decision making, the nurse may be in the best position to know or to ask the patient, “Who would you want to be here/be making decisions for you?” Gerontological nurses practicing in institutions in which routine goals-of-care discussions take place will play a vital role in identifying patients at risk and facilitating early meetings during the ICU course. For those in institutions where such meetings are not routine, gerontological nurses can act as change agents to advocate for the establishment of programs to meet this goal. Regardless of institutional practice, the nurse functions as a critical player in this process.
Despite the AHRQ (2006) and IOM (1997) recommendations, a recent study showed that less than 20% of ICU patients had a family meeting within 5 days of admission (Penrod et al., 2012). Furthermore, a study of older adults receiving palliative care consultation showed that although 76% of the very old (>85) had do-not-resuscitate (DNR) orders, they received the same number of LSTs as younger patients who had a lower percentage of DNR orders (Olden, Holloway, Ladwig, Quill, & van Wijngaarden, 2011), suggesting that care for vulnerable older adults may not be consistent with patient values and preferences. These findings illustrate the need for ongoing research to increase the rate of family meetings and to evaluate their effectiveness. This article offers an approach to family meetings in the ICU that is earlier and more directly focused on goals of care. Research implementing this approach would offer valuable insight and provide direction for further improvement in EOL care, particularly for older adults in the ICU.
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