End-of-Life Decision-Making in Acute Care Setting
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Acute care setting refers to hospital facilities with patients being directly admitted from the community to the casualty medicine department. Those patients usually present with acute illnesses including medical diseases (e.g., sepsis, myocardial infarction), surgical diseases (e.g., intestinal obstruction, appendicitis, cholecystitis), and traumas (e.g., accidental fall, road traffic accident) (Hirshon et al. 2013). These acute illnesses are life-threatening and may cause organs failure, which requires patients to be supported by life-sustaining treatments to save their lives. The life-threatening nature of the organ failure from acute illnesses is usually unexpected by the patients and their families.
Life-sustaining treatments (LSTs) include mechanical ventilation, vasopressor infusion, renal replacement therapy, and cardiopulmonary resuscitation for patients suffering from respiratory, cardiovascular, renal system failure, and cardiac arrest eventually. LSTs are usually conducted in intensive care units (ICUs), but sometimes they can be provided in some intermediate care units, depending on the resources in different health care systems. Withholding (WH) LSTs mean not to initiate or escalate LSTs while withdrawing (WD) LSTs mean to actively discontinue the ongoing LSTs, when the chance of meaningful recovery is judged to be dismal (Wong and Joynt 2016).
End-of-life (EOL) decision is the decision on whether to initiate or continue the use of LSTs during acute life-threatening illnesses when the chance of meaningful recovery is dismal. Before and after the initiation of LSTs, patients may deteriorate very rapidly because of the acute nature of the diseases. Therefore, the available time for EOL decision is usually very limited in acute care settings.
Older adults are particularly vulnerable to acute life-threatening illnesses because of frailty. The decision on WH/WD LST needs to be made at a certain stage of acute illnesses for frail older adults, to avoid unnecessary prolonged suffering during hospital stay and after discharge from the hospital if they survive. Older adults often are incapable of communicating with physicians because of the acute illness or the unavoidable use of sedative drugs for LSTs. Patients’ autonomy should be respected by gathering substituted opinions from their close families. Eventually, a shared decision, contributed by physicians and patients’ family, on appropriate EOL care plan regarding LSTs should be finalized through a well-structured communication process.
Key Research Findings
Frailty is the multisystem decline in health status resulting in cumulative impairment in physical and cognitive reserve (Montgomery and Bagshaw 2017). Clinical Frailty Scale (CFS), a scale of nine scores with five as a cut-off point to define frailty, is a commonly used scoring system to evaluate the severity of frailty (Juma et al. 2016). Frailty in older adults increases their risk of hospital mortality, and more importantly, even if they survived, jeopardizes the quality of their future life. Frailty evaluation is known to be a more comprehensive tool, compared to chronological age, in assessing prognosis and potential of recovery in critically ill older adults. Frailty was found in 43.1% of older adults (≥ 80 years) requiring ICU admissions in a multicenter study conducted in Europe. The 30-day mortality of frail older adults was 59%, which is significantly higher than nonfrail older adults (Flaatten et al. 2017). In the United States, frailty was found in up to one-third of patients admitted to ICU and incremental worsening of survival with increasing CFS was noticed in the 1-year survival analysis (Brummel et al. 2017). Besides mortality, frail older adults, if survived, had poor outcome, including greater disability, impaired quality of life, and likely requirement of institutional care (Montgomery and Bagshaw 2017).
Beneficence and Nonmaleficence
WH/WD LSTs is a common practice in ICU and other acute care facilities around the world based on the ethical principles of beneficence and nonmaleficence (Buckley et al. 2004; Phua et al. 2015; Sprung et al. 2003); despite this, the decision usually end up in mortality. Physicians should be the one to initiate the decision-making process (Joynt et al. 2014). However, time is usually limited in the process due to the acute nature of the deterioration. The incharge physicians in the acute care facilities should seriously consider the burden associated with the LSTs and the possible impact during and after hospitalization (Reignier et al. 2019).
Autonomy and Substituted Decision-Making
An advance directive (AD) is a legal binding document signed by the patient, when he or she is mentally competent, in the presence of a doctor and a witness. The AD should indicate the form of treatment he or she would or would not accept when he or she is terminally ill and no longer competent. AD is legalized in the United States, United Kingdom, Germany, Australia, Singapore, and some other western countries. It is not yet legalized in Hong Kong, China, and other developing countries in Asia (Brown 2003; Chu et al. 2011; Lush 1993).
Without a legalized AD, patients’ autonomy should be respected by gathering substituted opinions from patients’ close families, when direct communication with patients is impractical. The prerequisite for a valid substituted opinion is that patient’s thoughts and feelings with regards to serious illnesses, acceptable quality of life, dying, and death are known or can be presumed by their families (Wendler 2017). Families ought to be reminded to express opinions based upon the patients’ values and preferences, but not their own.
The SDM process should be accomplished by early and repeated goal of care discussions with the critically ill patients and/or their families (Joynt et al. 2014). While EOL care discussion may not be appropriate in the early phase of acute life-threatening illnesses, the early goal of care discussion within 24 h of acute deterioration could pave the way for subsequent communications regarding WH/WD LSTs for those frail older adults subsequently deemed to have minimal chance of meaningful recovery.
A well-structured communication with families during critical illness should include providing accurate medical information, clarifying substituted and shared decision-making concept, addressing families’ concern, and managing their emotions. This form of communication intervention has been shown to be effective in shortening the dying process of 1.26 days in ICU (Lee et al. 2019). All parties should maintain mutual understanding and respect to conclude a beneficial shared decision on WH/WD LSTs for the patients.
Effect of video-based educational intervention on cardiopulmonary resuscitation (CPR) and intubation has been evaluated on patients admitted to the acute hospital. Older adults who have viewed the video were more likely to choose limitation of support, compared to patients who received the same information by verbal description only (Merino et al. 2017). Another study, evaluating the effect of video displaying the use of LSTs including intubation, CPR, and vasopressor drug infusion showed that patients suffering from terminal illnesses were less likely to opt for LSTs after viewing the video (El-Jawahri et al. 2015). Audio-visual assistance can be sought to facilitate the communication process in end-of-life care discussion.
Illustration by a Clinical Case
A temporary tracheostomy, a prolonged hospitalization, and subsequent worsening of functional state may not be acceptable to some older adults. Therefore, when the patient is admitted to the acute care facility for management of pneumonia, an early goal of care discussion should be conducted by the physician to explain the disease, treatment options, prognosis, and expected outcome. In case of deterioration that necessitates the consideration of invasive mechanical ventilation, the physician should specifically clarify the possible outcomes of temporary tracheostomy, prolonged hospitalization, worsening of patients’ functional state, and mortality if treatment fails. Substituted opinion should then be sought from families regarding the use of LSTs. Family should be guided and supported by physicians in the discussion process. They should be reminded that their opinion should be based on patient’s previous expressed view on similar encounters of acute life-threatening illnesses. For example, patient may have expressed their feeling toward treatment in the hospitals and care in the institutions when they visit other sick relatives in the hospitals or elderly homes. If such previous expressed view is not present, families need to make their judgment based on their understanding of patient’s value and preference from their daily living. Video-based educational tools can be utilized to help the family to envisage the situation of organ support during hospitalization and impaired functional state after discharge from the hospital. Initiating or withholding invasive mechanical ventilation should be finalized by reaching consensus among physicians and patients’ families.
Similar discussion and decision-making process can be repeated after initiation of mechanical ventilation or other LSTs, as changes in mind by families are not uncommon after witnessing the real situation of LSTs in ICUs. Changes in decision, which can be initiated by either physicians or patients’ families, can be made according to the patient’s clinical progress.
Future Direction of Research
With the ageing population, the prevalence of frailty is as high as 1 in 6 of the population of older adults in the community (Ofori-Asenso et al. 2019). However, they are more likely to be suffering from multiple comorbidities, making them prone to acute life-threatening illness. Most of the existing research findings relevant to end-of-life decision were focusing on patients suffering from chronic progressive organ failure (e.g., chronic obstructive pulmonary disease (COPD), end-stated heart failure, renal failure, and advanced dementia), or metastatic malignancy rather than frail older adults in the community. Regarding acute life-threatening illnesses, investigations were frequently conducted in ICUs looking into the communication and decision-making after LSTs being initiated. A timely end-of-life decision before initiation of LSTs is the best option to avoid the suffering that is unacceptable to older people. Lack of interdisciplinary approach was found to be an important barrier in embedding EOL care in acute hospitals (Noble et al. 2018). Data regarding decision on WH LSTs as part of the EOL care in the acute care facilities should be the research direction in the future. The acceptable decision-making model and appropriate component in the communication process before LSTs initiated in ICU should be evaluated.
While a well-structured communication and video-based education intervention are proven to be beneficial to patients and families in the hospital settings (Merino et al. 2017; White et al. 2018), the acceptance and effectiveness of video-based public educations regarding WH/WD LSTs in the community should be evaluated. Substituted and shared decision-making process is important, but difficult for the public to understand. The present public’s understanding of these two concepts and the appropriate way to improve their comprehension is another important research topic in the future.
EOL decision is difficult in acute care setting because of the time constraint from potential rapid deterioration from acute illnesses and frequently impossible direct communication with patients. The decision-making should be based on the shared decision-making model with medical input from different specialists taking care of the patients and substituted patients’ opinion from families. A well-structured communication is the key to success in the decision-making process. Future research should focus on potential benefits of earlier decision-making before referring to ICU and public education regarding EOL decision in acute care setting.
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