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In intensive care units, keeping patients sedated and immobilized was once the norm—but this approach led to unexpected and serious adverse effects. In Every Deep-Drawn Breath, Wes Ely recounts how an enigmatic condition called delirium prompted him to reevaluate conventional critical care methods. He shares his groundbreaking research, revealing delirium's link to higher mortality rates and long-lasting cognitive issues in patients.

Ely advocates for a patient-centered overhaul of intensive care. Drawing on real cases, he shows how involving family, minimizing sedation, and mobilizing patients yields better outcomes. His work sparked international initiatives, like the A2F bundle, that prioritize patients' stories and experiences over merely treating failing organs.

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Context

  • Delirium is an acute, often sudden, change in mental status characterized by confusion, disorientation, and an inability to focus. It can fluctuate in severity and is often reversible with proper treatment.
  • The exact mechanisms are not fully understood, but it is believed to involve neurotransmitter imbalances, inflammation, and disruptions in brain function due to illness or medication.
  • Common causes include infections, withdrawal from substances, metabolic imbalances, and the effects of medications. The ICU environment itself, with its constant noise and light, can also contribute.

Wes Ely's pioneering studies revealed that the mental confusion often observed in patients in intensive care reflects genuine brain injury, which is often a result of prolonged heavy sedation. Delirium serves as an alert to possible brain damage. Ely's research uncovered that the consequences of these neurological injuries might have significant and lasting effects on the patient's life, continuing long after their discharge from the hospital.

Practical Tips

  • You can create a personal health journal to track any instances of confusion or memory issues after a hospital stay. By keeping a detailed record of your cognitive health, you can identify patterns or changes that may be related to past medical experiences. For example, note down moments when you feel unusually forgetful or disoriented, along with the date, time, and any potential triggers or preceding events.
  • You can increase awareness about the importance of mental health care in ICU survivors by starting a blog or social media page dedicated to sharing survivor stories and resources. By doing this, you create a platform that highlights the long-term psychological effects of intensive care, encouraging others to seek help early and healthcare professionals to take preventive measures.
  • Engage in proactive brain exercises that challenge memory and problem-solving skills, and track your progress over time. Use apps or games designed to improve cognitive function and record your scores periodically. If you observe a sudden drop in your usual performance levels, consider discussing it with a healthcare provider to rule out any underlying issues.
  • Develop a habit of discussing medical procedures and their risks with your doctor, focusing on understanding the implications of sedation. By asking questions like "What are the alternatives to sedation?" or "How can we minimize the duration of sedation?" you become an active participant in your healthcare decisions.
  • Use a mobile app to track your sleep patterns and quality, as poor sleep can be a precursor to cognitive issues. Many apps offer features that record sleep duration, disturbances, and cycles. By analyzing this data over time, you can identify if there are correlations between your sleep habits and days when you feel mentally off, which might indicate a risk for delirium.
  • Develop a mindfulness routine to potentially mitigate the impact of stress and anxiety related to intensive care experiences. Incorporate simple mindfulness exercises such as deep breathing, progressive muscle relaxation, or guided imagery into your daily routine to help maintain your neurological health.
  • Develop a support network of friends or family members who understand your condition and can help monitor your recovery. Educate them about the potential long-term effects of brain injuries so they can assist in recognizing signs that may require medical attention or support. For example, they could remind you of appointments, help with exercises prescribed by therapists, or provide emotional support on difficult days.
The author's research highlights the correlation between the duration of a patient's delirium and the subsequent severity of cognitive decline, emphasizing the necessity of proactive measures to prevent and manage delirium effectively.

Ely focused his early studies on pinpointing the factors contributing to higher death rates among older ICU patients. After being discharged from the intensive care unit, numerous patients would return for further treatment or succumb, sparking his interest in the possibility of other organ systems failing once they were no longer under his care. The prestigious scientific journal featured the publication of his unexpected research findings. Patient health outcomes remained uniform regardless of the varying ages and the initial pulmonary conditions they faced. The differences became apparent after their departure from the hospital. He proposed that the decline in older patients originated from cognitive decline rather than respiratory failure. He began to observe a correlation among the disorientation seen in many individuals in the intensive care unit, the ensuing brain harm, and the death rate. These findings propelled him into a multi-year research project to understand the prevalence and impacts of delirium on ICU patients.

Context

  • Older adults are more likely to be admitted to ICUs due to age-related health issues. They are also more susceptible to complications like delirium, which can lead to higher mortality rates.
  • The failure of one organ system can lead to a cascade effect, impacting other systems. For example, respiratory failure can lead to decreased oxygen supply, affecting brain function and potentially leading to cognitive issues.
  • In scientific research, unexpected findings can challenge existing theories or open new avenues for investigation. These results often prompt further studies to explore the underlying mechanisms or to confirm the initial observations.
  • The tools and metrics used to assess health outcomes in the ICU might not capture subtle differences in recovery trajectories that become apparent only after patients leave the hospital.
  • The differences in outcomes can significantly affect a patient's quality of life, influencing their ability to return to work, engage in social activities, and maintain independence.
  • Cognitive decline refers to the deterioration of intellectual functions such as memory, attention, and decision-making. In ICU settings, this can be exacerbated by factors like sedation, lack of sleep, and the stress of severe illness.
  • Ely's research likely involved longitudinal studies, tracking patients over time to assess cognitive function and health outcomes post-ICU discharge.

The importance of prioritizing the patient's individual experiences and values within the realm of critical care.

In this segment, Ely advocates for a comprehensive approach to treating critically ill patients, emphasizing their overall well-being instead of just attending to a set of malfunctioning organs. He explains that adopting this method improves the recovery journey by combining scientific knowledge with advanced medical equipment, while still acknowledging their importance. Ely aspires to ensure that care focused on the individual is a fundamental aspect of bedside treatment. Wes Ely emphasizes the inescapable reality that either we or someone we hold dear will eventually be in the hands of an intensive care unit, and the caliber of treatment received in such situations will have a profound impact on both the immediate outcomes and the enduring well-being of the survivors. Ely champions a revolutionary shift in hospital treatment that places the patient at the forefront, a strategy supported by solid evidence. He also imparts to his audience a holistic approach that is demonstrated to diminish patient distress and improve their life expectancy and overall health after they are discharged from medical institutions.

Acknowledging the individual's entirety, not merely their medical issues.

In this section, Ely emphasizes the importance of acknowledging each patient's unique identity, rather than seeing them simply as an assortment of failing organs. He contrasts the previously common impersonal approach used within Intensive Care Units with a modern approach that prioritizes recognizing the unique characteristics of each patient to customize their care according to their unique needs. In Chapter Eleven of the book. He encourages people to thoughtfully consider their preferences for medical treatments should they become gravely ill and require intensive care. The journey toward healing is profoundly influenced by the genuine connection and interaction between a healthcare provider and the individual receiving care, as well as the crucial support provided by family and social networks.

The writer's shift in perspective involved broadening his attention from merely the medical conditions of the patient to a comprehensive understanding that encompasses the personal stories, core values, and objectives of the individual.

Dr. Ely's participation in transplant medicine strengthened his bond with his patients and brought him to the understanding that he had once considered ICU patients simply as collections of organs in need of fixing. He wanted to know his patients better and began following them after they had been transferred to other floors in the hospital, asking their family for details about their life before coming under his care. He delved into nuances he once considered inconsequential, firmly believing that these particulars were of minor importance compared to a patient's foremost goal of eluding mortality. He began to grasp the significance of this method. Wes Ely noted that individuals seeking organ transplants frequently distinguish themselves by vigorously advocating for their cause and divulging their comprehensive life stories to gain the support of medical staff and secure the necessary vital organs.

Context

  • This shift reflects a broader trend in healthcare towards holistic medicine, which emphasizes treating the whole person rather than just the symptoms of a disease. This approach can lead to more personalized care and better patient outcomes.
  • Healthcare professionals may develop emotional detachment as a coping mechanism to deal with the stress and emotional demands of caring for critically ill patients.
  • This approach often involves collaboration with other healthcare professionals, such as social workers and psychologists, to address the diverse needs of patients.
  • By learning about a patient's life before hospitalization, doctors can better understand the social and emotional factors that might impact their recovery and overall well-being.
  • Patients often need to actively participate in their healthcare journey, especially in complex cases like organ transplants, where they must demonstrate their commitment and suitability for receiving an organ.
  • Understanding core values can help in tailoring communication strategies, ensuring that information is conveyed in a way that resonates with the patient's worldview and cultural background.
Understanding the confusion, fear, and diminishing sense of dignity patients frequently experience while being treated in the Intensive Care Unit is of paramount importance.

Ely underscores the necessity of comprehending the viewpoint of patients to enhance the quality of care in intensive medical settings. He underscores the importance for healthcare providers to go beyond merely preserving organ function with their expertise and techniques, and to deeply engage with the personal perspectives and experiences that patients have concerning their illnesses. People under sedation or suffering from delirium may find their reality intimidating and difficult to break free from. It is essential to understand the occurrences that took place during their period of unconsciousness, particularly how the application of technology and medical interventions may have unintentionally compromised their mental and physical well-being, and to identify measures that can be implemented going forward.

Other Perspectives

  • In some cultural or institutional contexts, the healthcare provider's role is seen primarily as a medical expert rather than a holistic caretaker, which could limit the extent to which they can engage with patients' personal experiences.
  • Some patients may have a neutral or even positive experience while sedated or delirious, depending on the nature of their dreams or hallucinations, and their personal psychological responses to the situation.
  • It is important to consider that the perception of technology and medical interventions as negative might be influenced by the patient's condition and may not necessarily reflect the overall benefit these interventions provide.
  • In some cases, the unintended consequences might be due to factors outside the control of healthcare providers, such as patient's individual responses to treatment or pre-existing conditions, and thus may not be preventable through changes in medical practice.

Involving patients and their loved ones as partners in every step of their care process.

Ely found that a groundbreaking method of treatment, focusing on the individual's comfort rather than solely pursuing a cure, acknowledges the unique narrative and requirements of the patient instead of referring to them by impersonal identifiers such as "the patient in Room 557," and such a method can start with simple everyday practices. He began to deliberately alter his methods of treating patients and motivated his team and health institutions around the globe to do the same. He demonstrates that by shifting attention from the issue to what is genuinely significant, one can rapidly change a person's trajectory in life, regardless of whether this occurs within the confines of an intensive care unit or beyond its walls. He also underscores the importance of expanding our focus to encompass not only the patient but their family members as well.

Keeping a journal while in the Intensive Care Unit can help patients and their families understand what they went through and assist in their recovery following discharge from the hospital.

In his book, Ely emphasizes the significance of maintaining diaries within the ICU as a means to improve the recuperation journey for those confronting critical conditions, with a particular chapter dedicated to fortifying connections between individuals in the realm of critical care. For some survivors, it can prove helpful in filling in memory lapses or comprehending the frequently distressing events they went through during their time in critical care. The diaries provided a comforting and engaging diversion for family members during the stressful times spent beside the hospital beds of their loved ones. Initially skeptical regarding the advantages of maintaining ICU diaries due to time constraints, Ely came to understand their importance upon reviewing his own notes about a patient who had died. He was saddened to see how little he had known the patient, and how her diary could have taught him about the things that mattered to her.

Other Perspectives

  • Cultural differences may influence the acceptance and effectiveness of journaling, as some individuals may not be accustomed to expressing themselves through writing or may not see it as a beneficial practice.
  • The focus on diary-keeping might inadvertently shift attention away from other proven therapeutic interventions that are critical for patient recovery, such as physical rehabilitation or psychological support.
  • Memory gaps can sometimes serve as a protective psychological mechanism, and filling them in might not always be beneficial for the patient's mental health.
  • While ICU diaries may provide comfort for some family members, others may find the process of recording events too emotionally taxing during an already stressful time.
  • While Ely's change of heart is commendable, it's important to consider that personal anecdotes and individual experiences, such as his with the deceased patient's notes, may not always provide a sufficient basis for widespread implementation of practices like journaling in the ICU.
Family members are acknowledged as essential participants in the healthcare team, with their significant role in improving the patient's overall well-being and aiding in their recuperation.

Ely underscores the significance of involving relatives in the care strategy as they contribute essential perspectives on the patient's extensive history and personal narrative, which greatly aid medical professionals. He challenges the deep-seated belief that allowing family members to be with their loved ones in the ICU is an unwarranted luxury, often discouraged due to the assumed drain on time or the interference with the medical staff's duties. Wes Ely discusses how intensive care units often limit the time family can spend with patients and share updates only when necessary or when there is enough time. We now recognize that our actions constituted a form of testimonial injustice; by placing all decision-making power solely in the hands of the healthcare professionals, we lessened the importance of input from the patient's loved ones and deprived them of their right to be involved in decisions regarding the care of their relatives.

Context

  • They can provide continuity of care by ensuring that important information about the patient’s medical history and previous treatments is communicated to new healthcare providers.
  • Involving family ensures that care strategies are consistent and maintained post-discharge, reducing the likelihood of readmission.
  • The presence of familiar faces can reduce anxiety and stress for patients, which is particularly important in the high-stress environment of an ICU.
  • Limited visiting hours can create communication barriers, preventing families from fully understanding the patient's condition and the care being provided, which can lead to increased stress and anxiety for both patients and their families.
  • In many jurisdictions, there are legal and ethical frameworks that support the involvement of family members in healthcare decisions, especially when patients are incapacitated.
  • Testimonial injustice occurs when someone’s knowledge or experience is undervalued or dismissed due to prejudice, often based on stereotypes or assumptions about their credibility.
The development of the A2F (ABCDEF) bundle, which emphasizes pain management, early mobilization, and family engagement, to improve patient-centered outcomes.

The author emphasizes the importance of early patient mobilization and the inclusion of family members as part of the treatment plan to lessen the effects of Post-Intensive Care Syndrome (PICS) and delirium. Ely is a proponent of the A2F (ABCDEF) safety bundle, a set of best clinical practices, developed in collaboration with medical teams across the world, to improve care of those with critical illness both during and after their ICU stay. He acknowledges the vital roles played by professionals like physical therapists Polly Bailey and Chris Perme (Chapter 9), as well as the collaborative efforts of research groups at Houston Methodist Hospital, Intermountain Healthcare, Sutter Health, and the critical contributions of the Society of Critical Care Medicine, along with the guidance and cooperation from his mentors and peers, all of whom were instrumental in championing early patient movement and the comprehensive elements of the care package. Ely underscores that the components of the A2F bundle had been substantiated through scientific research, yet it was the united action of groups consisting of medical professionals and the patients' relatives that insisted on the utmost level of care, thereby igniting significant enhancements.

Context

  • Successful early mobilization often requires a coordinated effort from a multidisciplinary team, including doctors, nurses, physical therapists, and occupational therapists, to tailor activities to each patient's needs and capabilities.
  • The bundle is designed to be adaptable, allowing for updates and improvements as new research and clinical findings emerge, ensuring it remains relevant and effective.
  • Physical therapists like Bailey and Perme bring specialized training in movement and rehabilitation, which is critical for safely mobilizing patients who are often weak and vulnerable due to their critical conditions.
  • A not-for-profit health system recognized for its evidence-based approach to healthcare, Intermountain Healthcare frequently participates in research to develop and implement best practices in patient care.
  • The SCCM provides platforms for interdisciplinary communication and education, which are essential for the successful adoption and adaptation of the A2F bundle across different healthcare settings.
  • Professional organizations often play a key role in endorsing and disseminating best practices, providing resources and guidelines to support healthcare teams in implementing new protocols.
  • Research shows that effective pain management can reduce the incidence of delirium and improve recovery times, highlighting the importance of this component in the A2F bundle.

Ely concludes the book by sharing his journey to improve medical procedures in his Nashville intensive care unit and his ambition to expand these advancements worldwide. He emphasizes the importance of a united effort between critical care experts, patient advocates, relatives, and policymakers to ensure the sustained and effective implementation of care practices that are empathetic, tailored to the individual, and scientifically based.

The author's perspective evolved, leading him to adopt a holistic approach that prioritizes patient welfare over an exclusive reliance on advanced critical care techniques.

In this segment of the narrative, the author describes his transformation from a physician deeply engrossed in the complexities of sophisticated life-support machines to one who views each patient as a whole person.

Initially, the author focused on saving lives through advanced medical interventions, yet subsequently realized the unintended repercussions of extended periods of immobility and lack of consciousness.

During his initial years in medicine, Ely was enthralled by the opportunity to employ sophisticated medical technologies in critical care with the aim of preserving human lives. His determination to specialize in intensive care medicine was cemented by observing patients at Charity Hospital lose their battles to illnesses that would later be manageable, along with the difficulties of working with scarce resources. He fully embraced the method of heavily sedating and physically restraining patients within intensive care settings.

Other Perspectives

  • Relying heavily on advanced medical interventions may also diminish the role of palliative care, which is essential for improving the quality of life for patients with serious illnesses, particularly when interventions are no longer beneficial.
  • The term "manageable" can be subjective and varies across different healthcare systems, cultures, and individual patient circumstances.
  • Dealing with resource scarcity can provide valuable experience in crisis management and decision-making under pressure, which can be beneficial in a medical professional's career.
  • The decision to sedate or restrain a patient is typically made with the intention of maximizing patient survival and is often based on the best medical evidence available at the time.
Wes Ely's approach to critical care was profoundly altered by the serious head injury his daughter suffered, as well as by his involvement in the treatment of a patient referred to as Marcus Cobb in the intensive care unit.

Dr. Ely recounts the evolution of his career in medicine through a series of personal anecdotes. His steadfast commitment to saving lives led him to the understanding that his medical practices, especially the overuse of tranquilizers, might negatively impact his patients' well-being and possibly result in a diminished life experience. While caring for his daughter in the intensive care unit, he became aware of his deficiencies in providing empathetic care as a doctor, which led to a transformation in his viewpoint to reflect that of the patient's. He noticed that although the room's setup was conducive to physical healing, it failed to take into account the psychological health of the patients and their family members. The treatment given to Marcus Cobb, poised to receive a transplant, emphasized the necessity of acknowledging a patient's unique requirements that go beyond their health complications or deteriorating organs.

Context

  • The case of Marcus Cobb underscores the importance of tailoring medical care to individual patient needs, advocating for personalized treatment plans that consider the patient's life context and personal values.
  • Historically, the use of tranquilizers was more prevalent due to a lack of awareness about their long-term effects. Advances in research have highlighted the importance of balancing sedation with the need for patients to remain as alert and engaged as possible.
  • Traditional medical training has often prioritized technical skills over emotional intelligence, though there is a growing recognition of the need to balance both.
  • Intensive Care Units are primarily designed to support critical medical interventions, focusing on life-saving equipment and procedures. This often results in a sterile, clinical environment that can be intimidating and stressful for patients and families.
  • Empathy in healthcare involves understanding and being sensitive to the emotional states of patients, which can improve patient satisfaction and outcomes. It requires healthcare providers to see situations from the patient's perspective.

The author is dedicated to increasing recognition of the psychological and physiological difficulties that may manifest following a patient's experience in intensive care.

Ely examines the factors that contribute to advancements in healthcare by asking a simple question: "What leads to a higher death rate in the elderly?" Wes Ely embarked on a two-decade quest to comprehend the neurological complexities that arise, recognizing that the cause was not respiratory failure but rather the impact of cognitive disarray on patients' well-being following their recuperation from intensive care.

The author's groundbreaking work has broadened our understanding of how frequently delirium occurs in intensive care settings, leading to the development of tools like the CAM-ICU that assist in its early detection.

Ely underscores the importance of his ongoing research into delirium and its associated post-intensive care syndrome, noting that the presence of delirium can signal an increased likelihood of death and a deterioration in cognitive abilities, emphasizes the importance of regularly assessing patient awareness, and promotes the initiation of physical activity at an early stage for patients in intensive care units. He details the work of Dr. Thomas Petty, who encountered significant resistance from the critical care community because of his support for minimizing sedatives and enhancing empathetic care in the ICU; of nurse Polly Bailey, who fervently supported the involvement of physical therapists directly at the patients' bedsides; and of Dr. Richards Griffiths, who meticulously measured the deterioration of muscular tissue in patients with critical illnesses; these pioneers contested the status quo and markedly advanced the treatment of patients. Ely was inspired to design and carry out extensive randomized, controlled trials to prove that deep sedation, rather than being helpful, was the cause of many of his patients' problems.

Context

  • Delirium is an acute, often sudden, change in mental status characterized by confusion, disorientation, and an inability to focus. It can fluctuate in severity and is common in hospitalized patients, especially in intensive care units (ICUs).
  • By frequently evaluating awareness, medical staff can identify and mitigate risks such as falls or self-harm, which are more likely if a patient is confused or disoriented.
  • Initiating physical activity early in ICU patients can help prevent muscle atrophy, improve circulation, and reduce the risk of blood clots, which are common complications in immobilized patients.
  • In critical illness, muscle wasting is a common and severe complication due to prolonged immobility, inflammation, and inadequate nutrition, leading to significant loss of muscle mass and strength.
  • The medical community often exhibits resistance to changing established practices, especially when new methods challenge long-held beliefs. This resistance can slow the adoption of innovative treatments that may benefit patients.
  • These trials are considered the gold standard in clinical research, providing high-quality evidence on the effects of interventions like sedation practices in the ICU.
The author collaborated with other healthcare professionals in promoting the implementation of the A2F bundle, aiming to reduce the incidence of delirium and improve patient-centered outcomes.

Ely understood that progress in critical care medicine hinged on the support and involvement of his fellow professionals. He worked alongside therapists to help patients regain mobility, united with neuroscientists to carry out studies involving brain scans, worked in conjunction with psychologists to create cognitive rehabilitation therapies, and partnered with music experts to investigate how music can alleviate stress associated with hospital stays.

Context

  • assess, prevent, and manage; Early mobility and exercise; and Family engagement and empowerment.
  • The collaboration is grounded in evidence-based practice, where research supports the benefits of mobility interventions in improving patient outcomes in critical care settings.
  • Advances in neuroimaging technology provide more detailed insights into brain activity and structure, enabling researchers to study the impact of critical illness on the brain more effectively.
  • Incorporating music into patient care aligns with a patient-centered approach, focusing on holistic treatment that considers emotional and psychological needs alongside physical health.
The author is deeply involved in educational initiatives that promote a shift to holistic, patient-centered care within intensive care environments.

Ely details how a majority of intensive care facilities across the country have adopted the A2F bundle. After attending a quality-improvement conference, he worked alongside Dr. Donald Berwick, founder and CEO of the Institute for Healthcare Improvement (IHI), to launch a range of workshops, seminars, and educational events across the country. These gatherings were designed to spread knowledge and increase consciousness among healthcare workers, encompassing relatives, medical personnel, and different therapists, regarding the benefits of the innovative treatment approach for patients receiving critical care. Wes Ely credits his peers, including Mary Ann "Jett" Barnes-Daly, for their significant contributions to the nationwide embrace of the A2F bundle. He also champions a global initiative for personalized care in ICU settings, grounded in robust scientific evidence and tailored to meet the unique needs of each patient. He strongly advocates for the infusion of empathy and respectful treatment across all areas of intensive medical care, communicating with the public and healthcare workers alike through the narrative of his own victories and challenges. He offers a hopeful perspective and a comprehensive strategy for beneficial change that serves not only patients and their families but also healthcare providers and the wider medical community.

Context

  • Dr. Berwick is a prominent figure in healthcare improvement, known for his work in promoting quality and safety in healthcare systems. His collaboration with Ely suggests a strong emphasis on systemic change and innovation in healthcare practices.
  • assess, prevent, and manage; Early mobility and exercise; and Family engagement and empowerment.
  • These conferences are gatherings where healthcare professionals share best practices, innovations, and strategies for improving patient care. They are essential for continuous improvement and keeping up with advancements in medical science and practice.
  • The A2F bundle is a set of evidence-based practices designed to improve outcomes for ICU patients. It includes strategies for assessing, preventing, and managing pain, agitation, and delirium, as well as promoting early mobility and family engagement.
  • Mary Ann "Jett" Barnes-Daly is a healthcare professional known for her work in critical care and quality improvement, contributing to the development and implementation of the A2F bundle.
  • Ely's use of personal narratives aligns with the principles of narrative medicine, which emphasizes the importance of storytelling in healthcare to foster empathy and understanding between patients and providers.
  • Implementing the A2F bundle can lead to more efficient use of resources, potentially reducing the length of ICU stays and associated healthcare costs. This efficiency benefits the healthcare system as a whole.

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