Suboptimal End-Of-Life (EOL) Care in The Intensive Care Unit (ICU)

Suboptimal End-Of-Life (EOL) Care in The Intensive Care Unit (ICU)

Reason For Sub Optimal End of Lie Care in the ICU

Barrier From the Health Care Worker Prospective

There are numerous potential roadblocks to discussing goals of treatment with families and their patients. Health care workers may feel that they lack the necessary skills or knowledge to initiate these discussions (You et al., 2015). They may also feel uncomfortable to discuss the end-of-life problems with patients and their relatives, especially if they are still relatively young and appear to have a good quality of life (Wilson et al., 2005). Health care workers may feel they are being too pushy or demanding if they bring up the topic of discussion about prognosis and treatment options. They may be afraid to ask patients or their loved ones what their wishes will be in an emergency because it could cause guilt or distress if they cannot communicate their wishes (You et al., 2015). Such discussion could also make them feel like they are abandoning the patient or giving up on them (Silliman et al., 2014). Suppose patients and families do not express interest in discussing treatment options. In that case, health care workers may assume that they do not wish to have such discussions and therefore refrain from initiating the conversation (Wilson et al., 2005).

Health care workers may also assume that patients and their families assume they know what the patient and family will want and do not initiate the goal of care discussion (Wilson et al., 2005). Health care workers may be aware of a patient’s advance directive but feel that it is unlikely to be relevant because they do not appear to have any life-limiting conditions (Wilson et al., 2005). Or, they may be aware that their patient has an advance directive but does not know where the document is located or what it contains.

Health care workers are responsible for providing patients with information about their health issues and treatment options, but this information must also include clear explanations of the benefits and burdens of each treatment option (Wilson et al., 2005). When patients receive this information, they can make fully-informed decisions based on their value. Suppose a patient is not able to choose a particular treatment option. In that case, they can specify who in their family should be included in the process of decision-making and when in life the course of their illness they would like their family to be made aware of their health condition (Wilson et al., 2005).

For both the patient and the care practitioner, the objective of the therapy talk is critical. To make rational choices regarding their care, patients must have a comprehensive grasp of their diagnosis and the treatments that are accessible to them. According to health care experts, clients must be provided with the necessary information to make these decisions. However, since both patients and their families may be unaware of the value of having this dialogue, health care personnel frequently do not start the purpose of service conversation (Wilson et al., 2005).

2 Barriers from The Patient and Family Perspective

Surrogates must make difficult judgments when patients cannot engage in the decision-making process. The clinical literature contains many examples where surrogate caregivers for critically ill patients have been inadequately prepared and supported in this role (You et al., 2014). Most studies on advance care planning in ICUs have focused on surrogate decision-making for patients with do-not-resuscitate orders rather than goals of care discussions (Aleksova et al., 2016). Studies that have looked specifically at surrogate decision-making for patients focusing on care have found that surrogates often feel unprepared in making decisions and have little knowledge on patient’s prognosis and treatment options (You et al., 2014). In a qualitative study that involved family members with patients in the ICU, 37% of participants felt that they had no enough information to make decisions on behalf of their loved ones (Aleksova et al., 2016).

Surrogates frequently express a lack of knowledge regarding the patient’s prognosis and treatment alternatives, in addition to feeling unprepared. Surrogates for patients in the ICUs typically feel ignorant about their prognosis (49%) and treatment alternatives (44%) according to one study (12). Other studies have found similar results, notably that relatives who cannot make decisions for their loved ones in the ICU perceive a lack of information about their loved one’s prognosis and treatment options (Aleksova et al., 2016). According to Aleksova et al., surrogates felt more insufficiently educated about the patient’s diagnosis, clinical features, and intended results with various therapies than the patients or professionals’ caregivers.

There is poor communication and lack of knowledge amongst caregivers and patients in the EOL treatment decision-making process. These results indicate that ICU patients and their surrogates will not always be well-informed or ready to handle EOL choices, implying that physicians and carers need to communicate more effectively (Aleksova et al., 2016). Furthermore, family members might require additional knowledge regarding the diagnosis and therapy alternatives to feel comfortable initiating decisions about the future of their family members. If a client has a bad outlook, for example, professionals should tell them about pain management and other end-of-life options that could be beneficial.

The impediments to aim talks observed in this study imply that adequately explained among clients, relatives, and doctors. Furthermore, more research is wanted to create treatments that will assist surrogates in feeling knowledgeable and equipped to act on behalf of the family members. Clinicians who communicate this information to surrogates could also ask questions on these topics. Another option would be to provide more support and education to surrogates to increase their knowledge about EOL decision-making.

The Complexity of Substitute Decision Maker

1.      Difficult picking a Substitute decision-maker

Patients who don’t have an advance instruction or a healthcare proxy often don’t know who should speak for them. In such cases, the decision of who will speak for the patient is often left to hospital staff or friends and family members who may be struggling with their emotional turmoil. For example, in a study of family members who had been asked to make decisions for a critically ill loved one, nearly two-thirds felt unprepared or uncomfortable with the responsibility (Quinn et al., 2017). Family members may also disagree about what the patient wanted, leading to conflict and further frustration.

In addition, surrogates may have difficulty interpreting medical information and making decisions about complex treatments. For example, a study of surrogates caring for patients with traumatic brain injury found that many had difficulty understanding information about the patient’s prognosis and treatment options (Quinn et al., 2017). Because of this, surrogates and medical personnel may disagree over the best course of action.

The difficulty of making a decision when the substitute decision-maker is a trustee of the government

Publicly conserved patients present a unique challenge for surrogate decision-makers. In order to make resolutions on the account of a patient under government cared, surrogates must often navigate complex bureaucracies and legal systems. This can be very difficult, especially if the surrogate is unfamiliar with the legal process or the medical terminology used in court proceedings. For example, in a study of surrogate decision-making for organ donation after cardiocirculatory death, both surrogates and healthcare providers reported that the legal process was difficult to navigate and often frustrating (Kryworuchko et al., 2016).

Also, surrogates may lack access to details concerning the patient’s potential health outcomes during legal proceedings because hospital staff is not always comfortable sharing this information with surrogates who have no medical background. In one study, for example, surrogate decision-makers reported being surprised by prognostic information during court proceedings and said that they would have preferred to have had more time to discuss the information with healthcare providers (Quinn et al., 2017).

2.      Difficult of the substitute decision-maker of making the goal of care decision

Surrogates may also have difficulty making decisions about the best course for a severely sick patient. Should the goal, for example, be to prolong life at any costs, even if it means the patient won't be able to return home or have any quality of life? Or is it more important to focus on providing comfort and palliative care, even if it means that the patient will no longer be alive in a few days or weeks? These complicated questions require surrogates to consider complex information and make difficult tradeoffs. For example, a study of surrogates of patients who had died in the ICU found that many felt that they had made the wrong decision about the goal of care (Quinn et al., 2017).

These are just a few examples of surrogate decision-makers’ challenges when making decisions for a critically ill loved one (Quinn et al., 2017). Several factors can contribute to poor surrogate decision-making, including lack of data about the patient’s treatment and prognosis choices, inability to understand medical information, lack of access to information during legal proceedings, or conflicting opinions among family members. Addressing these challenges will require collaboration between surrogates, healthcare providers, and legal professionals. If there is adequate communication and training on the patient's illness and potential therapies, surrogates will be more equipped to make knowledgeable judgements that represent the patient's needs.

Part 3: Barriers to the integration of palliative care in the ICU

There are numerous obstacles to palliative care inclusion inside the ICU. The first roadblock is a shortage of knowledge about palliative care amongst medical providers. Many clinicians are hesitant to provide palliative care because they assume it is reserved for patients near death (Kyeremanteng et al., 2020). Clients may well not obtain the hospice support they deserve as a consequence. Dillworth et al. observed, for instance, that doctors rarely bring up the subject of end-of-life care with patients and caregivers, even when the clients are terminally sick.

The additional stumbling block is the ICU’s shortage of palliative capabilities. Only a few healthcare professionals have received particular training in hospice care, and palliative facilities have a limited number of rooms. Clients may be relocated to other hospitals or units due to this, which can be inconvenient and unpleasant for patients and family members. For instance, Alshehri et al. (2020) discovered that a shortage of palliative care facilities in the ICU was an essential aspect in implementing palliative care into the department. This can make patients and family members feel rushed and stressed at an already stressful moment.

The attitude of healthcare practitioners regarding dying is the third obstacle. Many clinicians believe it is their responsibility to save each person’s life, irrespective of the expense or the severity of the patient’s pain. Patients may be kept on life support even though they are anticipated to die, or they may be given therapies that may not enhance the quality of life. For example, Suen et al. (2020) discovered that several relatives believed their physicians were more concerned with saving the patient’s life than with guaranteeing that they would have a high quality of life. This is aggravating for families because it stops people from making the greatest choice for their loved ones.

The Consequences of Poor End of Life Care in the ICU

Consequence resulting from the poor purpose of care discussion

One of the most serious issues that develop during end-of-life care is poor end-of-life (EOL) care in the intensive care unit (ICU); it is associated with delirium and poor surrogate decision-making and has been a common event (Suen et al., 2020a). In a study by White et al., end-of-life discussions in the ICU were associated with higher family satisfaction and low rates of surrogate discord. Secunda et al. discovered that patients who received documents about EOL treatment in their medical records before the termination of life support had much reduced family surrogate discord and better family satisfaction in a retrospective cohort study.

1.      Decreased quality of care, particularly end-of-life care (EOLC).

Decreased quality of care can be defined as suboptimal care or provision of care that does not meet the patients’ needs. In the context of EOLC, decreased quality of care may lead to a shortened life or an experience that is less than optimal (Secunda et al., 2020). Suen et al. found that lower care quality was significantly associated with less family satisfaction with end-of-life (EOL) care outside the hospital setting (Suen et al., 2020a). Turnbull et al. also showed decreased surrogate decision making in favor of life support when discussing prognoses that are not documented in the medical record. Suen et al. also reported that poor surrogate decision-making was associated with family satisfaction. Similarly, Secunda et al. found that families who had their concerns documented in the medical record before the withdrawal of life support had significantly lower family surrogates’ surrogate discord and higher family satisfaction.

2.      Unwanted intervention medical intervention resulting in suffering

Unwanted medical intervention can be defined as medical care or treatment that the patient does not want or is unnecessary. Emiloju et al. found that patients who did not have a do-not-resuscitate (DNR) order was more likely to experience unwanted intervention in the ICU, which often resulted in suffering. This suffering could be from medical procedures or treatments that the patient found invasive and painful. All three articles identified unwanted intervention due to poor goal of care discussion. Turnbull et al. found that when the prognosis was not documented in the medical record, there was an increase in life support interventions. Emiloju et al. also showed that patients who did not have a DNR order were more likely to experience unwanted intervention in the ICU. Lastly, Secunda et al. found that families who had their concerns documented in the medical record before a withdrawal of life support had significantly lower family surrogates’ surrogate discord and higher family satisfaction.

3.      Poor understanding of the prognosis and diagnosis

Poor prognosis and diagnosis can be defined as patients and families not fully understanding the prognosis and diagnosis. This leads to a higher level of stress, anxiety, uncertainty and fear. All three articles identified the poor understanding of prognosis and diagnosis due to poor goal of care discussion. Wilson et al. demonstrated that when families had concerns documented in the medical record, they reported a greater understanding of prognosis and diagnosis. Secunda et al. found that families who had their concerns documented in the medical record before the withdrawal of life support had significantly lower family surrogates’ surrogate discord and higher family satisfaction. Finally, Turnbull et al. showed that increased decisional conflict was significantly associated with increased use of life support interventions and decreased surrogate decision making in favor of life support when discussing prognosis is not documented in the medical record.

Consequence of the Complexity of Substitute Decision Maker in the ICU

The complexity of surrogate decision-making is the second factor contributing to poor EOL treatment in the ICU. Surrogates might be friends, family members or medical substitutes. Surrogate decision-making is often driven by the idea of substituted judgment, which assumes that if surrogates were intelligent to participate in the verdict-making process themselves, they would make a reasonable conclusion about what the patient would want. For surrogates, this principle is controversial. Instead of relying on substituted judgment, surrogate decision-makers frequently consider what the patient would desire if they could make the decision themselves (23). This results to increase family conflict and increased incidence of anxiety, depression for patients and substitute decision-makers.

1.      Increase family conflict

The literature has consistently shown that family conflict is a common consequence of ICU surrogate decision-making. In one study, Scheunemann et al. (2019) found that family members frequently disagreed about the best course of action for their loved ones. This disagreement often led to increased stress and tension within the family. In a more recent study, Suen et al. (2020a) found that surrogate decision-makers who were uncertain about what their loved one would want experienced increased stress and anxiety levels. In another study, Turnbull et al. (2019) found that family members frequently disagreed about the best course of action. Differences in surrogate preferences and values, as well as arguments concerning the patient’s prognosis, were the most common causes of disagreement. These disagreements often led to increased stress and tension within the family.

2.      Increased incidence of anxiety, depression for patient and substitute decision-makers

In addition to family conflict, there is also evidence that anxiety and depression are common among patients and surrogate decision-makers in the ICU. For example, Quinn et al. (2017) found that patients approaching the end of life in the ICU had higher rates of depression and anxiety than patients who were not nearing the end of life. In addition, surrogate decision-makers were also found to experience higher rates of depression and anxiety in a recent study (Wilson et al., 2015). For example, surrogate decision-makers who were uncertain about what their dear one would want had greater anxiety and sadness levels. The findings show the significance of providing support to patients and surrogate decision-makers in the ICU.

Implement Strategies to Facilitate, More Time-Responsive GOC Discussions

The use of a validated scoring system, such as the SOFA score or the Acute Physiology and Chronic Health Evaluation II (APACHE II) score, can help to provide an objective measure of a patient’s clinical status and prognosis, which can then be used to inform timely discussions about goals of care (Orr, 2020). For example, a daily prognostic assessment of the patient’s mortality risk may serve as a trigger to facilitate earlier GOC discussions (Orr, 2020). Also, the use of validated scoring systems for patients with “do not resuscitate” (DNR) orders, such as the Richmond Agitation-Sedation Scale (RASS), may facilitate timely discussions related to GOC (Orford et al., 2019; Orr, 2020). Nurses and physicians often overestimate an individual patient’s prognosis, even in patients who are critically ill (Shickel et al., 2019). Thus, standardizing prognostic assessments can help to facilitate earlier discussions about GOC.

The use of mortality prediction scores such as “DeepSOFA: A Continuous Acuity Score for Critically Ill” (Shickel et al., 2019, p.1) can help the HCP during GOC discussions in clarifying the patient diagnosis and prognosis. DeepSOFA is a machine learning algorithm that uses clinical data to predict mortality in critically ill patients (Shickel et al., 2019). The DeepSOFA score has been found to be more accurate in predicting mortality than the APACHE II score (Shickel et al., 2019). The “DeepSOFA” score can be used to better quantify clinical status during daily rounds, facilitating earlier GOC discussions (Shickel et al., 2019). For example, DeepSOFA is a continuous acuity score, which is not a prognostic predictor but can provide a metric of patient status during daily rounds and serve as a trigger to facilitate GOC (Shickel et al., 2019). Another way to implement strategies to facilitate more time-responsive GOC discussions by implementing daily prognostic assessments is to implement the Clinical Frailty Scale (Orford et al., 2019). The Clinical Frailty Scale has been found to be an accurate measure of mortality risk in critically ill patients (Orford et al., 2019). Additionally, communication training curriculums have successfully improved communication between HCPs and SDMs during GOC discussions (Orford et al., 2019; Simpson et al., 2019).

Intervention To Help Substitute Decision Maker

When a patient is reaching the end of their life and is unable to make decisions on their own, a surrogate decision-maker is chosen to act on their behalf. This can be a difficult task, as there are many factors to consider when making care decisions. A study published in the Journal of Palliative Medicine looked at how best to support surrogates in the ICU. The study found that providing support to surrogates through a palliative care consultation service improved decision making and increased patient satisfaction. The consultation service helped surrogates better understand the patients’ care goals and made it easier for them to make decisions that aligned with those goals.

Intervention To Improve SDM Decision Making

1.      Developing a decision aid to assist SDMs in setting goals of care for patients with traumatic brain injuries

According to Emiloju et al. (2020), a decision aid is an intervention that helps individuals make informed decisions. It is a structured tool that provides information in a clear and concise format, intending to facilitate decision making” (p. 433). In their study, Emiloju et al. (2020) investigated whether using a decision aid could help surrogates set goals of care for patients with traumatic brain injuries. They found that the use of the decision aid helped strengthen communication between surrogate and health care team, resulting in improved decision making around patient treatment. Patients suffering from traumatic brain injuries often have a poor prognosis, and difficult choices need to be made about their care. In this situation, a decision aid can assist the SDMs in ensuring that the patient's desires are honored and that the best possible treatment is provided.

Intervention to improve SDM decision making

Intervention to improve SDM decision-making can also be used to evaluate such tools and frameworks for their acceptability and feasibility so that they can be positively used to contribute in GOC discussions for a patient, families, SDM, and HCP (Muehlschlegel et al., 2020). The goal of Muehlschlegel et al. (2020) was to assess the effectiveness and feasibility of a tool created by an interdisciplinary team meant to help surrogate decision-makers set goals of care for their loved ones. The investigators found that the decision aid helped strengthen communication between SDMs and health care teams, resulting in improved patient treatment decisions. However, they also found it difficult to create incentives for health care teams to use the decision aid. Quinn et al. (2017) found that an intervention to improve SDM decision-making in the setting of goals of care for patients with the chronic obstructive pulmonary disease could be effective, but the investigators also discovered the need for further training and education for surrogates.

2.      Develop working groups with representatives from all stakeholders

Developing working groups with representatives from all stakeholders can help evaluate and continuously improve the methods of implementation (Scheunemann et al., 2019). Scheunemann et al. (2019) found that using a tool created by an interdisciplinary team designed to help SDMs make decisions was effective and feasible, but the investigators also reported that more work is necessary to continually improve its implementation methods. An example of such a working group is the National Quality Improvement Program for End-of-Life Care in the ICU (Quinn et al., 2017). The purpose of this program was to develop and evaluate an intervention designed to improve communication between surrogates and health care teams, resulting in improved decision-making about patient treatment (Quinn et al., 2017). Patients suffering from chronic obstructive pulmonary disease often have a poor prognosis, and difficult decisions need to be made about their care (Quinn et al., 2017). The intervention developed by Quinn et al. (2017) successfully improved SDM decision-making, but more work is needed to ensure that it is successfully implemented in clinical practice.

3.      Improve a comprehensive, collaborative, empathetic approach

Improving a comprehensive, collaborative, empathetic approach can help promotes open lines of communication between the health care providers and family (Wilson et al., 2015). Early, scheduled, and frequent discussions led by APNs help in improving patient support and SDM establishing GOC (Wilson et al. 2015). According to Wilson et al. (2015), all members of the health care team should work together to improve the quality of GOC discussions. Wilson et al. (2015) also identified strategies for improving communication during these discussions, including making sure all members of the health care team are present during the discussion and using open-ended questions, paraphrasing, and reflective listening. Furthermore, they stress the importance of having a compassionate and collaborative approach that promotes open lines of communication between the health care providers and family (Wilson et al., 2015).

Intervention To Help the Choice of Substitute Decision Maker and Help Substitute Decisions Maker, Make Patient-Centered Care

An intervention designed to help surrogate decision-makers make better patient-centered decisions about care was found to be effective and feasible, but more work is needed to improve its implementation methods (Scheunemann et al., 2019). The study by Scheunemann et al. (2019) looked at using a tool created by an interdisciplinary team designed to help SDMs make decisions. The investigators found that the tool was effective and feasible, but more work is still necessary to improve its implementation methods (Scheunemann et al., 2019). Patients suffering from chronic obstructive pulmonary disease often have a poor prognosis, and difficult decisions need to be made about their care (Wilson et al., 2015). Wilson et al. (2015) discovered that members of the health care team should collaborate to guarantee optimal communication during GOC meetings.

Intervention To Improve Palliative Care In ICU

Intervention To Improve Palliative Care is an intervention that was successful in improving SDM decision making, but more work is needed to ensure that it is successfully implemented in clinical practice (Quinn et al., 2017). The study by Quinn et al. (2017) looked at using a tool created by an interdisciplinary team designed to help SDMs make decisions about EOL care. The investigators found that the tool was effective and feasible, but more work is still necessary to improve its implementation methods (Quinn et al., 2017). This shows that additional work is needed to guarantee that treatments aimed at assisting SDMs in making better patient-centered care decisions are implemented successfully in clinical practice. To offer the best care for patients reaching the end of their lives, all members of the health-care team must collaborate.

Conclusion

The literature reports suboptimal EOL care in the ICU. There are many barriers to providing optimal EOL care, including suboptimal SDM decision making, complexities of surrogate decision-making, and poor integration of palliative care into all aspects of patient care (Emiloju et al., 2020). Interventions that focus on helping surrogates make better patient-centered decisions about care need to be successfully implemented to improve the quality of EOL care for ICU patients. The investigators found that the tool was effective and feasible, but more work is still necessary to improve its implementation methods (Quinn et al., 2017). This suggests that more work is needed to ensure that interventions designed to help SDMs make better patient-centered decisions about care are successfully implemented in clinical practice settings. This study provides valuable information about the barriers to providing optimal EOL care in the ICU. The investigators identified three common themes that contribute to poor EOL care in the ICU: barriers to the goal of care discussion, complexities of surrogate decision-making, and poor integration of palliative care into the ICU (Emiloju et al., 2020). These themes present an area that needs further investigation to improve EOL care in the ICU. This study has several limitations, including that it was conducted with a very small group of patients and surrogates. Larger sample size would provide more accurate results that suggest how EOL care could most effectively be improved for ICU patients.

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