End-of-Life Nursing Care

The 19th century saw death primarily caused by infectious diseases like smallpox, diphtheria, and cholera. Medical interventions were limited to symptom management, and death often occurred suddenly, within days of illness onset. Life expectancy was approximately 50 years. The vast majority of deaths took place at home, with care provided by family members rather than healthcare professionals. This era presented a stark contrast to modern end-of-life care, characterized by quicker deaths in familiar environments with fewer options to prolong life. The lack of advanced medical interventions meant that contracting infectious diseases frequently resulted in death.

The 20th century witnessed a significant paradigm shift in medicine, moving beyond solely providing comfort measures towards actively curing underlying diseases. This transformation stemmed from remarkable advances in medicine, education, and technology. The introduction of antibiotics and immunizations drastically altered mortality rates, particularly concerning infectious diseases which were previously certain death sentences. The result was increased life expectancy and declining infant mortality rates – strong indicators of national health. The location of death also shifted, with fewer people dying at home under solely familial care. Instead, professional healthcare workers assumed a more prominent role. Furthermore, the predominant causes of death transitioned from infectious diseases to chronic conditions such as heart disease and stroke, marking a crucial change in how end-of-life care was approached.

Modern medicine's ability to intervene in disease progression, extending lives and improving outcomes for conditions like breast cancer, has created a new set of challenges. The ability to significantly delay or manage the natural course of illness often makes it difficult to determine when to transition away from curative treatment and towards end-of-life care. This difficulty is often exacerbated by the uncertainty surrounding prognoses, leaving patients and families grappling with challenging decisions. Although literature suggests a preference for home deaths, factors such as concerns about burdening family and doubts about the quality of home care often influence decisions regarding end-of-life care settings. Studies by Gott et al. (2004) and Catt et al. (2005) highlight the complexity of this choice, revealing that, despite often preferring home care in principle, many older adults (>75 years) opt for inpatient hospice settings, illustrating the nuanced nature of end-of-life preferences.

Beyond the physical comfort crucial in end-of-life care, patients consistently express a deep need for information about their illness. This demand extends beyond simple medication details to encompass expectations concerning the illness' progression, test results, and the overall trajectory. Nurses, while not responsible for delivering terminal prognoses, play an essential role in providing readily accessible information. The ability to address patient questions openly and honestly, even by acknowledging uncertainty and seeking answers when necessary, is paramount. This open approach helps cultivate a strong nurse-patient relationship which is essential for delivering compassionate care. It’s also crucial to remember that planning and preparing patients and families for the what will happen is a pivotal component of quality end-of-life care, allowing them to feel informed and actively involved in the care process. The researchers Glaser and Strauss (1968) introduced the concept of three distinct illness trajectories: surprise, expected, and entry-reentry deaths, providing a framework for understanding how individuals experience their final stages of life.

A fundamental aspect of providing effective end-of-life care is understanding the various illness trajectories patients experience. Glaser and Strauss (1968) identified three key trajectories: surprise deaths (unexpected, such as accidents), expected deaths (resulting from a terminal illness with anticipated progression), and entry-reentry deaths (characterized by periods of hospitalization interspersed with periods of improved health). Recognizing these trajectories allows nurses to better anticipate patient needs and tailor their approach to care. This understanding is not merely theoretical; it informs the practical application of nursing care. It allows nurses to better understand and address a patient's concerns, ensuring that the care provided is both relevant and compassionate. The knowledge of various illness trajectories is particularly important because it allows for a more comprehensive understanding of patient behaviors and anticipated needs. This understanding should be utilized in care planning to provide more effective and personalized support.

While nurses might not be responsible for delivering prognoses (e.g., "How long do I have?"), they should be prepared to address patients' questions about their future ("What will happen?"). This involves educating patients and their families about various aspects of their illness, including physiological and psychological symptoms, changes in activities of daily living, and anticipated care needs. This educational process is ongoing and extends throughout end-of-life care. It is vital for patients to be fully informed of the course of their illness, not just from a mortality perspective, but also from the perspective of the impact on their daily lives. This proactive approach is especially significant for patients and families to make informed decisions, promoting the best possible quality of life for the patient. The nurse is ideally placed to provide continuous education and support throughout the patient's journey.

The text highlights two contrasting trajectories: sudden death and organ failure. Sudden death, often unexpected, presents unique challenges. Nurses must provide reassurance and support to unconscious patients during procedures like CPR, being mindful of what's said, and ensure respectful post-mortem care. Open communication with the family is crucial, acknowledging the shock and emotional distress associated with an unexpected death. In contrast, organ failure presents a more gradual decline with periodic exacerbations leading to hospitalization. Even experienced physicians often struggle with prognostication in such cases because of the unpredictable course, making it challenging to determine when a patient is truly nearing end-of-life. The potential for sudden death in organ failure is heightened, making advanced care planning and discussions regarding advance directives even more crucial. Educating patients and families about illness progression is vital, carefully balancing information with hope.

The text defines palliative care, according to the World Health Organization, as an approach improving the quality of life for patients with life-limiting illnesses and their families by preventing and relieving physical, psychosocial, and spiritual suffering. Palliative care is presented as an overarching philosophy, encompassing various comfort-focused aspects of care. In contrast, hospice care is described as a more specialized program, typically for patients with a prognosis of six months or less, focusing entirely on comfort-oriented care, and requiring patients to forgo life-sustaining or curative treatments. The text notes that the distinction between palliative and hospice care has become more significant over time, with palliative care evolving into a distinct healthcare specialty and delivery system. Over half of US hospitals with over 100 beds now have a palliative care program, illustrating the widespread adoption of this approach to end-of-life care. The increase in hospital-based palliative care programs since 2000 is substantial—a 138% rise, according to the Center to Advance Palliative Care (2011).

Hospice care, while beneficial, presents challenges, particularly for patients with non-cancer illnesses. The transition to hospice is often difficult due to the variability in illness trajectories. Many patients enroll late or not at all, leading to extensive research on barriers to enrollment. These barriers are multifaceted, encompassing patient, provider, and system-related factors. A key issue is the difficulty in confidently determining a prognosis of six months or less for patients with non-cancer conditions, unlike the often clearer prognosis for cancer patients. For illnesses such as heart failure, curative treatments might simultaneously provide symptom management, creating a further barrier. These curative treatments are often not covered under Medicare hospice benefits, leading some patients to forgo hospice care. Therefore, while hospice is ideal for many nearing end-of-life, the suitability of hospice care can depend on factors specific to the individual’s illness and treatment.

The text emphasizes the key difference between palliative and hospice care: while hospice requires forgoing life-sustaining treatments and focusing solely on comfort, palliative care allows for both palliative and curative treatments simultaneously. This distinction is illustrated using a visual representation (Figure 4.1, not included here) showing a clear demarcation between aggressive medical treatments and hospice care for cancer patients, highlighting that hospice is often initiated when curative treatments become ineffective and/or cause excessive burdens. In contrast, this transition point is less defined for patients with non-cancer illnesses. The increased availability of palliative care programs, both inpatient and outpatient, in hospitals and home health agencies, showcases its growing importance in managing serious illness across various healthcare settings. The ability to provide continuous care, particularly with the same nurse, enhances patient experience and consistency when palliative care is integrated with home hospice programs.

Defining goals of care involves identifying the outcomes patients prioritize most concerning their illness. It's about understanding what matters most to the patient, what they hope to achieve, and what they value in life. This process requires considering whether quality of life should be prioritized over quantity, even if it means potentially shortening lifespan. Alternatively, patients might choose to pursue all available medical treatments to extend life, regardless of potential discomfort. Clinicians play a vital role in helping patients clarify their goals of care, especially when patients haven't had the opportunity to reflect on these questions due to recent diagnosis or illness severity. This often involves collaboration with family members, although this can be complicated if patient and family goals diverge significantly. The process requires an accurate understanding of the patient's illness severity, prognosis, and life expectancy.

While patients often desire prognostic information, accurate prognostication remains a considerable challenge for physicians. Christakis (1998) highlights the subjective and variable factors influencing physician prognostication, and Lamont (2005) points to the lack of consensus in defining "the end of life" as a contributing factor to prognostic uncertainty. This uncertainty is particularly pronounced with chronic illnesses characterized by exacerbations and periods of improvement, making it difficult to pinpoint the point when a patient is truly nearing the end of life. Studies demonstrate that even experienced clinicians tend to overestimate survival time, especially for patients with chronic, end-stage diseases. For instance, a study by Levenson et al. (2000) showed that even three days before death, physicians often overestimated the six-month survival rate of heart failure patients. Further research by Christakis & Lamont (2000) found that only 20% of physicians provided accurate prognostic predictions (within 33% of actual survival) for a sample of patients with both cancer and non-malignant diseases. The high risk of sudden death in certain populations, such as patients with heart failure (Lloyd-Jones et al., 2009), exacerbates this prognostic uncertainty.

Literature reveals variability in patient preferences regarding prognostic information. While some studies show patients with advanced cardiac disease, for example, are aware of poor prognosis but avoid explicit discussions of mortality (Gott et al., 2008; Horne & Payne, 2004), others indicate a strong desire for prognostic information (Rogers et al., 2000). A study by Lowey and colleagues (2013) found that patients generally want to be informed about their prognosis when their illness becomes life-threatening so that they can re-evaluate their goals of care and plan for their future. The degree of uncertainty regarding future quality of life seems to be a more significant concern for many patients than a precise prediction of mortality. This highlights the importance of open and honest communication about both the prognosis and the impact of the illness on the patient’s quality of life. Ultimately, understanding individual patient preferences is crucial for tailoring communication effectively and supporting their decision-making process.

Clinicians must carefully weigh the benefits and burdens of treatment for each patient. The decision-making process should consider the potential positive effects against any negative consequences. For example, a patient with advanced cancer might undergo a clinical trial despite uncertain outcomes if extending life is their primary goal. Conversely, if the negative side effects of chemotherapy outweigh any potential benefit, the burden of treatment might be deemed excessive and it may be time to shift focus toward comfort care. This assessment of benefits and burdens should be periodically reviewed as the patient’s illness progresses, allowing for adjustments to goals of care based on the changing circumstances. This necessitates a dynamic approach to patient care that adapts to their individual needs, preferences, and the ongoing evolution of their condition.

The section provides a general overview of commonly used medications for pain management, focusing on the World Health Organization's (WHO) three-step analgesic ladder for cancer pain in adults. This approach guides clinicians in selecting analgesics based on pain level, administering different classes of medications in a specific order. While the text acknowledges the complexity of pain management pharmacology, it emphasizes the nurse's role in evaluating patient responses to these interventions, rather than prescribing. This highlights the nurse's essential role in monitoring the effectiveness of medications and assessing for any adverse effects. The text does not delve into specific drug dosages or complex pharmacological algorithms but sets the stage for a later discussion of pain management in the context of end-of-life care.

The use of opioid medications for pain management is discussed, along with common side effects such as sedation, constipation, nausea, vomiting, pruritus (itching), myoclonus (muscle twitching), and respiratory depression. Nursing interventions focus on patient and family education regarding these side effects and strategies for their management. Sedation is typically temporary but may require dose adjustments or stimulant medications. Constipation, a frequent side effect, necessitates proactive management with bowel regimens including laxatives, stool softeners, and increased fluid intake. Nausea and vomiting can be addressed with anti-emetics. Pruritus is frequently associated with morphine and can be managed with antihistamines. Myoclonus, often seen with higher opioid doses, may necessitate opioid rotation or the use of Clonazepam. The need for careful assessment of medication effectiveness and dose adjustments is stressed.

Opioid rotation—switching to a different opioid medication—is explained, emphasizing the importance of equivalent dosing (equianalgesia) to avoid under- or over-medication. The text notes that effective pain management often involves a multimodal approach, incorporating more than one medication. This is particularly relevant for patients with cancer who might experience both constant and breakthrough pain, often managed using long-acting and short-acting opioids. The continuous assessment of pain relief is crucial. If the patient continues to experience pain, even while taking breakthrough medication frequently, adjustment to the long-acting medication is vital. This underscores the importance of careful monitoring and proactive intervention in pain management for patients nearing end of life. The nurse's role is crucial in the continuous evaluation and adjustment of the patient's pain management regimen.

The text discusses the various barriers to adequate pain management, categorized as patient-related, provider-related, and system-related. Patient-related barriers include fears about addiction and adverse effects, especially concerning opioids. The text emphasizes educating patients and families about the differences between dependence, tolerance, and addiction, noting that addiction is rare in patients using opioids for pain management in advanced illnesses. It also addresses other end-of-life symptoms besides pain, such as dyspnea (shortness of breath), constipation, and terminal restlessness, with emphasis on the multidimensional nature of dyspnea and the importance of supportive interventions alongside pharmacological measures. For symptoms like terminal restlessness, interventions include supportive care for patients and families, and potentially the use of medication such as Haloperidol. For constipation, a common side effect of opioid medications, and other similar end-of-life symptoms, management typically includes laxatives, stool softeners, and addressing hydration and nutritional factors. The text stresses the importance of educating the patient and family on individual management plans.

The text introduces the ethical principle of nonmaleficence—refraining from causing unnecessary harm. It acknowledges that some interventions, while potentially causing harm, may be justified if they prevent greater harm or serve a higher good for the patient. A common example in end-of-life care is administering pain medication to a dying patient, even if it might slightly hasten death. The text cites the American Nurses Association's (ANA) Code of Ethics (2015), which states nurses may not act deliberately to terminate life, but have a moral obligation to relieve symptoms in dying patients, even if this might inadvertently hasten death. This highlights the complex ethical considerations involved in balancing pain relief with the potential acceleration of death. The principle of double effect, which addresses the permissibility of actions having both good and bad effects, is implicit within this discussion.

The text addresses the ethical dilemmas surrounding the cessation of medical interventions. This involves considering whether the burdens of treatment outweigh any potential benefits, recognizing that life-sustaining therapies might prolong suffering while diminishing quality of life. Patients and families often grapple with these decisions, particularly regarding the withdrawal of life support. This underscores the critical importance of advance directives, which allow patients to communicate their preferences regarding medical care to their families and healthcare providers, in case they are unable to make those decisions themselves. The National Cancer Institute (2013) is referenced in this context, highlighting the official recognition of the crucial role advance directives play in end-of-life decision-making. Advance directives can alleviate the burden on families, prevent unnecessary treatment, and potentially reduce the costs associated with futile medical care (Coyne et al., 2010).

The text discusses the common end-of-life decision regarding do-not-resuscitate (DNR) orders, which are sometimes termed DNAR (do-not-attempt-resuscitation) orders (Breault, 2011). These orders indicate a patient’s choice to forgo cardiopulmonary resuscitation (CPR) in the event of cardiac arrest. CPR involves chest compressions, cardiac drugs, and intubation. The low success rate of CPR, particularly in patients with advanced illnesses, is mentioned (Berry & Griffie, 2010), providing a factual context for this challenging decision. Often, a do-not-intubate (DNI) order accompanies a DNR, specifying that intubation will not be performed, even though other elements of CPR may still be considered. These orders highlight the ethical considerations surrounding medical interventions at the end-of-life and the importance of respecting patient autonomy and their wishes regarding life-sustaining treatments.

Effective communication is highlighted as crucial for providing compassionate end-of-life care. The text emphasizes the need for healthcare professionals to engage in open and honest communication with patients and their families, even when dealing with difficult or uncomfortable topics. The text notes that while nurses possess technical skills, they may sometimes neglect the crucial aspect of open communication with patients during this difficult time in their lives. The ability to have open communication with healthcare professionals is described as especially vital for patients and their families navigating end-of-life experiences. The text emphasizes preparing students for uncomfortable conversations, as these are unavoidable in end-of-life care.

The text offers guidance on responding to emotionally charged statements from patients who are aware of their prognosis. It suggests an approach of honesty and empathy, rather than cliché responses. For example, if a patient states, "So I'm dying, aren't I?", a suggested response is, "I know that the doctor has told you a lot of difficult information recently, and I am really sorry to hear about that." This approach prioritizes acknowledging the patient's feelings and concerns before directly addressing the prognosis. The text cautions against minimizing patients' feelings with generalized statements. Instead, it stresses the importance of being fully present, engaged, and genuinely interested in their concerns. This reflects the value of genuine human interaction in easing the suffering of dying patients.

The text addresses the challenge of balancing professionalism and authenticity in nurse-patient interactions. It acknowledges that maintaining a professional demeanor while being genuine can be difficult for nursing students and new nurses. The text encourages nurses to answer innocent questions from patients in an honest and casual manner, fostering trust and connection. However, it recognizes the importance of respecting professional boundaries. The formation of a positive nurse-patient relationship is highlighted as key to promoting trust and encouraging patients to follow through with recommended care plans. Authenticity in the nurse-patient relationship is presented as particularly important in end-of-life care, creating a supportive environment and fostering emotional wellbeing. The special nurse-patient connection, created through open and honest communication, is pivotal in building trust and encouraging compliance.