Nursing contribution to end-of-life care decision-making in patients with neurological diseases on an acute hospital ward: documentation of signs and symptoms

Recognizing imminent death in patients is challenging for nurses and other healthcare professionals [1, 2]. This may occur across different patient groups, including those with neurological diseases [3, 4, 5, 6, 7, 8]. To comprehend approaching death, clinicians rely on intuition and comprehensive information, including physical and psychological symptoms, tests, conversations with relatives, and observations, to comprehend approaching death [1]. This process is further complicated by organizational factors such as work pace and cultural attitudes towards death [1, 2]. Patients with neurological diseases exhibit numerous and severe signs and symptoms near the end of life (EOL) [4, 9, 10, 11, 12, 13, 14]. Some of these signs and symptoms, such as decreased consciousness, which may resemble typical reversible neurological symptoms such as those of acute stroke, may be temporary [3, 4, 8, 10, 15, 16]. This overlap accentuates the challenge of recognizing imminent death and increases the uncertainty of EOL decision-making in patients with neurological diseases [1].

EOL care marks the final step of palliative care and refers to care provided in the final stage of life, where the focus is shifted from life-sustaining treatment to comfort measures based on individual patient’s needs. This decision is the physician’s responsibility and is formally documented in the patients’ health records (PHRs) Consequently, a change in both medical and nursing treatment should be expected, such as exclusion of resuscitation and intensive care. Despite the different meanings of the terms palliative and EOL care, they are often used interchangeably. EOL care requires complex decision-making, considering the patient’s overall decline across physical, social, spiritual, and psychological dimensions [17, 18, 19]. Nurses are expected to identify signs and symptoms of imminent death, provide timely clinical assessment, and relay information to physicians and other professionals, actively contributing to EOL care decision-making [17, 18, 19]. Nurses must be supportive, advocate for patients, and influence EOL care decision-making [17] while ensuring that the care aligns with the values and preferences of patients and their relatives. In addition to providing holistic and continuous care, nurses must share vital information about signs and symptoms, medication administration, and possible outcomes with both patients who are dying and their relatives [17, 20, 21, 22, 23].

Failure to recognize imminent death may prolong suffering and hinder peaceful death [1, 2, 6, 24, 25, 26]. The clinical guidelines of the Registered Nurses Association of Ontario (RNAO) and existing literature highlight several signs that may indicate disease progression or impending death during the terminal phase of patients with neurological diseases. Some of these signs are progressive weakness; bedbound state; sleepiness; decreased intake of food and fluid; darkened and/or decreased urine output; dysphagia; delirium; decreased level of consciousness; noisy respiration/excessive respiratory tract secretion; dyspnea; change in breathing pattern (Cheyne–Stokes respiration and periods of apnea); and mottling and cooling extremities [16, 17, 27, 28]. Respiratory signs and symptoms including respiratory congestion, Cheyne–Stokes breathing, and dyspnea can induce distress and anxiety for patients, their bedside relatives, and healthcare professionals [29, 30, 31, 32]. Therefore, recognizing and addressing the signs and symptoms of imminent death in the terminal phase of life is important, not only to enhance patient comfort and ensure quality of care but also to support the well-being of relatives and curb stress in healthcare professionals [33].

Patients with neurological diseases often receive brief EOL care, even after extended hospital stays [15, 34, 35, 36, 37, 38]. Our previous study on EOL decision-making revealed that EOL decisions were made more quickly after admission to the hospital in patients with acute neurological conditions such as hemorrhagic and ischemic strokes (median: 4 days) than in those with progressive diseases like amyotrophic lateral sclerosis (ALS) and Parkinson’s disease or extrapyramidal and movement disorders (PDoed) (median: 9 and 22 days, respectively). The findings furthermore suggested that EOL care decisions were influenced by age and stroke diagnosis and not by treatment directives or demographic factors [24]. Several triggers of imminent death may occur in patients with neurological diseases several months prior to their death. These include physical deterioration, dysphagia, severe complex symptoms and pain, weight loss, respiratory issues, recurrent infections, and cognitive decline [39, 40, 41, 42, 43, 44, 45]. Understanding these signs and symptoms requires deep knowledge of the progression and symptom patterns specific to neurological diseases [43, 44, 45, 46, 47]. When using triggers to identify approaching death, careful attention must be given to the trajectory of the disease, which varies between patients and conditions [1, 9, 47, 48, 49, 50, 51]. For instance, being immobile, dependent, or bedbound are often considered general indicators of imminent death [52], but in patients with ALS, these may not signal death because reduced functional capacity can exist for long periods while patients may maintain independence in talking and eating until just hours before death [48, 52]. Conversely, patients with stroke can be paralyzed and immobile after the stroke but may enjoy fruitful and meaningful lives without actively dying [53]. Consciousness level and communication capacity are frequently assessed to monitor neurological disease progression. Changes in these signs may indicate the need to transit patients to EOL care [5, 16, 54]. However, these signs are not always reliable predictors of imminent death [5] because they can fluctuate owing to factors such as underlying medical conditions and medication use.

The need for clear guidelines for assessing signs and symptoms of imminent death has been highlighted [55]. Specific signs indicative of imminent death within 3 days have been identified in prospective studies of patients with cancer [12, 13, 16, 56]. They include neurocognitive indicators of reduced responsiveness to visual and verbal stimuli and nonreactive pupils; neuromuscular signs, such as drooping of the nasolabial folds, hyperextension of the neck, inability to close the eyelids, and grunting of the vocal cords; and neurological signs, including Cheyne–Stokes breathing, respiration with mandibular movement, and death rattle [12, 13, 16, 56]. The usefulness of these specific signs in caring for patients with neurological diseases warrants examination.

Nurses are expected to contribute to the EOL care decision-making process through their clinical assessments and professional knowledge [17, 57, 58, 59]. However, they may face challenges, including difficulty voicing concerns about ineffective treatments, balancing care needs when families pursue alternative approaches, and managing negative reactions from physicians when advocating for their patients [59]. We aimed to describe nursing contribution to EOL care decision-making and compare the signs and symptoms of imminent death in patients with acute versus progressive neurological diseases during the final 3 to 7 days of life.

In this study, we examined nursing contributions to EOL care decision-making in patients with neurological diseases, recognition of signs and symptoms of impending death, and interactions with patients and relatives. These aspects are inherently linked to the ultimate EOL care decision-making ordered by physicians. The findings demonstrate that nurses played a multifaceted and essential role, which resonates with recommendations in the literature [17, 56, 57]. The majority of the patients had a documented EOL care decision. Essential to EOL care decision-making is recognizing signs and symptoms of impending death. The mean number of signs and symptoms in all groups (ischemic and hemorrhagic stroke, ALS, and PDoed), was 6.5 and ranged from 1 to 14 in the 3–7 days leading up to death, with patients with hemorrhagic stroke having the highest frequency of documented symptoms (7.2). This is consistent with findings from other studies [3, 4, 8, 10, 15, 16]. The existence of multiple signals should alert health professionals to the approaching EOL. In patients with ALS or PDoed, the documentation focused on dyspnea, agitation, and fatigue, reflecting the progressive nature of their conditions. Conversely, documentation of patients with stroke highlighted issues related to lowered consciousness state, being bedbound, and lack of food intake, underscoring neurological impairment and paralysis. Notably, both groups shared significant overlaps in having a non-responsive communication status, pain, and respiratory congestion, illustrating common challenges these patients face.

Hui et al. [16, 54] conducted prospective studies on signs of imminent death, with a predefined protocol for nurses on how to observe and document these signs. In our study, out of 12 of those signs, 7 had acceptable documentation and were used to report signs of imminent death, namely respiratory congestion, Cheyne–Stokes breathing, decreased response to verbal and visual stimuli, grunting of vocal cords, and non-reactive pupils. The remaining five signs—respiration with mandibular movement, pulselessness of the radial artery, inability to close the eyelids, hyperextension of the neck, and drooping of the nasolabial fold—were documented in less than 10% of the cases. A key difference between our retrospective study and others [12, 13, 16] is that we did not predefine specific factors for healthcare professionals to observe in the clinical setting, allowing us to capture the issues that the healthcare professionals considered needing documentation. Such insight is of value to inform this complicated practice, something that is difficult to depict with prospective study designs.

Patients with stroke, especially those with hemorrhagic stroke, had a higher frequency of documented symptoms than those with ALS or PDoed, likely owing to the acute nature of stroke. Stroke symptoms typically appear suddenly and require close surveillance in the acute phase [36, 38], which leads to more detailed clinical documentation. In contrast, ALS and PDoed symptoms progress gradually [8, 15], potentially resulting in less frequent or detailed documentation. Nurses tend to focus on urgent issues, such as changes in consciousness in patients with stroke, while slower changes in ALS or PDoed, such as reduced response to verbal and visual stimuli, receive less emphasis. This may explain the more thorough documentation in patients with stroke. Further exploration of these findings is needed, but enhancing education on signs and symptoms of approaching death and suggesting preliminary criteria for symptom monitoring may be a beneficial first step toward improving documentation [1].

The findings on communication with patients and relatives reveal differences across different disease groups (ischemic and hemorrhagic stroke, ALS, and PDoed), suggesting variations in their involvement in care decisions. Informal conversations with patients were more common for progressive diseases like ALS than for hemorrhagic stroke. Patients with ALS were also more likely to be conscious and communicating during the final days, while communication with patients with hemorrhagic stroke was minimal. A Swedish study using national EOL registry data found that 93% (n = 770) of patients with ALS were still communicating, and 73% (n = 603) had EOL care discussions with healthcare professionals [11], which is considerably higher than that in our study. A lack of communication guidelines with ALS patients has been identified [14]. Improved competencies among health professionals are needed, encouraging early EOL care discussions with patients facing progressive neurological diseases.

The findings of this study indicate that conversations and formal meetings with relatives of patients about the condition of patients were common during the final week of life. Relatives often provide key insights into patients’ values and wishes, enabling healthcare professionals to tailor care to meet individual needs better. When patients are unconscious or unable to make their own decision, the importance of the relatives in the decision-making process increases. Similar to our study, Ozanne et al. [4] reported a 69–89% prevalence of EOL care discussions with family members, highlighting the beneficial effects of such communication. Similarly, Erikson et al. [10] found that the families of 74% (n = 1195) of patients with stroke received informative communication about transitioning to EOL care. At the same time, Eljas Ahlberg et al. [11] reported that 81% (n = 671) of patients with ALS had transitioned to EOL care discussions.

Evidence-based clinical guidelines on EOL care for patients with neurological diseases are emerging (44,45). Although in their early stages of development, differentiating between the needs of patients with acute (44) and progressive (45,53) neurological diseases has started to take shape, which is congruent with the main implications of this study. Early identification of patients with neurological diseases needing EOL care is a priority, concurrent with further development of evidence-based clinical guidelines for such care. The findings of this study may be useful for that purpose. At the same time, it is crucial to explore further the factors that may contribute to delayed recognition of approaching death in acute care settings [1, 3]. This includes assessing whether signs and symptoms of imminent death are mistaken for acute reversible symptoms [1].

Nurses made substantial contributions to EOL care decision-making for patients with neurological diseases, for which the majority had a documented decision. The frequency of signs and symptoms of imminent death was similar between those with and without EOL care decision, except for patients with hemorrhagic stroke, who exhibited a higher frequency among those with EOL care decision compared with those without EOL care decision. The symptom burden was notable for patients without EOL care decision, particularly those with progressive diseases. Further exploration of factors contributing to delayed recognition of the need for EOL care decision in acute settings is paramount. This includes assessing whether the signs and symptoms of imminent death are clear to healthcare professionals or are misinterpreted as acute, reversible conditions.