Abstract
End-of-life care presents unique challenges in austere or resource-limited environments where traditional medical resources are scarce or absent. This review explores the complexities of providing end-of-life care under such constraints, including recognition of the dying patient and techniques to alleviate suffering and allow death with dignity in under-resourced or expeditionary environments. Moreover, it presents these techniques in an accessible manner for providers without formal hospice training to use. Based on a literature review of hospice and palliative medicine, insights from the body of literature in wilderness and austere medicine, and the authors’ experiences in practicing in austere environments, this paper discusses practical approaches to symptom management, ethical considerations in end-of-life decision making, and accessible interventions with limited resources. By addressing these challenges and offering management recommendations, this review aims to enrich the literature and provide guidance for general medical providers who may lack formal palliative and hospice care training and yet find themselves in the situation of navigating end-of-life care in challenging and austere environments.
Introduction
Medical providers often receive training focused on life-prolonging measures that aggressively seek to extend the quantity of life. Improving quality of life for terminal patients, however, is something that is seldom discussed in most medical education systems. Experience in this realm is often anecdotal (outside formal hospice and palliative care fellowships or the occasional hospice/palliative elective rotation). Although nearly all medical specialties deal with patients facing their own mortality, the conversations with and medical management of these patients frequently remain an uncomfortable arena for medical providers to navigate. 1 Although services such as hospice and palliative care medical teams are available at many hospitals, these luxuries are nearly nonexistent in austere environments.
Prior work, especially that done by Woods and Woods, 2 has been tremendous in addressing the question of palliative care in austere/wilderness environments as well as mass-casualty situations and other resource-constrained situations. Other resources, such as the Wilderness Medical Society, have provided excellent guidelines for analgesic care in managing symptoms in remote environments. 3 The goal of this paper is to contribute to the body of literature that addresses the unique challenges of providing specifically end-of-life care for imminently dying patient sin austere or resource-limited environments.
Recognition of the sick versus the dying patient is paramount, and once this determination is made, a provider then can appropriately tailor treatments toward symptom management with the goal of improving quality of life. Although expectant patients in these environments may not receive the same resources as other patients, options remain available to aid in patient comfort and maintenance of dignity. Throughout this paper, we hope to elucidate these techniques while highlighting various ethical and critical considerations for austere medical providers in an effort to contribute to the limited body of literature surrounding end-of-life care in resource-constrained environments.
Definitions
End-of-life care, as described in this paper, refers specifically to hospice-aligned care. There is often confusion when using terms such as palliative care vs hospice care. The American Academy of Hospice and Palliative Medicine defines palliative care as “care that focuses on improving a patient's quality of life by managing pain and other distressing symptoms of a serious illness” and hospice care as “palliative care for patients in their last year of life.” 4 Both types of care deal with symptom management, but palliative care is for those who continue to receive disease-directed treatments aimed at prolonging life. This contrasts with hospice care, which is symptom management for the dying in which extending a patient's life is no longer an aim. Hospice care is the type of care we provide for patients with a life expectancy of hours to days in the austere environment. Applying these principles to patients with hours to days of life expectancy is how we frame the scope of end-of-life care.
The austere environments mentioned in this paper can be any situation where a provider does not have access to a full complement of traditional clinical adjuncts, treatment modalities, and staff available to assist. There are significant overlaps here with the principles of wilderness medicine, which is characterized by the provision of care in remote settings with limited resources, the need for improvisation, reliance on clinical examination and judgment, and delayed evacuation to definitive care.5,6 These principles help depict a situation where even one patient may challenge the capability/resources available not only to provide curative care but also to provide symptom palliation for a dying patient.
Recognition of the Dying Patient in an Austere Environment
Recognition of the dying patient depends on context. Despite the universality and fundamental nature of the dying process, little is known about the frequency and onset of clinical signs that occur in the last days of life. 7 In well-resourced settings, deciding that a patient is “end of life” is typically used when it is apparent that a patient is approaching the last year of life due to chronic or life-limiting illness. 8 However, when patients are within the last days or hours of life, they are more accurately referred to as “imminently dying.” 7 This recognition is fundamental to hospice decision making because it indicates an irreversible physiologic process, similar to the diagnosis of pregnancy or labor. 9 It is important that recognition of a dying patient is understood as a diagnostic question rather than a prognostic one—once a patient starts showing these signs, they are dying; the only question is when. Recognizing when a patient is entering the imminently dying stage in an austere environment is critical. This recognition aids in informed decision making for patients and any loved ones. In the resource-constrained environment, it also aids in supply allocation, evacuation coordination, and operations planning.
The current approach to recognizing imminent dying uses a range of signs and symptoms observed over days to weeks, including multiple organ failure (labs), progressive weakness, reduced mobility, increased sleep, reduced oral intake, and cognitive decline. 7 In the austere setting, seeing reliable clinical signs identifying the imminently dying patient is a more important tool. A 2015 prospective study of 357 dying cancer patients investigated 52 physical signs that were systematically documented every 12 h from admission to death or discharge. This study found seven clinical signs that were highly diagnostic of impending death (Table 1). These signs were evident in up to 78% of patients within the last 3 d of life and had a late onset, high specificity (>95%), and high positive likelihood ratio (LR) for death within 3 d. Furthermore, Hui et al. 7 found the following highly specific physical signs associated with death within 3 d among cancer patients, including pulselessness of the radial artery (positive LR: 15.6; 95% CI, 13.7–17.4), respiration with mandibular movement (positive LR: 0; 95% CI, 9.1–10.9), decreased urine output (positive LR: 15.2; 95% CI, 13.4–17.1), Cheyne-Stokes breathing (positive LR: 12.4; 95% CI, 10.8–13.9), and death rattle (positive LR: 9; 95% CI, 8.1–9.8; Table 2).
Seven neurologic clinical signs of impending death.
Source: Adapted from Hui et al (2014). 7
Five clinical signs of impending death.
a Cheyne-Stokes breathing is alternating periods of apnea and hyperpnea with a crescendo-decrescendo pattern.
b Death rattle is a gurgling sound produced on inspiration and/or expiration related to airway secretions.
Source: Adapted from Hui et al (2014). 7
These are common and helpful symptoms that can be extrapolated to a dying patient in a wilderness setting to help determine imminent death. Although they are not absolutely certain, they are fairly reliable and a good qualitative decision-making aide in a sometimes-hectic environment.
Another helpful validated tool is the surprise question, which is, “Would you be surprised to see this patient in your office or clinic 1 y from now?” If the answer is yes, then considerations about an imminently dying-based approach should be made. 10 In an austere setting, the surprise question could be adapted to, “Would you be surprised to hear this patient survived evacuation to definitive care?”
Ethical Considerations
Providing care to patients at the end of life can pose unique ethical challenges that one must consider when balancing available medical resources and patient needs. In hospice and inpatient settings, autonomy and self-determination are cornerstone principles of end-of-life care when the patient is able and has the capacity to participate in the decision-making process. 11 In austere environments, providers may have no choice but to act as a surrogate decision maker attempting to align these decisions with what preferences the patient would have expressed if they had the ability to speak. 10 Surrogate decision makers may rely on the ideals of beneficence and nonmaleficence (minimizing interventions that are less likely to be beneficial) when guiding treatment. When providing care for a terminal patient in such a challenging environment, providers should seek to include patients in decisions when possible, and if patients are unable to participate, providers must serve as their surrogate and follow their previously stated preferences (if known) to the best extent possible when they balance available resources with patient needs.
Providing care to patients who are dying also involves balancing treatment effects. A common example is the administration of an opioid pain medication for a patient experiencing dyspnea as a terminal symptom. In this instance, administration of an opioid is primarily targeted toward relief of the symptom, but titration of the dose is balanced with the risk of respiratory depression. When possible, these two goals both should be met. However, sometimes the comfort of the patient who is already dying cannot be balanced with the possibility that the dose will not contribute to respiratory depression (and in effect speed along the dying process). This is the doctrine of double effect. It prioritizes the relief of symptoms in an incurable patient vs the potential risk for a slightly shorter life with a significantly higher symptom burden. 12 This is in contrast to the principle of euthanasia, where medications are administered and titrated to quickly end life in order to end symptoms. 13 The intent is provide relief or comfort, not to cause harm.
Management Recommendations
On identifying the imminently dying patient in the wilderness and making the determination that timely evacuation is not possible, a crucial step involves clarifying goals of care and determining resuscitation status as well as formulating strategies to intervene in ways that prioritize patient comfort. In this context, managing physical symptoms such as pain, nausea, and shortness of breath becomes paramount, whether stemming from the illness itself or as side effects of medication, including addressing psychological distress such as anxiety, insomnia, and depression.
For providers lacking formal training in palliative and hospice care, the dosages and frequencies of medications used may appear unfamiliar or even concerning. It's essential to distinguish symptoms-focused care for the imminently dying patient from medical aid in dying, which is a structured process that takes time to coordinate. For instance, giving a patient 20 mg of morphine (hydromorphone and fentanyl are other alternative agents if morphine is not available) is done to manage the symptoms of dying, which may include air hunger. The purpose of this dosage, however, is not to induce apnea but rather to relieve the symptom causing the suffering. Likewise, the concept of palliative sedation is to use sedative medications to induce coma to alleviate suffering, not to expedite the dying process. Table 3 is a reference for commonly used medications and dosages that may aid providers in austere settings providing end-of-life care (however, we acknowledge that most, if not all, of these medications may not be available in certain settings).
Reference table of suggested medications for end-of-life care in austere settings.
IV, intravenous; IO, intraosseous; IM, intramuscular.
Finally, different austere situations obviously will have different available medications. Therefore, the recommendations provided here should be viewed as guidelines rather than strict protocols. We focus on the medications listed on the 2023 World Health Organization’s (WHO’s) list of essential medications. 14 A provider in this situation is encouraged to use their best judgment for the situation.
Pain
Pain assessment, using validated tools and considering patient function and goals, guides tailored treatment plans. Although the WHO's pain ladder provides a framework, strong opioids often become necessary for effective analgesia. In wilderness and austere conditions, resources will be limited. Therefore, familiarity with nonpharmacologic interventions is paramount in symptom-focused management. The Wilderness Medical Society guidelines for analgesic care in remote environments to effectively manage pain are an excellent resource that provides a stepwise approach to safe and accessible interventions before escalating care. 3 Aside from providing comfortable, protected environments, using a PRICE (protection from further injury, rest, ice, compression, and elevation) therapy model as appropriate prior to advancing to pharmacologic interventions balances resources with humane treatment. In their well-written 2022 article, Woods and Woods2 listed several examples of improvisation to implement PRICE therapy in austere settings, including splints made of rigid items such as trekking poles or sticks, compacted snow or cold water to cool injured extremities, compression achieved by secure tying around extremities, and relaxation techniques such as distraction and meditation.
Once pharmacologic interventions become necessary, a standard pain regimen follows an extended release (ER)-immediate release (IR) paradigm: ER for sustained pain control and IR for breakthrough pain (usually ∼20% of the 24-h dose). Dosages should be titrated until the desired analgesic effect is achieved or until dose-limiting side effects emerge. Providers should watch for adverse effects such as nausea, somnolence, and neurotoxicity when administering opioids, ensuring that their use aligns with the patient's comfort goals. In resource-limited situations where long-acting medications are not available, frequent dosing of short-acting medications should be done if available, such as intravenous morphine 4 to 8 mg every 2 to 4 h as needed. Providers should remain vigilant for adverse effects and consider adjuvant treatments such as antidepressants, anticonvulsants, and anti-inflammatory agents. 15 Commonly used adjuvants likely present in a basic medical kit include nonsteroidal anti-inflammatory drugs for bone and inflammatory pain; dexamethasone for neuropathic, bone, and visceral pain; and other adjuvants, including lidocaine, ketamine, and capsaicin.
Palliative Sedation
Nonsurvivable traumatic injuries not resulting in immediate death but a condition of imminent death (likely relatively more common in the wilderness) may be an area where one should consider palliative sedation—“the intentional lowering of awareness towards, and including, unconsciousness for patients with severe and refractory symptoms.” 16 The objective of palliative sedation is to alleviate distressing symptoms without hastening death, ideally maintaining consciousness. Midazolam is the preferred medication, initiated at the lowest effective dose for comfort. For instance, start a continuous intravenous infusion of midazolam at 1 mg·h–1 and adjust based on the patient's clinical response. 17 There are other case reports of palliative sedation using other medications than benzodiazepines, such as fentanyl 50 micrograms intravenously in addition to ketamine 50 mg intravenously every 5 min until palliative sedation is achieved. 18 This brings into question perspectives on resource management, especially in mass-casualty situations, where the number of pharmacologic resources required to initiate palliative sedation may be outweighed by the needs of other patients with potentially survivable injuries, and this is a decision that merits prior consideration by providers and team leaders.
Delirium
Delirium is a disturbance of consciousness with reduced ability to focus, sustain, or shift attention. It results from an underlying medical condition, substance intoxication or withdrawal, or multiple etiologies as evident from the medical history. 19 Delirium is often multifactorial and is common during imminent death. Treatments for delirium can be divided into pharmacologic and nonpharmacologic. It is important to bring agitated delirium under control as rapidly as possible to prevent patient distress and injury. 17 There is also hypoactive delirium at end of life that is important to recognize but does not need medicating.
Pharmacologic treatments for hyperactive delirium include typical antipsychotics. Although likely unavailable in the wilderness or austere environment, haloperidol remains the gold standard of effectiveness in most patients with delirium. Benzodiazepines are not recommended in delirium but can be trialed if it is the only medication available. Remain vigilant for paradoxical hyperactivity with benzodiazepines. However, if this is the only available class of medications in a medical kit, trialing with benzodiazepines is better than allowing continued symptoms of delirium. Refractory delirium may be another area in which to consider palliative sedation.
In austere environments, a provider may be limited only to nonpharmacologic treatments and may be faced with resource-allocation decisions for pharmacologic interventions. Nonpharmacologic treatments include ensuring a physically safe environment, minimizing noise and excessive light, ensuring the presence of familiar objects such as pictures or equipment, and frequent reorientation of the patient. This is difficult enough in a conventional setting, but efforts to ensure these same environmental principles in austere environments must be made. 20 Friends and anyone close to the patient also can assist with reorientation and should be enlisted to help. 17 If nonmedical persons are asked to help, the provider should take the time to explain to them the process of delirium in the context of the dying patient in an austere environment, specifically emphasizing that their help is probably the most impactful action possible to assist their friend/loved one. Consider isolating the patient, if possible, with a trusted companion to encourage more tranquil surroundings.
Dyspnea
Dyspnea is the subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity. By definition, dyspnea can only be perceived by the person experiencing it. Therefore, as with pain, adequate assessment of dyspnea depends on self-report. 21 In a dying patient, management of dyspnea includes treating any underlying causes to the greatest extent possible, palliative measures to reduce the sensation of dyspnea, and reduction of any exacerbating factors. 22
As with delirium, pharmacologic and nonpharmacologic interventions exist. Opioids in similar dosages to those listed earlier for pain management are a safe and effective treatment, whereas benzodiazepines have weaker evidence for effectiveness. 23 Supplemental oxygen is useful if patients are truly hypoxemic, but it should be remembered that physiologic measures are only weakly correlated with the patient's experience. Compared with using room air alone, provision of supplementary oxygen to patients who are dyspneic but not hypoxemic demonstrates little benefit in reducing symptom burden.24,25 Concurrent symptoms, such as anxiety, can make the subjective feelings of dyspnea worse.
In a resource-constrained setting, there may be a temptation to reallocate resources away from pharmacologic intervention regarding a patient's dyspnea if there are no correlating physiologic findings such as hypoxia. However, other nonpharmacologic interventions such as using a simple fan to create air movement across the patient’s face are thought to stimulate the trigeminal nerve, leading to short-term relief of dyspnea. 26
Depression/Anxiety
In dire situations such as end-of-life scenarios in austere locations, patients understandably will feel depressed and anxious. It is unlikely that the austere medical provider has specific pharmacologic interventions for depression/anxiety, such as selective serotonin reuptake inhibitors or tricyclic antidepressants. Furthermore, these agents take weeks to show efficacy and require training to dose correctly. Instead, taking the time to allow the patient to express fears and end-of-life concerns or finding ways to enable the patient to communicate with friends and loved ones back home, such as offering dictation for final messages, or reminiscing with the patient may provide some relief from the emotional suffering of imminent death.
Provider Considerations
Providing end-of-life care in optimal environments can be difficult for providers, and austere/resource-limited situations pose even greater risks of moral injury. The impacts of providing care to terminal patients include burnout, stress, and a significant emotional toll. These likely will be maximized when a provider is faced with difficult decisions due to a lack of proximity to higher levels of medical care or lack of availability of treatment options that may be common in normal circumstances. Coping with the intrinsic and extrinsic challenges associated with these situations can potentially take a high toll on provider resiliency. 27 Developing a common understanding with other members of the care team in terms of patient trajectory, options available, and best plan forward may help providers overcome challenges and minimize the risk to moral injury. 28
Conclusions
Care of the dying patient is challenging in the best of circumstances. Recognizing that a patient is terminal may be difficult enough, but an austere or resource-limited environment may introduce unique challenges that alter the treatment lens for providers. Using established ethical principles as a guide for determining medical therapy within environmental/logistical constraints will help navigate emotionally distressing choices. Many common medications can be used for symptomatic relief or adjunctive measures to minimize symptom burden for dying patients. Understanding the roles of these agents and their potential side effects is useful when balancing limited resources and patient needs. Providers should maintain a careful watch on themselves in these situations to decrease the potential for moral injury with the intrinsic and extrinsic obstacles posed by austere or resource-limited environments.
