The main goal of end-of-life care is to prevent patients from dying or to relieve suffering as much as possible and, at the same time, to respect the interest of patients and their family members. Nevertheless, healthcare providers experience many challenges when it comes to end-of-life care. Moreover, since the decision made when attending these patients may involve the patients, their family members, and society, it is vital to protect the rights, dignity as well as vigor of all individuals involved in the clinical ethical decision-making. A vegetative state can be regarded as a state in which there is no responsiveness as well as awareness due to the immense dysfunction of the cerebral hemisphere, with enough sparing of the diencephalon as well as brain stem to preserve automatic and motor reflexes as well as sleep-wake cycles (Goudarzi et al., 2020). During this state, the patient may experience complex reflexes such as eye movement, yawning as well as involuntary movements, but they show no awareness of themselves or the environment. Additionally, patients in a vegetative state lack any evidence of self-awareness of the environment and do not show responses to external stimuli, language compression, and expression. This implies that they are unable to interact with other people.
According to Goudarzi et al. (2020), improperly trained family caregivers and insufficient knowledge about patients in a vegetative state may be unable to offer the best care for such patients leading to challenges for both patients and caregivers. Ensuring that are conducted to keep patients alive therefore requires a thorough understanding and presentation of all the facts. This leads to the idea that ethical considerations, medical advancements, and the preservation of human dignity suggest that patients in a vegetative state should not be kept indefinitely on life support, but rather, a comprehensive approach should be adopted to ensure the best interests of both patients and their families.
The phrase “vegetative” was initially used in a paper by Aristotle, On the Soul, and was accepted as a diagnosis in 1972 (Alimohammadi et al., 2020). A vegetative state is a challenging condition whereby the patient may be awake but lacks signs of awareness. This situation has recently been named the “unresponsive wakefulness syndrome” (Alimohammadi et al., 2020). During this stage, the sleep-wake cycle, as well as voluntary functions, remain intact while the awareness about self, others, and the environment is lost (Alimohammadi et al., 2020). Patients in this state are awake but fail to attain awareness of themselves and the environment, lack purposeful behavioral responses to stimuli, and understand language and communication.
With regard to the criteria used for patients in a vegetative state, they require strict as well as vigilant treatment and care. In a previous study by Georgiopoulos et al., patients in a vegetative state were treated using medications like Levodopa, Amantadine, and Zolpidem. They were also treated with surgical interventions like deep-brain stimulation as well as extradural cortical stimulation (Alimohammadi et al., 2020). Other studies implicated that patients in vegetative states needed deliberate management as well as treatment in the areas of social, ethical, and economic dilemmas. These patients fully depend on caregivers and nurses and require vigilant assessment due to the high chances of occurrence of critical, threatening challenges.
The improvement in cardiopulmonary resuscitation methods, surgery as well as critical care for patients suffering from brain injury have saved many patients in vegetative states and have contributed to longer lives for these patients (Goudarzi et al., 2015). However, these patients will only survive provided they are issued artificial hydration as well as nutrition (Goudarzi et al., 2015). The high frequency of survival of such patients contributes to caring difficulties. Therefore, their special condition necessitates continuous medical as well as social interferences of care from nurses and caregivers. Moreover, the skills and the location of the individuals who are providing care to these patients are all critical for better patient outcomes. For example, in Taiwan, patients in vegetative states are cared for in hospital-based special care units or within nursing homes (Goudarzi et al., 2015). Due to the long periods of illness, in countries like Iran, patients in vegetative states are discharged from hospitals when their condition stabilizes, and care continues at home (Goudarzi et al., 2015). Therefore, their families play a vital role in the lives of patients in a vegetative state.
Having patients in a vegetative state within the family is complicated due to certain issues such as ambiguity in the condition of the patient, the uncertainty of their illness, increased cost of care, and stress that arises due to the lack of therapeutic impact in spite of the high cost of care. A study conducted by Chiambretto et al. indicated that the caregiver for patients in the vegetative state claimed that their full-time commitment made them feel isolated (Goudarzi et al., 2015).
Patients in Vegetative State require special medical interventions.
Taking care of a patient in a vegetative state is challenging since they continually require medical interventions and also extensive care like maintaining their airways, and fluid balance, ensuring they have the right nutrition standards, maintaining their body temperature, and providing sensory stimuli.
Moreover, the care needed by vegetative patients needs to be conducted using high skills and by professionals. When family members provide this care, it can be challenging for patients and the caregivers themselves. In the majority of developing nations, due to the lengthy treatment period of these patients, they are normally discharged from hospitals after their state is stable and their treatment continues at home (Goudarzi et al., 2018). Therefore, families play a vital role in the lives of patients in a vegetative state and form the main part of their lives. In such circumstances, home care may be associated with many advantages for both the patients and caregivers and the society’s health system, provided that an appropriate approach is used under the management of the healthcare system.
Patients in a vegetative state require a long period of care, and thus, they are usually discharged following the restoration of their condition, and the care proceeds at home (Goudarzi et al., 2018). Therefore, their families need to be knowledgeable as they play a critical role in the lives of patients in vegetative states. When families are entrusted to care for vegetative patients, paying attention to the health of family caregivers is a challenge that needs not to be ignored (Goudarzi et al., 2018). When the responsibility of caring for patients in a vegetative state is to be entrusted to their families, it is challenging to pay attention to the health of the family caregivers, and it is an issue that cannot be neglected. Additionally, previous studies have shown that long-term, as well as uncertain care of patients in vegetative states in the absence of support and training contribute to challenges to the patients and the families of the caregivers, issues like physical and psychological erosions, financial issues, and unemployment (Goudarzi et al., 2018). This will interfere with the provision of the right care to vegetative patients.
According to Alimohammadi et al. (2020), roughly 2.77% of patients suffering from traumatic brain injury are in a persistent vegetative state. Due to the latency within the recovery as well as the partly poor prognosis of these patients following traumatic brain injury, the family caregivers are regarded as the primary members of their therapy. They provide the first source of care, particularly for patients with long-term as well as permanent needs (Alimohammadi et al., 2020). In addition, these families undergo distress, grief, signs of depression, physical as well as financial issues, and social problems. Therefore, family caregivers need to familiarize themselves with common procedures, for instance, position change, infection precautions, and suctioning.
Care for vegetative patients should focus on relieving suffering.
The care of patients’ end-of-life care should focus on preventing or relieving suffering as much as possible and, at the same time, respecting their wishes. Taking care of a patient who is in a vegetative state may be challenging and stressful at home (Goudarzi et al., 2015). However, advanced medicine, as well as medical technologies, can significantly prolong life expectancies and alter the natural causes of death. Even though numerous modern treatments and technologies do not address chronic illness, medical interventions like artificial nutrition, as well as respiratory support, can be used to extend the lives of patients in vegetative states by offering secondary support (Akdeniz et al., 2021). For instance, the issue of brain death can be controversial, whereby many families fail to accept it (Liao & Ito, 2010). The families who are givers to these patients have a difficult moment in accepting this idea. Thie lack of understanding challenges healthcare professionals who may view medical care as futile or nonbeneficial. Therefore, life support in the absence of collateral testing for brain death can contribute to a struggle in the acceptance of the death by the patient’s family. Moreover, continuing with life support for brain-dead patients may cause harm to the patients, families, and other involved parties. According to Liao and Ito (2010), the declaration of brain dead need not be delayed in order to wait for families or to justify the care provided in the hospital. Rather, relevant family care needs to be provided after the declaration of death. This may include continuing with the artificial life support for the patient.
Caring for patients in a vegetative state is associated with inconsistencies.
Inconsistencies exist regarding the concept, criteria, practice, and documentation of brain death. According to Greer et al. (2020), there are many controversies as well as dilemmas emerging about brain death/death by neurologic criteria (BD/DNC) nationally and internationally. The large variance in practice mirrors these controversies and other numerous issues. Moreover, inconsistencies in concept, criterion, practice, and documentation occur within nations and internationally (Greer et al., 2020). Challenges in performing randomized clinical trials, as well as intensive research on BD/DNC, have contributed to a lack of solid data that may be used to form evidence-based recommendations.
Diseases such as severe traumatic brain injury (TBI) are complex and associated with racial, financial, and geographic variations. It is challenging to decide whether patients with severe traumatic brain injury (TBI) should be withdrawn from life-supporting treatment (LST) (Williamson et al., 2020). Severe TBI is a life-changing event for both the patients and, therefore, healthcare professionals need to guide patients’ families on the available choices for interventions that should be taken and when to discontinue these interventions in an attempt to facilitate quality life. Moreover, healthcare providers may offer these families choices like craniotomy, mechanical ventilation, or intracranial pressure monitoring as measures of improving patients’ lives. Also, some families and healthcare providers may opt to remove or withhold more life-sustaining measures. This may occur when physicians feel that the patient’s prognosis is poor and the risk of undergoing adversity is high (Williamson et al., 2020). Such a decision in traumatic brain injury is challenging since healthcare providers may disagree with a prognosis. At this point, patients are incapacitated and, therefore, cannot express their feelings. Finally, the high acuity, as well as the seriousness of this situation, may make it challenging for the surrogate decision-makers to offer substituted judgment (Williamson et al., 2020).
The ruling by the UK Supreme Court in 2018 showed that there is no need to consult judges in Wales and England when physicians, as well as families of patients in vegetative or minimally conscious states, agree to withdraw the life-support treatment option (Huxtable, 2019). This may impact many people annually who survive in nursing homes as well as hospitals through medical interventions. This ruling may be welcomed in that the decisions for physicians and patients’ relatives are no longer singled out for the decisions made by judges with all the financial as well as emotional costs the court proceedings may entail (Huxtable, 2019). On the contrary, the ruling may have unwelcoming outcomes in the sense that patients may die too soon, particularly when the physicians adopt the court’s perception that patients in a vegetative state might not have interests and, therefore, treatment interventions may be withdrawn. Also, the consequences of the ruling may be unwelcoming in the sense that there is a possibility that patients in a vegetative state may live for long, as research shows that patients’ relatives, physicians, and healthcare system tend to facilitate treatment by default (Huxtable, 2019). The two sides of the consequences of the ruling necessitate further research that sheds more light on how the ruling should be interpreted for patients in a vegetative state and whether it should be modified.
It is vital to comply with the 2018 Act on Decisions on Life-Sustaining Treatment enacted for end-of-life patients. This act includes hospice as well as palliative care to allow patients to continue receiving care even when they decide to withdraw life-sustaining therapy (Dae Seog Heo et al., 2022). According to this act, “end life” implies that the patient’s health status is below the chances of recovery, and the patient has shown no signs of recovery despite treatment, implying that the patient is nearing death due to their worsening symptoms.
To sum up, taking care of patients in a vegetative state is challenging as they require continuous medical interventions as well as extensive care. The care of patients’ end-of-life care should focus on preventing or relieving suffering as much as possible and, at the same time, respecting their wishes. Inconsistencies exist when it comes to the concept, criteria, practice as well as documentation of brain death. All this implies that patients in a vegetative state should not be kept indefinitely on life support. Instead, a comprehensive approach should ensure the best interests of both patients and their families.
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