Food as Love: Ethical and Moral Dilemmas in Withdrawal of Artificial Nutrition and Hydration in the Minimally Conscious State.

Supportive Palliative Care and Hospice professionals frequently attend to Minimally Conscious State (MCS) patients near the end of life and in so doing, face decisions over maintenance or withdrawal of artificial nutrition and hydration. Although both withholding and withdrawal of artificial nutrition and hydration (ANH) in such circumstances are considered by experts in ethics and law to be acceptable, not all families nor health care professionals agree. This paper will explore basic aspects of serious brain injuries, especially MCS, the psychological role of food in interpersonal relationships, and lessons from clinical ethics that can help in goals of care discussions about withdrawal of ANH.

Prognostication, Ethical Issues, and Palliative Care in Disorders of Consciousness.

Research advances in recent years have shown that some individuals with vegetative state or minimally conscious state can emerge to higher states of consciousness even years after injury. A minority of behaviorally unresponsive patients with vegetative state have also been shown to follow commands, or even communicate, using neuroimaging or electrophysiological techniques. These advances raise ethical questions that have important implications for clinical care. In this article, the authors argue that adopting a neuropalliative care approach can help clinicians provide ethical, compassionate care to these patients and their caregivers.

Trastornos prolongados de conciencia postinjuria cerebral aguda / Prolonged disorders of consciousness after an acute brain injury

Only a fraction of patients in coma secondary to a primary acute brain injury develop a vegetative state (VS). At least 20% of patients show late transitions to a minimally conscious states (MCS). They are particularly common in young adults with traumatic brain injury. The main problems faced by clinicians are the diagnostic accuracy of VS and MCS as well as the usefulness of sophisticated paraclinical investigations. Specific therapies are of limited effectiveness. This population is vulnerable to misdiagnosis and limited access to medical care and rehabilitation, thus generating ethical problems.

[Prolonged disorders of consciousness after an acute brain injury]. / Trastornos prolongados de conciencia postinjuria cerebral aguda.

Only a fraction of patients in coma secondary to a primary acute brain injury develop a vegetative state (VS). At least 20% of patients show late transitions to a minimally conscious states (MCS). They are particularly common in young adults with traumatic brain injury. The main problems faced by clinicians are the diagnostic accuracy of VS and MCS as well as the usefulness of sophisticated paraclinical investigations. Specific therapies are of limited effectiveness. This population is vulnerable to misdiagnosis and limited access to medical care and rehabilitation, thus generating ethical problems.

Neuroethics and Disorders of Consciousness: Discerning Brain States in Clinical Practice and Research.

Decisions about end-of-life care and participation in clinical research for patients with disorders of consciousness begin with diagnostic discernment. Accurately distinguishing between brain states clarifies clinicians' ethical obligations and responsibilities. Central to this effort is the obligation to provide neuropalliative care for patients in the minimally conscious state who can perceive pain and to restore functional communication through neuroprosthetics, drugs, and rehabilitation to patients with intact but underactivated neural networks. Efforts to bring scientific advances to patients with disorders of consciousness are reviewed, including the investigational use of deep brain stimulation in patients in the minimally conscious state. These efforts help to affirm the civil rights of a population long on the margins.

Results of a prospective study (CATS) on the effects of thalamic stimulation in minimally conscious and vegetative state patients.

OBJECTIVE Deep brain stimulation of the thalamus was introduced more than 40 years ago with the objective of improving the performance and attention of patients in a vegetative or minimally conscious state. Here, the authors report the results of the Cortical Activation by Thalamic Stimulation (CATS) study, a prospective multiinstitutional study on the effects of bilateral chronic stimulation of the anterior intralaminar thalamic nuclei and adjacent paralaminar regions in patients affected by a disorder of consciousness. METHODS The authors evaluated the clinical and radiological data of 29 patients in a vegetative state (unresponsive wakefulness syndrome) and 11 in a minimally conscious state that lasted for more than 6 months. Of these patients, 5 were selected for bilateral stereotactic implantation of deep brain stimulating electrodes into their thalamus. A definitive consensus for surgery was obtained for 3 of the selected patients. All 3 patients (2 in a vegetative state and 1 in a minimally conscious state) underwent implantation of bilateral thalamic electrodes and submitted to chronic stimulation for a minimum of 18 months and a maximum of 48 months. RESULTS In each case, there was an increase in desynchronization and the power spectrum of electroencephalograms, and improvement in the Coma Recovery Scale-Revised scores was found. Furthermore, the severity of limb spasticity and the number and severity of pathological movements were reduced. However, none of these patients returned to a fully conscious state. CONCLUSIONS Despite the limited number of patients studied, the authors confirmed that bilateral thalamic stimulation can improve the clinical status of patients affected by a disorder of consciousness, even though this stimulation did not induce persistent, clinically evident conscious behavior in the patients. Clinical trial registration no.: NCT01027572 ( ClinicalTrials.gov ).

Neuromodulation of vegetative state through spinal cord stimulation: where are we now and where are we going?

BACKGROUND: Vegetative state (VS) is a complex condition that represents a challenging frontier for medicine and neuroscience research. Nowadays there is no scientifically validated treatment for VS patients, and their chronic long-term assistance is very demanding for healthcare systems worldwide. OBJECTIVES: The present paper is a systematic review of the role of spinal cord stimulation (SCS) as a treatment of patients with VS. METHODS: Published literature on this topic was analyzed systematically. Clinical and epidemiological characteristics of VS, present therapeutic options and social costs of VS were also evaluated. RESULTS: Only 10 papers have been published since 1988, and overall 308 VS patients have been treated with SCS worldwide; 51.6% displayed a clinical improvement and an amelioration of the environmental interaction. These effects are probably mediated by the stimulation of the reticular formation-thalamus-cortex pathway and by cerebral blood flow augmentation induced by SCS. CONCLUSIONS: The experience on this topic is still very limited, and on this basis it is still hard to make any rigorous assessment. However, the most recent experiments represent significant progress in the research on this topic and display SCS as a possible therapeutic tool in the treatment of VS.

Autologous bone marrow mesenchymal stem cell therapy in the subacute stage of traumatic brain injury by lumbar puncture.

OBJECTIVES: To explore the clinical therapeutic effects and safety of autologous bone marrow mesenchymal stem cell therapy for traumatic brain injury by lumbar puncture. MATERIALS AND METHODS: A total of 97 patients (24 with persistent vegetative state and 73 with disturbance motor activity) who developed a complex cerebral lesion after traumatic brain injury received autologous bone marrow mesenchymal stem cell therapy voluntarily. The stem cells were isolated from the bone marrow of the patients and transplanted into the subarachnoid space by lumbar puncture. RESULTS: Fourteen days after cell therapy, no serious complications or adverse events were reported. To a certain extent, 38 of 97 patients (39.2%) improved in the function of brain after transplant (P = .007). Eleven of 24 patients (45.8%) with persistent vegetative state showed posttherapeutic improvements in consciousness (P = .024). Twenty-seven of 73 patients (37.0%) with a motor disorder began to show improvements in motor functions (P = .025). The age of patients and the time elapsed between injury and therapy had effects on the outcomes of the cellular therapy (P < .05). No correlation was found between the number of cell injections and improvements (P > .05). CONCLUSIONS: This study suggests that the bone marrow stem cell therapy is safe and effective on patients with traumatic brain injury complications, such as persistent vegetative state and motor disorder, through lumbar puncture. Young patients improve more easily than older ones. The earlier the cellular therapy begins in the subacute stage of traumatic brain injury, the better the results.

Focal increase in cerebral blood flow after treatment with near-infrared light to the forehead in a patient in a persistent vegetative state.

OBJECTIVE: This study aimed to quantify the cerebral blood flow (CBF) after bilateral, transcranial near-infrared light-emitting diode (LED) irradiation to the forehead in a patient in a persistent vegetative state following severe head injury. BACKGROUND DATA: Positive behavioral improvement has been observed following transcranial near-infrared light therapy in humans with chronic traumatic brain injury and acute stroke. METHODS: Single-photon emission computed tomography with N-isopropyl-[123I]p-iodoamphetamine (IMP-SPECT) was performed following a series of LED treatments. RESULTS: IMP-SPECT showed unilateral, left anterior frontal lobe focal increase of 20%, compared to the pre-treatment value for regional CBF (rCBF) for this area, following 146 LED treatments over 73 days from an array of 23×850 nm LEDs, 13 mW each, held 5 mm from the skin, 30 min per session, the power density 11.4 mW/cm(2); the energy density 20.5 J/cm(2) at the skin. The patient showed some improvement in his neurological condition by moving his left arm/hand to reach the tracheostomy tube, post-LED therapy. CONCLUSIONS: Transcranial LED might increase rCBF with some improvement of neurological condition in severely head-injured patients. Further study is warranted.

Clinical decision making in palliative care and end of life care.

Clinical decision making involves a consideration of multiple factors; clinical options are constructed based on the objective clinical data and evidence-based standards. Technologic advances have led not only to life saving interventions, but also to the use of these technologies when benefit to the patient was unclear or unexamined. The cases of Karen Quinlan, Nancy Cruzan, and Terri Schiavo provide a framework for examining the evolution of clinical decision making, including when to use or not to use technologies such as ventilators and artificial nutrition and hydration, and the role of specific questions in the process. Advance directives are a means to convey patient preferences, however, in the absence of advance directives, skilled questioning can elicit patient preferences. Nurses' roles in clinical decision making are often nebulous but can be enhanced by understanding these interrelated processes, as well as by knowing the policies and procedures of their institutions.

Ethical issues in artificial nutrition and hydration: a review.

Healthcare professionals often face clinical and ethical challenges when charged with making decisions related to provision or lack of provision of artificial nutrition and hydration. The intent of this review is to supply a framework of clinical practices, ethical principles, legal precedents, and professional guidelines that will impart information and can assist decision making regarding artificial nutrition and hydration. Comprehensive understanding of the theory and practice of informed consent for competent adults, decisionally incompetent adults, and minors is necessary for making valid clinical judgments and for guiding patients and their families or surrogates in choosing options related to initiating, withholding, or withdrawing artificial nutrition and hydration. The framework offered in this review can serve as a basis for evaluation of appropriateness of artificial nutrition and hydration in 3 common conditions in which decision making is particularly challenging: terminal illness, advanced dementia, and a persistent vegetative state. The framework facilitates guidance for institutional policy makers and individual nutrition support professionals dealing with situations in which personal values often create ethical dilemmas related to artificial nutrition and hydration and its utility.

Care protocol for persistent vegetative states (PVS) and minimally conscious state (MSC) in Lorraine: retrospective study over an 18-year period.

OBJECTIVES: Retrospective analysis of the efficiency of a protocol for care of chronic vegetative states (CVS) and minimally conscious state (MCS) in Lorraine. MATERIAL AND METHOD: Two indicators are used: protocol activity (number of patients hospitalized between 1988 and 2006, number of admissions per year, of requests per year, origin of requests, waiting time) and the epidemiological data (age, sex ratio, etiology, length of stay, geographic origin, number of deaths, number of hospital discharges). The number of CVS and MCS and patients having progressed towards arousal is specified as well as the technical procedures (orthopedic surgery, number of tracheotomies). RESULTS: Forty-seven patients (30 males and 17 females) were hospitalized in a 12-bed unit. The number of admissions per year was 2.4, and the annual number of requests varied between five and 15. Hospitalization times ranged from six to 18 months. The average length of hospitalization was 41 months. Eighty-eight percent of the cases were residents of Lorraine. The etiology was traumatic (53%), vascular (38% including 12% anoxia), miscellaneous (9%). Fifteen percent rate of return to arousal (average time period: 28.41 months, traumatic etiology) with hospital discharge in four cases. CONCLUSION: The protocol is managed as part of a local scheme and enables an appropriate response to a specific clinical profile by providing up-to-date multidiscipline follow-up care and a rapid solution should intercurrent events occur (signs of arousal, orthopedic deterioration, change of environment). Typical limitations are geographical remoteness and difficulties with family support care.

Ethical aspects of percutaneous endoscopic gastrostomy placement for artificial nutrition and hydratation.

Of the many decisions that family members and physicians must make about medical care in patients with advanced disease and perceived poor quality of life, none is more heart-wrenching than the decision about artificial nutrition and hydratation. The endoscopist often is placed in a precarious position when percutaneous endoscopic gastrostomy tube placement is requested in such patients. Clinical decision-making between the patient, the family and the physician should be consistent with legal and ethical principles. The purpose of this article is to provide an evaluation of medical and ethical issues regarding the decision on placing a percutaneous endoscopic gastrostomy tube for various indications, as well as suggesting strategies to optimize the decision-making process.

Affirming the right to care, preserving the right to die: disorders of consciousness and neuroethics after Schiavo.

In this article, I attempt to untangle some of the cultural, philosophical, and ethical currents that informed the Schiavo case. My objective is to better apprehend what the Schiavo case means for end-of-life care in general and to assert that our discourse about the ethical issues attendant to brain injury will be impoverished if we limit our discussions about disorders of consciousness solely to the vegetative state. If we ignore emerging developments in neuroscience that are helping to elucidate the nature of these disorders and fail to broaden the conversation about brain injury, beyond the unmitigated futility of the permanent vegetative state, we will imperil others who might improve and be helped. Through such efforts we can help mitigate the tragedy of the Schiavo case and overcome the rhetoric that marked the national discourse in March 2005. Once the complexity of disorders of consciousness is appreciated, rhetorical statements about a right to die or a right to life are exposed as being incompatible with the challenge of providing care to such patients. This is especially true as neuroscience brings greater diagnostic refinement to their assessment and management, a topic addressed in this article, which specifically focuses on the clinical and ethical implications of the recently described minimally conscious state. Instead of staking out ideological positions that do not meet the needs of patients or families, we should strive to both preserve the right to die for those who are beyond hope while affirming the right to care to those who might benefit from coming advances in neuroscience. If we can achieve that delicate balance, we will be able to transcend the partisan debate that shrouded the life and death of Theresa Marie Schiavo and begin to articulate a palliative neuroethics of care for those touched by severe brain injury and disorders of consciousness.

The medical provision of hydration and nutrition: two very different outcomes in Victoria and Florida.

Decisions to withhold or withdraw medical hydration and nutrition are amongst the most difficult that confront patients and their families, medical and other health professionals all over the world. This article discusses two cases relating to lawful withdrawal and withholding of a percutaneous endoscopic gastrostomy tube (PEG) from incompetent patients with no hope of recovery. Victoria and Florida have statutory frameworks that provide for advance directives, however in both Gardner; Re BWV and Schindler v Schiavo; Re Schiavo the respective patients did not leave documented instructions. The article analyses the two cases and their outcomes from legal, medical and ethical perspectives.

Tube feeding controversial patients: what do dietitians think?

The use of tube feeding in some patients can be controversial, however, few studies have investigated dietitians' opinions on this subject. A cross-sectional survey of 345 members the Irish Nutrition and Dietetic Institute was conducted using a self-administered, anonymous, postal questionnaire. A 44% response rate was achieved. Mean number of years qualified was 9.3 (8.4). Eighty-one per cent of responders were involved in initiating tube feeding in stroke patients, and 8.5% in discontinuing tube feeding in a patient in a persistent vegetative state (PVS). Nine per cent felt that their input had no influence on the care plan of the patient with dementia and 67% felt that the information given to families (or other decision makers) concerning tube feeding was inadequate. The majority of respondents favoured tube feeding fictitious stroke and cancer patients, but less than half favoured tube feeding a fictitious patient in a PVS or a patient with dementia. When given similar scenarios involving themselves, fewer dietitians wanted to be tube fed.