Brain-computer interfaces in end-of-life decision-making

An article recently published in the Journal of Medical Ethics and open to the public is calling necessary attention to the clinical approach of treating patients in permanent vegetative state (PVS) and minimally conscious state (MCS) in the United Kingdom.[1] The administration of artificial nutrition and hydration (ANH) is a central element of caring for patients with severe brain injury, for it allows physicians to keep the patient alive while exploring other treatment options. Unfortunately, it is most often the case that these other options are unsuccessful in improving the patient’s condition, and after a period of 12 months, it is very unlikely that the patient will ever regain full consciousness. For many families, this exhaustion of viable alternatives means that the next step is to ensure that the patient is able to die peacefully and mercifully. As it stands in the UK, the only legal method of ensuring death for the patient is through the withdrawal of ANH. Additionally, what distinguishes the situation in the UK from that in the United States is that – under British law – the withdrawal of this life-sustaining treatment must be approved by the courts, and relatives of the patient – unless specified in an advanced directive – “do not have a deciding voice on this (or any other) treatment decision for an incapacitated adult family member”[2]. Therefore, it is up to the attending physicians to make the clinical decisions based on the best interest of the patient, taking into account what the patient would have wanted. This leaves the patient’s family without much recourse other than to accept withdrawal of ANH as the only solution, and watch as their loved one suffers a long, slow death. This is where the research study by Professors Celia and Jenny Kitzinger has the most to offer. Whereas previous scholarship on the issue in the UK have centered on the philosophical, medical, and legal ethicality of withdrawing ANH from PVS/MCS patients, this study centers on the perspectives of the families who have experienced this first-hand. By interviewing 51 individuals, the researchers were able to see that many yearned for a less distressing and more “merciful way of allowing people to die”[3]. Many interviewees could not bear the thought of seeing their family members essentially starve to death as the ANH was withdrawn, thinking that such treatment could only be described as “barbaric”, “cruel”, and “unacceptable”[4]. The prevailing opinion among most of the interviewees was that a kinder and more compassionate way of seeing their loved ones die would be through terminal sedation or some kind of lethal injection. It is important to note that euthanasia and assisted suicide are illegal under British law, punishable with a maximum penalty of up to life imprisonment,[5] and it is easy to see how the use of a lethal injection to deliberately end the patient’s life can be construed as active euthanasia. Thus, it would have to overcome the legislative hurdle of becoming legal in order to be considered a viable option for the patients and their families. Terminal sedation, on the other hand, takes on a different role. When coupled with the termination of medical treatment, terminal sedation is widely accepted as a moral action, for it does no more than to ease the symptoms and suffering associated with the patient’s illness. Terminal sedation is not meant to end a person’s life or hasten their death; it is meant to ease the process of dying. In the case of the PVS/MCS patient, the sedation would ensure unconsciousness so that ANH can be withdrawn, and the patient can die peacefully. This may comfort and relieve the fears of the family members of a PVS/MCS patient, but it does not negate the fact that withdrawal of ANH would still be a necessary step to cause the patient’s death. Consequently, family members will still have to consider the withdrawal of ANH in order for terminal sedation to be utilized in the dying process; and this is something that the research data show many families are unwilling to do. The authors hope that this article, in sharing the lived and real experiences of families who have gone through the ordeal of having a family member in a vegetative or minimally conscious state, will contribute to the philosophical debate surrounding the withdrawal of ANH and the full ethical consideration of other methods of bringing about the death of PVS/MCS patients. Further Reading: Full article in the Journal of Medical Ethics http://jme.bmj.com/content/early/2014/01/03/medethics-2013-101799.short?g=w_jme_ahead_tab [1] Kitzinger C, Kitzinger J. Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: family perspectives. J Med Ethics. Published Online First: 15 Jan 2014. http://jme.bmj.com/content/early/2014/01/03/medethics-2013-101799.short?g=w_jme_ahead_tab [2] Ibid. [3] Ibid. [4] Ibid. [5] National Health Services. Euthanasia and Assited Suicide. Retrieved from NHS Choices: http://www.nhs.uk/conditions/euthanasiaandassistedsuicide/Pages/Introduction.aspx

PC-FACS

Unresponsive wakefulness syndrome: Outcomes from a vicious circle.

Deciding on artificial nutrition and hydration (ANH) at the end of life (EoL) may cause concerns in patients and their family caregivers but there is scarce evidence regarding their preferences. Therefore, the aim of this study was to assess the impact of factors associated with ANH decision making. Prospective, Cross-sectional survey. Adult patients admitted to hospital for symptoms of advanced cancer as well as their family caregivers completed a self-administered questionnaire. Items included personal views and concerns about ANH. Family caregivers additionally recorded their preference for their loved one and, if applicable, previous experience with ANH decisions. Thirty-nine out of sixty-five patients and 30/72 relatives responded. Higher age of the patient was significantly correlated with both the patient's and the relative's decision to forgo ANH (Kruskal-Wallis test, p < 0.01). Thirty-nine percent of patients, 37 % of relatives if deciding for themselves, and 24 % of relatives if deciding on behalf of their loved one opted against ANH; 36, 40 and 52 % preferred artificial hydration (AH) only (χ (2) test, p <0.001), while 23, 23 and 24 %, respectively, wished to receive ANH. Patients felt more confident about decisions on artificial nutrition (AN) than caregivers (T test, p < 0.05) and less concerned about adverse effects of forgoing ANH on pain, agitation and sensation of hunger and thirst (χ (2) test, p < 0.05). Satisfaction of patients with communication regarding forgoing ANH (5.0 ± 2.8 on a Likert scale from 0 to 10) correlated with their confidence (Spearman's rho, p < 0.01). A thorough consultation with the attending physician on ANH issues was the favoured source of support for 77 % of patients and 97 % of relatives. A majority of patients considered their relatives' opinion (67 %) and their own advance directives (62 %) as crucial for making ANH decisions, and 46 % of them had such a document completed. Cancer patients and their relatives have similar preferences regarding ANH at the EoL, but relatives are reluctant to withhold AH if deciding for their loved one. While patients seem to be confident with ANH decision making, their caregivers may particularly benefit from discussing ANH options to dissipate fears.

Schiavo Case Still Triggers Review of Ethics

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.

Terminal cancer patients' wishes and influencing factors toward the provision of artificial nutrition and hydration in Taiwan

Previous European surveys showed the support of healthcare professionals for treatment withdrawal [i.e., artificial nutrition and hydration (ANH) in chronic vegetative state (VS) patients]. The recent definition of minimally conscious state (MCS), and possibly research advances (e.g., functional neuroimaging), may have lead to uncertainty regarding potential residual perception and may have influenced opinions of healthcare professionals. The aim of the study was to update the end-of-life attitudes towards VS and to determine the end-of-life attitudes towards MCS. A 16-item questionnaire related to consciousness, pain and end-of-life issues in chronic (i.e., >1 year) VS and MCS and locked-in syndrome was distributed among attendants of medical and scientific conferences around Europe (n = 59). During a lecture, the items were explained orally to the attendants who needed to provide written yes/no responses. Chi-square tests and logistic regression analyses identified differences and associations for age, European region, religiosity, profession, and gender. We here report data on items concerning end-of-life issues on chronic VS and MCS. Responses were collected from 2,475 participants. For chronic VS (>1 year), 66% of healthcare professionals agreed to withdraw treatment and 82% wished not to be kept alive (P < 0.001). For chronic MCS (>1 year), less attendants agreed to withdraw treatment (28%, P < 0.001) and wished not to be kept alive (67%, P < 0.001). MCS was considered worse than VS for the patients in 54% and for their families in 42% of the sample. Respondents' opinions were associated with geographic region and religiosity. Our data show that end-of-life opinions differ for VS as compared to MCS. The introduction of the diagnostic criteria for MCS has not substantially changed the opinions on end-of-life issues on permanent VS. Additionally, the existing legal ambiguity around MCS may have influenced the audience to draw a line between expressing preferences for self versus others, by implicitly recognizing that the latter could be a step on the slippery slope to legalize euthanasia. Given the observed individual variability, we stress the importance of advance directives and identification of proxies when discussing end-of-life issues in patients with disorders of consciousness.

peer reviewed

Nutrition is a basic patients' need and an important component of nursing. End-of-life cancer patients can experience difficulties in eating and drinking, sometimes requiring artificial nutrition and hydration (ANH). Nurses' knowledge and attitudes greatly influence nursing care. Nurses may lack knowledge of ANH. To date, no study has explored the knowledge and attitudes of oncology and palliative care nurses toward end-of-life ANH. To describe oncology and palliative care nurses' knowledge of and attitudes toward ANH. A multicenter cross-sectional study was conducted in 7 regions of Italy using the Italian version of the Questionnaire on Knowledge and Attitudes in Providing ANH for Terminal Cancer Patients. Attitudes were divided into benefits and burdens of providing ANH. Data were analyzed by descriptive statistics. High percentages of oncology and palliative care nurses showed reasonable knowledge about ANH. More disagreement was evidenced about benefits and burdens of ANH, and lower importance was given to them. Some misconceptions and a low level of awareness exist among some nurses about ANH. More nursing studies should be conducted and extended to different care settings. Moreover, guidelines should be reinforced with a nursing perspective to better define nurses' role in the decision-making process on ANH. This exploration of nurses' knowledge of and attitudes toward ANH in end-of-life cancer patients can contribute to an understanding of how nurses can be involved in better meeting cancer patients' nutritional needs at the end of life.

To analyze and compare the knowledge and opinions of registered dietitian nutritionists (RDNs) about artificial nutrition and hydration (ANH) in a terminal illness. Beliefs of speech-language pathologists (SLPs) were also considered and compared against RDN data. This is a descriptive analysis utilizing survey responses from RDNs and SLPs regarding ANH in a case study patient with advanced dementia. There was a strong belief among RDNs that ANH at end of life (EOL) would improve nutritional status, although a correlation was found between those in favor of ANH and believing it was ethical to withhold ANH at EOL (R2 = 0.109, p = 0.002). Responses indicated that SLPs need more education regarding ANH techniques, while RDNs felt ANH would improve aspiration risk. Place of employment, religion and age of respondents were also found to impact beliefs. Clinicians, specifically RDNs, working with patients at EOL need more evidenced-based education on the risks and benefits of ANH. Decisions regarding care of patients at EOL should be void of clinicians' personal bias which may affect ethical treatment in the clinical setting. Further controlled trials must be performed before claims can be made regarding ANH at EOL.

An uncertain future? Counselling and decision-making around treatment withdrawal for newborn infants.

BackgroundThe Patient Right to Autonomy Act (PRAA), implemented in Taiwan in 2019, enables the creation of advance decisions (AD) through advance care planning (ACP). This legal framework allows for the withholding and withdrawal of life-sustaining treatment (LST) or artificial nutrition and hydration (ANH) in situations like irreversible coma, vegetative state, severe dementia, or unbearable pain. This study aims to investigate preferences for LST or ANH across various clinical conditions, variations in participant preferences, and factors influencing these preferences among urban residents.MethodsEmploying a survey of legally structured AD documents and convenience sampling for data collection, individuals were enlisted from Taipei City Hospital, serving as the primary trial and demonstration facility for ACP in Taiwan since the commencement of the PRAA in its inaugural year. The study examined ADs and ACP consultation records, documenting gender, age, welfare entitlement, disease conditions, family caregiving experience, location of ACP consultation, participation of second-degree relatives, and the intention to participate in ACP.ResultsData from 2337 participants were extracted from electronic records. There was high consistency in the willingness to refuse LST and ANH, with significant differences noted between terminal diseases and extremely severe dementia. Additionally, ANH was widely accepted as a time-limited treatment, and there was a prevalent trend of authorizing a health care agent (HCA) to make decisions on behalf of participants. Gender differences were observed, with females more inclined to decline LST and ANH, while males tended towards accepting full or time-limited treatment. Age also played a role, with younger participants more open to treatment and authorizing HCA, and older participants more prone to refusal.ConclusionDiverse preferences in LST and ANH were shaped by the public’s current understanding of different clinical states, gender, age, and cultural factors. Our study reveals nuanced end-of-life preferences, evolving ADs, and socio-demographic influences. Further research could explore evolving preferences over time and healthcare professionals’ perspectives on LST and ANH decisions for neurological patients..

Nutritional problems often manifest during late-stage dementia, and some families may request to instigate artificial nutrition and hydration (ANH) therapies. In the US, an estimated one-third of nursing home patients with a severe cognitive impairment have artificial feeding tubes inserted. Fear that a relative could experience extreme hunger or thirst if they are not mechanically fed tends to be the main driver behind family's requests to implement artificial or enteral feeding methods. In contrast, artificial hydration is rarely given to older people with dementia in the UK and this practice of non-intervention tends to apply across all healthcare and hospice type environments. This literature review aims to evaluate the evidence to support the use and non-use of ANH. A literature review was undertaken to examine the evidence around ANH for patients with dementia to offer support to families or carers contemplating feeding choices. This paper challenges the implementation of invasive ANH worldwide. It highlights how resorting to ANH does not necessarily lead to improvements in comfort, survival or wound healing. The risk of aspiration does not appear to significantly alter either.

Providing artificial nutrition and hydration (ANH) to patients with terminal cancer can worsen their symptoms at the end of life. However, withholding or withdrawing ANH raises ethical, emotional, and cultural challenges for health professionals, especially in the intensive care unit (ICU). This study aimed to identify the factors associated with ICU nurses’ behavioral intentions toward providing ANH to patients with terminal cancer. A questionnaire survey study was conducted with 616 ICU nurses from 2 medical centers in Taiwan. The results showed that “food and water as basic care,” “requests from patients with terminal cancer for artificial nutrition and hydration,” “ethical acceptability of withholding artificial nutrition and hydration,” physicians, and knowledge of ANH affected nurses’ behavioral intentions (adjusted R2 = 0.175). Physician input was most influential on nurses’ behavioral intentions toward providing ANH to patients with terminal cancer; thus, nurses should be encouraged to discuss medical decisions with physicians. The study results also suggest that nurses’ knowledge of ANH and ethical judgment can be enhanced by scenario-based teaching materials and multidisciplinary team discussions.