Families’ Roles in Medical Decisions Pertaining to the Withdrawal of Clinically Assisted Nutrition and Hydration

I. Introduction

The critical role of families in deciding questions pertaining to life-sustaining treatment, specifically clinically assisted nutrition and hydration (CANH) persists as a pivotal yet underexplored facet within existing legal scholarly discourse and clinical practice. Adult patients in Prolonged Disorders of Consciousness (PDOC) lack capacity for the purposes of the Mental Capacity Act (MCA) to autonomously decide CANH questions[1]. Patients in a minimally conscious state (MCS), chronic vegetative state (CVS), and persistent vegetative state (PVS) fall within the ambit of PDOC [2]. Pursuant to the MCA, if a patient has made no valid and applicable advance decision, decisions relating to their treatment must be made in accordance with their best interests [3]. The best interests test is under section 4 of the MCA, and it contains a non-exhaustive list of factors that the decision-maker should consider. Notably, if there is no appointed person under a lasting power of attorney or a person appointed by the court, this decision is made by the treating clinician [4]. However, instances of disagreement or ambiguity regarding the assessment of best interests necessitate recourse to judicial adjudication, following the precedent set forth in NHS Trust v. Y [5].

This article delves into issues surrounding the application of the best interests test, particularly within the familial context. It scrutinizes families’ roles and experiences in decision-making regarding the withdrawal of CANH. This article posits that clinicians, in their assessment of best interests, must ensure that families participate more comprehensively in the decision-making process . Families’ roles in the assessment of best interests must be expanded in order to align with the spirit of the MCA. The article further contends that the current application of the best interests test can aggravate familial distress, and, therefore, warrants a thorough revisitation to foster enhanced familiar support and inclusivity within the decision-making process.

II. NHS Trust v. Y

To summarize the legal position, the Supreme Court ruling in NHS Trust v. Y established that resorting to court is not mandatory, provided that clinicians and families concur that withdrawing CANH is in the best interests of the patient, and the MCA and guidance were followed in reaching the decision [6]. Lady Black in NHS Trust v. Y underscored that the rationale behind this stance is that going through a court process can augment familial distress amidst an already emotionally charged period. Along similar lines, families often feel responsible for initiating the conversation around initiating court proceedings, notwithstanding the Court of Protection’s clarification that “the onus is on the public body to make an application to the court” [7]. This is exacerbated by the fact that after initiating proceedings, many families experience “fighting and bullying medical professionals” because of delays in the process of initiating court proceedings [8]. The Kitzingers’ research brings this to light, as they have highlighted that medical records required for court proceedings were distributed in different institutions and collecting them required months. Such delays perpetuate a negative relationship between doctors and families, leading to potentially adverse familial experiences during the decision-making process. Moreover, delays can lead to a sustained treatment of the patient even when such treatment is not in their best interests. Research conducted by the Kitzingers illustrates this through patient ‘G’, who was receiving CANH for 23 years, despite how clear it was that it was not in G’s best interests [9]. These delays, combined with the fact that the parents were compelled to initiate the conversation around withdrawing CANH for professionals to consider this option, formed additional burdens on families. Furthermore, families’ apprehension surrounding the perceived burdensomeness of the court process may dissuade them from pursuing legal action, maintaining CANH, even if it goes against the patient’s best interests [10]. This ultimately culminates in a protracted state of suffering likened to a “worse than death” scenario because of the “constant threat of medical complications and death” [11]. It also keeps families in a difficult position where they either have to watch their relatives be alive when they know it is incongruent with their wishes, or they have to deal with the burden of attending court. Both paths are clearly unsatisfactory.

However, it is imperative to eschew a reductionist account of familial experiences and acknowledge that families simultaneously experience positive feelings towards the court process. Families may view court judgments as “memorials of the living dead,” providing closure for the family and comforting the family by validating the difficult situation that the family has been through [12]. Lastly, court judgments can reassure families that decisions are being made judiciously and alleviating the burden of bearing sole responsibility for the patient’s fate [13]. During an interview with the Kitzingers, an interviewee said that if the court did not “make the ultimate decision,” she would “always feel that she chose to do it” [14]. The court reassures the family that withdrawing CANH is the right decision. Therefore, NHS Trust v. Y will not necessarily have a negative impact on families. There are positive experiences in relation to the court approval requirement.

The multi-faceted nature of familial experiences precludes a definitive assessment of NHS Trust v Y. It is clear that it will at least mitigate some issues that families experience. Firstly, it provides an avenue — court — through which families can disagree with healthcare professionals. However, in practice, this does not happen as often as it should. There is evidence that many families do not go to court because “they do not have the knowledge to…contest proceedings” in court [15]. Therefore, practical impediments surrounding court intervention may inadvertently inhibit families from voicing their opinions. Lady Black’s ambiguous delineation of the circumstances necessitating court involvement further compounds these difficulties. She explained that applications “will be required (or desirable)” [16]. Though she makes it clear that disputes and unclear situations should go to court, the words “required (or desirable) fail to clarify whether it is a legal requirement or a matter of good practice. It can be read as providing good recommendations in practice, but it also may be viewed as a legal obligation because of the use of the word ‘required’ [17]. This lack of clarity can deter both clinicians and families from pursuing legal redress. This can mean that families will not have an avenue in many cases where they disagree with the clinician’s decision regarding the withdrawal of CANH.

III. Communication Between Clinicians and Families

Moving onto the MCA best interests test, Turner-Stokes’s research indicates that clinicians “regularly” assess best interests in conjunction with families [18]. However, subsequent research by the Kitzingers provides contradictory results, revealing a troubling lack of communication between clinicians and families regarding the suitability of sustaining CANH. The Kitzingers highlight that most families “had no discussion of the options…nor were they invited to contribute any information about the patients’ likely wishes” [19]. Along similar lines, best interests meetings with families do not occur in every case, and even when they take place, the conversation often veers away from consideration of the patient’s best interest and instead fixates on issues such as logistical care arrangements (i.e., moving the patient from one place to another) [20]. The most recent report by the National Mental Capacity Forum (NMCP) confirms the lack of communication. It indicates that, while implementation of the MCA has generally improved, “eleven percent of healthcare respondents…reported that the person’s wishes, thoughts, and feelings were ‘rarely’ given proper weight,” and thirteen percent stated that consultation “rarely or never happens” [21]. This persists despite the clarification articulated by the Supreme Court in Aintree, which preceded NHS Trust v Y and where the court highlighted the importance of “considering matters from the patient’s point of view…insofar as it is possible to ascertain the patient’s wishes and feelings” [22]. This is problematic. Consulting families is imperative not only to ensure that the decision is made in accordance with the patient’s best interests; it also provides reassurance to the family that the decision is appropriate and allows families to understand their options. The information that families have can affect their views in relation to their relatives [23]. Moreover, involving the family in assessing best interests has been shown to facilitate more accurate diagnostic assessments, as evidenced by cases transitioning from MCS to emerged [24]. Patients can be more responsive with their relatives compared to clinicians because they are more familiar with them, so involving families has a direct impact on the assessment of patients. Assessing the patient’s state accurately is important because if the patient has emerged from a MCS, families no longer have to deal with the distress of their relative being in a PDOC. At the same time, the inherent subjectivity of familial interpretations underscores the need for caution. For instance, there have been cases where families have interpreted a finger spasm as deliberate movement of the finger by the patient because they are trying to be hopeful about their relative’s state [25]. Notwithstanding the risk of optimistic biases which may cloud objective assessments, a recalibration of the clinician-family dynamic is necessary to reflect families’ pivotal role in decision-making and to align with the MCA and case law.

The lack of communication and consultation can be traced to a fundamental lack of clarity surrounding healthcare professionals’ obligations under the MCA, despite the MCA Code of Practice and the British Medical Association (BMA) and Royal College of Physicians (RCP) guidance [26]. The NMCP report shows that clinicians lack confidence when applying the MCA in relation to the best interests test [27]. Therefore, they may act in ways that are against good practice because they do not know any better. This has led to clinicians giving families contradictory advice. For example, a family member who has a relative in a PDOC stated that a clinician told them that withdrawing CANH would lead to an “excruciatingly painful death,” while another clinician “with experience of such deaths” told them that the death will be peaceful [28]. If the families believed the former clinician and the clinician decided to withdraw CANH, it would have likely led them to opposing withdrawal and having a more distressing experience.

Beyond the deficiency in comprehension and application, the lack of clarity over clinicians’ roles under the MCA unveils a systemic issue. There is no cohesive process for the management of consultations and withdrawal of CANH. This has led to a medical system whereby documents are scattered, and responsibility is not assumed by anyone. The lack of clarity is impeding families’ access to informed guidance. For example, in the case of ‘G,’ where the patient was treated for 23 years despite it being clear that treatment was not in her best interests, healthcare professionals wanted to help “but did not know there were options or did not feel they had the skills to challenge what was happening” [29]. The failure to communicate with families and adequately care for their relatives erodes the clinician-family relationship [30]. It further compels families to overcompensate by assuming a disproportionate burden regarding caring for the patient to bridge gaps within the healthcare system [31]. These issues reflect the need for enhanced communication between clinicians and families.

IV. An Individualistic Approach to Best Interests

The MCA Code of Practice clarifies the family’s role in assessing the patient’s best interests, stating that “family members may be able to provide valuable background information, but their personal views and wishes about what they would want for the person must not influence the assessment” [32]. The role of family is limited to communicating the patient’s wishes and feelings. This approach, grounded in a paradigm of individualistic decision-making, sidelines the broader familial context within which patients exist. This can be problematic in that clinicians are not giving enough consideration to families in situations where patients want the decision to be made by their families. This reductive framework fails to accommodate cultural nuances wherein familial involvement is customary, thereby perpetuating a Eurocentric bias that marginalizes alternative perspectives. According to Dr Lade Smith, “it might be that people make decisions for you, and that is usual in your cultural background” [33]. This approach has further been reflected in legal scholarship. For instance, Wade and Kitzinger explained how a “family interests approach may ignore the patient’s wishes and autonomy and will be discounted here” [34]. This is not to say that the patient’s autonomy should be ignored. However, the current approach fails to account for cultural differences.

Building on this, the principle of autonomy is important in relation to patients who lack capacity. As asserted by Foster, “the actuating principle of the MCA is respect for patient autonomy” [35]. However, the principle can be problematic so far as it relates to decision-making in this area because it places too much value on the individual and not enough on the family in every case. Maclean has encapsulated the main tension as being between patient autonomy and “the freedom of the doctor to exercise clinical judgment” [36]. While this is important, Maclean failed to account for another tension, which is “between a patient’s legal right to refuse treatment and her moral obligations to others” [37]. Therefore, the current decision-making process solely takes into account the patient as an individual and not as a person who is part of a community [38]. Though autonomy is a fundamental component of the MCA, this application of the best interests test undermines autonomy because it fails to reflect the possibility of a patient’s “philosophy of life” that is more collective [39]. It assumes that being individualistic is what the patient wants. Clinicians “facilitate autonomy, regardless of whether autonomy is desired by the patient” [40]. This is not an error in the way that the MCA was written. The best interests test is written in a way that reflects the collective nature of decision-making by including sections that discuss consultations. Instead, this is a criticism of the way it has been interpreted and applied by clinicians.

The discourse surrounding the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which has been ratified by the UK along with the Optional Protocol, posits a similar framework [41]. Article 12(4) of the CPRD provides that “safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, wills, and preferences of the person.” This has been interpreted by the UN Committee on the Rights of Persons with Disabilities as a call for the “best interpretation of wills and preferences” [42]. An emphasis on wills and preferences without accounting for the familial context risks marginalizing the role and interests of families [43].

There is a literature gap concerning the differential application of the best interests test across diverse cultural backgrounds. This critical gap is compounded by a systemic bias, as mental capacity is “generated from a Eurocentric tradition” [44]. Academics are not sufficiently interrogating the intersectionality of cultural norms in best interests assessment, which is necessary to foster a more inclusive framework that accurately accounts for patients’ autonomy while being satisfactory to families.

V. Ways Forward

Navigating the complexities of best interests decision-making presents a conundrum devoid of a singular prescriptive solution. The appropriate rule of the family is further difficult, if not impossible, to define. However, it is clear that going forward, it is necessary to apply the best interests test in a holistic and inclusive way that reverberates with the overarching principles of the MCA. Firstly, proper consultation is necessary. Communication is important because it will facilitate collaborative decision-making between families and health-care professionals, shifting away from medical paternalism and providing comfort to families in a distressing situation [45]. Families should be involved at every stage of the process and kept up to date. While it is true that families may feel “threatened” after meetings because they “fear that they might be overruled,” proper communication will instill a sense of relief, as families will understand their role in decision-making, the treatment options, and nature of withdrawing CANH [46].

In this respect, it is necessary for clinicians to provide support for families by initiating conversations for the purposes of clarifying families’ role in assessing best interests, which is ascertaining their relative’s wishes and feelings but not making the decision. This can relieve families who falsely believe that they are the sole decision-makers [46]. These conversations should also involve explaining the nature of CANH and withdrawing it to families. Being transparent and honest with the patient’s family is central to this. Clinicians should reassure the families that they are not killing their relatives if they withdraw CANH [47]. This is likely to mitigate the issue of families' perception of withdrawing CANH as cruel. Proper communication should further entail support for family members, for example through “offering psychological help and effective case management” [48].

Crucially, the nexus between clinicians and families necessitates not merely acquiescence but genuine agreement, underpinned by a shared understanding of the patient’s best interests [49]. Upon reaching an agreement, the decision and details as to the process of making it must be recorded in a timely manner. This requires healthcare professionals to view these assessments with a sense of urgency. Decisions should further be reviewed if family members request it or if the patient’s state changes [50]. This can happen systematically through time-limited treatment trials [51]. Time-limited trials can be effective because it allows for a revision of the appropriateness of CANH after a certain time, which should be determined on a case-by-case basis. This should be coupled with a “formal register of deaths” and official monitoring processes to foster a culture of accountability and transparency within healthcare systems, thereby facilitating the relationship between clinicians and families [52][53]. Clinicians are well-positioned to provide emotional and logistical support to families, thereby mitigating the distress of losing their relatives [54]. However, many of these requirements are already encapsulated in recent guidelines, and the Kitzingers show that this “seems to have produced only very slow change” [55]. Therefore, more needs to be done.

To this end, the treating clinician must possess a solid understanding of their responsibilities. Clinicians have a lot of discretion, which is not problematic in and of itself, but it becomes problematic because many are still unsure of their obligations under the MCA. The guidance is already present in the MCA, so “attention must now turn to translating the guidance into practice,” through comprehensive training of and support for clinicians [56]. Firstly, application of the guidance ought not to devolve into algorithmic tick-box exercises; decisions must be predicated upon a holistic application of the underlying principles governing the best interests process [57]. This will improve the assessment of the patient’s best interests, which will ultimately benefit families. As aptly articulated by the academic scholar Huxtable, the health service should be responsible for “informing and educating” professionals about their duties under the MCA [58]. Regulatory bodies such as the Care Quality Commission (CQC) should, as a matter of routine, solicit substantiating evidence of clinicians’ assessment of best decisions. In this regard, the formal register can serve as a pivotal tool by allowing the CQC to regularly monitor decisions and the provision of treatment. The Kitzingers have gone as far as suggesting a mechanism whereby healthcare professionals are only paid when appropriate standards of treatment are documented on the register [59]. The integration of these recommendations will streamline the healthcare infrastructure, rendering it more accessible and navigable for families.

In addressing concerns regarding the Eurocentric bias in the application of the best interests test, it is imperative to acknowledge that the best interests test is constructed in a way that allows flexibility in application. While structurally applied in an overly individualistic manner, the framework allows for collective assessments [60]. Dr Lade Smith explains that this flexibility can be actualized in practice if the healthcare professional who is assessing the patient’s best interests accommodates diverse decision-making modalities– be it individual or collective. In this situation, rather than “people being assessed,” it should be “the people doing the assessment” [61]. This objective can be realized by diversifying the pool of assessors and enhanced training of assessors. However, such inclusive deliberations must align with “the limits derived from the patient, taking note of whether the individual has broken with their family’s traditions” [62]. Therefore, while autonomy remains sacrosanct, avenues for familial participation in decision-making warrant substantive consideration, consonant with the patient’s expressed preferences.

VI. Conclusion

Decision-making surrounding the withdrawal of CANH can be a source of distress and disagreement for many families. Notwithstanding this, there remains a gap in the literature on the role and experiences of families in assessing the patient’s best interests. It is clear that the current application of the best interests test tends to magnify familial hardship while marginalizing their involvement in decision-making. This is evidenced by the difficulties associated with legal proceedings, communication gaps between clinicians and families, clinicians’ overlooking of families’ roles in ascertaining the patient’s wishes and feelings, and a failure to accommodate a collective approach to assessments. However, advocating for an undue elevation of familial experiences over the patient's best interests would be misguided. Instead, clinicians must adopt a more inclusive approach within the framework of the MCA. This cannot happen without a proper understanding of clinicians’ obligations under the MCA. Moreover, it is worth mentioning that clinicians grapple with the task of balancing often conflicting considerations, compounding the complexity of their responsibilities. For example, families may report different wishes and feelings. Therefore, understanding their responsibilities is not the full picture. This is a systemic issue requiring further research that translates findings into policy and practice, fostering decision-making processes that better reflect the realities of familial experiences. Future research should be interdisciplinary, as this area involves law, medicine, ethics, and social science. Such endeavors are not only pivotal for families and patients but also hold broader societal significance.

Sources

[1] Mental Capacity Act 2005.

[2] Emily Jackson. Medical Law: Text, Cases, and Materials. 6th ed. Oxford: Oxford University Press, 2022.

[3] Mental Capacity Act 2005, § 1(5).

[4] Derick Wade and Celia Kitzinger. "Making Healthcare Decisions in a Person’s Best Interests When They Lack Capacity: Clinical Guidance Based on a Review of Evidence." Clinical Rehabilitation 33, no. 10 (2019): 1571.

[5] An NHS Trust v Y, [2018] UKSC 46.

[6] Ibid.

[7] Alex Keene, Nuala Kane, Scott Kim, and Gareth Owen. "Taking Capacity Seriously? Ten Years of Mental Capacity Disputes Before England’s Court of Protection." International Journal of Law and Psychiatry 62 (2019): 56.

[8] Celia Kitzinger and Jenny Kitzinger. "Court Applications for Withdrawal of Artificial Nutrition and Hydration from Patients in a Permanent Vegetative State: Family Experiences." Journal of Medical Ethics 42 (2016): 11.

[9] Jenny Kitzinger and Celia Kitzinger. "Futile and Unwanted Life-Prolonging Treatment Continues for Some Patients in Permanent Vegetative States (and What to Do About It): Case Study, Context, and Policy Recommendations." International Journal of Mental Health and Capacity Law (2017): 129.

[10] Simon Halliday, Adam Formby, and Richard Cookson. "An Assessment of the Court’s Role in the Withdrawal of Clinically Assisted Nutrition and Hydration from Patients in the Permanent Vegetative State." Medical Law Review 23, no. 4 (2015): 556.

[11] Amy Chinner, Ruth Pauli, and Damian Cruse. "The Impact of Prolonged Disorders of Consciousness on Family Caregivers’ Quality of Life – A Scoping Review." Neuropsychological Rehabilitation 31, no. 7 (2021): 1.

[12] Ibid.

[13] Ibid.

[14] Ibid.

[15] Charles Foster. "The Rebirth of Medical Paternalism: an NHS Trust v Y." Journal of Medical Ethics 45, no. 1 (2019): 3.

[16] Ibid.

[17] Richard Huxtable. "Dying Too Soon or Living Too Long? Withdrawing Treatment from Patients with Prolonged Disorders of Consciousness After Re Y." BMC Medical Ethics 20 (2019): 91.

[18] Lynne Turner-Stokes. "A Matter of Life and Death: Controversy at the Interface Between Clinical and Legal Decision-Making in Prolonged Disorders of Consciousness." Journal of Medical Ethics 43, no. 7 (2017): 469.

[19] Celia Kitzinger and Jenny Kitzinger. "Supporting Families Involved in Court Cases about Life-Sustaining Treatment: Working as Academics, Advocates and Activists." Bioethics 33 (2019): 896.

[20] Jenny Kitzinger and Celia Kitzinger. "Family Experiences of Vegetative and Minimally Conscious States." Healthtalk, December 2019. Accessed March 1, 2024. https://healthtalk.org/family-experiences-vegetative-and-minimally-conscious-states/family-experiences-of-decision-making.

[21] National Mental Capacity Forum. National Mental Capacity Forum Chair’s Annual Report 2020 – 2021. HM Government, 2020.

[22] Aintree University Hospitals NHS Foundation Trust v James,[2013] UKSC 45.

[23] Ibid.

[24] Amy Pundole, Rosemary Varley, and Suzanne Beeke. "Assessing Emergence from a Prolonged Disorder of Consciousness: Current Opinion and Practice in the UK." Neuropsychological Rehabilitation 31, no. 7 (2021): 1003.

[25] Ibid.

[26] Mental Capacity and Deprivation of Liberty. Law Commission No 372, 2017.

[27] Ibid.

[28] Celia Kitzinger and Jenny Kitzinger. "Deaths After Feeding-Tube Withdrawal from Patients in Vegetative and Minimally Conscious States: A Qualitative Study of Family Experience." Palliative Medicine 32, no. 7 (2018): 1180.

[29] Jenny Kitzinger and Celia Kitzinger. "Futile and Unwanted Life-Prolonging Treatment Continues for Some Patients in Permanent Vegetative States (and What to Do About It): Case Study, Context, and Policy Recommendations." International Journal of Mental Health and Capacity Law (2017): 129.

[30] Laura Gonzalez-Lara et al. "The Multiplicity of Caregiving Burden: A Qualitative Analysis of Families with Prolonged Disorders of Consciousness." Brain Injury 35, no. 2 (2021): 200.

[31] Ibid.

[32] Department for Constitutional Affairs, Mental Capacity Act 2005 Code of Practice (London: 2007) < https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/921428/Mental-capacity-act-code-of-practice.pdf >

[33] Keene A, ‘Race, Culture and Capacity – In Conversation with Dr Lade Smith CBE’ (Mental Capacity Law and Policy, 4 August 2020) <https: data-preserve-html-node="true"//www.mentalcapacitylawandpolicy.org.uk/race-culture-and-capacity-in-conversation-with-dr-lade-smith-cbe/> Accessed 10 July 2022

[34] Derick Wade, Celia Kitzinger, ‘Making Healthcare Decisions in a Person’s Best Interests When They Lack Capacity: Clinical Guidance Based on a Review of Evidence’ (2019) 33(10) Clinical Rehabilitation 1571

[35] Charles Foster, ‘The Rebirth of Medical Paternalism: an NHS Trust v Y’ (2019) 45(1) J Med Ethics 3.

[36] Ibid.

[37] Ibid.

[38] Paul Skowron, ‘The Relationship Between Autonomy and Adult Mental Capacity in the Law of England and Wales’ (2018) 27(1) Medical Law Review 32.

[39] Keene A, ‘Race, Culture and Capacity – In Conversation with Dr Lade Smith CBE’ (Mental Capacity Law and Policy, 4 August 2020) <https: data-preserve-html-node="true"//www.mentalcapacitylawandpolicy.org.uk/race-culture-and-capacity-in-conversation-with-dr-lade-smith-cbe/>

[40] Giles Birchley ‘“What God and the Angels Know of us?” Character, Autonomy, and Best Interests in Minimally Conscious State’ (2018) 26 Medical Law Review 392

[41] United Nations General Assembly, Convention on the Rights of Persons with Disabilities (adopted 24 January 2007) 2515 UNTS 3

[42] Ibid

[43] Laura Pritchard-Jones, ‘Exploring the potential and the pitfalls of the United Nations Convention on the Rights of Persons with Disabilities and General Comment No 1 for People with Dementia’ (2019) 66 International Journal of Law and Psychiatry 467

[44] Ibid.

[45] Ibid.

[46] Sara Fovargue and Alexandra Mullock. The Legitimacy of Medical Treatment: What Role for the Medical Exception? Taylor & Francis Group, 2015.

[47] Celia Kitzinger and Jenny Kitzinger. "Deaths After Feeding-Tube Withdrawal from Patients in Vegetative and Minimally Conscious States: A Qualitative Study of Family Experience." Palliative Medicine 32, no. 7 (2018): 1180.

[48] Ibid.

[49] Charles Foster. "The Rebirth of Medical Paternalism: an NHS Trust v Y." Journal of Medical Ethics 45, no. 1 (2019): 3.

[50] Derick Wade and Celia Kitzinger. "Making Healthcare Decisions in a Person’s Best Interests When They Lack Capacity: Clinical Guidance Based on a Review of Evidence." Clinical Rehabilitation 33, no. 10 (2019): 1571.

[51] Derick Wade. "Using Best Interests Meetings for People in a Prolonged Disorder of Consciousness to Improve Clinical and Ethical Management." Journal of Medical Ethics 44, no. 5 (2018): 336.

[52] Alice Gray, Mark Pickering, and Stephen Sturman. "Absence of Monitoring in Withdrawal of Clinically-Assisted Nutrition and Hydration (CANH) and Other Treatments: A Cause for Concern?" Clinical Medicine 21, no. 3 (2021): 235.

[53] Celia Kitzinger and Jenny Kitzinger. "Causes and Consequences of Delays in Treatment - Withdrawal from PVS Patients: A Case Study of Cumbria NHS Clinical Co Miss S and Or [2016] EWCOP 32." Journal of Medical Ethics 43 (2016): 459.

[54] Ibid.

[55] Jenny Kitzinger and Celia Kitzinger. "Futile and Unwanted Life-Prolonging Treatment Continues for Some Patients in Permanent Vegetative States (and What to Do About It): Case Study, Context, and Policy Recommendations." International Journal of Mental Health and Capacity Law (2017): 129.

[56] Richard Huxtable. "Dying Too Soon or Living Too Long? Withdrawing Treatment from Patients with Prolonged Disorders of Consciousness After Re Y." BMC Medical Ethics 20 (2019): 91.

[57] Derick Wade and Celia Kitzinger. "Making Healthcare Decisions in a Person’s Best Interests When They Lack Capacity: Clinical Guidance Based on a Review of Evidence." Clinical Rehabilitation 33, no. 10 (2019): 1571.

[58] Richard Huxtable. "Dying Too Soon or Living Too Long? Withdrawing Treatment from Patients with Prolonged Disorders of Consciousness After Re Y." BMC Medical Ethics 20 (2019): 91.

[59] Jenny Kitzinger and Celia Kitzinger. "Futile and Unwanted Life-Prolonging Treatment Continues for Some Patients in Permanent Vegetative States (and What to Do About It): Case Study, Context, and Policy Recommendations." International Journal of Mental Health and Capacity Law (2017): 129.

[60] Ibid.

[61] Ibid.

[62] Ibid.