期刊论文详细信息
Philosophy, Ethics, and Humanities in Medicine
Nonconsensual withdrawal of nutrition and hydration in prolonged disorders of consciousness: authoritarianism and trustworthiness in medicine
Joseph L Verheijde1  Mohamed Y Rady2 
[1] Department of Physical Medicine and Rehabilitation, Mayo Clinic, Scottsdale, Arizona, USA;Department of Critical Care Medicine, Mayo Clinic Hospital, Mayo Clinic, Phoenix, Arizona, USA
关键词: Vegetative state;    Unresponsive wakefulness syndrome;    Sedatives;    Prolonged disorders of consciousness;    Opioids;    Minimally conscious state;    General anesthesia;    Euthanasia;    Dehydration;   
Others  :  1132046
DOI  :  10.1186/1747-5341-9-16
 received in 2014-01-29, accepted in 2014-10-24,  发布年份 2014
PDF
【 摘 要 】

The Royal College of Physicians of London published the 2013 national clinical guidelines on prolonged disorders of consciousness (PDOC) in vegetative and minimally conscious states. The guidelines acknowledge the rapidly advancing neuroscientific research and evolving therapeutic modalities in PDOC. However, the guidelines state that end-of-life decisions should be made for patients who do not improve with neurorehabilitation within a finite period, and they recommend withdrawal of clinically assisted nutrition and hydration (CANH). This withdrawal is deemed necessary because patients in PDOC can survive for years with continuation of CANH, even when a ceiling on medical care has been imposed, i.e., withholding new treatment such as cardiopulmonary resuscitation for acute life-threatening illness. The end-of-life care pathway is centered on a staged escalation of medications, including sedatives, opioids, barbiturates, and general anesthesia, concurrent with withdrawal of CANH. Agitation and distress may last from several days to weeks because of the slow dying process from starvation and dehydration. The potential problems of this end-of-life care pathway are similar to those of the Liverpool Care Pathway. After an independent review in 2013, the Department of Health discontinued the Liverpool Care pathway in England. The guidelines assert that clinicians, supported by court decisions, have become the final authority in nonconsensual withdrawal of CANH on the basis of “best interests” rationale. We posit that these guidelines lack high-quality evidence supporting: 1) treatment futility of CANH, 2) reliability of distress assessment from starvation and dehydration, 3) efficacy of pharmacologic control of this distress, and 4) proximate causation of death. Finally, we express concerns about the utilitarian-based assessment of what constitutes a person’s best interests. We are disturbed by the level and the role of medical authoritarianism institutionalized by these national guidelines when deciding on the worthiness of life in PDOC. We conclude that these guidelines are not only harmful to patients and families, but they represent the means of nonconsensual euthanasia. The latter would constitute a gross violation of the public’s trust in the integrity of the medical profession.

【 授权许可】

   
2014 Rady and Verheijde; licensee BioMed Central Ltd.

【 预 览 】
附件列表
Files Size Format View
20150303141748345.pdf 369KB PDF download
Figure 1. 74KB Image download
【 图 表 】

Figure 1.

【 参考文献 】
  • [1]Royal College of Physicians: Prolonged disorders of consciousness: National clinical guidelines. London, RCP. 2013. http://www.rcplondon.ac.uk/sites/default/files/prolonged_disorders_of_consciousness_national_clinical_guidelines_0.pdf webcite. Accessed 15 August, 2014
  • [2]Jennett B, Plum F: Persistent vegetative state after brain damage. Lancet 1972, 299(7753):734-737.
  • [3]Jox RJ, Bernat JL, Laureys S, Racine E: Disorders of consciousness: responding to requests for novel diagnostic and therapeutic interventions. Lancet Neurol 2012, 11(8):732-738.
  • [4]Savulescu J: A simple solution to the puzzles of end of life? Voluntary palliated starvation. J Med Ethics 2014, 40(2):110-113.
  • [5]Feltman DM, Du H, Leuthner SR: Survey of neonatologists/' attitudes toward limiting life-sustaining treatments in the neonatal intensive care unit. J Perinatol 2012, 32(11):886-892.
  • [6]Anonymous: How it feels to withdraw feeding from newborn babies. BMJ 2012, 345:e7319.
  • [7]Torres-Vigil I, Mendoza TR, Alonso-Babarro A, De Lima L, Cárdenas-Turanzas M, Hernandez M, de la Rosa A, Bruera E: Practice Patterns and Perceptions About Parenteral Hydration in the Last Weeks of Life: A Survey of Palliative Care Physicians in Latin America. J Pain Symptom Manage 2012, 43(1):47-58.
  • [8]Fenigsen R: Other People's Lives: Reflections on Medicine, Ethics, and Euthanasia. Issues Law Med 2012, 27(3):231-253.
  • [9]Zientek D: Artificial Nutrition and Hydration in Catholic Healthcare: Balancing Tradition, Recent Teaching, and Law. HEC Forum 2013, 25(2):145-159.
  • [10]Amano K, Morita T, Baba M, Kawasaki M, Nakajima S, Uemura M, Kobayashi Y, Hori M, Wakayama H: Effect of Nutritional Support on Terminally Ill Patients With Cancer in a Palliative Care Unit. Am J Hosp Palliat Care 2013, 30(7):730-733.
  • [11]Béranger A, Boize P, Viallard ML: The practices of withdrawing artificial nutrition and hydration in the neonatal intensive care unit: A preliminary study [article in French]. Arch Pediatr 2014, 21(2):170-176.
  • [12]Chambaere K, Loodts I, Deliens L, Cohen J: Forgoing artificial nutrition or hydration at the end of life: a large cross-sectional survey in Belgium. J Med Ethics 2014, 40(6):501-504.
  • [13]Alsolamy S: Islamic views on artificial nutrition and hydration in terminally ill patients. Bioethics 2014, 28(2):96-99.
  • [14]Piot E, Leheup BF, Goetz C, Quilliot D, Niemier J-Y, Wary B, Ducrocq X: Caregivers Confronted With the Withdrawal of Artificial Nutrition at the End of Life: Prevalence of and Reasons for Experienced Difficulties. Am J Hosp Palliat Care 2014. Published online before print June 13, 2014, doi:10.1177/1049909114539037
  • [15]Greenberger C: Enteral nutrition in end of life: The Jewish Halachic ethics. Nurs Ethics 2014. Published online before print August 4, 2014, doi:10.1177/0969733014538891
  • [16]Denton DA, McKinley MJ, Farrell M, Egan GF: The role of primordial emotions in the evolutionary origin of consciousness. Conscious Cogn 2009, 18(2):500-514.
  • [17]Rady MY, Verheijde JL: Liverpool Care Pathway: life-ending pathway or palliative care pathway? J Med Ethics 2014. Online First: doi:10.1136/medethics-2014-102314
  • [18]Department of Health: Independent report: Review of Liverpool Care Pathway for dying patients. A Report on the use and experience of the Liverpool Care Pathway (LCP). Published 15 July 2013. England. 2013. https://www.gov.uk/government/publications/review-of-liverpool-care-pathway-for-dying-patients webcite. Accessed 15 August, 2014
  • [19]Gosseries O, Di H, Laureys S, Boly M: Measuring Consciousness in Severely Damaged Brains. Annu Rev Neurosci 2014, 37(1):457-478.
  • [20]Laureys S: The neural correlate of (un)awareness: lessons from the vegetative state. Trends Cogn Sci 2005, 9(12):556-559.
  • [21]Casali AG, Gosseries O, Rosanova M, Boly M, Sarasso S, Casali KR, Casarotto S, Bruno M-A, Laureys S, Tononi G, Massimini M: A Theoretically Based Index of Consciousness Independent of Sensory Processing and Behavior. Sci Transl Med 2013, 5(198):198ra105.
  • [22]Schiff ND: Making Waves in Consciousness Research. Sci Transl Med 2013, 5(198):198fs132.
  • [23]Boly M, Sanders RD, Mashour G, Laureys S: Consciousness and responsiveness: lessons from anaesthesia and the vegetative state. Curr Opin Anaesthesiol 2013, 26(4):444-449.
  • [24]Gosseries O, Thibaut A, Boly M, Rosanova M, Massimini M, Laureys S: Assessing consciousness in coma and related states using transcranial magnetic stimulation combined with electroencephalography. Ann Fr Anesth Reanim 2014, 33(2):65-71.
  • [25]Di Perri C, Stender J, Laureys S, Gosseries O: Functional neuroanatomy of disorders of consciousness. Epilepsy Behav 2014, 30:28-32.
  • [26]Gosseries O, Laureys S: Current knowledge on severe acquired brain injury with disorders of consciousness. Brain Inj 2014, 28(9):1139-1140.
  • [27]Giacino JT, Fins JJ, Laureys S, Schiff ND: Disorders of consciousness after acquired brain injury: the state of the science. Nat Rev Neurol 2014, 10(2):99-114.
  • [28]Cohen MZ, Torres-Vigil I, Burbach BE, de la Rosa A, Bruera E: The Meaning of Parenteral Hydration to Family Caregivers and Patients With Advanced Cancer Receiving Hospice Care. J Pain Symptom Manage 2012, 43(5):855-865.
  • [29]Bükki J, Unterpaul T, Nübling G, Jox RJ, Lorenzl S: Decision making at the end of life—cancer patients’ and their caregivers’ views on artificial nutrition and hydration. Support Care Cancer 2014, 22(12):3287-3299.
  • [30]Rady MY, Verheijde JL: Refusal of fluid and nutrition at the end of life: Perceptions and Realities. [eLetter] Pediatrics 2013. Published 12 April 2013. http://pediatrics.aappublications.org/content/131/5/861/reply#pediatrics_el_55634 webcite
  • [31]Rady MY, Verheijde JL: Continuous Deep Sedation Until Death: Palliation or Physician-Assisted Death? Am J Hosp Palliat Care 2010, 27(3):205-214.
  • [32]Rady MY, Verheijde JL: Distress from voluntary refusal of food and fluids to hasten death: what is the role of continuous deep sedation? J Med Ethics 2012, 38(8):510-512.
  • [33]Sanders RD, Tononi G, Laureys S, Sleigh JW: Unresponsiveness ≠ Unconsciousness. Anesthesiology 2012, 116(4):946-959.
  • [34]Panksepp J, Fuchs T, Garcia VA, Lesiak A: Does any aspect of mind survive brain damage that typically leads to a persistent vegetative state? Ethical considerations. Philos Ethics Humanit Med 2007, 2(1):32. http://www.peh-med.com/content/2/1/32/ webcite BioMed Central Full Text
  • [35]Vincent J-L, Schetz M, De Waele JJ, de Cléty SC, Michaux I, Sottiaux T, Hoste E, Ledoux D, De Weerdt A, Wilmer A: “Piece” of mind: End of life in the intensive care unit Statement of the Belgian Society of Intensive Care Medicine. J Crit Care 2014, 29(1):174-175.
  • [36]Anquinet L, Rietjens JAC, Van den Block L, Bossuyt N, Deliens L: General practitioners' report of continuous deep sedation until death for patients dying at home: A descriptive study from Belgium. Eur J Gen Pract 2011, 17(1):5-13.
  • [37]Anquinet L, Rietjens JAC, Seale C, Seymour J, Deliens L, van der Heide A: The Practice of Continuous Deep Sedation Until Death in Flanders (Belgium), The Netherlands, and the U.K.: A Comparative Study. J Pain Symptom Manage 2012, 44(1):33-43.
  • [38]ten Have H, Welie JVM: Palliative Sedation Versus Euthanasia: An Ethical Assessment. J Pain Symptom Manage 2014, 47(1):123-136.
  • [39]Deyaert J, Chambaere K, Cohen J, Roelands M, Deliens L: Labelling of end-of-life decisions by physicians. J Med Ethics 2014, 40(6):505-507.
  • [40]Rys S, Deschepper R, Mortier F, Deliens L, Bilsen J: Continuous sedation until death with or without the intention to hasten death-a nationwide study in nursing homes in Flanders, Belgium. J Am Med Dir Assoc 2014, 15(8):570-575.
  • [41]Raus K, Anquinet L, Rietjens J, Deliens L, Mortier F, Sterckx S: Factors that facilitate or constrain the use of continuous sedation at the end of life by physicians and nurses in Belgium: results from a focus group study. J Med Ethics 2014, 40(4):230-234.
  • [42]Zivot J: The absence of cruelty is not the presence of humanness: physicians and the death penalty in the United States. Philos Ethics Humanit Med 2012, 7(1):13. http://www.peh-med.com/content/7/1/13 webcite BioMed Central Full Text
  • [43]The Association of Anaesthetists of Great Britain and Ireland: Do Not Attempt Resuscitation (DNAR) Decisions in the Perioperative Period. 2009. http://www.aagbi.org/sites/default/files/dnar_09_0.pdf webcite. Accessed 15 August, 2014
  • [44]Chan RJ, Webster J: End-of-life care pathways for improving outcomes in caring for the dying. Cochrane Database Syst Rev 2013, 11:CD008006.
  • [45]Anquinet L, Rietjens JAC, Vandervoort A, van der Steen JT, Vander Stichele R, Deliens L, Van den Block L: Continuous Deep Sedation Until Death in Nursing Home Residents with Dementia: A Case Series. J Am Geriatr Soc 2013, 61(10):1768-1776.
  • [46]Deschepper R, Laureys S, Hachimi Idrissi S, Poelaert J, Bilsen J: Palliative sedation: Why we should be more concerned about the risks that patients experience an uncomfortable death. Pain 2013, 154(9):1505-1508.
  • [47]Currow DC, Abernethy AP: Lessons from the Liverpool Care Pathway—evidence is key. Lancet 2014, 383(9913):192-193.
  • [48]Institute of Medicine (IOM) -National Academy of Sciences: Clinical Practice Guidelines We Can Trust. Washington, DC: The National Academies Press; 2011. http://www.nap.edu/openbook.php?record_id=13058 webcite. Accessed 15 August, 2014
  • [49]Montori VM, Brito J, Murad M: The optimal practice of evidence-based medicine: Incorporating patient preferences in practice guidelines. JAMA 2013, 310(23):2503-2504.
  • [50]Papavasiliou E, Payne S, Brearley S: Current debates on end-of-life sedation: an international expert elicitation study. Support Care Cancer 2014, 22(8):2141-2149.
  • [51]World Health Organization: World Health Organization (WHO) definition of palliative care. http://www.who.int/cancer/palliative/definition/en/ webcite Accessed 15 August 2014
  • [52]McQuoid-Mason DJ: Withholding or withdrawing treatment and palliative treatment hastening death: the real reason why doctors are not held legally liable for murder. S Afr Med J 2014, 104(2):102-103.
  • [53]Mason JK, Laurie GT: Euthanasia and Assistance in dying. Nonvoluntary termination of life. In Mason and McCall Smith’s Law and Medical Ethics. 8th edition. Oxford: Oxford University Press; 2011:573-574.
  • [54]Kuehlmeyer K, Borasio GD, Jox RJ: How family caregivers' medical and moral assumptions influence decision making for patients in the vegetative state: a qualitative interview study. J Med Ethics 2012, 38(6):332-337.
  • [55]Kitzinger C, Kitzinger J: Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: family perspectives. J Med Ethics 2014. Published Online First: 14 January 2014 doi:10.1136/medethics-2013-101799
  • [56]United Kingdom House of Lords Decisions: Airedale Hospital Trustees v Bland [1992] UKHL 5 (04 February 1993). [1993] 1 FLR 1026, [1993] 2 WLR 316, [1993] 1 All ER 821, [1993] Fam Law 473, 12 BMLR 64, [1992] UKHL 5, [1993] 4 Med LR 39, [1994] 1 FCR 485, [1993] AC 789, (1993) 12 BMLR 64. 1993. http://www.bailii.org/uk/cases/UKHL/1992/5.html webcite. Accessed 15 August, 2014
  • [57]Hudson L: From small beginnings: The euthanasia of children with disabilities in Nazi Germany. J Paediatr Child Health 2011, 47(8):508-511.
  • [58]Holland S, Kitzinger C, Kitzinger J: Death, treatment decisions and the permanent vegetative state: evidence from families and experts. Med Health Care Philos 2014, 17(3):413-423.
  • [59]Solarino B, Bruno F, Frati G, Dell’Erba A, Frati P: A national survey of Italian physicians’ attitudes towards end-of-life decisions following the death of Eluana Englaro. Intensive Care Med 2011, 37(3):542-549.
  • [60]Council of Europe: Guide on the decision-making process regarding medical treatment in end-of-life situations. 2014. http://www.coe.int/t/dg3/healthbioethic/Activities/09_End%20of%20Life/Guide/Guide%20FDV%20E.pdf webcite. Accessed 7 November 2014
  文献评价指标  
  下载次数:0次 浏览次数:7次