Limitation of care orders in patients with a diagnosis of dementia

      Abstract

      The prevalence of dementia is growing with an ageing population. Most persons with dementia die of acute illness and many are hospitalised at the end of life.
      In the acute hospital setting, limitation of care orders (LCOs) such as Do Not Attempt CPR and Physician Orders For Life Sustaining Treatment (POLST), appear to be underused in patients with dementia. These patients receive the same aggressive life-prolonging therapies as any other patient, despite drastically higher mortality.
      However, limitation of care orders in patients with dementia is not addressed by current guidelines or policies. Systems and processes for obtaining and documenting LCO need improvement at the individual, organisational and societal level. The issue is controversial amongst the public and poorly understood by clinicians.
      Balanced and empathetic decision-making requires an individualised approach and recognition of the complexities (legal, ethical and clinical) of this issue. We examine the domains of: (a) treatment effectiveness, (b) burden of care and quality of life and (c) patient autonomy and capacity.

      Keywords

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      References

        • World Health Organisation [WHO]
        The top ten causes of death (Fact sheet No 301).
        2014
        • Houttekier D.
        • Cohen J.
        • Bilsen J.
        • Addington-Hall J.
        • Onwuteaka-Philipsen B.D.
        • Deliens L.
        Place of death of older persons with dementia. A study in five European countries.
        J Am Geriatr Soc. 2010; 58: 751-756
        • Mezey M.D.
        • Mitty E.L.
        • Bottrell M.M.
        • Ramsey G.C.
        • Fisher T.
        Advance directives: older adults with dementia.
        Clin Geriat Med. 2000; 16: 255-268
        • Rudolph J.L.
        • Zanin N.M.
        • Jones R.N.
        • et al.
        Hospitalization in community-dwelling persons with Alzheimer's disease: frequency and causes.
        J Am Geriatr Soc. 2010; 58: 1542-1548
        • Morrison R.S.
        • Siu A.L.
        Survival in end-stage dementia following acute illness.
        JAMA. 2000; 284: 47-52
        • Gjerdingen D.K.
        • Neff J.A.
        • Wang M.
        • Chaloner K.
        Older persons’ opinions about life-sustaining procedures in the face of dementia.
        Arch Fam Med. 1999; 8: 421-425
        • Ahronheim J.C.
        • Morrison R.S.
        • Baskin S.A.
        • Morris J.
        • Meier D.E.
        Treatment of the dying in the acute care hospital. Advanced dementia and metastatic cancer.
        Arch Inter Med. 1996; 156: 2094-2100
        • General Medical Council [GMC]
        Treatment and care towards the end of life: good practice in decision making.
        GMC, 2010
        • Fritz Z.
        • Fuld J.
        Ethical issues surrounding do not attempt resuscitation orders: decisions, discussions and deleterious effects.
        J Med Ethics. 2010; 36: 593-597
        • Australian Commission on Safety Quality in Health Care
        Safety and quality of end-of-life care in acute hospitals: a background paper.
        ACSQHC, Sydney2013
        • Mitchell S.L.
        • Kiely D.K.
        • Hamel M.
        Dying with advanced dementia in the nursing home.
        Arch Inter Med. 2004; 164: 321-326
        • Triplett P.
        • Black B.S.
        • Phillips H.
        • et al.
        Content of advance directives for individuals with advanced dementia.
        J Aging Health. 2008; 20: 583-596
        • Callahan D.
        Terminating life-sustaining treatment of the demented.
        Hastings Cent Rep. 1995; 25: 25
        • Cherniack E.P.
        Increasing use of DNR orders in the elderly worldwide: whose choice is it?.
        J Med Ethics. 2002; 28: 303
        • Beed M.
        • de Beer T.
        • Brindley P.G.
        Two decades of British newspaper coverage regarding do not attempt cardiopulmonary resuscitation decisions: lessons for clinicians.
        Resuscitation. 2015; 86: 31-37
        • British Medical Association
        Decisions relating to cardiopulmonary resuscitation, a joint statement from the British Medical Association, Resuscitation Council (UK) and Royal College of Nursing.
        BMA, London2007
        • Broad J.B.
        • Gott M.
        • Kim H.
        • Boyd M.
        • He C.
        • Connolly M.J.
        Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics.
        Int J Public Health. 2013; 58: 257-267
        • Baskett P.J.F.
        • Lim A.
        The varying ethical attitudes towards resuscitation in Europe.
        Resuscitation. 2004; 62: 267-273
        • Santonocito C.
        • Ristagno G.
        • Gullo A.
        • Weil M.H.
        Do-not-resuscitate order: a view throughout the world.
        J Crit Care. 2013; : 14
        • Spiller J.
        • Kiehlmann P.
        • Davison H.
        • Murphy D.
        • Wilkie R.
        NHS Scotland DNACPR and CYPADM integrated policies – development of quality measures.
        BMJ Support Palliat Care. 2012; 2: A11-A12
      1. Tracey v Cambridge University Hospital NHS Foundation Trust & Ors, 17 June 2014

        • Hewitt J.E.
        “Do Not Resuscitate” orders in Queensland; examining the need to obtain consent.
        Qld Lawyer. 2011; 31: 195-207
        • The State of New York Public Health Law
        The state of New York Public health Law Article 29-B, Statut 413 A.
        The State of New York Public Health Law, 1988
        • Burns J.P.
        • Edwards J.
        • Johnson J.
        • Cassem N.H.
        • Truog R.D.
        Do-not-resuscitate order after 25 years*.
        Crit Care Med. 2003; 31: 1543-1550
        • Skene L.
        Law and medical practice: rights, duties, claims and defences.
        3rd ed. LexisNexis Butterworths, Chatswood, NSW2008
        • Ashby M.A.
        The futility of futility: death causation is the ‘Elephant in the Room’ in discussions about limitation of medical treatment.
        J Bioeth Inq. 2011; 8: 151-154
        • Schneiderman L.J.
        • Jecker N.S.
        • Jonsen A.R.
        Medical futility: its meaning and ethical implications.
        Ann Intern Med. 1990; 112: 949-954
        • Neale R.
        • Brayne C.
        • Johnson A.
        Cognition survival: an exploration in a large multicentre study of the population aged 65 years and over.
        Int J Epidemiol. 2001; 30: 1383-1388
        • Mitchell S.L.
        • Teno J.M.
        • Kiely D.K.
        • et al.
        The clinical course of advanced dementia.
        N Eng J Med. 2009; 361: 1529-1538
        • Ebell M.H.
        • Afonso A.M.
        Pre-arrest predictors of failure to survive after in-hospital cardiopulmonary resuscitation: a meta-analysis.
        Fam Pract. 2011; 28: 505-515
        • van de Glind E.M.
        • van Munster B.C.
        • van de Wetering F.T.
        • van Delden J.J.
        • Scholten R.J.
        • Hooft L.
        Pre-arrest predictors of survival after resuscitation from out-of-hospital cardiac arrest in the elderly a systematic review.
        BMC Geriatr. 2013; 13: 68
        • Ibrahim J.E.
        • Davis M.-C.
        Availability of education and training for medical specialists about the impact of dementia on comorbid disease management.
        Educ Gerontol. 2013; 39: 925-941
        • McIntyre K.M.
        Failure of ‘predictors’ of cardiopulmonary resuscitation outcomes to predict cardiopulmonary resuscitation outcomes: implications for do-not-resuscitate policy and advance directives.
        Arch Int Med. 1993; 153: 1293-1296
        • Brunnström H.R.
        • Englund E.M.
        Cause of death in patients with dementia disorders.
        Eur J Neurol. 2009; 16: 488-492
        • Cabre M.
        • Serra-Prat M.
        • Palomera E.
        • Almirall J.
        • Pallares R.
        • Clavé P.
        Prevalence and prognostic implications of dysphagia in elderly patients with pneumonia.
        Age Ageing. 2010; 39: 39-45
        • Uhlmann R.F.
        • Pearlman R.A.
        Perceived quality of life and preferences for life-sustaining treatment in older adults.
        Arch Int Med. 1991; 151: 495-497
        • Arlt S.
        • Hornung J.
        • Eichenlaub M.
        • Jahn H.
        • Bullinger M.
        • Petersen C.
        The patient with dementia, the caregiver and the doctor: cognition, depression and quality of life from three perspectives.
        Int J Geriatr Psychiatry. 2008; 23: 604-610
        • Sayers G.M.
        • Schofield I.
        • Aziz M.
        An analysis of CPR decision-making by elderly patients.
        J Med Ethics. 1997; 23: 207-212
        • Derse A.R.
        Limitation of treatment at the end-of-life: withholding and withdrawal.
        Clin Geriatr Med. 2005; 21: 223-240
        • Pritchard R.S.
        • Fisher E.S.
        • Teno J.M.
        • et al.
        Influence of patient preferences and local health system characteristics on the place of death. SUPPORT investigators. Study to understand prognoses and preferences for risks and outcomes of treatment.
        J Am Geriatr Soc. 1998; 46: 1242-1250
        • Sidhu N.
        • Dunkley M.
        • Egan M.
        Not-for-resuscitation” orders in Australian public hospitals: policies, standardised order forms and patient information leaflets.
        Med J Aust. 2007; 186: 72-75
        • Victorian Law Reform Commission
        Guardianship: final report.
        Victorian Law Reform Commission, Melbourne2012: 97-123
        • Marson D.C.
        • Ingram K.K.
        • Cody H.A.
        • Harrell L.E.
        Assessing the competency of patients with Alzheimer's disease under different legal standards. A prototype instrument.
        Arch Neurol. 1995; 52: 949-954
        • Dunn L.
        • Nowrangi M.
        • Palmer B.
        • Jeste D.
        • Saks E.
        Assessing decisional capacity for clinical research or treatment: a review of instruments.
        Am J Psychiatry. 2006; 163: 1323-1334
        • Blinderman C.D.
        • Krakauer E.L.
        • Solomon M.Z.
        Time to revise the approach to determining cardiopulmonary resuscitation status.
        JAMA: J Am Med Assoc. 2012; 307: 917-918
        • Volicer L.
        End-of-life care for people with dementia in residential care settings.
        Alzheimer's Association, 2005
        • Hayes B.
        Clinical model for ethical cardiopulmonary resuscitation decision-making.
        Intern Med J. 2013; 43: 77
        • Mockford C.
        • Fritz Z.
        • George R.
        • et al.
        Do not attempt cardiopulmonary resuscitation (DNACPR) orders: a systematic review of the barriers and facilitators of decision-making and implementation.
        Resuscitation. 2014;
        • Field R.A.
        • Fritz Z.
        • Baker A.
        • Grove A.
        • Perkins G.D.
        Systematic review of interventions to improve appropriate use and outcomes associated with do-not-attempt-cardiopulmonary-resuscitation decisions.
        Resuscitation. 2014; 85: 1418-1431
        • Xanthos T.
        ‘Do not attempt cardiopulmonary resuscitation’ or ‘allowing natural death’? The time for resuscitation community to review its boundaries and its terminology.
        Resuscitation. 2014; 85: 1644-1645
        • Salins N.S.
        • Jansen W.
        Clinical audit on documentation of anticipatory “Not for Resuscitation” orders in a tertiary Australian teaching hospital.
        Indian J Palliat Care. 2011; 17: 42-46
        • Alzheimer's, Association
        2014 Alzheimer's disease facts and figures.
        Alzheimer's Dement. 2014; 10: e47-e92
        • Government Equalities Office and Department for Culture MS
        Equality Act 2010: guidance.
        Government Equalities Office and Department for Culture MS, 2013
        • Luce J.M.
        • White D.B.
        A history of ethics and law in the intensive care unit.
        Crit Care Clin. 2009; 25: 221-237
        • United Kingdom Ministry of Justice
        Office of the public guardian.
        United Kingdom Ministry of Justice, 2012
        • World Health Organization
        Dementia: a public health priority.
        World Health Organization, 2012