Elsevier

Resuscitation

Volume 98, January 2016, Pages 118-124
Resuscitation

Commentary and Concepts
Limitation of care orders in patients with a diagnosis of dementia

https://doi.org/10.1016/j.resuscitation.2015.03.014Get rights and content

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.

Introduction

“Medical science and technology has advanced for a fundamental purpose; the purpose of benefiting the life and health of those who turn to medicine to be healed. It surely was never intended that it be used to prolong biological life in patients bereft of the prospect of returning to an even limited exercise of human life … Natural death has not lost its meaning or significance. It may be deferred, but it need not be postponed indefinitely.” [Thomas J in Auckland Area Health Board v. Attorney General [1993] 1 NZLR 235 at p253]

Dementia is now the fourth leading cause of death in high-income countries,1 and many of these patients die in hospital.2 One in three nursing home patients are admitted to hospital every year,3 and community-dwelling patients with dementia are hospitalised at similar rates.4

Patients with dementia in the acute care setting receive the same life-prolonging therapies as any other patient, despite drastically higher mortality.5 Most patients report a preference against cardiopulmonary resuscitation (CPR) and mechanical ventilation in the case of advanced dementia, and many would also not want intravenous antibiotics or nutritional support,6 yet in the US CPR is attempted in a quarter of these patients and up to half die with a feeding tube in place.7 There are high rates of aggressive life-prolonging treatment, low rates of referral to palliative care services, and inadequate symptom control reported in patients dying with dementia.5

The use of aggressive treatments in patients who do not want them and are unlikely to benefit is in conflict with principles of good end-of-life care.8 Limitation of care orders (LCO) place restrictions on life-prolonging treatments, in cases when the treatment is likely to be ineffective or harmful, or is not in accordance with the patients’ preferences.9 Examples include Do Not Attempt CPR (DNACPR) and Do Not Intubate (DNI), as well as more complex orders such Physician Orders for Life Sustaining Treatment (POLST) (Box 1). LCO are intended to prevent unnecessary suffering, respect patient preferences and avoid inappropriate use of health care resources. Their use in acute hospital care is increasingly recognised as an essential element of care.10

LCO appear to be underused in patients with dementia.11 LCO are associated with higher comfort measures and lower aggressive treatment, with no difference in mortality.3 Yet patients with dementia are less likely to have LCO than patients with other terminal conditions, and in many cases, DNACPR orders are completed only when death is seen to be imminent.11 The vast majority of care directives make no mention of ventilation, nutritional care, dialysis, or hospitalisation.12

This phenomenon is not unique to acute hospital care. Persons with advanced dementia in nursing homes are less likely to have LCO than others with a similar prognosis.11 Persons with dementia also receive higher rates of aggressive life-prolonging treatment, tube feeding, intravenous (IV) therapy, laboratory investigations, and restraint use than patients with metastatic cancer.11 This exemplifies a broader issue and the lack of understanding around dementia.

However, the effective use of LCO is one of the most difficult skills to master in clinical medicine.9, 13 There is significant controversy and concerns from patients, families and the public about LCO13, 14, 15 and clinicians express low confidence in this area.9 Decision-making and discussions about care limitation is even more complex for persons with dementia,13 however dementia is not specifically considered in most LCO policies and guidelines.10, 16

Here we consider the issues specific to dementia that may impact on appropriate use of limitation of care orders. Our discussion focuses on the use of LCO in the setting of acute hospital care where more than half of all deaths in industrialised nations occur.17 We examine the domains of: (a) treatment effectiveness in this group (b) burden of care and quality of life and (c) patients’ preferences, capacity and consent.

Section snippets

Legal and policy considerations

Limitation of care encompasses a spectrum of treatment decisions (Box 1). DNACPR orders have received by far the greatest attention in law, policy and research.

There is considerable international variation in DNACPR law, policy and ethical attitudes.18 Most countries lack a clear legal or policy framework to guide decision-making. (Santonocito19 provides an overview.) The United Kingdom is one exception; guiding statements have been produced British Medical Association, the Resuscitation

Treatment effectiveness

Dementia is under-recognised as a terminal condition by clinicians, patients and families.5 Patients with dementia generally have multiple comorbidities with pathological synergy. Dementia increases mortality risk at all ages and all levels of cognitive impairment.28, 29 Patients over 75 years of age with advanced dementia have a 3-year mortality close to 50%.28

Mortality rate is even higher following an acute hospital admission. More than 50% of patients with moderate dementia admitted for

Burden of care and quality of life

Patients with dementia at the end of life are exposed to considerable burden of care.5 There is a high frequency of invasive investigations and aggressive treatments including CPR and intubation in this group.7, 11 Patients with dementia also receive fewer comfort measures and fewer referrals to palliative care at the end of life.5

There is often clinical ambiguity in determining when it is appropriate to institute an approach to care for end of life. The majority of deaths in patients with

Patients’ preferences

That someone has dementia does not mean that they are unable to participate in decisions about LCOs. Patients with dementia should not be assumed to lack capacity.39 However, this assumption is frequently made, and patients are denied information and participation in end-of-life decision-making as a result.3 This is likely to contribute to high rates of hospitalisation and aggressive treatment that are in direct conflict with patient preferences.6, 7, 40

British guidelines for DNACPR

Next steps

Systems for obtaining and documenting limitation of care orders need improvement.46, 47 At the organisational level, we need clinical practice standards to enable consistency and clarity in LCO processes with specific consideration of dementia. These are currently lacking in most countries in Europe.18

Explicit DNACPR policy from health care organisations should be routine. Two recent systematic reviews about LCO decision-making and implementation emphasised that individualised decision-making

Conclusion

Processes for discussion and decision-making around end-of-life care have not kept pace with the development of life-sustaining treatments. A limitation of care order is essential to help navigate the end of life in patients with terminal illness. However, our understanding of the purpose and process for limitations of care orders is inconsistently applied and mired in confusion. This is even more so for persons living with dementia.

At the end of life, people living with dementia are exposed to

Competing interests

All authors declare that they do not have any competing interests.

Funding and disclaimer

The views and conclusions are those of the authors and do not necessarily represent those of La Trobe University, Monash University, Ballarat Health Service or the Office of the Public Advocate.

Conflict of interest statement

The authors have no competing interests that may constitute a source of bias.

References (56)

  • R.S. Morrison et al.

    Survival in end-stage dementia following acute illness

    JAMA

    (2000)
  • D.K. Gjerdingen et al.

    Older persons’ opinions about life-sustaining procedures in the face of dementia

    Arch Fam Med

    (1999)
  • J.C. Ahronheim et al.

    Treatment of the dying in the acute care hospital. Advanced dementia and metastatic cancer

    Arch Inter Med

    (1996)
  • General Medical Council [GMC]

    Treatment and care towards the end of life: good practice in decision making

    (2010)
  • Z. Fritz et al.

    Ethical issues surrounding do not attempt resuscitation orders: decisions, discussions and deleterious effects

    J Med Ethics

    (2010)
  • Australian Commission on Safety Quality in Health Care

    Safety and quality of end-of-life care in acute hospitals: a background paper

    (2013)
  • S.L. Mitchell et al.

    Dying with advanced dementia in the nursing home

    Arch Inter Med

    (2004)
  • P. Triplett et al.

    Content of advance directives for individuals with advanced dementia

    J Aging Health

    (2008)
  • D. Callahan

    Terminating life-sustaining treatment of the demented

    Hastings Cent Rep

    (1995)
  • E.P. Cherniack

    Increasing use of DNR orders in the elderly worldwide: whose choice is it?

    J Med Ethics

    (2002)
  • British Medical Association

    Decisions relating to cardiopulmonary resuscitation, a joint statement from the British Medical Association, Resuscitation Council (UK) and Royal College of Nursing

    (2007)
  • J.B. Broad et al.

    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)
  • J. Spiller et al.

    NHS Scotland DNACPR and CYPADM integrated policies – development of quality measures

    BMJ Support Palliat Care

    (2012)
  • Tracey v Cambridge University Hospital NHS Foundation Trust & Ors, 17 June...
  • J.E. Hewitt

    “Do Not Resuscitate” orders in Queensland; examining the need to obtain consent

    Qld Lawyer

    (2011)
  • The State of New York Public Health Law

    The state of New York Public health Law Article 29-B, Statut 413 A

    (1988)
  • J.P. Burns et al.

    Do-not-resuscitate order after 25 years*

    Crit Care Med

    (2003)
  • L. Skene

    Law and medical practice: rights, duties, claims and defences

    (2008)
  • Cited by (0)

    A Spanish translated version of the abstract of this article appears as Appendix in the final online version at http://dx.doi.org/10.1016/j.resuscitation.2015.03.014.

    View full text