Lessons from the Literature

2019; Volume 20, No 5, May

Lessons from the Literature

Under My Microscope

Dr. Tania Pastrana

IAHPC research advisor Dr. Tania Pastrana selects one article from recently published medical literature and describes why it is worthwhile.

The Trajectory of Functional Decline Over the Last 4 Months of Life in a Palliative Care Population: A prospective, consecutive cohort study

Morgan D, Tieman JJ, Allingham SF, Ekström MP, Connolly A, Currow DC. Palliative Medicine. Published online March 27, 2019. DOI: 10.1177/0269216319839024 [Abstract below]

‘Trajectories of dying’ is a concept coined by the sociologists Glaser and Strauss (1965)1 as a conceptual framework for understanding the experience of illness and dying. The trajectories describe the ‘shape’ and ‘duration’ variables of functional decline, the particular path that patients experience as they approach death. Since then, trajectory of several pathologies have been described, including renal disease, COPD, dementia, and cancer.2-6

Anticipation of the illness trajectory in palliative care is important for the patient and their family members/caregivers, as well as health care providers, in order to evaluate the health care needs that change over time and plan the delivery of adequate interventions.

I chose this interesting study because trajectories are dynamic and, with the improvement of treatment at the end of life, the trajectories also change. Morgan et al. examined the trajectory of functional decline in the last 120 days in 55,954 Australian palliative care patients in a prospective study. The researchers identified two simplified trajectories:

What are the trajectories like in your clinical experience?


  1. Glaser BG, Strauss AL. Awareness of Dying. Chicago: Aldine Publishing, 1965.
  2. Stow D et al. Frailty trajectories to identify end of life: a longitudinal population-based study. BMC Med 2018; 16(1); 171.
  3. Wang L, et al. Disease trajectories and end-of-life care for dementias: Latent topic modeling and trend analysis using clinical notes. AMIA Annual Symposium proceedings. AMIA Symposium 2018: 1056-1065.
  4. Murtagh FE, et al. End-stage renal disease: a new trajectory of functional decline in the last year of life. J Am Geriatr Soc 2011; 59(2): 304-308.
  5. Boyd KJ, et al. Making sure services deliver for people with advanced heart failure: a longitudinal qualitative study of patients, family carers, and health professionals. Palliat Med 2009; 23(8): 767-776.
  6. Murray SA, et al. Illness trajectories and palliative care. BMJ (Clinical research ed.) 2005; 330(7498): 1007-1011.

The Trajectory of Functional Decline Over the Last 4 Months of Life in a Palliative Care Population: A prospective, consecutive cohort study

Dr. Tania Pastrana is the Research Adviser for the IAHPC. To contact Dr. Pastrana, click here.

Background: Understanding current patterns of functional decline will inform patient care and has health service and resource implications. Aim: This prospective consecutive cohort study aims to map the shape of functional decline trajectories at the end of life by diagnosis. Design: Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Segmented regression was used to identify time points prior to death associated with significant changes in the slope of functional decline for each diagnostic cohort. Sensitivity analyses explored the impact of severe symptoms and late referrals, age and sex. Setting/Participants: In all, 115 specialist palliative care services submit prospectively collected patient data to the national Palliative Care Outcomes Collaboration across Australia. Data on 55,954 patients who died in the care of these services between 1 January 2013 and 31 December 2015 were included. Results: Two simplified functional decline trajectories were identified in the last 4 months of life. Trajectory 1 has an almost uniform slow decline until the last 14 days of life when function declines more rapidly. Trajectory 2 has a flatter more stable trajectory with greater functional impairment at 120 days before death, followed by a more rapid decline in the last 2 weeks of life. The most rapid rate of decline occurs in the last 2 weeks of life for all cohorts. Conclusions: Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.

Media Watch: On Dementia

Alzheimer’s International estimates that there were close to 50 million people living with dementia in 2017; that number is expected to nearly double every 20 years. The three articles below are selected from Barry R. Ashpole’s weekly Media Watch column.

A Systematic Review and Critical Appraisal of Quality Indicators to Assess Optimal Palliative Care for Older People with Dementia

Palliative Medicine | Online – 11 March 2019 – A major contribution of this study is to have rendered a comprehensive but large list of indicators into a dementia-specific resource, and a framework for future research and implementation of dementia-specific end-of-life care (EoLC). There have been recent calls to strengthen the theoretical development underpinning new complex interventions designed to improve EoLC in dementia – such an approach would benefit quality indicators used to assess the effectiveness of these types of interventions. Questions remain as to: 1) The feasibility of developing a set of quality indicators that could be used across the community settings in which older people are living and dying with dementia; 2) Where along the dementia trajectory quality indicators for EoLC should be introduced; and, 3) Whether quality indicators that are considered important to people with dementia and their families coincide with those habitually used by [National Health Service] commissioners. DOI: 10.1177/0269216319834227

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Advance Care Planning in Dementia: Recommendations for healthcare professionals

Palliative Care: Research & Treatment | Online – 27 February 2019 – The process of advance care planning in dementia is far from straightforward; as dementia progresses, the ability to consider future thoughts and actions becomes compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position where they need to inform, or directly make, decisions on behalf of the person with dementia. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care. DOI: 10.1177/1178224219826579

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Dying with Dementia: Underrecognized and stigmatized

Journal of the American Geriatric Society | Online – 25 March 2019 – Alzheimer's disease (AD) is the sixth leading cause of death in the U.S. and one of the few leading causes of death where the age‐adjusted death rate is increasing. Even more people die with dementia as a comorbidity to another serious illness or illnesses... Thirty-percent of all decedents older than 65 years in the U.S. die with or from dementia. The number of individuals with dementia enrolled in hospice has increased exponentially over the past 20 years, to the point where almost half of all hospice recipients annually have a primary or comorbid diagnosis of dementia. Despite the high prevalence of dementia at end of life, discussions about dementia rarely acknowledge its terminal nature. In the U.S. national plan to address AD, the term “death” appears twice, “hospice” once, and “palliative care” four times.1 DOI: 10.1111/jgs.15895

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  1. National Plan to Address Alzheimer's Disease: 2018 Update,’ U.S. Department of Health & Human Services.

Media Watch, published by Barry R. Ashpole, a Canadian communications consultant and educator, monitors the literature and the lay press on issues specific to the quality of end-of-life care. It is international in scope and distribution. View current and back issues here.

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