Core Modules

module 1 | Activity 7: Who needs palliative care?

Palliative care is provided to people like William; people who, regardless of age, have a life-limiting illness. It is not dependent on a specific medical diagnosis, but on a person’s needs. Palliative care is also applicable when caring for frail older people and people with chronic and non-malignant conditions.[1-4]

The course of various life-limiting illnesses can be influenced by a range of factors. Some of these factors include:[3]

The natural history of the illness:

For example, people with cancer can often remain well and function reasonably for prolonged periods, but experience a sudden decline before death.

Presence and nature of comorbidities:

For example, curative treatment for a co-morbid condition would be warranted for a person with a slowly progressive cancer causing limited functional decline.

Treatment goals and decisions:

For example, treatment goals for someone with slow functional decline will aim to maximise function and quality of life. Treatment goals also focus on reducing symptoms for example, for someone with end-stage heart failure who has pulmonary oedema.

 

The top five causes of death in Australia are chronic in nature. In general, these illnesses follow three broad and relatively predictable trajectories:

Trajectory 1: short period of evident decline, typically cancer
Illness Trajectory 1: short period of evident decline
This trajectory charts a reasonably predictable decline in physical health over a period of weeks, months, or, in some cases, years [2-4]

  • Body function declines rapidly and shows no sign of recovery
  • Typically, there is a relatively short period between the onset of functional decline and death as represented by the sudden drop at the end of the graph
  • Physical, social and psychological decline usually run in parallel
  • Spiritual distress fluctuates more and is often determined by other influences, such as the person’s capacity to remain resilient
  • This trajectory is often associated with traditional specialist palliative care services which concentrate on providing comprehensive services in the last weeks or months of life.

Case study

Joan, a 45-year-old woman with breast cancer received her initial diagnosis 10 years ago. She was diagnosed with secondary breast cancer four years ago and continues to receive a range of anti-cancer treatments. She was recently diagnosed with new metastases to the bone and liver. Joan is suffering from weight loss, decreased appetite and pain. She is increasingly weak and tired. Her condition has been stable for some time, but is likely to deteriorate over the next few months to years.

Trajectory 2: long-term limitations with intermittent serious episodes
Illness Trajectory 2: long term limitations with intermittent serious episodes
With conditions such as heart failure and chronic obstructive pulmonary disease (COPD), people are usually ill for many months or years with occasional acute, often severe, exacerbations [2-4]

  • Deteriorations are generally accompanied by admission to hospital and intensive treatment
  • Body function slowly declines with intermittent sudden decline but there is some recovery after each episode
  • Each exacerbation can result in death and, although the person usually survives many of these episodes, a gradual deterioration in health and functional status is typical. The timing of death remains uncertain
  • During the increasingly frequent exacerbations of conditions such as heart failure, liver failure, or chronic obstructive pulmonary disease, the person and their family/carers may be anxious, need information and/or have social concerns
  • Planning for exacerbations should include management of multidimensional needs and communicating current plans and wishes regularly to out-of-hours care providers and hospitals. This facilitates appropriate management during and after such crises.

Case study

Mr Chen is a 69-year-old man with end-stage heart failure who is experiencing fatigue and increasing shortness of breath on exertion. Mr Chen has had three emergency hospital admissions in the past 12 months. He is concerned about what quality of life his future holds and when he will die.

Trajectory 3: prolonged dwindling
Illness Trajectory 3: prolonged dwindling
Morbidity associated in older age may include Alzheimer’s or other dementia or generalised frailty from comorbidities[2-4]

  • Functional status is low with further decline progressing slowly over time. Physical decline often occurs over a long period of time and the person can lose weight and functional capacity gradually
  • Psychological and spiritual wellbeing often fall in response to changes in social circumstances or an acute physical illness. A decrease in social, psychological, or spiritual wellbeing can herald global physical decline or death.

Case study

Hans is an 85-year-old man with COPD, osteoarthritis and early stage dementia. He is living alone but his family is becoming increasingly concerned for his safety. Hans is very forgetful and his mobility is poor. He has a high risk of falls and his decline is likely to be slow, making it difficult to predict the dying phase.

Trajectory images source: Murray, S.A., et al., Illness trajectories and palliative care. BMJ: British Medical Journal, 2005. 330(7498): p. 1007-1011.

Key points about illness trajectories:

  • Each phase of an illness trajectory can bring its own particular meanings and challenges for people affected by life-limiting illness. [3]
  • Knowledge of the likely course of an illness helps predict the progression of the person’s condition. For example, curative  treatment for a co-morbid condition can be warranted for a person with a slowly progressive cancer causing limited functional decline[3, 5-7]
  • Physical, social, psychological, and spiritual needs are likely to vary according to the trajectory being followed. [5-7, 9]
  • Understanding the likely course of an illness can help guide clinical assessment and choice of treatment options. If the treatment helps the person function and fits in with their treatment goals, then such treatment can be appropriate.
  • Understanding what symptoms are likely to be part of the person’s illness trajectory can assist with proactive symptom assessment and management. Determining the effect of these symptoms on the person, and how they perceive these symptoms, is highly important.[3, 5-9]

 

Recognising when a person might benefit from palliative care:

The end-phase of life can become apparent when particular changes in the status of a person’s functions or symptom profile occurs. This phase can initiate changes in supportive interventions for the person and their family. The Supportive and Palliative Care Indicators Tool (SPICT) can be used to help identify people whose health is deteriorating and who may require further assessment of unmet holistic care needs.[10]

The ‘Surprise Question’ – “Would you be surprised if this person died in the next 12 months?” has been incorporated into clinical guidelines and routine clinical practice in many settings as a way to help health professionals identify people who would benefit from palliative care. [11]

 

The IPEPA Animated video:  Understanding trajectories of serious illness helps to explain illness trajectories further.

  1. Identify the key points distinguishing the following definitions:
    • Palliative care
    • End-of-life care.
  2. How do you determine who requires palliative care? Consider:
    • Issues associated with a person’s health needs
    • The personal resources and strengths they can draw from.
  3. Review the illness trajectories and the three associated case studies, answer the following questions:
    • How are these trajectories similar or different to that of a person who is dying as a result of the ageing process?
    • How can people’s anticipation of death and preparations for end-of-life be influenced by an understanding of illness trajectories?
    • How would you answer the ‘Surprise Question’ for the patients described in each of these case studies?
  1. World Health Organization. 2017. Definition of Palliative Care.
  2. Palliative Care Australia. 2018. Palliative Care Service Development Guidelines.
  3. Murray, S.A., et al. 2017 Palliative care from diagnosis to death. BMJ. 356.
  4. Murray, S.A., et al. 2005, Illness trajectories and palliative care. BMJ : British Medical Journal. 330(7498): p. 1007-1011.
  5. Amblàs-Novellas, J., et al., Identifying patients with advanced chronic conditions for a progressive palliative care approach: a cross-sectional study of prognostic indicators related to end-of-life trajectories. BMJ Open, 2016. 6(9): p. e012340.
  6. Skornick-Bouchbinder, M., J. Cohen-Mansfield, and S. Brill. 2017. Trajectories of End of Life: A Systematic Review. The Journals of Gerontology: Series B. 73(4): p. 564-572.
  7. Beernaert, K., et al. 2016. Palliative care needs at different phases in the illness trajectory: a survey study in patients with cancer. European Journal of Cancer Care. 25: p. 534-543.
  8. Gardiner, C., et al. 2015. Exploring the transition from curative care to palliative care: a systematic review of the literature. BMJ Supportive & Palliative Care. 5(4): p. 335.
  9. Lloyd, A., et al. 2016. Physical, social, psychological and existential trajectories of loss and adaptation towards the end of life for older people living with frailty: a serial interview study. BMC Geriatrics. 16(1): p. 176.
  10. University of Edinburgh. 2019. Supportive and Palliative Care Indicators Tool Website
  11. White, N., et al. 2017. How accurate is the ‘Surprise Question at identifying patients at the end of life? A systematic review and meta-analysis. BMC Medicine. 15(139).