Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
World Health Organization
Module 1 discussed how palliative care is not dependent on a specific medical diagnosis but is applicable to people who have a wide range of progressive and advanced life-limiting illnesses.[1-3]
The term life-limiting illness is used where it is expected that death will be a direct consequence of the specified illness including:[2, 3]
- Heart disease
- Chronic Obstructive Pulmonary Disease (COPD)
- Heart failure
- Neurodegenerative disease
- Chronic liver disease
- Chronic renal disease
- Degenerative illnesses or significant deterioration related to ageing.
Best practice palliative care requires an understanding of:[2-8]
- The illness
- The symptoms that are commonly associated with the illness
- The person’s perception of the effects of those symptoms on their quality of life.
Different life-limiting illnesses are associated with different patterns of illness.[3, 9] These patterns are referred to as illness trajectories.[3, 9-11] Three typical illness trajectories have been described for people with progressive chronic illness:[11-14]
- Cancer trajectory
- Organ failure trajectory
- The frail elderly / dementia trajectory.
Understanding what symptoms form a likely part of the person’s illness trajectory; when they might occur and their likely effect can assist with proactive symptom assessment and management.[3, 9-14]
Due to the complex nature of life-limiting illness, people frequently experience multiple symptoms at any one time.
Symptom management must take into consideration the cause, potential benefits and burdens of treatment, illness progression, goals of care and the person’s wishes. People with life-limiting illness frequently experience multiple, complex symptoms due to a combination of:[3, 15, 16]
- The illness itself
- Illness-modifying treatment
- Comorbidities / intercurrent / concurrent illness.
Unrelieved symptom concerns can have a negative impact on a person’s quality of life.[17-20]
Refer back to Module 1 to refresh your understanding of illness trajectories.
- How can understanding their likely illness trajectory help people to develop goals of care?
- Choose one type of cancer (for example, lung cancer) and one non-malignant life-limiting illness (for example, chronic heart failure). Research the literature and answer the following questions:
- Identify current epidemiological data relating to incidence and survival rates
- Identify classifications, staging, grading and prognostic factors
- What health needs or concerns can arise throughout the course of the illness trajectory for these illnesses?
- How can you use the evidence-based information on illness trajectories to:
- Assist your clinical decision-making
- Provide support to people with life-limiting illnesses and their families?
- What limitations does illness trajectory information have in guiding clinical care?
- World Health Organization. Definition of Palliative Care. 2017 [cited 2017 March 13]; Available from: http://www.who.int/cancer/palliative/definition/en/.
- Palliative Care Australia. Palliative Care Service Development Guidelines. 2018; Available from: http://palliativecare.org.au/quality.
- Murray, S.A., et al., Palliative care from diagnosis to death. BMJ, 2017. 356.
- Murray, S.A., et al., Promoting palliative care in the community: Production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care. Palliative Medicine, 2015. 29(2): p. 101-111.
- Walbert, T., Maintaining quality of life near the end of life: hospice in neuro-oncology. Neuro-Oncology, 2018. 20(4): p. 439-440.
- Palliative Care Australia. National Palliative Care Standards. 2018; 5th Edition:[Available from: http://palliativecare.org.au/standards].
- Palliative Care Australia. Identifying Palliative Care Needs. 2017 [cited 2018 22/6/2018]; Available from: https://www.caresearch.com.au/caresearch/tabid/1507/Default.aspx.
- Palliative Care Australia. What is Palliative Care? 2015 [cited 2019 January 23]; Available from: https://palliativecare.org.au/what-is-palliative-care.
- Murray, S.A., et al., Illness trajectories and palliative care. BMJ, 2005. 330: p. 1007.
- Lloyd, A., et al., 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, 2016. 16(1): p. 176.
- 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.
- Beernaert, K., et al., Palliative care needs at different phases in the illness trajectory: a survey study in patients with cancer. European Journal of Cancer Care, 2016. 25: p. 534-543.
- Skornick-Bouchbinder, M., J. Cohen-Mansfield, and S. Brill, Trajectories of End of Life: A Systematic Review. The Journals of Gerontology: Series B, 2017. 73(4): p. 564-572.
- Gardiner, C., et al., Exploring the transition from curative care to palliative care: a systematic review of the literature. BMJ Supportive & Palliative Care, 2015. 5(4): p. 335.
- Therapeutic Guidelines Ltd, Principles of symptom management in palliative care. 2018: Melbourne.
- Carduff, E., et al., What does ‘complex’ mean in palliative care? Triangulating qualitative findings from 3 settings. BMC palliative care, 2018. 17(1): p. 12-12.
- Kavalieratos, D., et al., Association Between Palliative Care and Patient and Caregiver Outcomes: A Systematic Review and Meta-analysis. JAMA, 2016. 316(20): p. 2104-2114.
- Oliver, D., Improving patient outcomes through palliative care integration in other specialised health services: what we have learned so far and how can we improve? Annals of Palliative Medicine, 2018: p. S219-S230.
- Megari, K., Quality of Life in Chronic Disease Patients. Health psychology research, 2013. 1(3): p. e27-e27.
- Effiong, A. and A.I. Effiong, Palliative care for the management of chronic illness: a systematic review study protocol. BMJ Open, 2012. 2(3).