Core Modules

module 1 | Activity 6: What is palliative care?

The World Health Organization defines palliative care as:

An approach that improves the quality of life of individuals and their families facing the problems associated with life-limiting illnesses, through the prevention and relief of suffering by means of early identification and impeccable assessment and the treatment of pain and other problems, physical, psychosocial and spiritual.

World Health Organization[1]

Palliative care in the Australian context

In alignment with the World Health Organization definition, palliative care in the contemporary Australian context is defined as:

Person and family-centred care provided for a person with an active, progressive, advanced disease, who has little or no prospect of cure and who is expected to die, and for whom the primary treatment goal is to optimise the quality of life.

Palliative Care Australia[2]

Key points in the WHO approach

Underpinning these definitions are the following key points:

Life affirming

Palliative care affirms life and regards dying as a normal process and a part of living. It intends neither to hasten or postpone death.[3]

Palliative care is about living. It supports people to live their life as completely and as comfortably as possible in ways that are meaningful to them by focusing on:

  • Living well with deteriorating health[5]
  • Ensuring that they have the best quality of life while they are alive.[4, 6-9]

The intention of palliative care is not to prolong or shorten life but to respect the natural moment of death. End-of-life care is a part of palliative care and refers to the last few days of life when a person is irreversibly dying.[4, 9]

Quality of life 

Palliative care will enhance quality of life, and may also positively influence the course of illness, by providing a support system to help people live as actively as possible until death.[3]

Palliative care improves quality of life by focusing on living well with deteriorating health.[3, 5, 10] The following questions can assist to  determine which area of their life the person with a life-limiting illness needs help and support with:[11]

  • Are they comfortable and pain free?
  • Are they able to socialise or spend time with loved ones and people who are important to them?
  • Are they having as much independence as possible?
  • Are they feeling that they are a burden?
  • Are they feeling emotionally balanced?
  • Do they have all the information they need at this time?
Holistic care

Palliative care integrates the psychological and spiritual aspects of care.[3]

Palliative care treats the whole person, rather than just the symptoms of illness, in order to identify personal goals and preferences for care.[3, 5, 7, 8]

Palliative care can assist with a variety of needs:[4, 7, 8, 12, 13]

The five domains of holistic carePhysical Needs

  • Management of physical symptoms such as pain, weakness, fatigue and dyspnoea
  • Information about treatment, diagnosis or prognosis

Psychological and Cognitive Needs

  • Management of psychological symptoms
  • Financial concerns such as loss of income and medical costs
  • Legal concerns such a preferences for end-of-life care and advance care directives

Social Needs

  • Need for social support
  • Need related to language and information disclosure preferences

Spiritual Needs

  • Spiritual and existential concerns including hope, loss of meaning and uncertainty

Cultural Needs

  • Unique cultural and personal experiences are considered when planning care
Supporting families in palliative care 

Palliative care offers a support system to help the family cope during the illness and during their own bereavement.[3]

Family members (or friends) who take on the role of principal carer are often stressed and can benefit from support. This support requires the consent of the person with the life-limiting illness, and can include:[14]

  • Keeping the family informed about what is happening
  • Explaining what to expect and how they can help
  • Ongoing education about care and management
  • Managing expectations
  • Support during decision-making on end-of-life issues
  • Provision of emotional and spiritual support
  • Preparation for death when this is imminent
  • Support after death – and during the bereavement process.
Prevention and relief of suffering 

Palliative care provides relief from pain and other distressing symptoms.[3]

Many palliative conditions have complex symptoms and unrelieved symptom issues can have a negative impact on a person’s quality of life. People affected by life-limiting illness frequently experience a myriad of symptoms due to a combination of:

  • The illness itself
  • Illness-modifying treatment
  • Concurrent illness/comorbidities.
Early identification and assessment

Palliative care is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.[3]

Early identification, impeccable assessment and comprehensive management of physical symptoms are central to the provision of high quality palliative care. Even small improvements in symptom management can significantly improve quality of life.[15, 16]

Early palliative care:

  • Emphasises active, comfort-focused care and a positive approach to reducing suffering [3, 9]
  • Improves quality of life [5, 17, 18]
  • Helps to avoid burdensome interventions of low benefit [5]
  • Reduces hospital admissions [19]
Team approach 

Palliative care uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated.[3]

People affected by life-limiting illness often have complex and multifaceted needs.[20] In order to be effective, palliative care should be provided by a range of health professionals, trained volunteers, family members and carers.[13, 21, 22]  Not all people will need specialist palliative care.

Clinicians who have advanced training in palliative care deliver specialist palliative care services which includes providing direct care to people with complex palliative care needs, and providing consultation services to support, advise and educate non-specialist clinicians who are providing palliative care. [4, 9, 23]

This interdisciplinary approach enables collaborative and person-centred care. This can assist with care goals that are unlikely to be achieved by health professionals when working in isolation.[4, 7-9, 22, 24, 25]

 

  1. How do you define quality of life?
  2. How does your definition compare with those of other students – or your family and friends?
  3. How can the definition of “quality of life” change for a person as their illness progresses?
  4. Why is it important for healthcare professionals to understand a person’s own perception of quality of life and how it changes over time?
  5. The World Health Organization’s (WHO) definition of palliative care states that ‘palliative care’ is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications’.
    • Describe what is meant by ‘early in the course of a life-limiting illness’.
    • How does the WHO palliative care definition fit with your understanding of palliative care?
    • How would you explain what palliative care is to a patient or their family member?
  1. World Health Organization. Definition of Palliative Care. 2017  [cited 2017 March 13]; Available from: http://www.who.int/cancer/palliative/definition/en/.
  2. Palliative Care Australia. Palliative Care Service Development Guidelines. 2018; Available from: http://palliativecare.org.au/quality.
  3. Murray, S.A., et al., Palliative care from diagnosis to death. BMJ, 2017. 356.
  4. Walbert, T., Maintaining quality of life near the end of life: hospice in neuro-oncology. Neuro-Oncology, 2018. 20(4): p. 439-440.
  5. Palliative Care Australia. What is Palliative Care A4 Brochure. 2015  [cited 2019 January 23]; Available from: https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2016/05/What-is-Palliative-Care-A4.pdf
  6. Palliative Care Australia. What is Palliative Care? 2015  [cited 2019 January 23]; Available from: https://palliativecare.org.au/what-is-palliative-care.
  7. Palliative Care Australia. National Palliative Care Standards. 2018; 5th Edition:[Available from: http://palliativecare.org.au/standards].
  8. CareSearch. Living with illness: Quality of Life. 2017  [cited 2018; Available from: https://www.caresearch.com.au/Caresearch/tabid/1077/Default.aspx.
  9. Waller, A., et al., Development of the Palliative Care Needs Assessment Tool (PC-NAT) for use by multi-disciplinary health professionals. Palliative Medicine, 2008. 22(8): p. 956-64.
  10. Therapeutic Guidelines Ltd, Overview of Palliative Care. 2018: Melbourne.
  11. CareSearch. Patients’ and Families’ Experience of End-of-Life Care. Clinical Evidence 2017  [cited 2017 August 30]; Available from: https://www.caresearch.com.au/caresearch/tabid/740/Default.aspx.
  12. Palliative Care Expert Group, Therapeutic Guidelines: palliative care. 4 ed. 2016, Melbourne: Therapeutic Guidelines Limited.
  13. Therapeutic Guidelines Ltd, eTG complete [Internet]. 2018: Melbourne.
  14. Higginson, I.J., et al., An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med, 2014. 2(12): p. 979-87.
  15. Tassinari, D., et al., Early Palliative Care in Advanced Oncologic and Non-Oncologic Chronic Diseases: A Systematic Review of Literature. Rev Recent Clin Trials, 2016. 11(1): p. 63-71.
  16. Mitchell, G., et al., Case conferences between general practitioners and specialist teams to plan end of life care of people with end stage heart failure and lung disease: an exploratory pilot study. BMC Palliative Care, 2014. 13(1): p. 24.
  17. Sawatzky, R., et al., Embedding a Palliative Approach in Nursing Care Delivery: An Integrated Knowledge Synthesis. Ans. Advances in Nursing Science, 2017. 40(3): p. 263-279.
  18. Australian Government Department of Health. Understand your end of life care options. [Website] 2017 23 October 2017 [cited 2018 June 26]; Available from: http://www.health.gov.au/internet/main/publishing.nsf/Content/understand-your-end-of-life-care-options.
  19. Rome, R.B., et al., The Role of Palliative Care at the End of Life. The Ochsner Journal, 2011. 11(4): p. 348-352.
  20. Palliative Care Australia, Background Report to the Palliative Care Service Development Guidelines, prepared by Aspex consulting Melbourne, Editor. 2018.
  21. Klok, L., et al., Early Identification of Patients in Need of Palliative Care in Slovenian General Practice. Zdravstveno varstvo, 2018. 57(2): p. 55-64.
  22. 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.