Core Modules

module 2 | Activity 13: End-of-life concerns

Providing support and information

The end stage of a person’s life can provide some of the most profound and memorable experiences for family members. These moments can provide a time for sharing thoughts and hopes, and expressing love and support. It is a time to say goodbye. It can also be a time when families experience extreme distress and require a great deal of support from the healthcare team.[1-4]

Family and other caregivers often have particular concerns and fears about end-of-life issues:[5]

  • They often want to know what will happen and what they can do to help
  • They are often concerned that they will not be able to cope with the events.

It is not always possible to predict how a person will die. However, the following strategies can help to provide support to family members during this time:[1, 5-8]

  • Recognise and acknowledge that the person is in the terminal phase
  • Discuss any concerns and changing goals of care with the person and their family / carers and document in their care plan
  • Maintain comfort, choices and quality of life
  • Support the person’s individuality
  • Care for the psychosocial and spiritual needs of the person and their family
  • Offer a choice of place of care when possible
  • Reduce inappropriate and burdensome healthcare interventions
  • Continue support for families after death as bereavement care.

Recognising the terminal phase

Recognising when death is approaching is an important clinical skill which allows the healthcare team and the person with a life-limiting illness, their family and carers to prepare. Most people fear the dying process and do not know what to expect; it is helpful to explain it to them in simple terms. With good care it is possible for most people to die comfortably.[9] This requires healthcare professionals to possess good communication skills.

There is no accurate way to determine when death will occur.[9, 10] In the weeks leading to the terminal phase, signs of deterioration can be present, including:[9, 11-13]

  • Signs of illness progression including enlargement of solid tumours, worsening symptoms, weight loss
  • Reduced strength and energy
  • Increased drowsiness and sleeping
  • Reduced eating or drinking.

In the last days of life the person:[9, 14]

  • Becomes totally bed-bound and requires full care (*AKPS score of 20 or less)
  • Is poorly responsive or unconscious with limited response
  • Is unable to swallow
  • Has reduced or no urine output
  • Has changes in their breathing pattern
  • Shows signs of peripheral shutdown, eg pale or mottled skin, cold hands and feet.

*AKPS – Australian-modified Karnofski Performance Scale

Additional Resources

Several Palliative Care organisations have developed brochures about the dying process which can be useful when undertaking challenging conversations around dying and death.

  1. What are some of the issues experienced by families and carers in the following end-of-life care settings:
    • Hospital
    • Home
    • Residential Aged Care?
  2. From the perspective of your own profession, what specific supportive care can you offer as part of end-of-life care?
  1. Keeley, M.P., Family Communication at the End of Life. Behavioral sciences (Basel, Switzerland), 2017. 7(3): p. 45.
  2. Schulz, R., et al., Preparedness for death and adjustment to bereavement among caregivers of recently placed nursing home residents. J Palliat Med, 2015. 18(2): p. 127-33.
  3. Virdun, C., et al., Dying in the hospital setting: A meta-synthesis identifying the elements of end-of-life care that patients and their families describe as being important. Palliat Med, 2017. 31(7): p. 587-601.
  4. Virdun, C., et al., Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important. Palliat Med, 2015. 29(9): p. 774-96.
  5. Therapeutic Guidelines Ltd, Support for families and carers in palliative care. 2018: Melbourne.
  6. CareSearch. Principles of Good End-of-Life Care. Clincial Evidence 2017  [cited 2017 October 17]; Available from: http://www.caresearch.com.au/caresearch/ClinicalPractice/Physical/EndofLifeCare/PrinciplesofGoodEndofLifeCare/tabid/739/Default.aspx.
  7. Chapman, L. and J. Ellershaw, Care in the last hours and days of life. Medicine (United Kingdom), 2015. 43(12): p. 736-739.
  8. Robinson, C.A., B. Pesut, and J.L. Bottorff, Supporting Rural Family Palliative Caregivers. Journal of Family Nursing, 2012. 18(4): p. 467-490.
  9. Therapeutic Guidelines Ltd, Terminal care: care in the last days of life. 2018: Melbourne.
  10. Clark, K., Care at the Very End-of-Life: Dying Cancer Patients and Their Chosen Family’s Needs. Cancers, 2017. 9(2): p. 11.
  11. Hudson, P. and R. Hudson, Supporting a person who needs palliative care: A guide for family and friends. 2012, Palliative Care Victoria: East Melbourne.
  12. Palliative Care Expert Group, Terminal care: care in the last days of life, in Therapeutic Guidelines: palliative care. 2016, Therapeutic Guidelines Limited: Melbourne. p. 359-386.
  13. Palliative Care Australia The dying process. 2014.
  14. Kennedy, G., The Importance of Patient Dignity in Care at the End of Life. The Ulster medical journal, 2016. 85(1): p. 45-48.
  15. Palliative Care NSW. Signs and Symptoms of Approaching Death. 2009 01/06/2009 [cited 2019 18/01/2019]; Available from: http://www.palliativecarensw.org.au/pdfs/PCNSW-Signs-Symptoms-of-Approaching-Death-ARTICLE.pdf.
  16. NCCN Guidelines Version 2.2013 Panel Members Distress Management, NCCN Clinical Practice Guidelines in Oncology: Distress Management. 2013: National Comprehensive Cancer Network.