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Challenges when providing care at the end of life

What are some of the challenges of providing care at the end of life? 

Aged care workers face a range of complex and emotional challenges when providing care at the end of life in different settings. [1, 2] Managing complex needs of the older person, within the context of navigating work competencies and responsibilities, can impact aged care workers’ professional role and personal journey. [3-5] 

Complexities arise when multiple end-of-life symptoms need to be considered alongside the older person’s existential, psychological, and social concerns. Workers can also be personally affected by rapid deterioration of the older person, the person dying a difficult death, or exposure to death in general. [5, 6] 

Want to learn more? 

palliAGED offer a useful series of Practice Tip Sheets for Careworkers and Practice Tip Sheets for Nurses that span more than 40 topics. 

For service providers or organisations, the action roadmap published by palliAGED may be helpful in considering how to meet the responsibilities outlined in Outcome 5.7 of the strengthened Aged Care Quality Standards. 

What can we do? 

Skills and competency 

Aged care workers:  

  • Identify practice areas where further upskilling / education / training / professional development is required. Seeking out resources to help address gaps in knowledge and understanding can improve competencies in delivering care within a palliative care setting. This may be more relevant if you are new to palliative care in aged care. 

Organisations:  

  • Provide and organise support and training for staff to optimise communication and collaboration with older people, their families, and care teams e.g., ELDAC’s Talking with families resources may be useful to support communication.
  • Develop and/or actively promote uptake of quality educational materials, manuals, and resources to support staff in implementing palliative care frameworks, interventions, tools, and advance care planning processes. 

The evidence:  

  • Aged care workers felt ill-equipped to manage the complex needs of the older person at the end of life. Some felt they had not received adequate hands-on training to care for older people at the end of life. [3, 5]
  • Education and training can be helpful supports for aged care workers. [3-9] These can include, for example, advance care planning, using assessment tools for pain and symptom management, encouraging the use of palliative care frameworks and patient-centred care pathways, and/or seeking to build competent nursing care teams.

Self-care 

Aged care workers:  

  • Develop a personalised self-care plan to support and maintain your wellbeing as a dedicated professional. Tip sheets on self-care for nurses and care workers may also help boost awareness about what you can do. 

Organisations: 

  • Facilitate self-care planning within staff wellbeing initiatives to empower employees. At an organisational level, the following resources may support these initiatives: Organisational Tips: Supporting staff wellbeing and Workforce Wellbeing.
  • Ensure timely staff access to employee assistance and counselling services to support the mental health of staff members.  

The evidence: 

  • Staff burnout, compassion fatigue, and/or emotional challenges were reported among aged care workers in this space. [3, 5, 6]
  • Staff may experience moral and ethical distress, [3, 4] through facing moral dilemmas such as having to go against the older person's wishes at the end of life.

Team support 

Organisations:  

  • Foster opportunities for debriefing and inter-professional support for allied health professional teams, especially for workforce members providing palliative care in rural and remote settings.
  • Consider implementing a formalised support system via clinical supervision – see guidance on caring for the care provider 

The evidence: 

  • There is a need for personal support (e.g., emotional support programs or time to grieve, informal peer grief-support sessions, sense of cohesiveness among coworkers, and/or task orientation) to assist in addressing aged care workers’ challenges when providing care at the end of life. [3, 5, 6] 

 

  1. Alruwaili AN, Alruwaili M, Ramadan OME, Elsharkawy NB, Abdelaziz EM, Ali SI, et al. Compassion fatigue in palliative care: Exploring its comprehensive impact on geriatric nursing well-being and care quality in end-of-life. Geriatr Nurs. 2024;58:274-281.
  2. Forward C, Bayley Z, Walker L, Krygier J, White C, Mwaba K, et al. Homecare workers needs and experiences in end of life care: Rapid review. BMJ Support Palliat Care. 2024;14(e3):e2330-e2340.
  3. Nasu K, Konno R, Fukahori H. End‐of‐life nursing care practice in long‐term care settings for older adults: A qualitative systematic review. Int J Nurs Pract. 2020;26(2):e12771.
  4. Bennett FB, Hadidi NN, O'Conner-Von SK. End-of-life care communication in long-term care among nurses, residents, and families: A critical review of qualitative research. J Gerontol Nurs. 2021;47(7):43-49.
  5. Herber OR, Johnston BM. The role of healthcare support workers in providing palliative and end‐of‐life care in the community: A systematic literature review. Health Soc Care Community. 2013;21(3):225-235.
  6. Spacey A, Porter S, Board M, Scammell J. Impact of the COVID-19 pandemic on end of life care delivery in care homes: A mixed method systematic review. Palliat Med. 2021;35(8):1468-1479.
  7. Barber-Fleming V, Mann M, Mead G, Gleeson A. The effectiveness of advance care planning (ACP) training for care home staff: An updated systematic review. J Long Term Care. 2023;2023:273-287.
  8. Carpenter JG, Lam K, Ritter AZ, Ersek M. A systematic review of nursing home palliative care interventions: Characteristics and outcomes. J Am Med Dir Assoc. 2020;21(5):583-596.e2.
  9. Leduc S, Cantor Z, Kelly P, Thiruganasambandamoorthy V, Wells G, Vaillancourt C. The safety and effectiveness of on-site paramedic and allied health treatment interventions targeting the reduction of emergency department visits by long-term care patients: Systematic review. Prehosp Emerg Care. 2021;25(4):556-565. 
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