Nurse practitioners: increasing access to palliative care in residential aged care facilities

Nurse practitioners: increasing access to palliative care in residential aged care facilities

An article written by Nikki Johnston OAM, Palliative Care Nurse Practitioner

Older Australians living in residential aged care (RAC) often live with multimorbid chronic disease, increased disability and have complex palliative care needs that include pain, breathlessness, and frailty. Traditionally, palliative care services were designed to provide care to people with a cancer diagnosis. Despite a global call for palliative care to be available to all, regardless of age, diagnosis or where they live, service provision has been slow to respond resulting in inequity of access to specialist palliative care across Australia. [1] The leading cause of death for Australian women is dementia including Alzheimer’s disease. Dementia is the second leading cause of death for Australian men with only heart disease resulting in more deaths. An Australian report in 2017 found limited access to specialist palliative care with only 2.4% of patients with a dementia diagnosis accessing specialist palliative care compared to 75% of patients with a terminal cancer diagnosis. [2] Also, minority groups, including First Nations peoples, have significant access barriers to health care, including specialist palliative care. [3-6]

People living in RAC often live with varying degrees of cognitive impairment. This may be a result of intermittent delirium and or permanent neurodegenerative disorders like dementia and Parkinson’s disease. Nurses and carers working in RAC continue to provide care for people with very complex needs in an environment that often lacks senior staff. As the palliative care needs of residents are high, as is their acuity, care staff including registered nurses are under pressure to deliver high quality care to their residents, often unsupported by senior staff. To fill this gap, Dr Michael Chapman and I produced an education and mentoring proactive model called Palliative Care Needs Rounds (PCNR). This model uses in-reach senior palliative care or aged care clinicians to educate and mentor RAC staff.

The three components to PCNRs
 

  1. The palliative care needs round itself

PCNRs entail a monthly case-based educational intervention, wherein the Palliative Care Nurse Practitioner visits a Residential Aged Care (RAC) facility. During these sessions, the practitioner engages with staff members who select files of 10 residents deemed at risk of passing away within the next 12 months yet lack a formulated care plan. [7] During COVID-19 we successfully used telehealth for PCNRs. [8] In our case, PCNRs were conducted by palliative care nurse practitioners. In other cases, they have been successfully run by palliative medical specialists, general practitioners or even in-house aged care nurse practitioners. [9,10]

During the PCNR education meeting, care staff learn:

  • how to recognise dying as opposed to a resident being sick and needing to go to hospital
  • the benefits and burdens of hospital transfer  
  • that dementia and Parkinson’s diagnoses cause pain and that pain is under recognized and undertreated in older people
  • how to assess pain using the Abbey Pain Scale when residents have cognitive impairment.

Staff also learn about:

  • about consent, assent, and descent
  • symptom management and what they learn for one resident can be used for another
  • law at end of life, including appointing a legally appointed decision maker for when the resident lacks capacity to make decisions
  • communication at end of life with residents and their families.

Staff feel supported to debrief about what didn’t go so well when a resident died.  They also learn about decision making, shared decision making and planning for end of life. [11]

One of the key findings of why the model worked was having access to a senior practitioner who could prescribe anticipatory injectable medications for end-of-life care. In our case, the Nurse Practitioner model worked well. [11] Palliative Care Needs Rounds have improved access to specialist palliative care, have increased the confidence of RAC staff in caring for their residents in the last months of life, improved the quality of dying and reduced avoidable transfers to acute care saving money for the state governments. [12-14]

 

  1. Case conferencing to address the need for planning at end of life

At the case conference component of PCNRs, general practitioners, nurse practitioners, care staff, the resident, and their legally appointed alternate decision maker attend. Throughout the COVID-19 pandemic this was often done using telehealth. [8] By the end of the conference, an advance care plan was completed after a goals of care discussion. Medications are reviewed and deprescribing happens for non-essential medications that will not provide comfort. This reduces polypharmacy.  An example of how this helps care staff to support residents to die in place is ceasing blood thinners to avoid unwanted transfer to hospital as policies exist that any resident on blood thinners that falls must go to hospital. This isn’t a one size fits all but rather looking at benefits versus burdens of treatment. If the resident’s preferred place of death is the RAC, then subcutaneous anticipatory medications are charted and prescribed for pain, breathlessness, seizure management, pulmonary oedema management using sub cut Lasix or any other symptom that requires management.
 

  1. Clinical input by a palliative care nurse practitioner for complex palliative care needs [15]

This is when the Specialist Palliative Care team gets a referral. Up until now, the care staff have been caring for residents with support only.  This includes face to face, assessment and management of complex palliative care needs for residents and their families referred to the specialist palliative care service at the PCNR.

 

The Comprehensive Palliative Care in Aged Care measure

The success of the PCNR pilot in Canberra influenced a decision by the Commonwealth Government in 2018 to invest in The Comprehensive Palliative Care in Aged Care measure ('the measure'). The measure aims to help older Australians living in residential aged care, nearing the end of their life. The measure was a partnership agreement between the states/territories and the Commonwealth and has uptake in all states and territories. In this year’s 2024 Federal Budget, Palliative Care Australia have lobbied to maintain funding for the Comprehensive Palliative Care in Aged Care measure.

 

Author


Nikki Johnston OAM

Palliative Care Nurse Practitioner

Canberra Regional Cancer Services, The Canberra Hospital

 

 


Reference

  1. Walsh SC, Murphy E, Devane D, et al. Palliative care interventions in advanced dementia. Cochrane Database Syst Rev 2021; 9: Cd011513. 20210928.
  2. Parker D, Lewis J, Gourlay K. Palliative care and dementia. A report for Dementia Australia, prepared in collaboration with Palliative Care Australia (4.8 MB pdf). Dementia Australia; 2018.
  3. Healing Foundation. Working with the Stolen Generations: Understanding trauma (1.05 MB pdf). Canberra, ACT: Healing Foundation; n.d.
  4. Woods JA, Newton JC, Thompson SC, et al. Indigenous compared with non-Indigenous Australian patients at entry to specialist palliative care: Cross-sectional findings from a multi-jurisdictional dataset. PloS one. 2019; 14: e0215403-e0215403.
  5. Wood MP, Forsyth S, Dawson H. Remote area nurses' perceptions of the enablers and barriers for delivering end-of-life care in remote Australia to Aboriginal people who choose to pass away on their traditional lands. Rural Remote Health 2021; 21: 6485. 20210705.
  6. Woods JA, Johnson CE, Ngo HT, et al. Symptom-related distress among Indigenous Australians in specialist end-of-life care: Findings from the Multi-Jurisdictional Palliative Care Outcomes Collaboration Data. Int J Environ Res Public Health 2020; 17: 3131.
  7. Forbat L, Chapman M, Lovell C, et al. Improving specialist palliative care in residential care for older people: A checklist to guide practice. BMJ Support Palliat Care 2018; 8: 347-353.
  8. Samara J, Liu WM, Kroon W, et al. Telehealth Palliative Care Needs Rounds during a pandemic. J Nurs Pract 2021; 17: 335-338.
  9. Rainsford S, Johnston N, Liu W-M, et al. Palliative care Needs Rounds in rural residential aged care: A mixed-methods study exploring experiences and perceptions of staff and general practitioners. Prog Palliat Care 2019; 28: 308-317.
  10. Liu WM, Koerner J, Lam L, et al. Improved quality of death and dying in care homes: A palliative care stepped wedge randomized control trial in Australia. J Am Geriatr Soc 2020; 68: 305-312.
  11. Johnston N, Lovell C, Liu WM, et al. Normalising and planning for death in residential care: Findings from a qualitative focus group study of a specialist palliative care intervention. BMJ Support Palliat Care 2019; 9: e12.
  12. Chapman M, Johnston N, Lovell C, et al. Avoiding costly hospitalisation at end of life: Findings from a specialist palliative care pilot in residential care for older adults. BMJ Support Palliat Care 2018; 8: 102-109.
  13. Forbat L, Liu WM, Koerner J, et al. Reducing time in acute hospitals: A stepped-wedge randomised control trial of a specialist palliative care intervention in residential care homes. Palliat Med 2020; 34: 571-579.
  14. Koerner J, Johnston N, Samara J, et al. Context and mechanisms that enable implementation of specialist palliative care Needs Rounds in care homes: Results from a qualitative interview study. BMC palliative care 2021; 20: 1-118.
  15. Forbat L, Johnston N, Mitchell I. Defining 'specialist palliative care': Findings from a Delphi study of clinicians. Aust Health Rev 2020; 44: 313-321.
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The views and opinions expressed in Palliative Perspectives are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health and Aged Care.