Planning for End of Life

ED: The statements or opinions expressed here reflect the views of the authors and not necessarily those of Medical Forum.

]Members of GSPCS and the Rural Clinical School of WA spent five years researching Advanced Care Planning in the region. Their work has been embraced by their patients who feel safe that their wishes will be respected. The team have made documenting patients’ wishes in Advance Health Directives and ensuring copies are sent to all key stakeholders in their care a priority.

Dr Gillian Mitchell

I picked up many tips from the skilled doctors and nurses of the GSPCS, which I have enjoyed integrating into my own practice.

Here are some gems:

  • Determining when to initiate discussion about advance care planning can be challenging. A change in health or new diagnosis can be a good trigger to start. The most important thing is just to start!
  • Asking patients who they would like to speak for them if required can be a good way to introduce advance care planning. People often volunteer their wishes, making the discussion much easier.
  • You cannot cover every eventuality in an AHD. The conversation around its completion is as important as the document itself as it assists doctors and families understand what a patient’s wishes are likely to be in a given situation, even with a clear surrogate decision maker.
  • When someone no longer has capacity to complete an AHD, completing an advance care plan with them and their family is a good way to document their wishes, even if it is not legally binding. Information regarding advance care plans is available at: http://healthywa.wa.gov.au/~/media/Files/HealthyWA/Original/ACP_A_Patients_Guide.pdf

The Metropolitan Palliative Care Consultancy Service (MPaCCS) has extensive experience with advance care planning for residents of aged care facilities in the metropolitan area (see www.bethesda.org.au/MPaCCS.aspx for referral forms and information about the service.)

  • Asking patients what an unacceptable quality of life looks like to them can help them to express their wishes and plan for the future e.g. a patient with early dementia wrote:
    • In the following circumstances: I need hands-on help for activities such as toileting, showering and feeding AND / OR I can no longer communicate meaningfully with my family
    • I refuse consent to the following treatment: life-prolonging treatments such as artificial nutrition, feeding tubes, breathing tubes, life support or intravenous therapies such as antibiotics or fluids
  • Building therapy into the Advance Health Directive can express a patient’s wishes e.g. someone with emphysema wrote:
    • In the following circumstance: I continue to deteriorate despite 72 hours of intravenous antibiotics, corticosteroids and supportive care in hospital for an exacerbation of my lung disease.
    • I consent to the following treatment: for the above treatment to be stopped and to change to palliative care including medications for breathlessness.
  • There is no centralised means of storing Advance Health Directives in WA. I advise patients to keep a copy with their medications as ambulance paramedics are likely to ask for a patient’s medications. Having the AHD stored in the same place helps trigger patients and families to take it with them to hospital.

Information about completing an Advance Health Directive in WA and kits can be found at the public advocate website www.publicadvocate.wa.gov.au/A/advance_health_directives.aspx

As the medical registrar in a busy tertiary hospital I have whispered a silent ‘thank you’ to patients whose Advance Health Directives (AHD) have avoided difficult conversations in emotionally fraught circumstances. While benefits of an AHD are clear clinically, it was not until I spent two weeks with the Great Southern Palliative Care Service (GSPCS) recently that I truly appreciated the benefit of an AHD from a patient’s perspective.