Palliative care may be provided when someone has an illness that’s likely to cause death within the foreseeable future. This may vary from a few days to years. For many residents, the staff in the aged care facility will be able to provide the care needed. However, some residents may need specialist palliative care involvement. The following questions will help you find out whether the facility can manage your changing needs in the final stage of your life. Here are the 10 questions to ask about palliative care in residential aged care.
1. How do you assess the resident’s palliative care needs?
Staff should be able to carry out or support a thorough assessment of any palliative care needs you might have. This should focus on maximising your quality of life, your comfort and wishes and taking into account your health condition.
2. How will you ensure my wishes and values are upheld at end-of-life?
Right at the start of your care, the staff should be having conversations with you about your end-of-life choices and wishes, this is called advance care planning discussions. You may opt to make a formal Advance Care Plan and Advance Care Directive*. In any case, a plan of care that clearly identifies your end of life choices should be written and staff fully aware of this. This is particularly useful in an emergency or if you are unable to communicate as your needs change.
3. What palliative care training do staff receive?
Knowledge and experience may vary depending on whether a staff member is a care worker or an experienced registered nurse. All staff should be trained in palliative care when they are first employed and then given regular updates.
4. How will staff recognise when I’m close to dying and what processes are in place for this?
Ask if staff have been trained to recognise signs of dying and know how to respond appropriately. There should be registered nurses on-site at all times to manage your care and supervise the care team.
5. What support will there be for my loved ones when I’m close to dying?
Ask how your loved ones will be told about your changing condition and whether they can stay overnight if you need them. Check if there are restrictions on visiting times.
6. What arrangements are in place for my spiritual and cultural needs?
If you have particular cultural or religious needs or preferences ask how these can be met and check or that external visits can be facilitated. You have the right to have your identity, culture and diversity valued and supported. You should be given a copy of the Charter of Aged Care Rights which outlines these rights.
7. Do you have access to specialist palliative care services?
Palliative care specialists provide outreach support to advise and support your regular GP and staff if they need expert advice. They also provide support to you and your loved ones/family. This service is not available in all areas. In this circumstance, check the arrangements for staff to access specialist advice and support if your care needs become more complex.
8. How will you ensure I have timely access to medications when I am dying?
You may need access to injectable medications to manage distress like pain and breathing. Make sure staff know who to contact when this happens. Ideally, staff should anticipate your needs and have the medications ready just in case you need them. Make sure there’s a registered nurse on-site at all times to administer these medications.
9. How many staff are present on evening and night duty?
Ask how many care workers are present on each shift and how many residents they look after. Also, ask if there are registered nurses present at all times to manage your care and administer medications including pain relief.
10. What specialist equipment do you provide?
You may require a specialist mattress and/or equipment to keep you comfortable and safe. Some places charge for these so check what’s included and what additional charges you might incur. Remember your needs may change so think about what you might need in the future when working out extra costs.
*Advance Care Planning is the process of planning for your future health care. It relates to the health care you would or would not like to receive if you were to become seriously ill or injured and are unable to communicate your preferences or make decisions. Ideally, this will result in your preferences being documented in a plan known as an Advance Care Directive and the appointment of a substitute decision-maker to help ensure your preferences are respected Advance Care Directives differ between states and territories.
You may find these questions to ask about palliative care in residential aged care leaflet useful when:
• Searching for a high-quality residential aged care facility.
• Reviewing the quality of your current residential aged care facility.
• Deciding between two residential aged care facilities that appear similar.
It’s important that there are enough registered nurses within the staff skill mix to meet everyone’s needs. You should ask questions about how your individual care needs will be met.
Many staff wear similar uniforms. Just because someone looks like a nurse does not mean they are. Here are the differences:
A Registered Nurse (RN) has undertaken a minimum three-year Bachelor of Nursing course. They can undertake nursing procedures, manage pain medication and help prevent unnecessary hospital admissions.
An Enrolled Nurse (EN) works under the direction of an RN. Both are registered by a regulatory body. Registration ensures professional standards are maintained and protects the public.
Assistants in Nursing (AIN)/Care Workers/Care Service Employees (CSE) are unlicensed. They provide most of the care in residential facilities and communities but their level of training is variable.
Some useful links:
10 questions to ask about palliative care in residential aged care PDF article download link –
https://www.10questions.org.au/PDF/10%20Questions%20to%20ask-palliative%20care%20FINAL.pdf
Carer’s Circle article on Guide to palliative care – what you need to know –
https://carerscircle.com.au/2021/05/27/guide-to-palliative-care-what-you-need-to-know/
The 10 questions to ask series reproduced on Carers’ Circle – https://carerscircle.com.au/?s=10+questions
10 questions to ask about dementia care in residential aged care – https://carerscircle.com.au/2021/09/21/10-questions-to-ask-about-dementia-care-in-residential-aged-care/
Quality Aged Care Action Group (QACAG) – An independent grassroots community action group that lobbies for high quality aged care in all settings including residential and home care. QACAG is an organisational member of the NSW Aged Care Roundtable. It contributes to the development and consumer testing of the ’10 Questions to Ask’ series of consumer-facing resources for people seeking aged care – https://qacag.org.au/
Aged Care Reform Now – a grassroots organisation that is advocating for reform of the aged care system including better staffing in residential aged care – https://agedcarereformnow.com.au/
This article “10 questions to ask about palliative care in residential aged care” was originally published as a leaflet on 10questions.org.au. Reproduced with permission.
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