Life-limiting illness not only brings physical and emotional challenges but can also see practical issues around money, administrative paperwork and future planning needs. For many families, financial pressures and legal matters can add stress at an already difficult time. Addressing these issues early may provide peace of mind for everyone involved.
In Queensland, there are various pathsavailable to help with financial assistance, legal planning and decision-making. PalAssist can provide support and navigation, throughateam of Advisors or our Services Directory, to connect you to assistance that meets your individual needs.
Financial assistance
Caring for someone facing end of life can affect household income and expenses considerably. Many people,and/or their carers,may reduce their work hours or leave employment for a range of reasons. This may be necessary, such as due to progression of illness or symptom burden, or as a choice, say to enhance quality of life.
If you provide care for someone you may be entitled to a payment through Services Australia, such as:
- Carer Payment: a fortnightly income replacementpaymentwhich is designed to live off. It is applicable if you are unable to work because you are providingsubstantial full-time care or supervision to someone in their home. It is both income and assets (means) tested.
- Carer Allowance: a fortnightly ‘top-up’ supplementdesigned to supplement the costs inthe provision of daily It can be paid in addition to other income, such as paid employment or the Carer Payment, and is only income (not asset) tested.
- Carer Supplement: an additionalonce-yearly payment connected to either the Carer Paymentor Carer Allowance benefit. It is designed to help with the costs of caring.
There are also bereavement supports and payments that may provide financial assistance for partners, carers or parents following a death.The type and amount depend on each of the following:
- your individual circumstances
- your relationship to the person who died
- when you advise Services Australia about the person’s death
Contact Services Australia for assistance or specific advice around your situation.
Other options for financial assistance or rebates may include early access to superannuation on compassionate grounds,insurance cover (including through your superannuation fund) or private health benefits you may be entitled to.
Advance care planning
Getting your personaland legal mattersfinalised and documentedis an important part of advance care planning. Doing so ahead of time may reduce stress for families and ensures that a person’s wishes are respected. It also means that undivided and quality time can be spent with loved ones, instead of being occupied with administrative tasks, at the end of life.
In Queensland, the way to communicate your values, wishes and preferences around personal (health) and financial matters is to discuss, then formally record them. Important documents include:
- Advance Health Directive (AHD):a legal document that allows you to record your health care preferences. You can also use this form to appoint a person to make decisions for you (an Attorney), if you wish. An AHD is only referred to, by the medical team looking after you or your loved one, in the event that they becomeunable to communicate (such as speak or write) for themself. An example of this is if you were in a coma. The form is a record of the preferences for medical treatments and can be general or specific in nature.
- Enduring Power of Attorney (EPoA): a legal document to appoint an Attorney for personal and/ or financial matters. Personal matters may include decisions about health care, lifestyle supports, where you are cared for or legal issues. Financial matters may include decisions about expenses, property, or business matters. You can record which decisions may be made, and when and how they can make them. You can choose different Attorneys for personal or financial decisions, or the same person for both.
There are other documents not discussed here, such as a Statement of Choices, that may also need to be considered depending on health issues and other advice.
Various government and non-government organisations, such as the Queensland Public Trustee, may provide will-making and advice services for Queensland residents. Community Legal Centres Queensland can provide low-cost or free advice, depending on the service location.
Read more about this topic in our Advance Care Planning article.
Managing costs of care
Beyond everyday expenses, families may need to consider theadditional costs of specialised equipment, specialist visits, medications or home modifications. Depending on your situation, location and individual needs, options may include:
- Hiring or borrowing of equipment, such as hospital beds, through the Queensland Government Medical Aids Subsidy Scheme or other service provider
- Services Australia offer an Essential Medical Equipment Payment if you need to run electrical equipment for your health
- Queensland Government provides travel subsidies for medical appointments through the Queensland Health Patient Travel Subsidy Scheme or Non-emergency medical transport program
- Keeping a record of the costs of medications over the calendar year,via the Pharmaceutical Benefits Scheme- Safety Net, can reduce your costs after a set threshold is reached.
If you are having trouble paying accounts such as electricity, phone or water bills, contact the service provider as soon as you can to discuss your options. Other ways to explore how you may be able to save or access financial benefits include:
- Referring to the Australian Government page about financial help if you have a terminal illness
- If over 65 years of age, you may be eligible for theEnd-of-Life Pathway orfinancial hardship assistance provided by My Aged Care
- Exploring the Queensland GovernmentFind concessions and rebates page
- Accessing charitable subsidies or grants for people in financial hardship, such as through non-government, diagnosis-specificor not-for-profit organisations
- Seeking advice from financial counsellors or planners, who can provide strategies for managing debt and budgeting under pressure.
- The Services Australia Financial Information Service, including guidance and webinars
If managing the costs associated with medical and end-of-life care is concerning you or your carers, ask to speak to a social worker within the palliative care team or contact our PalAssist Advisors to help you navigatethis area.
Employment rights for people and their carers
If you are working while facing a life-limiting diagnosis, or providing care for someone who is, it is important to understand your entitlements. Under the Fair Work Act 2009, most employees (except casuals)may be able to access one or more of the following:
- Sick and carer’s leave
- Annual leave
- Compassionate and bereavement leave
- Long service leave
- Unpaid leave
Flexible work arrangements, such as reduced hours or working from home, may also be worth speaking with your employer about. Employers are required to consider requests for flexible work seriously, and information is available through the Fair Work Ombudsman.
Why planning ahead matters
Some people avoid conversations about money and legal planning because they find it uncomfortable or fear it will be overwhelming. Sometimes people were raised to avoid discussing money or private matters, as it was considered bad manners or impolite. However, in the palliative care setting, families often report relief once these matters are sorted prior to being needed, whether for themselves or their loved one. Having clear plans in place means:
- Wishes are documented and known prior, and so loved ones can avoid the confusion or anguish of surprise later
- Families are spared difficult decisions, especially during times of advanced illness or bereavement
- Choices are protected and can be undertaken according to the person’s intentions
- Carers can access ongoing financial and other support, at a time when needed.
Taking the next steps
When you are living with a life-limiting illness, planning can provide peace of mind. By ensuring that plans and documentation are in order, you can give yourself and your loved ones the gift of certainty, quality time and peace of mind during an already challenging period. It may feel vast or overwhelming, but help is available every step of the way. Speak with your palliative care team or contact PalAssist for information and support.
