Who will have your back at the end-of-life?

Apr 17, 2023 | Advance Care Planning, General Care Info

Family estrangement remains a taboo subject in Australia. The assumption that families stay connected underpins much of the aged care practice and end-of-life planning in Australia. Yet social worker and academic Dr Kylie Agllias found one in 25 Australians are estranged from their family. A study by the Pew Research Center in the USA found this figure is closer to 40% for LGBTQIA+ identified people. Many of the reasons are difficult subjects such as conflicting perceptions of betrayal, favouritism, family roles, secrets and abuse that cannot be unpacked in time, even if people wish to reconcile prior to dying.

Lingering doubts about trust and reliability also place already strained relationships under greater pressure when care is a factor. This creates an emotional and practical vacuum in the lives of people who are estranged from family but need end-of-life support.

But that doesn’t mean you cannot access a good death or setup a supportive approach to end-of-life if you are estranged from family.

Let’s explore what it takes to create a supportive end-of-life experience with minimal to no involvement of family

What can an estranged family influence at end-of-life?

If you’re estranged from family, chances are there is a disconnect in values. Values define end-of-life care choices. Whether you’re discussing Palliative care, Advance Care details if you lose capacity, or what you want done with your body and the farewell rituals attached.

However, while you may be estranged from your family, they may still have legal rights in relation to your life as a next of kin. While Australia has no implicit laws to define next of kin, it’s still an influential role and will default to:

  • Your de facto partner or spouse
  • Your parents
  • Your children
  • Your siblings

This reach may further expand out to cousins or grandchildren.

Your next of kin is not obliged to look after you or your end-of-life preparations. However, as the closest living blood relative (or partner by marriage, even if separated), they can:

  • Make care decisions on your behalf if you lose capacity or there are doubts about your mental, emotional, intellectual or psychological fitness to decide for yourself
  • Activate or deny your euthanasia plan
  • Decide when to stop treatment and when to continue
  • Register your death and apply for the death certificate
  • Plan your funeral
  • Notifying other friends and family you have died
  • Make arrangements for body disposal
  • Decide on organ donation
  • Finalise your estate, including money, property, debt, etc

Giving over this level of control of your care wishes, the event of your death, and what happens after you die can be a very unappealing prospect. Especially if, legally, you’re classed as family, yet emotionally and intellectually, you view the relationship as far more separate or even over. Or if the person declines to assist because of the estrangement when you need them the most.

How can you plan ageing and end-of-life around family estrangement? 

Yes. In fact, planning for ageing, accident, disability and dependent care needs is your best defence against falling foul of difficult family dynamics.

You can plan to fill the gaps left by family estrangement by:

Building Care Trees

If you are in a situation where illness, disability, or life-limiting diagnosis creates a need for higher levels of care but you do not family involved in caring for you, a Care Tree can help.

A Care Tree is a network of friends, services and other supports that are mapped out to meet your care needs. They can include:

  • Public or Private in-home care services
  • Preferred care centres such as Palliative Care centres, aged care facilities or disability care facilities
  • Nominated friends to take part in your care such as taking you to appointments, specifying co-living arrangements, or access to funds and supports
  • Less involved friends, neighbours and other supports that help with day-to-day living like shopping, keeping you company, meal preparation, or simply being there if you need it
  • Community supports such as networks within Aboriginal and Torres Strait Islander, LGBTQIA+ or multicultural communities that help look after you through volunteerism
  • Software that saves your documents, photos, information, plans and more in one place
  • Support groups, counsellors, and other well-being supports

Consider all the people, places, organisations and cultural supports that you might like to use. Understand the costs (financial, labour, resources) and map out how you’d like these moving parts to fit together to create a care experience.

Putting care plans in place

A significant proportion of people lose the ability, either medically or legally, to decide for themselves prior to dying. This is when many estranged people feel the most vulnerable, especially if ableism, neglect or abuse have been a defining feature of the relationship.

This is where care plans and advance care directives can bridge the gap.

These useful documents advocate for your rights if you can no longer do so for yourself.

Care plans can define:

  • Your health and medical choices
  • Your social, psychological and mental health choices
  • What values you hold dear and how they influence your decision-making
  • Nuance – such as whether you want a bath in the morning, to spend time in the garden at lunch, or your cat snuggling on the bed at night
  • What quality of life can look like for you in the moments before losing awareness but after losing the ability to communicate decisions

Advance care directives take this further and define:

  • What treatments you will and wont refuse
  • What quality of life looks like when compared to sustaining your life
  • Where your treatment line ends
  • Who gets to make decisions on your behalf as your Enduring Guardian

Care plans and advance care directives define how you are treated and your quality of life overall.

You can use them to:

  • Make sure someone else’s religion doesn’t dictate your treatment options
  • Stop an abuser from making care decisions for you
  • Prohibit dramatic or unstable family members from attending bedside
  • Put someone who shares your view on quality of life in charge
  • Bypass your family’s involvement in medical, mental health and physical health care decisions

Nominating an Executor

An Executor is the one who will sort through your affairs after you die. It’s their job to:

  • Locate your will and communicate it’s instructions to your beneficiaries
  • Apply for probate to gain access to your bank accounts, records and personal documents
  • Clear your outstanding debts
  • Ensure the beneficiaries receive what remains in the manner you have outlined

They make the administration side of your affairs easier on friends and family while also ensuring that your estate is directed the way you would want it to go. This is especially true if you have no interest in your family receiving the bulk of your estate.

Writing a will

A Will articulates how you want your estate and assets distributed. Writing a Will goes beyond who will get money when you die. It may also include continuing payments to people or organisations after you die, such as paying for a child’s care or continuing a line of philanthropy.

Family are the most likely to challenge a Will, and they can do so under the following conditions:

  • The date of the Will or whether there are other Wills present
  • It wasn’t properly signed and witnessed as a legal document
  • Doubts that you were mentally, cognitively or physically well enough to create it
  • Changes after signing are evident
  • The potential for coercion or influence
  • Failure to provide for family under a ‘family provision claim’

Marriage also revokes your Will unless a Will is made with the marriage in mind. Any change to relationship status such as marriage, divorce, separation or no longer in de facto partnership generally requires a new Will.

Planning a funeral

If you don’t want prayers and want Madonna’s Like a Prayer instead, or if you want to trade the church and solemn wake for the Irish whiskey bar and ribald stories, planning a funeral is a must.

When planning a funeral, you can:

  • Specify if you are cremated or buried
  • Nominate to give your body to science or a body farm
  • Keep it small or go big
  • Set spending caps and limits on inclusions
  • Choose between not-for-profit, eco or traditional funeral homes
  • Plan the after party or wake
  • Choose your food, music, venue, outfit, eulogies, entertainment and more
  • Include as little or as much family, religion, solemnness as you want

Heck, you can even be around for a living funeral if that’s what you choose.

When leaving the last impression with your friends and loved ones, created something that reflects you is paramount. It also reduces the risk of your friends and allies over-spending or over-planning while they grieve.

Plus, it can be a whole lot of fun.

Choosing the right people to support you at end-of-life

If family isn’t there for you through estrangement or death, you can still plan for a supported end-of-life and funeral experience.

When considering who to choose, ask yourself the following questions: 

  • Who are the sources of unconditional love in your life
  • What strengths and qualities do these friends embody that would make them good during an end-of-life situation
  • What sorts of backup and support would they need to do the task you have in mind
  • Who has always had your back and can inspire others to do the same
  • Who can support the people who support you

Need help to articulate your wishes? ExSitu is here to help you define and design the end-of-life care experience you want. Sign up now.

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