End of Life Planning: A Complete Guide

“To the well-organized mind, death is but the next great adventure.”
— J.K. Rowling, Harry Potter and the Sorcerer’s Stone

Death and Taxes Are Guaranteed

We often hesitate or balk at End Of Life Planning. It is often when we face potential death that we are motivated to finally ‘get our affairs in order.’ Sometimes, sadly it is too late. Facing a serious illness can be overwhelming, but getting your affairs in order can provide peace of mind for both you and your loved ones. 

We do not like to think about it. Death, dying, leaving, departing, passing over, pushing up daisies, kicking the bucket. You get the idea. I guess we all know deep down that none of us get out of here alive! Right?

Why End of Life Planning is Important

Organising your end of life affairs ensures that your wishes are honoured and can significantly reduce the burden on your family during a challenging time. It involves legal, financial, and personal considerations.

Ensuring that your wishes are respected and that your loved ones are supported is crucial. A part of the transplant work up includes making arrangements in preparations for your passing away.   

By taking the time to organise legal, financial, personal, medical, and emotional matters, you can achieve peace of mind and focus on what truly matters—spending quality time with your loved ones.

I have written a post on palliative care, which discusses how the palliative care team improves the quality of life for patients with serious illnesses. Expanding on that, this post aims to guide you through the steps involved in organising your affairs during this crucial time. 

Remember the transplant team refers you to a social worker and palliative care team. Be ready to ask the social worker or palliative care team to assist you. They are very familiar with all these processes and happy to help you at any time.  

Steps to Getting Your Affairs in Order

1. Legal Documents

Wills and Estate Planning A will is a legal document that outlines how you want your assets distributed after your death. It is essential to update your will to reflect your current wishes and circumstances. If you don’t have a will, now is the time to create one. Consider consulting a solicitor who specialises in wills and estates to ensure everything is in order.

Advance Care Directive (ACD) An Advance Care Directive allows you to specify your preferences for medical treatment if you are unable to communicate them yourself. This document ensures your wishes are respected and can guide your family and healthcare providers in making decisions on your behalf.

An advance care directive can include one or more of the following: 

• the person you would like to be your substitute decision-maker
• details of what is important to you, such as your values, life goals and preferred outcomes
• the treatments and care you would like or would refuse if you have a life-threatening illness or injury

While I was admitted to various hospitals a number of patients required resuscitation. This is traumatic for everyone involved. If you are palliative it is important to have a “not to resuscitate” order in place. I was a room mate of two patients who were repeatedly resuscitated despite being palliative. It was horrendous. Get this paperwork in order. STAT.    

Enduring Power of Attorney (EPA) An Enduring Power of Attorney appoints someone to manage your financial and legal affairs if you become incapacitated. Choose a trusted person to handle these responsibilities and ensure they are aware of your wishes.

2. Financial Affairs

Superannuation and Life Insurance Review your superannuation and life insurance policies to ensure your beneficiaries are up to date. You may also want to consider whether your superannuation fund offers any palliative care support services.

I was able to claim on my Total and Permanent Disability Insurance and access early release of my superannuation fund. This is a complex process but you can manage it yourself and save thousands of dollars. Keep an eye out for a future post about claiming TPD and super yourself and saving money. I saved myself $10,000 doing the paperwork myself rather than paying a solicitor. I will post the steps and tips to do this yourself very soon. Sign up for my newsletter to make sure you do not miss it.

I was also able to access financial and legal advice through my Super account as well as through my Private health Fund insurance.

Bank Accounts and Debts Make a list of your bank accounts, loans, and any other financial obligations. Ensure that your chosen power of attorney or another trusted individual has access to this information and can manage your accounts if necessary.

Passwords Make a list of all your passwords – to everything. This can include banks, subscriptions, computers, mobiles etc. I created a google doc and emailed it to family members. Remember to keep it updated. 

3. Personal Matters

Funeral Arrangements Pre-planning your funeral can relieve your family of the emotional and financial burden. You can specify your preferences for the service, burial or cremation, and other details. You might consider pre-paying for funeral services to alleviate future financial burdens. 

I have created a post on planning your own funeral: Your Funeral Your Way. It includes practical tips and creative ideas on how to personalise your funeral. This post is scheduled for online release from 23 July 2024.

Contact List Make a list of important contacts, including family members, friends, and legal advisors. Share this with family so they have easy access to it.

Organise Documents such as birth certificates, marriage licences, and military records.

Digital Legacy Create a list of online accounts and passwords. Decide what you want to happen to your social media profiles and digital assets. I have already set my socials to archive and nominated my daughters as administrators.

Personal Messages and Legacy Consider writing personal messages or letters to your loved ones. These can be a source of comfort and a way to share your thoughts and feelings. Additionally, you may want to create a legacy project, such as a memory book or video, to leave behind cherished memories.

I wrote a journal which also included messages and letters to family and friends. In the journal, I was able to include quotes and stories, memories and wishes. I found it very comforting. 

4. Medical Information

Medical History and Medication Keep an updated list of your medical history, current medications, and treatments. This information will be crucial for your healthcare team to provide the best possible care. 

Remember to keep a copy on your phone and share it with your family. I found it easier to create a google doc which I could access on any device at any time. It is easy to print or email as needed.

Healthcare Team Contact Information Ensure that your primary physician, palliative care team, and any other healthcare providers have up-to-date contact information. Share this information with your family members or caregivers. See the tip above.

5. Emotional and Spiritual Support

Counselling and Support Groups Palliative care includes emotional and psychological support. Consider seeking counselling or joining support groups for patients and families. These resources can provide comfort and help you navigate this challenging time. 

The transplant team will have resources and contacts to share with you. 

Spiritual Care If spirituality is important to you, discuss your needs with your palliative care team. They can connect you with chaplains or spiritual advisors who can offer support.

A number of chaplains were on rotation to visit me during my hospital admissions. I found their visits comforting and engaging. They never intruded while I was resting or had visitors. Consider trying it, what harm will it do? 

A Global Approach To End Of Life Planning

For those of you who reside outside Australia here is a global perspective. 

Create or Update Your Will

• Australia: Ensure your will is legally binding by having it signed and witnessed by two people who are not beneficiaries. Consult the Australian Government’s guidelines on wills.
• USA: State laws vary, so consult a local attorney. Most states require the will to be signed by the testator and witnessed.
• UK: Similar to Australia, the will must be signed and witnessed by two independent witnesses.
• General Advice: Ensure all your assets, including digital assets, are accounted for in your will.

Establish an Advance Care Directive

• Australia: Each state and territory have different forms and requirements. For example, in Victoria, you can appoint a medical treatment decision-maker.
• USA: Known as a living will, this document specifies your wishes regarding medical treatment if you become unable to communicate.
• UK: Referred to as an Advance Decision, it allows you to refuse certain treatments in the future.
• General Advice: Discuss your wishes with your family and healthcare providers to ensure everyone understands your preferences.

Appoint a Power of Attorney

• Australia: You can appoint a general or enduring power of attorney. The latter remains valid if you lose capacity.
• USA: Durable power of attorney remains in effect if you become incapacitated.
• UK: Lasting Power of Attorney (LPA) covers health and welfare or property and financial affairs.
• General Advice: Choose someone you trust and discuss your wishes in detail with them.

Organise Your Financial Affairs

• Australia: Notify your superannuation fund of your nominated beneficiaries.
• USA: Ensure all accounts have designated beneficiaries and consider setting up a trust if appropriate.
• UK: Review your pension arrangements and ensure all investments and accounts have named beneficiaries.
• General Advice: Keep a detailed list of all accounts, policies, and financial arrangements, and ensure they are easily accessible to your executor.

Document Your Funeral Wishes

• Australia: You can document your wishes in your will or through pre-paid funeral plans.
• USA: Consider pre-planning and paying for your funeral to ease the burden on your family.
• UK: Similar options are available, including pre-paid funeral plans.
• General Advice: Discuss your preferences with your family to ensure your wishes are understood and respected.

Global Resources

• Australia
  • Australian Government: Planning for the End of Life
  • My Aged Care: Advance Care Planning
• USA
  • American Bar Association: Health Care Advance Directives
  • National Institute on Aging: Advance Care Planning
• UK
  • NHS: Advance Decision (Living Will)
  • Citizens Advice: Making a Will

Acceptance 

It is very normal for us to have a fatalistic view on death, illness or injury. We may think that all events in our lives are predetermined and inevitable. At times we may think that we are powerless to change or influence future outcomes. We don’t have to take our future deaths “lying down.” You can be proactive. We can be our own best self advocate. We can hopefully come to some sense of acceptance. 

Blessings and prayers to you and your loved ones as you face challenges head on.

Remember: You are strong. You are precious. You are loved. 

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References

Australian Government. (n.d.). Advance care planning. Retrieved from https://www.health.gov.au/health-topics/palliative-care/advance-care-planning

Legal Services Commission of South Australia. (2023). Wills and estates. Retrieved from https://www.lsc.sa.gov.au/cb_pages/wills_and_estates.php

Palliative Care Australia. (n.d.). What is palliative care? Retrieved from https://palliativecare.org.au/what-is-palliative-care

SuperGuide. (2023). Superannuation and estate planning. Retrieved from https://www.superguide.com.au/superannuation-basics/superannuation-and-estate-planning

Australian Government. (n.d.). Australian Organ Donor Register. Retrieved from https://www.servicesaustralia.gov.au/australian-organ-donor-register