End-Of-Life Planning and Action Plan – It’s More Than a Will!

Much of my work as an end-of-life coach involves supporting people to plan for their death. Sometimes people have already been diagnosed with a life-limiting illness, and sometimes people are motivated to plan ahead. Although it is the case that some know they are going to die from a diagnosed illness or disease, for plenty of people that’s not the case. Just watch the news!

The Importance of End-of-Life Planning for Everyone

This is when a sudden, unexpected death happens, and no-one is prepared for it. For example, coronary heart disease and cerebrovascular disease both sit in the top five causes of death in Australia for both men and women. While it’s most shocking to contemplate, as a result of these diseases, sufferers may literally drop dead from a cardiac arrest or a stroke. As well, fatal accidents happen; by definition of an ‘accident’, they are totally unexpected. Life is smooth one moment, and then something goes badly wrong - for example: road trauma, domestic violence, workplace accidents, homicide and so on.

Key Benefits of End-of-Life Planning for You and Your Loved Ones

So, planning is a really important thing to do for everyone, regardless of their age or known state of health:

• It means that funerals and memorials can align with what you wanted. Some people have very clear ideas about how that should unfold, others not at all. Either way a plan will make that clear, one way or the other.
• The burden placed on family and loved ones to deal with all of the issues and arrangements that are required after death, can be lessened if plans are already in place. Everyone can then be confident that the decisions they may need to make, align with what you would have wanted.
• The days and weeks after a death are always difficult for loved ones. They are unable to think clearly. This means that they can be taken advantage of by unscrupulous funeral operators. They will need their own time to process the death. Most importantly, they are less likely to live with regret, because they have followed your plan or instructions. Your planning will remove the risk of wrong choices or decisions.
• Families, especially birth families, can be complex. This is never more so than when a death occurs and matters of inheritance, who makes what decisions, who was closest to the person and so on, can rear their ugly heads. Although plans won’t prevent interpersonal dynamics playing out, it is easier to assert what should be done if you are implementing a plan, especially a plan that was shared and discussed in advance. That alone can end up taking the sting out of challenging behaviours.
• Many of us have no idea what’s involved, how much stuff we have that has to be dealt with, and what things we could have planned for that would really matter to those left behind. Undertaking a planning process can be very enlightening.

Questions You Might Not Have Considered in End-of-Life Planning

A search on the Internet will provide endless guides and templates to use. I strongly encourage using one to keep you focused, and that importantly will introduce you to many ideas you may not have thought about. For example:

• Who knows the combination to my safe?
• Who will let people know that are not known to my family and close friends?
• Who will find and possibly read my old love letters?
• Who might find out about some of my more personal/sensitive secrets and belongings?
• How will Mary know I want her to have the elephant sculpture?
• How will people be able to access my phone and computer without the password?

End-of-Life Planning Resources and Guides

The following link is to an end-of-life planning checklist and worksheet that I often recommend. It has been produced by the Legal Services Commission South Australia. It is comprehensive and provides space for recording information.

https://lsc.sa.gov.au/resources/EndofLifePlanning.pdf

One of my favourite resources is the Bottom Drawer Book – the After-death Action Plan by Lisa Herbert. This playfully illustrated guide is more conversational and is an excellent personal resource as well as a way of introducing the idea of planning for death to a group of friends or family. I suggest buying a number of copies as gifts. It can be ordered directly from the website which is https://thebottomdrawerbook.com.au/

Whichever resource you access will likely provide you with similar information. I don’t want to re-invent the wheel, but here are my thoughts on some of the things that you may want to consider.

Developing an Advance Care Directive: What You Need to Know

1.     When it comes to developing an advance care directive (ACD), there are often different forms available depending on your location. Although all forms will generally be acceptable, some will be structured in ways that provide more nuance to your directive. For instance, in which situations you want it to be followed and in which you don’t. One easy to complete form can be downloaded from Dying with Dignity Victoria (DWDV) under the Our Service tab https://www.dwdv.org.au/our-services/advance-care-directives/

2.     ACDs are often written with physical illness in mind e.g. you are dying from cancer or end-stage organ failure. Few I have seen are specific about the person’s wishes if they are diagnosed with dementia. I’ll often discuss with my clients about what they would want to happen in that instance, and at what point for instance they may wish foods and fluids to be withdrawn. How these directives are worded to ensure your wishes are followed, is critical. The ACD template from DWDV has been designed to capture your wishes in the case of dementia.

Sharing Your End-of-Life Wishes with Family and Friends

3.     It may be useful to discuss your thoughts and wishes with your family and friends and perhaps let them read a draft. There may be some useful input and you can amend your draft before the document is finalised. It also gives you a good opportunity to socialise your wishes and choices with those people, understand and discuss any concerns they may have, and give you a chance to help them to understand why you have made the choices you have. There are less likely to be issues and conflict at the bedside if those matters are known and understood in advance.

Choosing Your Medical Treatment Decision Maker

4.     Choosing a medical treatment decision maker (MTDM) is not always straightforward. Generally, it will be you partner/spouse, adult child or sibling. Sometimes it’s a good friend. It is important to reflect on who you should ask to fulfil that role. Not everyone can make decisions easily, especially such consequential ones. Although perhaps an obvious choice, a partner or adult child may not want that responsibility and may prefer that you choose someone more independent. The main thing is to discuss this with your family and loved ones, seek input about how each person feels and how important it is for them. Respect people’s concerns if they are raised and consider your options. A partner for instance may feel distressed that you have asked someone else. Communication and transparent discussion is critical. Once you have made a decision and that person (there may be more than one) has agreed, it is important to let your inner circle know. You can document in your instrument of appointment or ACD that you expect them to consult with nominated individuals, and consider their views, before making a decision. This reinforces to all that you are entrusting your nominated MTDM to make a decision that aligns with your wishes, and that you want people to support them decisions. This is not an easy role for anyone to fulfil.

Safekeeping and Sharing Your End-of-Life Documents

5.     Once all your end-of-life documentation (i.e. will, enduring power of attorney, ACD, MTDM) have been completed, signed and witnessed, it is important to consider who should have copies of what. Ideally copies made should be certified as true copies, to avoid any concerns about validity. Originals may be kept in secure storage, which is known to your family and loved ones. Copies of your ACD and MTDM should be provided to your General Practitioner and other relevant treating physicians/surgeons. You should take a copy of them into hospital for elective admissions and have them included in your patient notes. You can upload them onto your MyGov application so that emergency services can access them. Keep a list of who has what, so that if any are updated you can ensure that everyone’s copy is replaced. These documents cannot be amended, they must be re-written if changes are required. The only exception is updating contact details for your MTDM.

Swedish Death Cleaning: Organising Your Possessions in Advance

6.     Some of you will have read the book or watched the television series called ‘the gentle art of Swedish death cleaning’. If not I recommend you order a copy of the book. It talks about a process of cleaning up your home and personal possessions well in advance of your death. It can be a daunting and time-consuming task to empty a lifetime of possessions that belonged to your loved one, especially if there’s a time imperative around the end of a lease or sale of a home. It can be challenging knowing what to keep or throw away or give away. If you give items to people whilst you are alive, you have the opportunity to share stories of those belongings and explain why you want the person to have them. It also can be quite cathartic to sift through a lifetime of possessions, rekindle memories and free up things that may even have held you back. It can be rewarding to undertake this task with family and loved ones, it may generate memories that they will cherish after your death.

Managing Your Belongings: What to Do With Furniture, Hobbies and Keepsakes

7.     It’s not just furniture and large household items to consider. What about books, music collections, hobby materials, art works, clothing, accessories? If you are a collector e.g. you collect hats, shoes or scarfs, rare books, lithographs and so on, consider arranging for them to be taken to your funeral venue and for the mourners to be invited to select something to take away. If you were a hobbyist, perhaps a school or social club could be offered your items.

Recording a Message for Your Funeral

8.     You may wish to make a video to be played at your funeral. It can be reassuring for mourners to see that you were at peace (if that is the case). For those that like having the last word, this gives you a golden opportunity and is bound to lighten the mood, even just a little.

Handling Subscriptions and Recurring Payments after Death

9.     We make lots of decisions in life that we don’t share, especially if we live alone. Subscriptions to magazines or streaming services, donations to charity or sponsoring a child. We might have gym memberships, frequent flyer program memberships, recurring home lottery tickets and so on. It is useful to record all of these on your plan so that those with a direct debit are no longer charged for longer than necessary.

Addressing Sensitive Matters in Your End-of-Life Plan

10.     Some of us have secrets or matters of a sensitive/sexual nature that we may not want widely known. A collection of pornography perhaps, sex toys and so on. You may want to dispose of these, or if not, ensure they are in a secure place, and leave instructions with someone you trust to collect and dispose of them after your death. Maybe locked in a suitcase with that person’s name on it, instructing that they should be contacted to take it away. Leave them with a key or the combination to the lock.

Caring for Your Pets After You’re Gone

11.     The welfare of your pets is also important. Maybe agree on who would be able and willing to re-home them. Contact animal welfare agencies to discuss if they could assist. This of course includes pets such as fish, birds, reptiles etc. Not everyone will know how to care for these pets and providing clear instructions may be helpful.

Managing Your Digital Legacy: Emails, Photos, and Social Media

12.     Digital legacy management can be onerous. What is to become of photos, videos and documents stored on your computer or on external drives. Who knows passwords to access them? What about email messages? Texts and voicemails on your phone. Social media accounts such as Facebook. What about apps including dating apps. You may not wish your profile information and photos to be visible to your loved ones. Speak to you lawyer about creating a digital legacy plan to manage all of your digital assets after your death. A useful guide can be found at https://accan.org.au/ACCAN%20Digital%20Legacy%20Brochure%20-%20Web%20Compressed.pdf

Preserving Your Legacy with the Evaheld Legacy Vault

13.     Another useful resource is called the Evaheld legacy vault. This allows you to preserve your voice, story and family legacy in the Evaheld legacy vault. This service is endorsed by state and territory governments in Australia. You can include personal memoirs, future birthday messages, family history podcasts and personalised video messages for children, grandchildren and unborn grandchildren. Create a free account at https://www.evaheld.com/

Take Control of Your End-of-Life Plan Today

I hope that this information will help you realise just how much there is to plan, and how important it is for you and for those you leave behind. It’s never too early to plan, especially completing an ACD and appointing your MTDM. Most of us like to have control over our life. It’s just as important to have control over our death, and our legacy.