VIC EDITION

So you've had a spot of bad news. Whether an earth-shattering diagnosis has rained on your future plans in a lightning bolt of horridness, or you've been puttering along living with some ridiculous and nonsensical illness that has finally reached the 'comfort-measures only' moment - however it's happened, you're being courageous enough to face it in the here and now, and that's bloody amazing. Or perhaps you're realising your beloved one is reaching that point, and you're thinking about how best to help them. WELCOME TO THIS USEFUL POST!

The Easy Part - Planning a funeral

That sounds a little insane right? Planning the funeral is the easy bit? Honestly, yes and that is because either:

a) If you're the one dying, you're not going to be there, so it's all abstract and a spot of fun, especially if perhaps someone else is chipping in, or you have funds

b) If you're planning a funeral ahead of someone dying, as hard as it is to come at, you've got a whole host of resources, time to plan, and if you're working with a good funeral director plenty of support to slowly figure out what it is they and you want.

So while we definitely recommend making a good headstart on all this, and even better getting advance care plans and the like in order (more on that below) - to be honest this is on the easier end of the spectrum when it comes to toddling off this mortal coil. We will cover a little more on this at the end of this article.

The Hard Part - The Actually Dying Bit

Dying is hard work - aside from all the blasted medical appointments, starting to have more bad days than good, dealing with all the huge feels you might be having, and worries about your people and your legacy - even with that shopping list of woe, you still have to think about the actually dying bit, and that's a lot.

We’re huge advocates for Voluntary Assisted Dying (VAD) and for people living with a terminal illness to have the peace of mind and agency to have a level over control over the manner and time of their death. There’s nothing wrong with having that on the shelf, even if someone doesn’t access it. We’ll cover this in detail below.

Things to consider:

Where do you want to die?

Most people are going to say HOME, and it seems people say that even if they don't really believe it can happen. Which is a bummer, because dying at home can be a really lovely thing, but it definitely takes some careful consideration and planning.

Here are some major things to stroke your metaphorical beard over when it comes to home death:

Do you have a team of folks to care for you?

One of the hardest things we see is when there is one person doing all or most of the care for someone who's dying. Palliative Care is limited to short visits (more on that below) and as the person gets nearer to their dying the care load increases exponentially...the level of physical labour increases, the nights get longer and longer, and carer exhaustion builds.

To be honest, for a well supported home death there needs to be a team around a dying person, and their primary carer. People to take a shift at night on occasion so the carer can get some sleep. People to help round the house. People to sit vigil. Ideally a community or family of 4-5 people to assist is really what's needed as dying gets nearer.

Are you hooked into Palliative Care and have you thought about how you might like to go out?

A lot of people carry the misconception that Palliative Care is something you access in the few days before death. Although it's true that in-home palliative care is awesome at this time for drawing up meds, getting the dying person on a pump driver to deliver those meds as needed, and supporting the primary carer with nursing care, Palliative Care can be a huge help way before that time comes.

Palliative Care - The Downlow

There are a number of studies that show that the earlier people access palliative care after receiving a terminal diagnosis, the longer they tend to live and the better outcomes with regard to pain management, dying at home and so on.

Palliative Care Victoria https://www.pallcarevic.asn.au/ have a terrific website and also a handy tool for searching services in your area.

There are two major types of Palliative Care – let’s do a quick lil’ breakdown.

Community-Based Palliative Care

This is Pal care delivered in a home setting, and can be accessed by contacting the organisations directly, without needing a GP referral. Perfect for people wanting to do family-led, home based deathcare (although it’s still a great idea to have a regular GP locked in). Community based care can assist with:

• In-home nursing for pain management and comfort

• allied health

• respite

• equipment

• medications

• access to medical review and assessment

In-Patient Palliative Care

This is accessed through GP or medical practitioner referral and happens in hospitals, and other in-patient care settings. Sometimes people who are mostly at home will access this type when they need assistance with complex symptoms or pain management.

Dying in an inpatient setting

When imagining how you might like to exit, particularly if you’re wanting to die at home, it’s a good idea to sit with the fact that sometimes you might end up in a care setting in your last days. Even if you do have a jolly great gang of willing carers at home, all sorts of whacky and difficult scenarios can pop up at end-of-life. So it’s a good idea to imagine this, whether it’s your preferred way or a plan B, and get some preferences in place.

Depending on your particular illness and your location, there’ll be some well worn paths for inpatient palliative care, such as The Olivia Newton John Centre at the Austin Hospital (If they mention ward 8 south – that’s the pal care ward that not many folks leave once they arrive), the Peter Macallum Cancer Centre (Ward 1A seems to be the place folks spend their last dats), as well as some hospices like Caritas Christi, Wantirna and palliative care wards in major hospitals).

You can do some research and call around if you can bear it, or just read up on the options and let your people know your preferences. It is important to consider where you might end up particularly if you decide to access VAD or even have it on the shelf as an option.

Advance Care Directives n’ Wills n’ Stuff

It’s a great idea for everyone to consider the documents below, but even more so if you’re living with the crappy news of a life-limiting diagnosis. The suite of advance care planning docs is:

• Your medical treatment decision maker

• Advance care directive

• Enduring power of attorney

You can access all the forms in a handy booklet published by the Office of the Public Advocate.

You probably also want to get your will sorted, BORING I know, but really important as you know. If you haven’t done it yet, let this be the kick in the pants you require!

There’s tons of ways to do it – you can find out about cheap and free ways on this site by Services Victoria (eww I know!)

There are a number of handy guides that help people step through their entire suite of end-of-life wishes, and our favourite is the Bottom Drawer Book.

Author Lisa Herbert has thought of everything and this book forms a repository of all your wishes as well as offering tons of solid information. Lisa also maintains a fascinating blog on death in Australia.

Death Doulas and End of Life Companions

If you’re the super organised type who loves a spot of personal admin, then this might be a terrific last project for you, but many people find it overwhelming, boring and as the endless medical appointments stack up, and the bad days might outweigh the good, it’s all ending up in the too-hard basket.

This is where a death doula/end of life companion could really help. These legends take care of everything from the practical aspects of assisting during someone’s active dying time, pet care, domestic help, sitting vigil and so on, to the admin aspects described above, facilitating conversations, going on fact-finding missions and also helping the dying person with their emotional journey.

Some wholistic funeral companies have doulas on their staff and base their model on doula-led care ( you can read about our doula service and also see Liferites funerals in NSW.

You can also explore other offerings via the Online Doula Directory

Voluntary Assisted Dying (VAD)

Voluntary Assisted Dying legislation and procedures offer people with a terminal illness the opportunity to have some agency around their dying time, and to offer an effective, gentle and safe means of exiting life when their quality of life reduces to the point that they no longer want to go on living the journey of dying.

There are strict conditions around eligibility – I highly recommend reading this excellent overview.

One of the most difficult aspects of the VAD process is that in Victoria your caregivers are not legally allowed to discuss it or raise it with a terminally ill person unless that person initiates the conversation. Many people are shocked to discover that this is an option at all, and feel confused that their trusted caregivers haven’t mentioned it – but currently this is enshrined in the VAD legislation.

We have a few hot tips for anyone who might be considering VAD – and to be clear, as we’re not medical professionals, we’re able to talk freely about this!

1. Don’t wait till you are deathly ill to begin the process of acquiring VAD

Aside from the criteria that defines who can access VAD (essentially people with a diagnosis of less than 6 months to live, or 12 months in the case of neurodegenerative diseases such as MND), many people are unsure about when they should go through getting approved for VAD, and this combined with ‘eww actual real talk about my dying? No thank you, let’s just talk about the party after I go please’ means a lot of people wait way too long to get the ball rolling.

The truth is it takes weeks to get VAD approved and for all the meetings to happen and the permits to be signed. There are three meetings across a 10 day period, then the permit needs to be issued, and finally the pharmacy needs to dispense and give an orientation around how to use the substance.

Unfortunately many people who are on the fence about VAD, or who don’t want to think about it, end up in a situation where they rapidly deteriorate, or begin to experience intolerable suffering close to end of life and they are unable to access the VAD in time. This can be incredibly distressing for the dying person and their people.

It’s absolutely OK to apply for VAD and then never use it. This works well for people who are uncertain about whether they want or need it, and many people find just having the option available helps them to feel more settled and in control, lessening anxiety and sometimes even reducing pain due to feeling a bit less ‘all-at-sea’.

2. Communicate clearly about your situation and consider the type of permit you’ll need

You might think this would all be taken care of by the care team and your doctor, but in truth it is a good idea to take stock of your own situation and think about how your disease typically progresses.

There are two types of permit in Victoria:

Self-Administered

This is the default permit, and is what the system seems to prefer. This is to maintain the person’s autonomy throughout the process and also doesn’t require another person to have the responsibility of ending a life. The method is to drink the substance.

This is a great option for people who can swallow well, have decent mobility in hand/eye coordination and who are not prone to vomiting. If you have issues with any of the above, or your condition is likely to progress to a point where you have problems with these key physical areas, then it is extremely important that you discuss this with the VAD team and your caregiver, and we’d suggest looking at the practitioner-administered permit. We cannot highlight enough how important it is to take this into consideration before applying for the permit, as it can take weeks to change it. Keep in mind that nausea and vomiting is quite common in the latter stages of many terminal illnesses.

Practitioner-Administered

This option means that the substance is administered via injection by a medical practitioner trained in VAD administration. This means someone else is going to have a hand in your dying, and that is something that you’ll need to consider.

If you have any issues with swallowing, coordination or nausea and vomiting, or are likely to encounter these issues, then it’s best to ask for this permit from the get-go.

3. Consider where you would like to die before applying for the permit

Many people want to die at home when using VAD, but sometimes they may be in a lengthy hospital stay situation before they apply for the permit. It is important to note that with the practitioner administered permit, some doctors will only administer in a hospital setting.

Some hospices and hospitals and even palliative care providers are religious-based and will not allow VAD on their premises, nor will they offer any direct care around VAD, so it is important to take this into consideration when planning the where of your VAD.

If you wanted to take VAD at a holiday house or some location away from home, you should definitely chat to the VAD navigation team about that so they can procure a medical professional to do your verification of death – without it you could end up at the coroner’s, which is a spot of bother for your family.

Funeral Planning, Pre-Paid Funerals, Living Wakes and all that jazz

Mel chose her own coffin and we made it for her!

As we said earlier, the planning your funeral bit can actually feel quite fun, because it feels somewhat abstract and as it happens you’re not going to be there anyway.

If you’re up to the task picking music and photos can be a cathartic and really lovely experience (and on the plus side you get to make sure no photos you hate get a public airing).

Another thing to know is that when someone dies, that is prime territory for family drama, in-fighting, and other argy bargy. If you have gotten this far in thinking about your own departure from life, then you’re enough of a legend to make a few things clearly known to the mob and help reduce the chance of any isshews after you fly out of your earth-suit.

Make your wishes known

Just bang out a dot point list of your main wants and any no-nos and send it to MORE THAN ONE PERSON. A group email is a good way to do this, even if you say ‘no need to answer, but tuck this away.’

Do consider your wishes and how viable they are though. If you want to be buried at Springvale, have you clocked the prices there? You’ll hopefully have the means to cover the 15k price tag just for the plot in that case!

We have had someone want a sea burial, which is a very cool, actually-possible-but-extremely-expensive-and-subject-to-many-conditions option. This person had never mentioned it to anyone aside from in her will though, and her friends had a really difficult time of it trying to meet her wishes.

On the will front – ideally don’t put your funeral wishes just in the will. Many times people won’t actually look at the will till after the funeral so as not to appear vulgar, and then they may be instore for a whoopsie – you wanted to be scattered over Disneyland, and also, you didn’t want to be cremated.

All good reasons to send that email out to a few people as well as pop your will and wishes somewhere easy to find! Why do people put their will in a shoebox up in the most crammed cupboard possible? Don’t be that guy!

What about pre-paid funerals?

You’d think that being Funeral Directors we’d be all behind a pre-paid funeral. In truth, they are a lot of admin, and we don’t like to bank on people’s future deaths in some managed fund thing really.

There are times when a pre-paid funeral bond can be a really great idea – you can lock in a price, pay into the fund to cover it, and that money isn’t taxed or counted by Centrelink. All sensible things if you are dying very slowly, or presently not dying at all. We do help folks with pre-paid funerals in this case, even though we’re not super pumped about the admin side truth be told!

If you’re dying kinda fast, and you likely have less than a couple of years to live, then we always wonder if a pre-paid funeral is really worth the form-filling and general boring life-admin for very little savings for you.

If you are dying at a rate of knots, the best thing you can do is probably (depending on your own circumstance and the level of possible argy-bargy amongst your people) to put cash away for the funeral based on a quote you get from your fave funeral company, and give someone access to it, or put the details of the bank and account in your funeral plan. Don’t put it in a term deposit or anything like that, just pop it aside in a regular account so it can be accessed with an invoice from the funeral company when the time comes.

Of course, if you love a spot of admin, getting everything super locked in, and having a neat and tidy plan at the end, then you might still think a funeral bond is the way!

We use Forester’s Financial for our bonds, but there are other organisations out there.

Living Wakes

Ursula had an incredible living wake at her home

Many people are fascinated by the concept of a living wake, where you essentially attend a wake and ceremony in your honour - it is a fantastic idea and can be absolutely wonderful, but there is one huge, limiting and over-arching factor that we see time and again.

What is it?

People put it off because they feel well, and then before they know it, they are too unwell to even consider it.

I know, that sounds crappy, and it is - the reason is that planning this kind of party means accepting and acknowledging that this thing you’re living with, whatever it is, is going to take you out. It requires a deep sense of knowing and a place of acceptance.

Why would you have a party to say goodbye if you harbour hopes, secret or otherwise that maybe you’re going to get better or defeat this bastard of a thing?

And we totally get it, but when we have worked with a dying person on this kind of event it has always been absolutely magnificent.

So that’s where we think this really a hard ball in a hard basket, but if you want to do it, we got you!

We’re keen to hear your thoughts and answer any questions you have about this article, so feel free to drop us a line using the form below.

Oh Buggar, I’m Dying! Now what?

**VIC EDITION**