End of Life - Resources

RESOURCES

NDAN has some wonderful resources to guide you through the end-of-life process, advanced care planning, family–lead funerals, grief and documents and resources, including the following:

ADVANCE CARE PLANNING (ACP)

Advance care planning is about people taking control of their health care wishes now and in the future. Advance care planning involves thinking about your end of life. Long before the diagnosis of a life limiting or terminal condition, discussing your care wishes with your family and close friends is encouraged. Preferably, documenting what types of health care you may or may not wish to receive if you become seriously ill and/or are unable to speak for yourself is the best way to record your wishes for the future.

These conversations are especially relevant near the end of life. It makes the space for your specific treatment wishes as well as your goals, values and beliefs to be known and respected by health providers and those closest to you.
Ideally advance care planning involves:
1. Appointing a person, known as a substitute decision maker, who can make healthcare decisions for you if you are too unwell to do this for yourself.
2. Writing your wishes down in an advance care directive, sometimes known as a “living will”.
3. Sharing your wishes with a trusted person or person/s.
The most commonly considered plan is the Advance Care Directive which is a medical plan which documents the types of health care you may or may not wish to receive if you become seriously ill and/or are unable to speak for yourself. An Advance Care Directive formalises and, in some instances, legalises your Advance Care Plan. The application of the plans varies across States and Territories and you can best inform yourself by reviewing these websites: https://www.health.gov.au/health-topics/palliative-care/planning-your-palliativecare/advance-care-directive
https://www.health.gov.au/health-topics/palliative-care/planning-your-palliativecare/advance-care-planning
https://www.advancecareplanning.org.au/ (go to your State or Territory)

When completing your plan, some of the key issues that may need to be considered at end of life include:

▪ Emergency treatment

▪ Types of treatment when you can no longer talk for yourself www.ndan.com contact@ndan.com.au

Who you want to speak for you if you cannot
How you want to be treated emotionally and physically
Who you want present and who you do not
Any religious requests ▪ Access to medication and pain control
Where you would like death to occur i.e. home, hospital etc.
Access to fresh air, sunshine and other atmospheric factors
Organ and tissue donation
Voluntary Assisted Dying

The definitions and scope of Advance Care Planning can be further expanded to include the social, emotional and spiritual wishes, funeral planning and also living wills or legacy documents – that is, the things you want to leave behind for people that do not form a part of your Will or estate such as family photo albums, recipes and letters.

Advance Care Plan – Social, Emotional and Spiritual (SES)
An Advance Care Plan documents the types of social, emotional and spiritual care you may or may not wish to receive if you become seriously ill and/or unable to speak for yourself.

Advance Care Plan – Funeral Care Planning
A Funeral Care Plan is a document that is prepared to outline your funeral wishes and instructions. Melissa is an independent funeral director and funeral celebrant who also works with www.picaluna.com and is happy to help you plan the funeral. Costs are transparent- see cost guides on the website. Call Melissa on M 0425 213 338 to discuss.

Advance Care Plan – Legacy Documents

Letters to family members etc. – letters that you may wish to leave for loved ones after you have died.
A written record of wishes for memorabilia, heirloom gifts, emotional items such as treasured belongings

One of the main purposes of creating these documents is so that they are truly aligned to your authentic self in order to be valued. ndan.com

Additional Resources:
Discussion starters

Digital End of Life Plan:

Touchstone Lifecare

The Groundswell Project Big List

Website on law around end of life

This next topic on grief has been created by NDAN:

Grief, Bereavement and Mourning

Grief is the intense and inner sorrow that results from losing someone or something significant. Grief is something each person feels within themselves and is unique to the individual and there are many things that can impact the way our grief is expressed, for example; our culture, age, community, family beliefs and experiences, its cause to name a few.
Bereavement is the period of intense loss felt when a loved one dies. Grief derives from a word meaning ‘to rob’ (as in ‘I have been robbed’), and links to feelings of being violated. Bereavement can often last several years and may be disregarded, underacknowledged and under-supported.
Mourning is collective and/or publicly-expressed grief, and the word ‘mourning’ comes from the Greek ‘to cut’. Mourning is a verb (action word) that relates to what steps we take to get us through, or over, the bridge of grief. For example: attending a funeral, being able to talk about our grief, crying, being understood and heard – mourning is likened to the externalisation of our inner grief.

The experiences of grief, bereavement and mourning come to us all at some point, and often those around us provide support and teach us how to express these states. Different traditions and cultures around the world may express grief, bereavement and mourning differently, and it is common – particularly in the West or in western cultures for us to downplay or under-express these emotions.

There are many great resources we can draw from, the first of which is – often – our family, friends, and communities.
Other resources may include a counsellor or compassionate listener, as well as the resources provided by relevant organisations including these listed here below:
• Australian Centre for Grief and Bereavement
• Resources for the Bereaved
• Bereavement Support – how other people can help
www.ndan.com email: contact@ndan.com.au
Bereavement-How other people can help (PDF)
• Compassionate Friends – https://www.compassionatefriends.org/
• Griefline – online support and resources https://griefline.org.au/
• Guiding Light – https://rednosegriefandloss.org.au/
• Lifeline – https://www.lifeline.org.au/get-help/topics/loss-grief
• Refuge in Grief https://refugeingrief.com/
• How to help a grieving friend https://refugeingrief.com/?s=grieving+friend+essay
• Sands – https://www.sands.org.au/
• What’s Your Grief (dual process model) – https://whatsyourgrief.com/dualprocess-model-of-grief/

FAMILY LED FUNERALS

There is no legal requirement for a funeral director to be involved in the funeral of someone you love. We can assist and facilitate this journey so that you are in total control of the funerary proceedings – as much or a little as you want to be.
If you are asking any of the following questions, you might be interested in a Family Led Funeral:

Do we need to have a funeral director?
Can we make our own coffin?
Can we keep our person’s body at home for a while?
Can we wash or dress our person’s body?
Can we dig the grave ourselves?
Can we decorate the coffin?
Can we use flowers from the garden?
Can anyone conduct the ceremony?
Do we have to have a funeral?

What is a Family* Lead Funeral?
A family led funeral is a term used to describe a funeral practice where the person who has died is cared for by the family and community from the moment of death, through to the delivery of the funeral ceremony, and up to the disposal of the body. This encompasses everything from a complete do-it-yourself approach (where there is no, or minimal, involvement from funeral professionals) to a blended approach where the care and organisation are conducted as a shared arrangement between the family and their chosen professionals. This is distinct from the contemporary or current western process of funeral and ceremony where families are ‘directed’ entirely by a funeral business.

In a family led funeral, the family directs if and where they want the support of a funeral business. In some respects, a family-led funeral is not a new concept as only a few decades ago this was the norm. However within the current way of death, this reclamation of the dead by the family is considered ‘unusual’ or ‘new’.

For a family who chooses a completely DIY approach, the family retains not only control of their deceased, providing the home-based death care for them (see our info sheet on Home Based Death Care), but also takes an instrumental role in the organising of any ritual or ceremony, and responsibility for ensuring that paperwork is lodged. Effectively they LEAD the funeral. The family set the pace and decide on what their farewell will look like. They become the designers of what is a very personal and meaningful time.

However, there are many steps between death and the disposal of a body. From collecting a body from the place of death, to lodging the requisite paperwork, to caring www.ndan.com contact@ndan.com.au for a body at home, to selecting or building your coffin, to encoffining and transportation to a cemetery or crematory, and up to the moment of disposal there is a myriad of decisions that need to be made.

The point is that a family or community CAN do all of these things (in most states) or CHOOSE a range of duties they would like to manage themselves. There is an increasing number of funeral companies, end of life doulas and independent funeral celebrants who offer support for family led funerals.

For a family choosing to do a family-led funeral, the level of involvement from professional death workers in deciding, carrying out, organising and implementing anything outlined in the stages above, needs to be very clearly communicated and a plan of action set in place. Just as it takes a village to raise a child -you will need a supportive and well-organised team to undertake a home funeral if you intend to have no outside assistance.

Below we outline what the general steps are in a Family Lead Funeral. The family and/or community of the deceased chooses to take on the responsibility of as many of these as they wish.

Between Death and Disposal… what needs to be done? The most important starting point is to ascertain… Are they really dead? This might seem obvious but what happens next depends on whether the death was expected or not. The steps involved are:

Confirmation of death by a medical professional.
Documentation (different names in different states) confirming that the person is dead. This is required before a body can be moved. Assuming a coronial inquest is not necessary…
If the person has died in a hospital or care facility, their body can be transported to a family home or the home of a nominated community member or to a mortuary.
Body care happens in the time between death and ceremony. This can be over several days and can occur wherever the body has been taken.
Body disposal method is confirmed (burial plot is purchased, cremation is booked)
Death needs to be registered with the State Registry of Births Deaths and Marriages www.ndan.com contact@ndan.com.au
Permission for disposal needs to be obtained on the State based documents required. In the case of cremation, this generally requires a referee signature from a second independent doctor.
IF a ceremony is chosen, the funeral ceremony or ‘event’ is arranged. Like various other events, there are many moving components but unlike others, a funeral ceremony is usually organised in a short space of time. The ceremony can be large or small, formal or informal, simple or a massive blow out. It can be anywhere you are permitted to take the body of the deceased – in a church, a pub, or in your backyard and conducted by yourself, a celebrant or by your next-door neighbour.
Alternatively, you could choose to have no ceremony at all. Whichever you choose there are usually many things to consider. See our info sheet on funeral planning for a checklist of some components for a ceremony. NB. In Australia, it is considered that a ‘funeral’ is a ceremony where the body of the deceased is present.
If the body of the deceased is not present at the ceremony, this is referred to as a ‘memorial’.
The body is placed into a coffin, “encoffining”, for transportation to the funeral ceremony.
If there is no ceremony or it does not occur at the place of disposal, the body will need to be transported to the cemetery or crematorium.
Disposal of the body: (see our info sheets on Natural Burial and Shrouded Cremation)

i. BURIAL – the coffin/shroud is lowered into the earth and backfilled.
ii. CREMATION – the coffin/shroud is pushed into a retort. Cremains/Ashes are collected, ground down and put into a container such as an urn before being collected. It is worth noting that the funeral process for burial and cremation are the same up until the point of disposal.

If you would like to know more about Family Lead Funerals, below is a list of articles, groups and organisations as a resource for you to find answers to your questions. We also have a wide range of skills and experience among our member base, so please take a moment to peruse them. ndan.com.au
contact@ndan.com.au

LINKS: FAMILY LEAD FUNERALS
FURTHER READING:
1. Choice. Do you need a funeral director? Investigation into the funeral industry, Choice looks at DIY funerals and cremation.
2. Choice. The future of funerals
3. Natural Death Movement
4. Natural Burial
5. Home Funerals

*Please note that NDAN uses the term ‘Family’ to indicate kinship bonds and relationships of mutual love and support. These relationships may or may not be biological or legally recognised. However, if your family sits outside of the nuclear unit, it is imperative that your advanced care directive and funeral wishes be clearly communicated so that your values are upheld.