What to expect when a loved one wants to die at home

If a person decides to die at home, the first thing to do is to discuss the matter with family, carers, the attending GP and any broader palliative care team. Are family members, in particular, fully prepared to take on the care tasks – physically and emotionally – that dying at home will engender?

It is very important that family carers understand how symptoms may progress and the effects those changes may have on the person’s abilities, awareness and care needs. The GP and palliative care professionals will be able to advise on what external supports are available – nurses making home-visits, for example – and assist with putting them in place.

To make sure that the person’s wishes are wholly respected throughout out the dying process, it is essential that “death at home” documents are in place. These can be provided by the attending GP.

One such document, for instance, is a letter for the ambulance service, which explains that the person’s death is fully expected, and resuscitation should not be attempted.

Two other documents can be very important: an advance care plan, and an advance care directive.

An advance care plan outlines choices for medical treatments, such as resuscitation, should the dying person lose the ability to communicate. Advance care plans are not legally binding but help ensure culturally and personally appropriate care, and spare family members the anguish of having to make critical decisions and guessing the loved one’s intentions.

For more information on advanced care planning, see here.

An advance care directive is a formal and binding version of your advance care plan. They are often called a “living will”. These can be made by a person over 18 and who has decision-making capacity. Younger people can also set out a formal directive, although there are more stringent requirements for who must witness it.

All advance care directive forms valid in Victoria can be found here.

It is a good idea for the affected person to discuss the advance care directive with their doctor. Health professionals and family members must follow a valid directive. They cannot override it. (The dying person, however, can revoke it at any time, using the form found here.)

Other documents that might be useful in preparation for a death at home include:

A will. This has nothing to do with how a person wishes to be treated in the final period of life, but can bring peace of mind to the person and family.

Enduring power of attorney. This is a legal document that confers responsibility for making legal and financial decisions on a person’s behalf, should that person lose the ability to do so themselves. This document can be prepared by any lawyer, or done at home after downloading a kit from the Victorian State Trustees website.

A person may also – or alternatively – choose to give a trusted friend or family member enduring power of guardianship. This is an agreement that transfers responsibility for decisions about palliative care, other medical treatments, living arrangements and so forth. It also authorises the person to advocate for support services. More information is available here.

No matter how expected, the death of a loved one is a heavy blow, and it’s important to recognise that family, friends and carers may not be able to make calm and rational decisions in the immediate aftermath.

It’s a good idea, therefore, to have a written plan for what to do in the hours and days after a person’s passing.

Make sure contact numbers for the GP or palliative care team are easy to find. One of these will need to visit, confirm the death, and issue a death certificate. (If the death was expected, this is a straightforward process.)

Discuss and agree on next steps. This might include making contact with a funeral director and arranging for the collection of the body. Alternatively, if a friend or family member is to look after funeral arrangements, there are steps to go through and forms to fill out – even if there is to be no formal ceremony at all. More information can be found here.

Before the passing occurs, make sure there is a written plan in place for any personal, cultural or religious grief rituals, to ensure immediate post-death wishes are honoured. In some cultures a body may remain in the house for a period of days while rituals take place. These vary from the washing and dressing of the remains, to family gatherings to celebrate in the presence of the deceased.

The length of time an unembalmed body may legally be kept at home varies from state to state, but is generally no more than 5 days. There might also be prosaic matters that need to be taken into account, such as the time of year and the ambient temperature.

More information on after-death practice in the home can be found here.

A comprehensive rundown on preparing for a death in the home can be found here.