Choosing where to die

In your own home

If asked, many people say they want to die at home. This may be because they want to be around familiar surroundings and people.

While this option is not for everyone, if you do want to be at home, support is available. This may vary from a few hours a week to a few hours a day to 24-hour care (although 24-hour care is very expensive). Your GP, nurse, palliative care specialist or palliative care nurse practitioner can suggest services to manage symptoms such as pain or breathlessness. They can also teach carers how to assist with day-to-day activities such as bathing and eating. Even if you live alone, with planning, you can stay as long as possible in your own home.

Some carers may find having you nearby easier. It may mean that they don’t have to travel, or fit in with a hospital or palliative care routine. Caring for someone who is dying at home can be a meaningful experience, but it can also be challenging.

Sometimes people go into a palliative care unit or hospital to have symptoms managed or to give their carers a break (respite), and then return home. Or they may decide it’s not possible to stay at home, even with home help, and that they would be more comfortable in a palliative care unit or hospital.

You can decide at any stage to change your mind about staying at home and explore other options. If you are planning to stay at home until the end, talk to your GP or palliative care team about ways of dealing with unexpected medical events.

Key points about dying at home

• Being cared for in a familiar environment, surrounded by people you know, may help your emotional wellbeing.
• You can spend more time with family and friends, as there are no visiting hours.
• Depending on your situation and preferences, your family and friends can be at your side at all times.
• Being at home may offer more flexibility to maximise your quality of life.
• It may feel more natural and less clinical, while still giving you access to expert medical advice and symptom control.
• It allows you a sense of control over the last part of your life.
• Your family and friends may find comfort in providing most of your care.
• A range of services can give you and your carers help and support. Keep a list of phone numbers handy for when you need advice and support.
• After death, family and friends can grieve at their own pace and decide when to call the ambulance or funeral home.

In a palliative care unit

A palliative care unit is a specialised palliative care facility. It is sometimes called a hospice, and may be a standalone facility or rooms within a hospital.

The focus at a palliative care unit is on caring for people with a life-limiting illness and maintaining quality of life. They are run by health professionals who specialise in providing physical and emotional comfort to the patient, and supporting family before and after death.

Palliative care units and hospices are different from most hospital wards. They are usually quieter and calmer, and may have a more homely environment. Many people value the relaxed surroundings, as well as the skilled staff and expert symptom management.

These facilities often provide short-term respite care as well as longer-term care for the dying person. Sometimes you can go back and forth between a palliative care unit and another setting during your final weeks. Many facilities now have a maximum length of stay, so you may want to check this with them ahead of time.

You may choose this option if you want to relieve your family from caring for you while you are dying, although they can still be involved. This can include feeding, bathing or simply being present.

Some people and their family and friends are unsure of when to contact a palliative care unit. They may wait to call until the final days, possibly missing out on the support that a palliative care team has to offer. Some facilities have waiting lists, so talk to your doctor or palliative care team early about how you should make arrangements and when would be an appropriate time to make the first contact.

Key points about a palliative care unit

• Palliative care units offer a welcoming and comfortable physical environment.
• Health professionals can provide 24-hour care, including expert pain and symptom control.
• The focus is on quality, not length, of life.
• You can focus on being with family and friends rather than on any care needs.
• It may give direct access to a team of professionals and volunteers trained to meet the needs of the dying person and their carers.
• Carers can leave at the end of the day and get some rest.
• Some families prefer not to live in a house where someone has died, although others find this a comfort.

In hospital

Even when death is expected, more people approaching the end of life die in hospital than anywhere else. While some people and their families feel more secure being near health professionals, others feel anxious about hospital care, believing it will be too impersonal.

If you have spent a lot of time in hospital during your illness, you may want to stay on the same ward where you are familiar with staff and surroundings, they know you and they understand your specific needs. You’ll need to check if this is possible – sometimes people are moved to a different ward as their medical needs change. To help create a more homely environment, ask if you, your carers, family or friends can bring in familiar items from home, such as a favourite blanket or photos.

Decisions about your care may be made without your input. Hospitals sometimes provide medical interventions, such as resuscitation and intravenous drips, that may not be what you want in the final weeks or days of life. Your health care team should work with you to make sure your care plan matches your preferences. If you are concerned, let the hospital staff know what interventions you are comfortable receiving and what you’re not happy to have happen.

You can arrange to have your preferences and wishes recorded in an advance care directive  before an emergency occurs. It is a good idea to also keep a copy at home so your carers and your family and friends know your wishes too.

The different aspects of end-of-life care in a hospital can be managed with communication and advance care planning. Preparing an advance care directive (known by different names depending on where you live) can help give you control over your medical treatment and care.

Key points about a hospital

• Experienced medical and nursing staff are available at short notice to manage your physical symptoms (e.g. pain, breathlessness, fatigue, delirium) and your emotional needs (e.g. anxiety, agitation).
• You must be in a hospital to donate your organs.
• Carers can leave at the end of the day and go home to get some rest. But some carers may find leaving you to go home difficult.
• It provides 24-hour care.
• Some families prefer not to live in a house where someone has died, although others find this a comfort.

In a residential aged care facility

A residential aged care facility (formerly called a nursing home) is a place where people stay who need continual care and help with daily living. These facilities cater for people with a range of chronic conditions, and nurses and aged care workers can provide continuous care. Some aged care facilities also provide respite and end-of-life care.

Some people fear that dying in residential aged care will be unpleasant and perhaps impersonal. But dying in an aged care facility can be comforting, particularly if it has been your home for a period of time and you are familiar with the people there. Staff will try to make you comfortable and give you and your family privacy.

If you want to die in a residential aged care facility, have an advance care directive in place. Talk to your care providers about avoiding an unnecessary transfer to hospital at the end of life.

Key points about a residential aged care facility

• It may provide a less clinical environment than some hospitals.
• Experienced staff are on hand to help manage symptoms and needs.
• It may be located close to carers, family and friends.
• May provide 24-hour care.
• Family and friends can go home to get some rest – although some carers may find this difficult.
• Some families prefer not to live in a house where someone has died, although others find this a comfort.