Where to die

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. 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 appreciate having you nearby and not having to deal with hospital disruptions or fit in with the hospital routines. Caring for  someone who is dying at home can be a meaningful and comforting experience, but it can also be challenging.

Sometimes people go into a hospice 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 die at home, talk to your GP or palliative care team about ways of dealing with unexpected medical events. Keep a list of phone numbers handy to call if you need advice and support.

Home: key points

• Being cared for in a familiar environment surrounded by people you know well may help you maintain emotional wellbeing.
• Lets you spend more time with family and friends.
• Depending on your situation and preferences, your family and friends can be at your side at all times.
• May offer more opportunities to maximise quality of life.
• May feel more natural and less clinical, while still giving you access to expert medical advice and symptom control.
• 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.
• After death, family and friends can grieve at their own pace and decide when to call the ambulance or funeral home.

Specialised palliative care facilities may be called palliative care units or hospices. Some hospices have rooms within a hospital. Palliative care units focus on caring for people with a life-limiting illness and aim to maintain quality of life. They are run by health professionals who specialise in providing physical and emotional comfort to the patient, and supporting the family before and after the death.

Palliative care units and hospices are different from most hospital wards. They are usually quieter and calmer, and 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 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 unit or hospice has to offer. Some facilities have waiting lists, so talk to your palliative care team about when would be an appropriate time to make the first contact.

Palliative care unit or hospice: key points

• Offers a welcoming and comfortable physical environment.
• Provides 24-hour care with expert pain and symptom control.
• Focus is on quality, not length, of life.
• Allows the patient and their family and friends to focus on being together.
• Direct access to a team of professionals and volunteers trained to meet the needs of the dying person, and 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).

Even when death is expected, more people approaching the end of life die in hospital than anywhere else. While some people 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 lines, 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, talk to the hospital staff and request that you don’t receive such interventions. You can arrange to have your wishes recorded in an advance care directive before an emergency occurs. It is a good idea to keep a copy at home so your carers and your family and friends know your wishes.

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 can help give you control over the type of medical treatment you receive.

Hospital: key points

• Experienced medical and nursing staff are available at short notice to manage physical symptoms (e.g. pain, fatigue, breathlessness, delirium) and emotional needs (e.g. anxiety, agitation).
• Able to make organ donation. For more details visit donatelife.gov.au.
• 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.
• Provides 24-hour care.
• Some families prefer not to live in a house where someone has died.

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 care 24 hours a day. Some aged care facilities also provide respite and hospice 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 staff, who will try to make you comfortable.

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

Residential aged care facility: key points

• A less clinical environment than some hospitals.
• Experienced staff to manage symptoms and needs.
• May be located close to carers, family or friends.
• Provides 24-hour care.
• Family and friends can go home to get some rest. But some carers may find this difficult.
• Some families prefer not to live in a house where someone has died.