Facing end of life

Where to die

Choosing where you would like to die is a personal decision. This section describes the options of dying in your own home, in a palliative care unit or hospice, in hospital, or in a residential aged care facility. Each option has pros and cons.

Making your choice

Choosing where to die can be a confusing and difficult decision to make. The options include:

  • your own home
  • a palliative care unit or hospice
  • a hospital
  • a residential aged care facility.

Having some control over where death occurs is often cited as a key factor in dying well, but where that place might be will be different for everyone. As well as your own preferences, you’ll need to evaluate your physical needs and the support that can be provided by family and friends.

Discuss with your family, friends and health care team where you would like to have end-of-life care and what is important to you. Find out their views and preferences. Having these conversations as early as possible and planning ahead can increase the chances of care being able to be provided in your place of choice.

In some cases, you may feel like your choice is limited, and that the practicalities help decide the setting. This may be because you have medical needs that only a hospital or palliative care unit (hospice) can meet, or you may live in an area too remote for home visits. Your house may be unsuitable, perhaps because of stairs or a small bathroom, or you may not have any family or friends in a position to provide care for you at home. Talk to the palliative care team about your concerns and find out what options are available in your area.

What if you change your mind?

Where you would like to die may change over time and as your circumstances change. This is understandable and your wishes should be respected whenever possible. You may need to have ongoing conversations with your carers and medical team about the best place for your care.

In your own home

If asked, many people say they want to die at home around familiar surroundings and people. While it is not for everyone, if you do want to be at home, help and support may be available for you and your carers. Even if you live alone, with planning you can stay as long as possible in your own home.

Although dying is a natural process, few people have experience or knowledge of looking after someone who is dying. It’s a good idea to check how your family and friends feel about home care, and to allow them to express their own wishes without being judged.

Some carers may appreciate having you nearby and not having to fit in with the hospital routines. Other carers may be frightened and worried that they don’t know what to do. For some people, the thought of living in or visiting a house where someone has died fills them with concern.

Caring for someone who is dying at home can be a meaningful and comforting experience, but it can also have challenges. Your GP, nurse or specialist palliative care team can let your family know what assistance is available, and reassure them that they don’t have to cope alone. You might ask people you know who have cared for someone dying at home before to share their experience with you. Your carers can also read the Caring for someone nearing the end of life section.

Sometimes people go into a hospice or hospital to have their symptoms managed, or to give their carers a break (respite), and then return home. Or they may decide that they would be more comfortable in the hospice or hospital. Accept that plans can change and do what is best for your particular situation.

If you are planning to die at home, talk to your palliative care team about ways of dealing with unexpected medical events. Keep a list of phone numbers to call if you need advice and support.

Home: what are the benefits?
  • Helps you maintain emotional wellbeing by being cared for in a familiar environment surrounded by people you know well.
  • Lets you spend more time with family and friends.
  • 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.

In a palliative care unit or hospice

You may decide that you’d be more comfortable in a setting with staff who have the expertise to help your family and friends look after you. Specialised palliative care facilities may be called palliative care units (often associated with a hospital) or hospices. They focus on end-of-life care centred on quality of life. Staff 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. Usually quieter and calmer, they have a more homely environment. Many people value the relaxed surroundings, as well as the skilled staff and expert symptom management.

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

A palliative care unit or hospice may offer a break from mainstream health care or from people wanting to visit you at home. You may choose this option if you want to relieve your family from caring for you while dying, although they can still be involved. They can help in many ways, such as feeding, bathing, and offering comfort by reading, sharing music or simply being present.

Some people and their family and friends are unsure of when to contact a palliative care facility. They may wait to call until the final days, possibly missing out on the support that this environment 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 initial contact.

Palliative care unit or hospice: what are the benefits?
  • A warm and comfortable physical environment.
  • 24-hour care with expert pain and symptom control.
  • Focus is on quality not length of life.
  • Direct access to a team of professionals and volunteers trained to meet the needs of the dying patient and carers.
  • Allows the patient and their family and friends to focus on being together.
  • 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 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, and they know you and 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 or your carers can bring in familiar items from home, such as a favourite blanket or photos.

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 wishes. 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 a do-not-resuscitate (DNR) order or other document before an emergency occurs.

The quality 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. See advance care planning for further details on what this is and how it can help ensure your wishes are followed.

Hospital: what are the benefits?
  • Experienced medical and nursing staff are available at short notice to manage physical symptoms (e.g. pain, fatigue, breathlessness) and emotional needs (e.g. anxiety, delirium, agitation).
  • Carers can leave at the end of the day and go home to get some rest.
  • 24-hour care.
  • Some families prefer not to live in a house where someone has died.

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 aides are available 24 hours a day to provide care. Some aged care facilities provide respite and hospice care also.

Some people fear that dying in residential aged care will be unpleasant and perhaps frightening. Yet 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 create the right environment 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: what are the benefits?
  • A less clinical environment than some hospitals.
  • Experienced staff to manage symptoms and needs.
  • May be located close to carers, family or friends.
  • Carers can leave at the end of the day and go home to get some rest.
  • Some families prefer not to live in a house where someone has died.

Expert content reviewers:

Kerrie Noonan, Clinical Psychologist, Palliative Care, Liverpool Hospital, and Director, The GroundSwell Project, NSW; Gabrielle Asprey, Facilitator, Telephone and Internet Support Groups, Cancer Council NSW; Ann Branford, 13 11 20 Consultant, Cancer Council SA; Dr Kathryn Dwan, Senior Policy Officer, Palliative Care Australia; Dr Michelle Gold, Director of Palliative Care, Alfred Health, VIC; John Haberecht, Director of Learning and Development, Centre for Palliative Care Research and Education, QLD; Marjorie Hunter, Consumer; Philippa Kirkpatrick, National Policy Manager, Palliative Care Australia; Cecilia van Raders, PalAssist Coordinator, Cancer Council Queensland.

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