Where to die

Saturday 1 February, 2014

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On this page:  What is a ‘good death’? | In your own home | In a hospice | In hospital | In a nursing or residential home | Thoughts about euthanasia

There are several choices for end-of-life care. This page outlines these options and lists some of the benefits to consider.

  • While choosing where to die is a personal decision, it can still be difficult to make.
  • Options include: dying in your own home, at a hospice, in hospital or in a nursing home. Each setting has pros and cons.
  • Many people express the wish to ‘die with dignity’. Talking about what you want will help ensure that the way you want to die is respected.
  • Having some control over where death occurs is often cited as a factor that contributes to a ‘good death’.
  • Other factors include having some understanding of what to expect, having some control over pain relief, maintaining a sense of dignity and being able to have a say in end-of-life care.

Choosing where to die is a personal decision. The options covered here all have pros and cons.

You’ll need to evaluate your physical needs and the support that can be provided by family and friends. 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, hospice or palliative care unit 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.

Discuss with your family or friends where you’d like to have end-of-life care and what is important to you. Ask them about their views and preferences.

You may be concerned about dying with dignity. This means different things to different people, but for many it means dying with respect for your wishes and the way you want to die. For help working out the best option for you and your family, talk to the palliative care team.

As you approach the end of life, you may wonder how you will know the end is near. Where people would like to die may change over time and as their circumstances change.

What is a ‘good death’?

People often talk about wanting to have a ‘good death’. What this means is unique for everyone, shaped by his or her attitudes, cultural and spiritual backgrounds, as well as medical treatments.

Although there is no right way to die, research has identified some common factors that can help a death seem good, including:

  • knowing that death is coming and having some understanding of what to expect
  • having some control over pain relief and other symptoms
  • being able to retain some control over where death occurs and how it happens
  • maintaining a sense of dignity
  • having the opportunity to prepare for death
  • having the chance to say goodbye
  • having few regrets
  • reconciling damaged or broken relationships
  • being able to have a say in end-of-life care and to ensure wishes are respected.

With planning, you can achieve a good death. Dying at home may be seen as a marker of a good death, but there is more than one way to die well. The important thing is that you are able to decide and have your physical and emotional symptoms well controlled.

Achieving a dignified and peaceful death can help family cope better with bereavement.

In your own home

If asked, many people say they want to die at home around familiar surroundings and people. While it may not be the option everyone might choose, if you do want to be at home, then 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.

Who can help you stay at home?
Your GP overall responsibility for your care
Palliative care team helps you and your family maintain quality of life
Community-based nurse provides ongoing care
Volunteer provide a range of support services – can help with home or personal care
Physiotherapist helps make the physical aspects of your life easier
Social workers Organise help with housework, shopping and cooking or personal care
Occupational therapist assesses your home and suggests equipment, such as hospital beds, wheelchairs and bedside commodes
Counsellor, psychologist or psychiatrist helps you work through your feelings
Pastoral care worker talks about any spiritual matters

It’s a good idea to check how your family and friends feel about home care. 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. Although dying is a natural process, few people have experience or knowledge of looking after someone who is dying. If you find your family isn’t supportive of you staying at home, talk to your doctor, nurse or palliative care team. They can advise your family of what assistance is available, and reassure them that they don’t have to cope alone.

Although you may wish to die at home, you may change your mind as you get closer to the end of life. Sometimes people go into a hospice or hospital to have their symptoms managed or to give their carers a break, and then return home. Talk to your palliative care team about ways of dealing with unplanned events. Have the contact details of professionals you can call if you need advice and support.

For more information on how they can cope, suggest your carers read caring for someone nearing the end of life.

Home: what are the benefits?
  • Maintain emotional wellbeing by being in a familiar environment surrounded by family and friends
  • Sometimes offers better opportunities to maximise the quality of life
  • Retain a greater sense of control over your life

In a 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.

A hospice focuses 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.

Hospices are different from hospitals. They are often quieter and calmer, and have a more homely environment. You can stay for a short period of time, and sometimes you can go back and forth during your final weeks. Many hospices now have a maximum length of stay, so you may want to check this when booking in.

Hospices are valued for their relaxed surroundings, skilled staff and symptom management. The hospice may offer a break from mainstream health care and respite from people wanting to visit you. 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 hospice. They may wait to call the hospice until the final days, possibly missing out on the support that this environment has to offer. Talk to your palliative care team or doctor about when it’s a suitable time to call the hospice.

Hospice: what are the benefits?
  • A warm and comfortable physical environment
  • 24-hour care
  • Focus on quality not length of life
  • A team of professionals and volunteers trained to meet the needs of the dying patient and their caregivers. This can involve doctors, nurses, social workers, chaplains and other trained hospice staff and volunteers
  • Pain and symptom control
  • Treats the patient, not the disease
  • Allows the patient and family and friends to focus on being together
  • Carers can leave at the end of the day and get some rest
  • Some carers may not want their family member to die at home as it could be a constant reminder of their dying

In hospital

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 as 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 can provide medical interventions, such as resuscitation and intravenous lines, that some people may think are unnecessary as a person nears death. If you are concerned, talk to the hospital staff. You can request that you don’t receive them.

The quality of end-of-life care in a hospital can be managed with communication and advance care directives. Preparing an advance care directive can help give you control over the type of medical treatment and interventions you receive. See further details on what this is and how it can help ensure your wishes are followed.

Hospital: what are the benefits?
  • Experienced staff to manage physical symptoms (i.e. pain, fatigue, breathlessness) and emotional needs (i.e. anxiety and delirium)
  • Access to medical technology
  • Carers can leave at the end of the day and get some rest
  • 24-hour care
  • A hospital can offer a sense of closure to family and friends, as they don’t have to return to the hospital after someone dies

"The hospital staff took care to ensure we had a private space to gather as a family, and we could come and go to my husband’s bedside."

In a nursing or residential home

A nursing or residential home is a place where people stay who need continual care and help with daily living. They are available to people who have different conditions, and nurses and aides are available 24-hours to provide care.

Some people fear that dying in a residential home will be unpleasant and perhaps frightening. Yet dying in a nursing home 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.

Nursing/residential home: what are the benefits?
  • Possible choice of a facility close to carers or loved ones
  • Less clinical environment than some hospitals
  • Experienced staff to manage physical symptoms and emotional needs
  • Carers can leave at the end of the day and get some rest
  • After you have died, families and friends don’t have to return to the nursing home

Thoughts about euthanasia

If an illness is prolonged or very debilitating, some people think about speeding things up. Euthanasia is when somebody’s life is deliberately ended to relieve them of their suffering from an incurable condition or illness.

Voluntary euthanasia is illegal in every state in Australia. Nevertheless, it is something that some people consider when they are seriously ill.

Sometimes a person with cancer may decide that they want their death hastened, but later decide that they don’t. They may have thought that way because they were feeling particularly ill, scared, or worried about the strain they were putting on others.

If this is how you feel, discuss your concerns with your doctor, a counsellor or social worker. Sometimes these feelings are due to depression, feeling helpless or because pain is not being well controlled.

Pain and depression can almost always be treated, and help is generally available for other symptoms. It is important that you talk to your doctor or nurse about any physical or emotional symptoms that are causing you pain or distress, and find ways to make your final days more comfortable.

If you urgently need somebody to talk to because you are thinking about ending your life, call Lifeline on 13 11 14 for free, confidential telephone counselling at any time of the day or night.

Reviewed by: Dr Melanie Price, Executive Director, Psycho-oncology Co-operative Research Group, Senior Research Fellow, School of Psychology, University of Sydney; Dr Erica Cameron-Taylor, Staff Specialist, Department of Palliative Medicine, Mercy Hospital and Calvery Mater Newcastle, NSW; Gabrielle Gawne-Kelnar, Telephone Support Group Facilitator, Cancer Council NSW; Helpline and Cancer Counselling Service staff, Cancer Council QLD; Judith Quinlivan, Consumer; Linda Wolfe, Consumer; and Dr Mary Brooksbank, Philip Plummer and Claire Maskell Gibson on behalf of Palliative Care Australia. 
Updated: 01 Feb, 2014