Death & dying

Sunday 28 February, 2010

On this page: Wills | Planning a funeral | Medical intervention | Hospital, home or hospice | When is death expected? | What happens when a person is dying? | Immediately after the death | Visitors and sympathy calls | The time after death | Who do I have to tell? | Anniversaries

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This section is for people who know the person they're caring for is going to die and want more information. If this isn't something you're ready to think about, come back to it later.

'For weeks we didn't talk about death. I thought I was doing the right thing, protecting her from having to think about what it was going to be like. But she was thinking and planning and she wasn't scared. She had instructions for me, about what she wanted. And when we finally talked and cried about her death I felt better, I knew what she wanted me to do. I had some direction. I knew I could be there for her when it was really important.'

When you start thinking about death and dying you may face more questions than answers. You may for the first time think about what death means to you. It will be helpful to discuss these thoughts with someone close to you, a counsellor or someone connected to your religion. Planning can help reduce stress and can take the pressure off when making decisions.   

Wills

A will states what is to happen to a person's belongings when they die. For those left behind, a will simplifies matters, especially if a person leaves assets such as property or money. A will also helps to ensure that ‘special things' are given to the right people after death.

The person you are caring for may have made a will before their cancer diagnosis. If so, it's a good idea to encourage them to review it to make sure it reflects their current wishes. This is not an easy issue to raise, so look for an appropriate time.

If there's no will, they may like to try a do-it-yourself will, especially if the division of assets is straightforward. Will kits are available from legal stationers and at some newsagents. If you live in a city, there may be a community legal service that can help.

Alternatives include a solicitor or a trustee firm. If the assets are substantial, or the division of them will be complex (for example, if the person with cancer's main relationship is not fully recognised by the law), professional legal advice should be sought. It's wise to be clear about the cost involved first.

See legal rights and responsibilities.

Planning a funeral

Many people have specific religious and cultural customs relating to funerals. You may have no wish or need to plan a funeral.
If the person with cancer's religion doesn't require them to follow specific customs, or if they're not religious, planning can often help to minimise the distress after a person dies.

Perhaps the person you're caring for would like to be involved in the planning of their funeral, to leave their mark. However they may feel uncomfortable bringing up the subject. You could try raising the issue and see what happens. They may want you to include a certain piece of music, poem or involve a particular friend who has a story or two to share.

A funeral can be expensive. You may have personal or cultural expectations about the scale of the event. This can add financial stress to emotional burden.

Some legal requirements need to be met in Victoria when someone dies and is buried or cremated. You can ask a funeral director to visit and explain costs, or contact several different funeral firms if you wish. You may not wish to do anything elaborate; you may simply wish to arrange a memorial service and make a few other low-key arrangements.

If you're not keen on planning the funeral yourself, but feel some plans should be in place, ask to speak to a social worker or pastoral care worker from the hospital or palliative care service. A close friend or family member may be able to do the early planning for you. You or your friend may wish to contact one or more funeral businesses to find out about procedures and costs.

If you have children who will need special attention at the funeral, think about asking a relative or friend to help when the time comes.

Medical intervention

In the same way that treatment can prolong life, medical intervention can delay death. There can be choices and decisions to be made about continuing treatment. It's difficult to know what someone may want ahead of time. Some people have strong wishes and may want to know that these will be respected.

Competent adults can refuse medical treatment, provided they understand the consequences. Palliative care, including pain relief and food and water, can't be refused. Each treatment must be refused individually: you can't refuse all medical treatment at one time. A person may decide to continue with one part of the treatment and cease another, because it's futile, costly or uncomfortable.

A person with cancer can appoint an enduring power of attorney (medical treatment) to represent their wishes with regard to medical treatment should there come a time when they're no longer able to. Information about this can be obtained from the Office of the Public Advocate, Victoria Legal Aid, a solicitor or social worker. 

Voluntary euthanasia

People who have advanced cancer sometimes think about voluntary euthanasia (choosing to die rather than suffer the possible effects of treatment or disease). They think about it from their own perspective and from the carer's perspective. Commonly, people worry about suffering or ‘being a burden' to others. If an illness is prolonged or is very hard to bear this can become an issue.

Try not to ignore the issue of voluntary euthanasia if it's raised, even though it may be hard to discuss. A person with cancer may decide at one stage that they want their death hastened, but later decide that they don't: they considered it because they were feeling particularly ill, scared or worried about the strain they were putting on others.

Voluntary euthanasia is illegal in every state in Australia. Nevertheless, it's something that some people think about when they're seriously ill. Discuss the issues with the person with cancer. Often what's needed is reassurance of your willingness and ability to provide care, clarification of facts about the illness and its likely course and open discussion of other concerns.

If you feel you don't have all the facts about the illness or supportive and palliative care, ask the doctor or nurse for the information you need. 

Hospital, home or hospice

The person with cancer may need to go back and forth between hospital and home. Some people with advanced cancer can be treated as day patients, while some may require a stay in hospital. Often the care provided in the hospital helps to stabilise the person so they can be cared for at home for long periods.

The place of death may be more important to some than to others. Often the person who is dying will suggest hospital, especially if they feel it will be too hard for you to provide the care at home. For others, a hospital or hospice provides a sense of security. This is an important issue to discuss, if you can. One of you may have strong views, making the decision easy. If the choice is less clear, try to come to some agreement before the time - that way you are less likely to have regrets or feel guilty.

The alternative to hospital or home is a hospice. A hospice provides palliative care for people who have incurable disease and is staffed by qualified people. Speak to your nurse or doctor or to the palliative care nurses who come to your home; they will be able to give you details of what is available in your area.

There are some important issues to consider when making this decision. Most people hope to be free from suffering, especially pain, when they're dying. This can usually be achieved at home with the help of specialist doctors and nurses. If they know you want to keep your family member or friend at home they will use pain-control methods, if needed.

Perhaps peace, quiet and privacy are important. If so, home may be better because you will not be affected by hospital routines. A hospice has less routine but you may not be guaranteed a single room. You may decide you want other family members and friends around to reminisce, play music or share in quiet time. This can be harder to do in a hospital or hospice. 

When is death expected?

Death is not predictable. We rarely know when or how it will happen. Your doctor won't know for sure exactly when a person with advanced cancer will die. 

'When the doctor said we were only looking at a matter of weeks I thought, "No, that's way too soon". But we lived every minute of every day of every week, and we only had 2 weeks. But I said and did really special things, we were lucky to have this time knowing.'

When the doctor says ‘days to weeks' or even ‘weeks to months', it's usually an estimate, based on the life expectancies of people with similar cancers.

Try not to focus on the exact detail of time, rather on the fact that you have time - however long or short - to prepare for your relative or friend's death. This time can be valuable for resolving unfinished business, expressing your feelings and sharing special moments that you can treasure after the death.

If you do expect the person to die at a particular time, what happens if they don't? You may both feel unsettled or strange.

'We were told months ago it may only be a matter of months and for some reason I had October or November in my head. And now it's January and she's still here and doing OK. Sometimes I laugh about it and sometimes I don't know what to think. But most times I think, "Just enjoy".' 

What happens when a person is dying?

How death will happen is also very difficult to predict. Some people deteriorate rapidly, lapse into unconsciousness and die within days. Others deteriorate, stabilise, then again deteriorate and die. Some people are awake and alert right to the time of death, while others lapse into and out of consciousness.

No matter what their conscious state, the dying person will have a sense of what's happening around them, even if they can't talk with you. It seems that hearing is the last sense to go. So talk to the person, let them know you're there and what you're doing.

'I told her it was OK to go, she didn't have to stay just for me. You know I really believe she heard me. She seemed to be more peaceful, not as restless and she died a couple of hours later.'

The nurses, or the health professional who is attending the death, will explain to you how they're keeping the person who is dying comfortable. You can expect some changes in how the person with cancer appears as they move towards death.

Sometimes breathing becomes laboured and you'll notice longer periods between breaths as death approaches. This can stretch to a minute or more. You may think they have taken their last breath and they'll take another: this is normal and eventually all breathing will stop. Breathing can become noisy, and may be distressing to those in the room. A drug is available to dry up secretions that can cause noisy breathing.

Many people need oxygen or a urinary catheter to make them more comfortable when they are very ill and dying. Both of these can be managed at home. After death, the urinary catheter will need removing: this is best done by a nurse either in the hospital or at home before the funeral director comes.

Stopping oxygen therapy after death usually requires a machine to be turned off and the face mask or nasal prongs removed.
Pain-relieving drugs are often given via a ‘syringe driver': a small machine that provides the drugs continuously and in the correct amounts. A tube goes from the machine to a small needle that goes under the skin. This needle is changed regularly. When the person dies, the machine or pump needs to be stopped and the needle removed. You may like to do this yourself or ask the nurse to do it for you.

When a person dies they look different, especially their skin colour and the shape of their face. If a person normally wears dentures and they're not in at the time of death the mouth tends to fall open and appears sunken. The person will look more themselves if dentures are replaced soon after death. Blood stops circulating after death and so the person will look pale or ‘waxlike', and sometimes a little grey or mottled - this will become more noticeable with time.

Often extremities such as feet and fingers will appear darkened or blue close to and after death. These things are important to know, especially if you wish to wash the body yourself or be in the room while this is being done. Some people say there's a distinct smell. This can be overcome by opening a window or burning a scented candle in the room. 

Immediately after the death

You may have particular religious or cultural customs relating to the time after a person dies. For example, some cultures encourage people to wash the body; others require that the body isn't touched. So your religion or culture may determine what you do in this period.

If the person dies at home there is no need to call an ambulance. It is best to call your general practitioner or the palliative care nurses if they've been visiting the house. There is no rush to do this; if the death occurs during the night, you can call in the morning. If you are alone, the first thing you may want to do is call a friend or relative to be with you.

You may want the body to remain in the house for many hours to allow family and friends to visit or maybe you need some time alone before the body is taken out of the house. This is up to you, or you may be guided by your religion or culture. The only thing that has to be done is for the death certificate to be signed, which is the doctor's responsibility. By law a person must be pronounced dead by a medical doctor and the appropriate paperwork completed.

When you're ready, the next call could be to the funeral director. This is something you can do or it may be easier to ask a friend to do this for you. You may wish to view the body before the funeral; this needs to be arranged with the funeral director. Viewing the body is often helpful for people who were not present at the death. It can make the situation seem more real and help them grieve.

Visitors and sympathy calls

The days between death and the funeral and for a little time afterwards can be very busy because of all the arrangements that have to be made and because many people will visit or phone you. In some cultures, this is a quiet time, when friends and community members allow families to grieve.

Your friends and family are going to want to support you. This can be comforting and helpful. However, you may feel you need some time to yourself. Most people will understand and respect your wishes. This is another time when email and an answering service can be very useful so you or someone else can return enquiries when you are ready. Many people just want you to know they are thinking of you and don't need their call returned, but some will.

Having someone in the house to attend to visitors is also helpful. They can tell people if you are not up to visitors or they can look after the tea and coffee if you do want to see people. You may find repeating details of the death and funeral ar-rangements very draining. Having someone else do this helps preserve your energy. This is especially important if you have children who will need your love and attention.

The time after death

The time after someone dies can be filled with emotions such as sadness, loneliness and regret. You may feel numb or even relieved. Although death was expected, it can still be a shock. These emotions change and vary in intensity over time. There is no ‘right' way to grieve; you will grieve in your own way. You will probably feel very tired, emotionally and physically. Try to take care of yourself.

One area of concern is what to do with the person's belongings and by when. Some of them will need to be distributed according to the will; others you may choose to keep.

The time will come for you to deal with items like clothes and books. You may wish to do this alone or with someone. It will not be easy but remember there is no rush.

You may have many questions: ‘What if we had tried a different treatment?', ‘What if the last scan had been done a month earlier - would it have made a difference?', ‘Why was his breathing so noisy at the end - was there something wrong with his lungs?'

Most doctors (and nurses who were visiting before the death) are happy to meet you to discuss these things. Your palliative care bereavement service may also be able to help. When you are ready, make an appointment and let them know you have some questions, so they can give you the time you need.

After the death, you may come to a point when you wonder whether what you are feeling is normal. The length and nature of grieving is individual. What seems a long or short time to grieve for some will be the correct time for others. Only you know what is right for you. If something about what you are feeling seems wrong, talk to a bereavement counsellor.

You may find that your friends and family are very suppor-tive in the first two or three weeks after the death, but then, as they settle back into their normal routines, don't contact you as much. This can be a very lonely time.

If you want some support or reassurance, contact the hospital social worker or pastoral care worker, the palliative care team's bereavement counsellor or the Cancer Council Helpline. They will tell you how to make contact with a bereavement counsellor or support group. Many people need this type of support.

There will come a time when you are ready to move on, but you will never forget.

'Now that she's gone, I miss her dearly but I also feel relieved for 2 reasons: the woman I love dearly is no longer suffering, and I can get on with my life now.'

Who do I have to tell?

After the funeral, when things are a little less hectic, you will have to notify some organisations of the person's death. They include: 

Other organisations that you may need to contact in time include the RACV, the Road Traffic Authority and sporting and social clubs.

Anniversaries

Special dates or anniversaries can be especially difficult after someone dies.

Birthdays, graduations, holy days and wedding anniversaries are times when you may be reminded of the person who has died and the fact that they are no longer around to celebrate these occasions.

These times can be very difficult and you may like company rather than being alone. Special dates, especially the anniversary of the death, can be a time when it is okay to feel sad and to talk about these feelings with someone you are close to.

Or you may find you want to celebrate the life that was and reminisce on good times. Plan to spend these special times in the way that you think will be most helpful to you.

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