Living with

What now?

A Guide for families facing a life threatening illness.

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So—you have been diagnosed with a life threatening illness

When you have been diagnosed with a life threatening illness there are many, many questions. This information sheet tries to provide some of the answers. It is addressed to you, the patient, and to your family and friends. Until the moment of death, you are living and there is much that can be done to maintain your quality of life or lifestyle.

How am I going to cope with this news?

The news that you have a terminal cancer or another life threatening illness brings many reactions. Shock may be followed by fear, sadness, anger, worry, weariness and intense feelings of “Why me?”  You may cry a lot and feel hopeless and severely depressed. Most find great support and comfort in sharing their feelings and accepting help.

It may be difficult to make sense of what is happening to you. There may be many questions you want to ask and you may not be able to find the words. Don’t be afraid to ask questions of your doctor or specialist.  You might find it helpful to write down questions as they occur to you in between appointments with your doctor.

If I am in physical pain, can it be eased?

In almost all cases, yes. It is very important for you to be able to speak plainly about pain and discomfort and ask your doctor or nurse any question that is on your mind. Here are some things you should know about pain control.

Opioids are a family of drugs used to relieve pain and other symptoms such as breathlessness. Morphine is one of the best known and most commonly used opioids. There are many myths about morphine. Here are the facts.

• Morphine and other opioids, properly prescribed for pain relief, are not addictive.
• Morphine will often be prescribed early in the course of an illness.  This is not a sign that death is close. People taking morphine to control pain may be able to live for many years, going about their lives in the usual way.
• Morphine will not necessarily hasten death and can actually improve the quality and length of life.
• No two people have the same dose requirements for morphine and other opioids. Dosage levels can vary enormously. One patient might need 5 mg of morphine to control pain – another might need 500 mg or more.  Only the patient can know when pain has been eased.
• Morphine to control pain may mean that you can continue to go to work, take a holiday, go to special family events and enjoy a better quality of life without physical pain.
• Opioid drugs may have side effects including constipation, drowsiness (initially), nausea and confusion. These side effects can often be controlled or eased.
• Morphine can be given in many forms including oral mixtures, tablets or by injection.

Pain relief – important points

1. Select the right medication (which may range from paracetamol to morphine).
2. Start in good time and increase the dose or move to a more powerful drug as the pain increases.
3. Take regular doses to keep the pain at bay. It is better to take pain relief regularly to prevent pain, rather than let pain return and then try to relieve it.

If you follow this guide, you will be controlling the pain, not letting the pain control you. Other medications include simple analgesics (paracetamol, aspirin and anti-arthritic drugs), muscle relaxants and anti-depressants, which can help to relieve pain. With good care, your doctors and nurses will find the pain relief that suits you best.

Cancer pain can be relieved by radiotherapy (x-ray anti-cancer treatment) and chemotherapy (anti-cancer drug treatment). Chemotherapy can be given through injection or by tablets. These treatments aim to relieve pain by killing cancer cells and stopping the growth of tumours or cancers.  Complementary treatments such as massage, meditation, nutritional therapy and support groups may be helpful to some people.

What will it cost?

People with a life threatening illness can often receive care free of charge. Don’t be afraid to ask about the costs of services: it’s better to know in advance than receive a bill you weren’t expecting! In some cases, you may be able to negotiate a reduction if you feel your circumstances warrant it. If you are having financial difficulties, a social worker can give you advice.

What exactly is palliative care?

Palliative care is care which ‘palliates’, or relieves, pain and distress.  It is given when treatment to cure an illness won’t work any longer. It aims to ease pain, distress and the many physical, emotional and spiritual problems that go with a terminal illness.

Palliative care services are there to help people with some of the harder problems. About 90% of these patients have cancer, but some may have diseases like motor neurone disease, HIV/AIDS and end stage heart, lung or kidney failure. Palliative care can be provided in your home, a hospice, a residential aged care facility or a hospital.

With palliative care, the curing stops but the caring continues – not just for you, but also for your family and anyone very close to you. The doctors, nurses, social workers and other team members will look after the people you love in ways that make it easier for you all to support each other. 

How can I be referred to a palliative care service?

It is a good idea to keep in touch with your own doctor to discuss whether you need referral to a palliative care service. If so, you can be referred by anyone who is caring for you, including your family and friends. You can also refer yourself simply by contacting a service. 

Can I stay at home until the very end?

Many people choose to die at home. Ask your local palliative care service for information explaining what you need and how being cared for at home can work for you. It is not easy, but with help from your doctor and home care services, together with family and other support, you may well be able to remain at home. 

Volunteers are important members of palliative care services, especially if you choose to remain at home. They spend time with you to give your carers the chance to go out for short periods and they provide transport when required.

A volunteer can be a friend who understands some of your difficulties.

What about going into a hospice?

A hospice is a place where specially trained doctors, nurses and others care for people who are dying. Sometimes you and/or your family may benefit from respite care in a hospice. You may have to go to a hospice to help manage difficult symptoms and to improve your quality of life. You have to be seen by a doctor before you can be admitted. There are limited beds and sometimes there are waiting lists. In a hospice, everything will be done to make you as comfortable as possible. 

The hospice staff treat the whole you – body, mind and spirit, not just your illness. Social workers can help by providing emotional support for you and your family. They can also help with things that you feel just too weak to deal with such as pensions, wills and accommodation. Hospice staff also give support to family and friends and so can clergy and bereavement counselors.

If I go into a hospice, can I come out?

Yes. Often people return home with their pain and symptoms under control.  Sometimes people go into a hospice for a short time to give their carers a rest. Looking after a terminally ill patient at home can be very tiring.  A break will help you and your carer. 

Can I leave a hospice to come home to die?

Yes. Some people want to say ‘goodbye’ at home. You might want to see old friends as well as your family … give away some treasures … see your garden or your pet. You are the one who makes this choice!

Why do I feel so weak?

As death approaches, you may lose your appetite for food and may not feel like taking more than a sip of water or sucking a chip of ice. It is perfectly normal for your body to start to “let go” of life. Your family or friends who are caring for you may find this very hard. This is when time that may have been spent preparing tempting food for you can now be spent simply being with you. Your doctors and nurses should explain what is happening, and why.

Important things you can do

Parting from those we love is the saddest thing most of us will ever face. But even a short time can be enough to do the things that have to be done – your Will, if you do not already have one; the way your family affairs should be looked after; and letting people know what they mean to you. 

One way may be to use the law to set down your wishes about treatment.  This can be done by way of a Medical Power of Attorney and/or Anticipatory Directions. Work out what is most important and do those things first.  The more you can talk about what is uppermost in your mind and heart, the easier it is to deal with problems that seem overwhelming until they are faced openly.

How am I going to die—How long will it take?

With good palliative care, the time before death is generally peaceful.  There is a gentle winding down that can take several days. You may spend a lot of time sleeping and may be unconscious for long periods. Regular breathing patterns may change, with shallow breathing and short periods of no breathing. Sometimes fluid in the lungs may make a bubbling noise.  Your hands, feet and legs may be increasingly cool to the touch and the colour of your skin may change, showing that circulation of the blood is slowing down. Much distress can be eased by good palliative care. 

Closeness and touch from people you love are important for you and for them. Even though you may not seem to be aware of anyone’s presence, your family and friends should know that the sound of their voices would probably still be heard. They should not assume you cannot hear but should speak gently and naturally to you as they normally would, letting you know who they are.

Hearing is one of the last senses to be lost and it is important for those you love to know that they can continue to be in touch with you until the very end. This is a time when people who are close can give their greatest support by expressing their love and their feelings openly and saying their goodbyes. 

PCCSA Inc
202 Greenhill Road
Eastwood SA 5063

Telephone: (08) 8291 4137
Fax: (08) 8291 4122
Web: www.pallcare.asn.au
Email: pallcare@pallcare.asn.au

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