Making a treatment decision

Weigh up the pros and cons

There are many treatments available that may prevent people from dying. These are often called life-prolonging treatments.

These treatments may be used when it is expected that you will recover and the treatment would therefore be temporary. There are situations where recovery does not or cannot occur and then the treatment would be necessary for the rest of your life, such as a breathing machine or kidney machine (dialysis).

In Australia, a person or their decision-maker cannot demand treatment. Doctors will consider which treatments may potentially offer benefit to the person in terms of prolonging life, improving or restoring function or treating symptoms.

How do I decide if a life-prolonging treatment is right for me?

You need to weigh up the potential benefits (help) and burdens (harm) from the treatment as it relates to you. This is usually a hard decision, and there is no 'right' answer.

Think about how the treatment would fit within your life goals, values and beliefs. You have a right to say 'no' to any treatment if you do not feel it is right for you. If you do decide to say 'no' to a particular treatment, you will continue to receive other medical care. You will not be abandoned by the doctors and nurses looking after you.

Discuss your particular illnesses and treatment options with your doctor, and ask how such treatments may help or harm you. You also need to consider how the treatment fits with how you want to be cared for. One option you might be able to consider is to have a trial of the treatment your doctor is proposing. You can stop the treatment if it does not meet your needs.

The benefits of a life-prolonging treatment might include living longer, and improving the quality of your life. But everyone is different, and the likelihood of success will depend on your particular medical circumstances.

The potential burdens of treatments might include more pain and suffering, distress, the possible need to be in hospital or have regular medical appointments and the possibility of prolonging the dying process. Of course, these will also depend on your medical and personal circumstances.

Planning and making decisions about life-prolonging treatments can be emotionally difficult for you and your family. But it can also be comforting: if your loved ones ever need to make decisions on your behalf, they will know what you would want. And you can feel confident that your wishes are known and understood by those closest to you.

Your doctor, nurse, or other health or care worker can help you learn about these treatments and can help you decide.

This treatment may be used if your heart or breathing suddenly stops. If the heart stops, it is called a 'cardiac arrest'. During CPR, pushing hard on the chest creates an artificial heartbeat, and air is pushed into the lungs by blowing directly or down a tube at the mouth. Electric 'shocks' to the chest may be used to try and restart the heart or to return the heart rhythm to normal. Other medications may be used to try and improve the heart function.

If CPR is not started and done properly within about five minutes of the heart or breathing stopping, permanent brain damage will occur. If the heart and breathing cannot be restored, the person will die. If the heart stops and CPR is not done, a person would remain unconscious and would die.

Even if CPR is started early and done correctly, it often doesn't work. Less than 1 in 5 people who receive CPR survive and return to their previous normal life and normal level of function. And for many people with a serious illness, such as cancer, Alzheimer’s, dementia, advanced lung, heart or kidney disease, or advanced age, the likelihood of success is even lower. This is different to what is often seen on t.v. shows and movies.

The potential benefit of CPR is that it can stop a person from dying. Young and healthy people who may have been involved in an accident, or drowning, or may have had a heart attack have a higher chance of survival. If CPR is provided early and effectively, and if the cause of the heart or breathing problem can be fixed, there may be a complete recovery.

The possible burdens of CPR in people who survive the resuscitation include broken ribs, being placed on a breathing machine in an intensive care unit for a period of time afterwards, and permanent brain damage. Most people who survive will need to spend a long time in hospital. They may not make a full recovery or may die during this time. If a person has a serious illness, even if the CPR is initially successful, usually the heart or breathing stops again. In certain circumstances, CPR may only prolong the dying process.

If a person stops breathing, it may be possible to artificially support their breathing. A ventilator (breathing machine) has a tube that is inserted either via the mouth into the lungs or into the windpipe (called a tracheostomy). A ventilator is often required during a major illness like severe pneumonia or injury from a serious car accident. The person can then be kept alive while they are recovering. In these situations, artificial ventilation is often a short-term treatment and people may make a good recovery.

But there are other circumstances where breathing may need to be supported forever. Someone who has permanent, severe lung disease, or a muscle disease such as motor neurone disease, or who may have permanent brain damage following an accident might need a ventilator for the rest of their lives. In these circumstances, the person would have a tracheostomy (tube into windpipe) and be connected to the ventilator (breathing machine). The ventilator may be required all of the time, or a person might be able to have short periods of time off the machine. In this situation, it may be difficult to live at home. A person may not be able to swallow and eat normally and may not be able to speak normally. The breathing machine cannot treat the cause of the breathing failure. Sometimes all that happens is the dying process is prolonged.

At other times, it is possible to use a nose or full face mask (rather than a tracheostomy), which is then connected to the ventilator. This is referred to as non-invasive ventilation. It is usually used where ventilation is not required all of the time, as the mask can easily be removed or applied as required.

Often, the long-term outcome can be hard to know at the beginning of an illness. People may decide to begin treatment with tubes and breathing machines and see how things go. If it becomes obvious that a reasonable recovery is not possible, a person (or often, their decision-maker or nurse) may decide to stop the treatment and allow death to occur in a peaceful way. The treating doctor would give medications to keep the person comfortable.

If a person has an illness that is likely to affect their breathing in the future, it is important to discuss these treatments with a doctor and loved ones, so they understand a person's preferences. The conversation might include a trial of treatment to see how things go for a while, to help shape a decision whether to continue or to stop.

A feeding tube can be inserted via the nose into the stomach (nasogastric tube) or directly into the stomach (PEG tube) to provide food and water.

A feeding tube might be a good idea in cases of illnesses (for example, stroke) where swallowing is affected. The tube might be inserted temporarily where recovery is expected, or permanently where the ability to swallow will not improve enough to return to normal eating and drinking. A person may feel that their quality of life is otherwise reasonable and they would like to have a long term feeding tube.

As part of the natural process of dying, like in cases of advanced cancer and dementia, people lose the desire to eat or drink. This is normal. Dehydration may occur but is not unpleasant. (This is unlike thirst in a normal situation). Many people in this circumstance can swallow. In these circumstances the use of a feeding tube may not help, as it cannot change the underlying disease processes, and usually does not stop death from occurring.

Some side effects can be associated with tube feeding. The need to insert tubes can be uncomfortable, and the tubes may need to be replaced from time to time. Tube feeding can cause stomach distension and discomfort, and too much fluid in the body. The risk of developing pneumonia and breathing issues is usually higher when a feeding tube is used.

Sometimes, a feeding tube just prolongs the dying process, and be very distressing for the person and their family. Especially in cases of advanced dementia, there may be a need to use medication to sedate a person, or to restrain their arms so that the person does not pull their tube out.

Feeding is a chemical mixture of nutrients. The amount of fluid in the body and the level of some chemicals in the blood need to be closely monitored, using blood tests from time to time.

If a person is unable to swallow enough food and fluid to maintain nutrition and a tube feeding is not done, the person will die. This may happen quickly or more slowly, depending on the person, whether they can swallow at all, and what is wrong with them. They usually do not feel thirsty or hungry. Usually the person will gradually become unconscious. If the mouth becomes dry it is possible to moisten the lips with fluid on a swab or with sips of water or ice. Medications are used if needed to treat any pain or discomfort that occurs during the dying process.

Dialysis is used to replace the function of kidneys that are failing. Normal kidney function removes waste products and excess fluid from the body, which is important for good health. If the kidneys fail, waste products and fluid will gradually build up, causing a person to feel sick, and eventually die. Dialysis may be provided to help some of these problems.

Dialysis is provided through tubes that are inserted into the arm with a special blood vessel called a fistula. It is then connected to the kidney machine which removes waste products from the blood. This type of dialysis (called haemodialysis) usually involves being connected up to the machine for several hours, three times per week.

In some people, a tube can be inserted into the abdomen. Fluid is introduced and then removed, which also removes waste products. This is called peritoneal dialysis.

The potential benefits of dialysis include the possibility of living longer, feeling better and being more mentally alert. But dialysis cannot reverse the underlying medical problem that has caused the kidneys to stop functioning properly. For many people, especially for older and sicker people, dialysis is likely to be a lifelong treatment. But in some circumstances the kidneys may improve so dialysis can stop.

Dialysis can cause problems. It's time consuming and can be quite inconvenient for some people, especially if there are long distances to travel to dialysis centres. Dialysis also cannot completely replace normal kidney function, so many people with kidney failure on dialysis will still feel sick. Though the person may feel unwell before dialysis, they may feel tired afterwards as well. People on dialysis generally need to be very careful about their diet and control their fluid intake. Infection and discomfort can occur at the site of tube insertion. In older people, especially those with other serious illness, dialysis may not even help them to live longer, or may cause earlier death from complications.

If the kidneys have failed and dialysis is either not provided or it is stopped, the waste chemicals in the blood will build up. The person will become drowsy, then become unconscious and die.

Palliative care refers to care that improves quality-of-life for people and their families associated with life-threatening illness. It is particularly concerned with treating symptoms and supporting people and their family.

It helps people, family and others to live as fully and comfortably as possible.

Care includes medications such as pain relief and sedation, but it can also include things such as environment (like surroundings or music), spiritual needs, and social and psychological support, including who might be present to support you through the dying process.

Analgesic drugs are painkillers. They manage pain quite well, but they also tend to make people sleepier, feel less alert and even slightly confused. This might not a bad outcome if your main focus is on complete control of their pain. Other people may prefer less pain control but more preservation of alertness and an ongoing ability to fully interact with staff and family. These issues should be discussed with a doctor, who can work with you to provide the right amount of medication.

You can learn more about palliative care on the Palliative Care Australia website.

These are just a few of the treatments choices that may be encountered during a serious illness. The benefits and burdens of these should be considered in light of your goals, values and beliefs. Other common treatments include chemotherapy or radiotherapy for cancer, blood transfusions, antibiotics and surgery. Treatments depend on your particular medical condition - your doctor can explain them to you. You may want to decide whether you'd prefer to be admitted to hospital or to remain at home in certain circumstances. Although it may not always be possible to meet all of a person's requests, your doctor and family will try to uphold your values if you tell them your wishes.

This information was produced by HammondCare in partnership Advance Care Planning Australia.
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