Decisions about Treatment Ngā whakatau maimoatanga

Simplifying medication In the final stages of an illness, the effort required to swallow tablets can become stressful and exhausting. We usually review their medication and discuss stopping those that are no longer beneficial or necessary. If swallowing becomes difficult we are able to put essential medications (e.g. pain relievers) into a syringe driver which injects the medication continuously into the skin (see our leaflet ‘Managing Pain in Palliative Care’).

24 hour contact Please contact your GP or district nurse. Advice is also available 24 hours a day, seven days a week from the hospice.

Decisions about treatment

Treatment needs change as disease progresses. What gives relief in the early stages can become less effective as the patient becomes less well. We realise decisions about treatment can be very difficult and while this leaflet sets out to explain some of these decisions, your doctor or nurse can give you more detailed information.

Cardiopulmonary resuscitation (CPR) CPR is an emergency treatment that attempts to restart the heart when it has unexpectedly stopped beating (cardiac arrest). CPR is more appropriate when the cause of the cardiac arrest is treatable e.g. a heart attack. People with advanced disease such as cancer generally do not have a treatable cause and therefore resuscitation is usually unsuccessful. CPR may be undignified and as it can cause injury such as bruising, broken ribs, punctured lung and/or brain damage it is unsuitable for most palliative care patients and therefore not routinely performed. CPR is discussed with patients and their family/whānau on admission.

Intravenous (IV) / Subcutaneous fluids

A drip (IV/Subcutaneous) is often used to help administer drugs or replace fluid. However, as disease progresses it is normal for patients to eat and drink less. Eventually they may be unable to swallow fluids at all. This is part of the natural dying process and the body adapts to the reduced intake by conserving fluids. Additional fluid can interfere with the natural process and may cause discomfort such as swelling and shortness of breath. Therefore, fluid via a drip is not routinely administered in palliative care. Regular mouth care to keep the tongue and lips moist is the most effective way to keep the patient comfortable when they are no longer eating or drinking. Your nurse can show you how to provide mouth care.

Eating

Appetite usually decreases naturally in advanced illness as patients become less active. Supplemental feeding via drips or tubes is not recommended for patients in the final days of their illness. Instead, patients are offered suitable fluids and/or food when they feel like it

Antibiotics

Patients can develop infections such as pneumonia when they are close to dying. Reduced activity due to weakness, inability to breathe deeply or cough properly can worsen this. Our priorities are to reduce distressing symptoms related to the infection and maintain comfort. Antibiotics usually prove ineffective when someone is close to dying

Oxygen

Some patients with shortness of breath may be given oxygen via plastic tubing to the nose or a face mask. Oxygen can be helpful but it can make the mouth and nose feel dry and irritated, restrict mobility (the patient needs to remain close to the oxygen source), and the mask/tubing can be a barrier to communication. Our preferred option is to offer medications which relieve the feeling of breathlessness and can be just as effective as oxygen therapy.

Symptom Management Te whakahaere putanga

Weakness and tiredness are very common problems for many people. They can be caused by the illness itself or be a side effect of medication or treatment and can affect all aspects of life so it is important to get help

  • Plan difficult activities for the time of day when you feel your best
  • Prioritise things that are important to you and save your energy for them
  • Pace yourself – take regular rest periods • Take gentle exercise as able
  • Eat a balanced diet to help to maintain your energy levels, however it is also important to enjoy your food and eat what you can
  • Talk to your doctor or nurse. They may be able to identify a treatable cause

Low Mood or Anxiety Many people experience a roller coaster of emotions that might include numbness, fear, anxiety, anger and low mood. There may be worries about family coping, money or housing. It can be very hard to talk to people close to you about what is happening and how you are feeling:

  • Accept that there will be good and bad days. Try to be honest about your feelings
  • Find something to hope for – a small project, a holiday or special times spent with family and friends
  • Understand that those closest to you will also need time to adjust to what is happening
  • Be honest with friends and family about what will help you most e.g. meals, gardening, childcare, company • Talk to your doctor, nurse, pastoral carer or social worker

Symptom Management
Many families/whānau worry about managing symptoms that may arise as illness progresses. This leaflet provides information about some of the more common symptoms. Pain is covered in a separate leaflet.

Nausea and Vomiting
Feeling or being sick can be due to the illness itself or can also be a side effect of some treatments or medicines:

  • Eat little and often
  • Get someone else to prepare food and avoid cooking smells if possible
  • Avoid strong smelling, spicy or greasy foods
  • Sip ginger drinks or suck boiled sweets
  • An anti-sickness tablet before meals can be prescribed
  • Try to relax as anxiety can make nausea worse
  • Avoid strong fragrances that may trigger nausea

Poor Appetite Food plays an important part in our lives so it can be upsetting when it becomes difficult to eat. Many people find there are times when they are not hungry and do not feel like eating:

  • Choose foods you really enjoy
  • Eat when you feel like eating – you don’t have to stick to meal times
  • Alcohol may help your appetite – try a small glass half an hour before a meal if desired
  • Make sure you have good pain relief to cover meal times
  • Use distractions such as music or television when eating

Sore or Dry Mouth If your mouth is sore, choosing foods carefully can help:

  • Have milky drinks rather than fruit juices
  • Eat soothing cold foods like custard, yoghurt, jelly and ice cream
  • Let hot foods cool down slightly
  • Avoid highly spiced foods such as curries, acidic foods such as tomatoes and dry foods such as toast
  • Use a teaspoon or straw to avoid food coming into contact with the sorest part of your mouth
  • Use a small soft toothbrush
  • Speak to your doctor or nurse if you develop mouth ulcers or a white coating on your tongue.
    This might be oral thrush which is treatable If your mouth is dry:
  • Maintain regular mouth care – every 2 hours
  • Sip water or cool drinks frequently
  • Suck fresh pineapple chunks
  • Use a small water spray
    Constipation
    There are many causes of constipation. Medicines such as morphine, reduced food and fluid intake and decreased mobility can all cause constipation:
  • Drink enough fluid, 6-8 cups every day if you can
  • Include vegetables and fruit such as kiwifruit and prunes
  • Keep as active as you can
  • Take laxatives regularly if prescribed
  • Talk with your doctor or nurse if constipation persists Pressure Area Problems Some patients who are weak and spend most of their time in bed or a chair are prone to developing pressure area problems (skin breakdown). Bony areas such as buttocks, hips, heels and elbows require special attention:
  • Change position frequently – even a small change of position might help
  • Tell your nurse if you notice redness of any area There is specialist pressure relieving equipment available that may help

Breathlessness
Breathlessness affects people in different ways and can be distressing:

  • Try to balance rest and activity. Let others help with more strenuous tasks
  • Sit down and dress in stages
  • Climb stairs slowly
  • Use extra pillows or a backrest in bed if lying flat is uncomfortable
  • Sit upright
  • Open a window or use a fan
  • Drop your shoulders as you breathe out. This will help control your breathing
  • A small dose of fast acting morphine elixir can be helpful if prescribed
  • Try something distracting such as listening to music
  • If you have tried the above without any improvement, you should contact your nurse or GP