Continence care in palliative care
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What is bladder incontinence?
Incontinence means not having full control over bladder function. It’s important to manage incontinence to reduce the risk of other problems, such as skin irritation, dermatitis and pressure ulcers.
There are different types of bladder incontinence (also called urinary incontinence):
- Stress incontinence – weakness in the bladder neck or urethral sphincter muscles causes small amounts of urine to escape when pressure builds up in the abdomen. For example when someone coughs, sneezes or gets up from a chair or bed. It’s more common in women but can happen in men too.
- Urge incontinence – when the bladder muscle doesn’t work properly, people may need to empty their bladder urgently and frequently. Not drinking enough and having drinks containing caffeine can make urge incontinence worse.
- Mixed incontinence – people can get stress and urge incontinence together.
- Overflow incontinence – damage to the nerves means the bladder doesn’t empty properly. This weakens the bladder muscles so urine leaks out.
- Passive incontinence – neurological diseases can damage the nerves so the person is unaware that they’re passing urine.
What causes bladder incontinence?
There are many different causes of bladder incontinence. Someone might have more than one factor contributing to their symptoms. Possible causes of bladder incontinence include:
- problems getting to a toilet
- other health problems
- urinary tract infections (UTIs)
- some medicines.
Problems getting to a toilet
People living with a terminal illness may not be physically strong enough to get to the toilet without help. Or they may have problems removing their clothes quickly enough. Some people may be confused or have problems communicating, so they find it difficult to let others know they need to empty their bladder. Delays in getting help can mean that someone isn’t able to get to a toilet or commode in time to avoid leaks or incontinence.
Other health problems
Some health problems can cause bladder incontinence or make symptoms worse. These include:
- neurological diseases, such as stroke, multiple sclerosis, spina bifida and Parkinson’s disease – these can damage the nerves, which means the bladder can’t function properly
- obesity – this puts pressure on the bladder, weakening the muscles and nerves
- constipation – a full bowel can press on the bladder making a person feel they need to pass urine more often and urgently; straining to open the bowels can weaken the pelvic floor muscles
- cancer – the tumour may press on the bladder; spinal cord compression is an emergency and can damage the nerves that control the bladder
- prostate problems in men – enlargement or cancer of the prostate can cause the urethra to narrow
- in women, damage to the pelvic floor muscles caused by childbirth and the menopause.
Urinary tract infections
Any part of the urinary tract can become infected – the urethra, the bladder and the kidneys – causing urinary problems. Women are more likely to get urinary tract infections (UTIs) than men because the urethra is shorter and bacteria can reach the bladder or kidneys more easily.
Most symptoms are mild and pass within a few days, but others may need treatment with antibiotics. Signs and symptoms may include a high temperature, feeling unwell or confused, strong smelling or cloudy urine and pain in the lower abdomen or back. Report any symptoms to the person’s GP.
Medicines
Some medicines, such as opioids and sedatives, may cause bladder incontinence. But there’s little evidence that stopping the medicine will improve someone’s continence. This is because people often have other health problems and risk factors that may be causing their symptoms.
How is bladder incontinence managed?
The GP, or continence team if there is one, will find out what’s causing someone’s incontinence and suggest ways of managing the symptoms. If infection is the cause, they may treat it with antibiotics.
Speak to the person, and the people close to them if they wish, about how they would like to manage their continence problems. Being involved in decisions can help to maintain their dignity and feelings of self-worth. Options for managing urinary incontinence include:
- disposable absorbent pads worn inside the underwear
- using the toilet at planned times
- urine collection bottles
- in men, penile sheaths (external catheters or condom drainage devices) - these are similar to condoms and drain urine through a tube into a collection device or bag
- in women, external catheters use suction to draw urine away from the body and into a collection device
- medication
- catheters.
Catheters can increase the risk of infections and other complications so the healthcare team will usually suggest other options first. But they may be helpful for people who find it difficult or painful to get to and from the toilet or commode.
What is bowel incontinence?
There are different types of bowel incontinence (also called faecal incontinence):
- Urge incontinence – someone gets the urge to empty their bowels but with little warning.
- Wind (flatus) incontinence – someone can’t tell whether they need to pass wind or stool.
- Passive incontinence – the person doesn’t know when they need to empty their bowel or that they have emptied their bowel.
- Anal and rectal incontinence – when the muscles or nerves in the rectum and anus are damaged, causing leaks.
- Overflow incontinence – if someone is constipated and the bowel is blocked with hard stool, watery stool can leak around the blockage. People often mistake this for diarrhoea.
What causes bowel incontinence?
There are many different causes of bowel incontinence. Someone might have more than one factor affecting their incontinence. Possible causes of bowel incontinence include:
- problems getting to a toilet
- other health problems
- some medicines.
Problems getting to a toilet
If someone has a disability or isn’t strong enough to use the toilet without help, they may not get there in time. Communication and sensory problems can also make it difficult for people to ask for help in time to avoid leaks or incontinence.
Other health problems
Health problems that can cause bowel incontinence or make symptoms worse include:
- damage to the muscles in the anus or rectum – someone may have been born with this or they may have damaged the muscles, for example during childbirth
- neurological diseases, such as stroke, multiple sclerosis, spina bifida or Parkinson’s disease – these can damage the nerves controlling the bowel
- spinal cord compression – this is an emergency and can affect the nerves that control the bowel
- long-term constipation causing overflow incontinence
- stool changes, such as diarrhoea caused by infection or inflammatory bowel disease.
Medicines
If someone overuses laxatives, this can cause bowel incontinence or make it worse.
How is bowel incontinence managed?
Options for managing bowel incontinence include:
- disposable absorbent pads worn inside underwear
- disposable bed pads
- anal plugs – these help prevent leaks and can be kept in place for up to 12 hours, but some people find them uncomfortable
- a temporary collection device inserted into the rectum or attached to the skin around the anus
- medicines, such as loperamide to treat diarrhoea or laxatives to treat constipation.
Speak to the person, and the people close to them if they wish, about how they would like to manage their symptoms.
How does continence change towards the end of life?
In the last few weeks or days of life, many people have symptoms of bladder or bowel incontinence. The healthcare team will look at someone’s individual symptoms and make sure any treatment meets their needs and wishes.
At this stage, bladder and bowel incontinence can be managed in the same ways as we’ve listed above. The focus will be on making sure the person is comfortable and helping them keep their dignity.
In the last few hours of life, the bladder muscles may relax. Absorbent pads on the bed may be the most comfortable option for absorbing urine and helping to keep the person’s skin dry.
If someone has a full bladder or a blocked bowel, they may feel agitated and restless. In some people, inserting a urinary catheter can make them more comfortable, whereas in others, a catheter can cause more discomfort.
It’s important to meet the person’s wishes and involve the people close to them in decisions about managing their symptoms. The GP, district nurse or specialist nurse can help you support the person and those important to them. They can also answer any questions family and friends may have about what to expect.
How can I help someone with bladder or bowel incontinence?
Incontinence can be embarrassing and distressing. It’s important to help people keep their dignity as much as possible, while making sure they’re comfortable.
Person-centred care
Involving the person in their care can help them feel more in control. You can help them keep their independence by encouraging them to do as much as they can themselves. Remember that someone may feel too embarrassed to ask for help when they need it. Treating the person with compassion and respect can help them keep their dignity.
If someone has communication problems, they may find it hard to let anyone know they need to use the toilet and they may become agitated or restless. Getting to know the person well can help you recognise the non-verbal signs that they need help to empty their bladder or bowel.
Respond quickly when someone needs to empty their bladder or bowel. Help them get to a toilet or use a bedpan and make sure they have enough time and space to fully empty their bladder or bowel.
Some people may need equipment to help them use the toilet, for example if they have pain, mobility problems or confusion. The GP, district nurse or specialist nurse can refer them to an occupational therapist, who can give advice on equipment at home, such as handrails, commodes and hoists. Making sure the person is wearing clothes that are easy to remove can also help. We have information for the public on getting equipment.
Protecting the skin
Ongoing contact with moisture and urine damages the skin’s natural protective layer. Keeping the skin clean and dry is important for comfort and to prevent further problems, such as pain, skin irritation or infection.
People living with a terminal illness may be more likely to get sore, inflamed skin caused by repeated contact with urine or faeces. This is called incontinence-associated dermatitis. If it’s not treated, it can lead to skin infections and pressure ulcers.
You can help someone avoid skin soreness and other problems by keeping the skin clean and dry. Barrier creams or films may also help. Soap and water can break down the skin’s protective layer so use pH-balanced cleansers that won’t damage the skin.
The GP or district nurse can prescribe barrier creams and films. Be aware that thick creams can stop incontinence pads absorbing fluid and so may cause more skin damage. Warn people that barrier products may contain paraffin, which is flammable, so they will need to take care if they smoke or if they’re near an open flame. Paraffin can build up in clothing or bed sheets and may not be fully removed with normal washing.
Supporting family and friends
If someone is nearing the end of their life at home, their family, friends or carers may find it hard to cope with managing incontinence. You can help family and carers feel more prepared by talking about any practical issues. For example, they may need to change and wash bed sheets more often. Explain that the person will gradually drink less in the last few days of life, so their urine may be dark in colour and have a strong smell. This is nothing to worry about. Families, friends and carers can speak to the district nurse or specialist nurse about any support they may need.
When should I ask for help?
Contact the person’s GP, district nurse or specialist nurse if they have:
- skin damage or wounds that are caused, or being made worse by, incontinence
- blood in their urine
- bleeding from the rectum
- recurrent urinary tract infections
- pain in the lower back
- mucous in stools.
These could be signs of infection or another problem.
If the person has cancer and develops new bladder or bowel incontinence, consider spinal cord compression. If you have any concern that they might have spinal cord compression, contact their GP, hospital oncology team or palliative care team immediately.
Useful resources
Key points
- Bladder and bowel incontinence are common in people living with a terminal illness.
- Incontinence can be embarrassing and it’s important to help people keep their dignity.
- There are ways of helping people manage their incontinence, such as planning regular visits to the toilet and using products such as disposable pads.
- It’s important to keep skin clean and dry to help prevent pain, skin irritation and infections.
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Disclaimer
This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.
The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.
