Incontinence

Incontinence is lack of control of the bladder (urine) or bowels (stool). With any type of incontinence, it’s important to provide good skin care. Skin breakdown can be caused by pressure and prolonged contact with urine or bowel movement. Clean and dry skin is a good way to lower the risk of this skin breakdown.

Urinary incontinence

When you can’t control the flow or release of urine it’s called urinary incontinence. This can sometimes be temporary, for example, when it’s due to an infection. However, when it lasts longer or is the result of the progress of a health condition, the best choice may be to use a catheter. A catheter is a flexible tube that is put in the bladder so the urine can drain into a specially designed bag. If this is the best option for you, your palliative and end-of-life care team will talk to you about how to look after it. You can also find help at Indwelling catheter: Care instructions.

Care and comfort

• Consider special incontinence garments such as Stayfree, DryPlus, Attends, Poise, Ensure Guards. These are usually available at drugstores and supermarkets. They keep the bed dry and should be changed often. Talk to your home and community care nurse for advice. You may be able to get financial assistance to cover these costs. Talk to your palliative and end-of-life care team if you have questions.
• To lower the risk of skin breakdown or irritation, use a water-repellent cream containing zinc oxide and silicone. For example, Zincofax, Penaten Cream, or A&D Cream. Apply the cream as needed whenever you change the incontinence garment. A silicone and zinc oxide spray such as Silon, may be available and may be easier to use.
• Wash your hands before and after touching the catheter, drainage bag, incontinence garments or washing the area where the catheter enters the body.
• Wash the area where the catheter enters the body at least once a day with soap and water. Gently pat it dry. This helps to protect the skin and prevent infection.
• Check the drainage tubing for kinks and make sure the drainage bag is below the level of the hips to help urine drain by gravity.
• Empty the drainage bag at least twice a day.

Ask for help if you notice:

• leaking around where the catheter enters the body
• blood in the urine
• diarrhea
• signs of bladder infection –
• urine becomes cloudy
• has an offensive smell
• fever

Constipation

Constipation means having difficulty passing stool or not having them as often as is usual for you. This can happen because of:

• medicines (such as opioids)
• less intake of fluids
• eating less
• low fibre in diet
• less physical activity

Stool is still produced even when you’re not eating. Constipation is uncomfortable and may cause serious problems. This is why preventing it is very important.

Someone with constipation may have pain in the abdomen (belly). Their abdomen may look blown-up or bloated. Often with constipation there’s a large amount of gas, burping, or feeling sick to the stomach (nausea). Occasionally headaches and confusion may also be present because of constipation.

Constipation must be assessed and verified by your home and community care nurse and doctor. They’ll check to make sure there is no obstruction that may be interfering with the passing of stool.

More about constipation:

• Stool may be dry and painful to pass.
• The person may have small hard bowel movements, but not enough stool to correct constipation.
• What may appear to be diarrhea may in fact be small amounts of runny stool escaping around the hard constipated stool.
• The doctor may prescribe a stimulant or laxative that can come in the form of a pill, liquid, or a suppository.
• Some people with constipation aren’t able to take or don’t respond to medicines or diet changes and may need an enema.
• Avoid bulk laxatives such as Metamucil. A person must drink 3 litres of fluid a day for these to be effective. Otherwise, they just make the problem worse.

Care and comfort

If you know what can cause constipation, you may be able to take steps to prevent it. Keeping the stage of the illness in mind, consider whether the following strategies might be tolerated.

• Keep a daily diary of bowel movements. Even if you have not been eating or drinking fluids much, contact your home and community care nurse if there hasn’t been a bowel movement in 2 days.
• Try gradually increasing the intake of fibre and whole grain cereals and breads. At the same time, a large amount of fluid must be taken to move the fibre through the system.
• Increase fluid intake.
• Hot drinks with caffeine in the morning can encourage bowel movements.
• Walk, exercise, or move about in bed.
• Avoid foods that can cause constipation such as chocolate, cheese, and eggs.
• Take the prescribed laxatives especially if also taking opioids.
• Eat a variety of fruits and vegetables, and drink fruit juices every day. Prunes and prune juice are good choices. The following fruit laxative may help you to take a variety of these helpful foods.

Fruit laxative (use dried fruit)

• 1/4 cup currants
• 1/4 cup dates
• 1/4 cup raisins
• 1/4 cup figs
• 1/4 cup prunes
• prune juice

Mix these together and eat about 2 tablespoons each day.

Bowel routine

Anyone using regular opioids for pain should also use a laxative. A daily basic bowel routine is also recommended for someone using opioids. The following is a suggested routine:

Take a bowel stimulant or laxative (for example, Senokot or Lactulose) 1 or 2 times each day.

• Laxatives stimulate increased bowel activity and help to create bowel movement.
• They can be purchased at the drugstore and their cost may be covered by a drug program.
• Talk to your home and community care nurse to find out which laxative is recommended.

Enemas

An enema is fluid inserted into the rectum to clean out the bowel. To give a small enema such as a Fleet enema, the same procedure is followed as for suppositories.

• Help the person into a position that will make it easy to insert the enema tube. The best position is lying on the left side, with the upper leg bent forward.
• Insert the tube gently into the rectum and squeeze the container.
• Let the person know that the enema may cause a feeling of pressure and cramps. Ask them to take deep breaths and hold the enema in as long as possible before letting it out.
• Go slowly but try not to stop if the person has only mild discomfort. Use the full enema or as much as the person can tolerate.

Ask for help if:

• there’s blood in or around the anal area or stool
• there’s no bowel movement within 1 day (24 hours) after taking a laxative
• there are persistent cramps or vomiting

Diarrhea

Diarrhea is loose or watery stool 3 or more times a day. There may or may not be discomfort. Diarrhea can be caused by infections, some medicines, surgery, fistulas, laxatives, side effects of chemotherapy, radiation therapy to the abdomen, or sometimes the underlying disease the person has.

Dehydration and low blood glucose (sugar) is a risk with severe diarrhea.

The body’s balance of salts and chemicals called electrolytes can be upset by diarrhea. Avoid giving only clear liquids for more than 2 days in a row.

Some foods can make diarrhea worse while other foods may help slow it. Avoid foods that may stimulate or irritate the digestive tract. For example, whole grain bread and cereal, fried or greasy food, nuts, raw fruits or vegetables, rich pastries, strong spices and herbs, caffeinated foods or drinks, alcoholic or carbonated beverages, and tobacco products. Very hot or very cold foods can trigger diarrhea.

Diarrhea can also be the overflow of liquid stool around hard stool. In this case, it should be treated as constipation. Ask your home and community care nurse about this possibility.

Ask for help if:

• there are 6 or more loose bowel movements more than 2 days in a row.
• you notice blood in or around the anal area or the bowel movement.

Care and Comfort

Eating food and drinking fluids is the best choice for restoring the fluid balance of the body when it’s possible.

Food and fluids

• Serve a variety of drinks and jelly products, such as Jello, as fluid choices.
• Aim for 8 to 10 glasses of fluids daily if possible. Sipping slowly helps fluids absorb better.
• Choose foods high in protein, calories, and potassium. Talk to your dietitian or home and community care nurse about the kinds of foods to choose.
• Try frequent small meals instead of 3 large meals.

Skin care

• Wash the anal area with mild soap after each bowel movement and pat to dry.
• Apply a water-repellent product to the anal area to protect the skin. For example, Zincofax, Penaten Cream, A&D Cream, Silon.
• Be calm when diarrhea occurs. Try to lower anxiety and embarrassment with the situation.
• Use protective pads on the bed as these can help to lessen embarrassment and help with clean-up.

Use a room deodorizer if odour is a problem.

People lose strength from weaker muscles after being in bed for a long time or as a result of their illness. It usually occurs gradually but can sometimes happen over just a few days.

For someone who’s been active and able to look after themselves, adjusting to the physical limits of a long illness can be hard. When you understand how weakness affects the body, you can plan your care better.

You may notice that they:

• are tired after activities that used to be easy – this is common
• need help to walk, bathe, dress, or may need to be cared for in bed
• have a hard time moving in bed and changing positions
• are frustrated and irritable with the physical limits and during situations that used to pass unnoticed

Care and comfort

Your care will focus on helping your loved one save energy and space out activities. Reassure them that you want to help. Someone who’s losing strength often becomes upset about needing or asking for help.

• Ask a member of the healthcare team to show you how to help them move so they can conserve energy.
• Put something near them that can be used to make a noise to call you when they need you. For example, a bell, a spoon and tin plate. Baby monitors also work well.
• Remind them that they’ll feel better if they limit activity by doing 1 thing at a time and to rest before doing any activity.
• Ask a member of your healthcare team if a walker, wheelchair, or other aids would help. You may be able to buy or rent equipment. Your healthcare team may also recommend places to rent or buy equipment and talk about financial help that might be available.

This content is adapted with permission from The Military and Hospitaller Order of Saint Lazarus of Jerusalem and the Canadian Hospice Palliative Care Association. A Caregiver's Guide: A Handbook about End-of-Life Care.

Everyone experiences nausea and vomiting at some point in their life. Nausea means feeling sick to the stomach and vomiting means throwing up. Nausea can happen anytime, even when a person is not thinking about food. Vomiting can occur even if nothing has been eaten or there’s been no nausea.

Many things can cause nausea and vomiting. These can include illness, medicines, certain foods, constipation, pain, bowel obstruction, infection, anxiety, and some treatments. Sometimes the cause has nothing to do with the illness and may be a different cause such as norovirus.

For someone with an advanced illness, the difference in their nausea may be how often and how intense it is. Often these are made worse by the weakness that come with the illness. You may notice that they:

• may feel sick and are unable to eat
• may be comfortable at rest but feel sick when they move
• vomiting occasionally or often (Keep a record of how often and how much they vomit.)
• may vomit up their medicines

If vomiting occurs in bed, position them onto their side so that vomit won’t be inhaled or cause choking.

Depending on the cause of the nausea or vomiting, the doctor may order medicines or other treatments to try.

Ask for help if:

• nausea and vomiting no longer allows them to eat or drink
• vomiting occurs more than 3 times an hour for 3 or more hours.
• blood or material that looks like coffee grounds appears in the vomit
• medicines are vomited
• unusual weakness and dizziness
• suddenly becomes unresponsive

Care and comfort

Reducing anything that might cause nausea or vomiting is the main focus in caring for someone in this situation. Providing medicines and treatments recommended by the doctor or healthcare team is also important to ease or relieve nausea and vomiting. You may want to consider giving these medicines before any activity or treatment that you’ve noticed causes nausea or vomiting.

Food and drink

• Try offering small amounts of favourite foods and fluids as tolerated. Keep a supply of clear fluids, ice chips, frozen juice chips, and ginger ale to offer in small quantities.
• Try cold foods - they usually have less odour or smells.
• Cooking smells may stimulate nausea. Try to keep these away from the sick person.
• Try bland foods such as crackers, toast, angel food cake, soft fruits, and yogurt. Avoid fried, greasy, or spicy foods.

Comfort measures

• Help the person to rest sitting up for an hour after eating to help food move through the stomach.
• Freshen their mouth with a non-alcohol mouthwash or club soda.
• Encourage them to take anti-nausea medicine regularly, as directed by the home and community care nurse or doctor. • Ask your doctor, home and community care nurse, or pharmacist if complementary care such as herbal remedies might help.
• Always keep clean basins close by. If vomiting occurs, replace the basin right away.
• Open windows or use a fan to see if fresh air or a breeze helps to reduce the feeling of nausea.
• Be cautious with scents. Encourage anyone who will be close to the person to avoid using perfume, aftershave, or scented deodorant.

This content is adapted with permission from The Military and Hospitaller Order of Saint Lazarus of Jerusalem and the Canadian Hospice Palliative Care Association. A Caregiver's Guide: A Handbook about End-of-Life Care.

When someone complains of physical pain, it’s usually at a particular location in the body. However, a general feeling of not being well is sometimes experienced and described as pain or discomfort.

For someone in pain, finding out about what it feels like, where it is, and how bad it is will help you to help them. It’s also important to know that people explain and talk about pain in different ways. Pain can be more than just physical. It can also be emotional, social, spiritual, and many other things. This is often described as “total pain.”

Points to remember:

• Assessing pain is an ongoing process. While you don’t want to focus only on pain, ask about how much and what kind of pain regularly. Try to know as much as you can about the person’s pain, what works and what does not at any given time.
• The feeling of pain may be worse if they’re having nausea or other physical symptoms.
• Worry, fear, boredom, or loneliness may make the experience of pain worse. Try to explore and attend to these needs first before adjusting pain medicines.
• The more you understand about the pain the better you’ll be able to help provide comfort. You’ll also be better able to see if the help you’re giving is working.

No one is more expert about the pain than the one who is feeling it. If they complain of pain, believe it. Even if they don’t tell you that they’re in pain, be observant. Look at how they’re reacting to things around them or how they’re moving. Ask about any signs of discomfort you see.

The experience of pain is different for everyone. Use the following questions to find out more about the pain. This information will help you tell the doctor or home and community care nurse more about the pain so that steps can be taken to take care of the pain. There may be more than 1 pain so ask the same questions about each pain.

Location

• Where is the pain? Is it in one place or is it all over?
• Can you point to where the pain is? Is it deep inside or on the surface? Is there more than one type of pain?

Time

• When did this pain start – an hour ago, yesterday, or months ago?
• How often do you feel this pain?
• How long does the pain last – minutes, hours? Does it come and go, or is it there all the time?

Type and intensity

• What does the pain feel like? Can you describe it? For example, is it stabbing, burning, aching, throbbing, or piercing?
• How much does it hurt? Can you give me a number for the pain from 0 to 10, where 0 is no pain and 10 is the worst yet?

Other

• What could have started the pain – was it movement, eating, pressure, the way you’re lying or sitting?
• What makes the pain go away – rest, massage, movement, meditation, distraction, medicine?
• Does this pain limit your normal activities? How much?
• Other than this pain, how are you? Do you have any other symptoms or discomfort?

Using a pain rating scale every day can give valuable information about the pain experience over time. This information can be put on a graph to track the pain. You may also want to keep a pain diary if the rating scale by itself doesn’t capture what is happening. From this, your home and community care nurse can help you decide if you should contact the doctor for a change of medicines.

Managing pain with medicines

Someone who has constant pain will usually need regular pain medicine to control it. This means they’ll get medicine at scheduled times during the day or day and night (around the clock). Others will need pain medicines as needed, such as before they are getting up and dressed.

It’s often not possible to get rid of this type of pain completely. The goal of pain management is to keep someone alert, with the pain under control as much as possible. It takes time and testing to get the best combination of medicines that will keep a person feeling more comfortable. You can help to make this process shorter by regularly recording positive or negative effects of a new medicine and talking to the home and community care nurse and doctor about the results.

Breakthrough pain

When someone is on regular pain medicine at regularly scheduled times during the day or day and night (around the clock), they may need additional doses for pain before their next scheduled dose. These are called breakthrough doses. These may be needed with activity, such as when getting up to dress or having care done. A record of the pain, the regular scheduled pain medicine and breakthrough doses will help the prescriber adjust the dose if necessary.

• Tell your doctor and home and community care nurse if you’ve had to give breakthrough medicine at hourly intervals 3 or more times over 24 hours, and if this doesn’t relieve the pain.
• Write it down to keep track of every time breakthrough medicine is taken, and why. This helps the doctor adjust the regular dose if needed.
• If you frequently have pain an hour or more before your next dose, let your community care nurse know because you may need a different pain order.

Ask for help if:

• a new pain occurs that is different from the person’s usual pain
• pain continues after you have given 3 breakthrough doses in 24 hours
• there’s a rapid increase in the intensity of the pain
• there’s sudden acute pain
• you notice sudden confusion

Care and comfort

When pain is constant, give the medicine on schedule even if there’s no pain at the time. This helps make sure the pain stays away. Once the pain returns, it becomes more difficult to control. Using a timer can help you keep track of the schedule for pain medicine.

Plan to give physical care after a medicine has started to work to reduce discomfort. Most pain medicines take effect within 30 to 40 minutes. Keep this in mind especially if you need to change a dressing or move the person in bed. Taking pain medicine by mouth on a regular schedule is just as effective as injections. Injections, suppositories, or patches are considered when someone can’t take medicine by mouth.

Non-opioid pain medicines

There are several medicines that can be useful in helping manage pain. These include acetaminophen (Tylenol) and non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil, Motrin), naproxen (Aleve), or ketorolac (Toradol). When paired with other treatments like massage, acupuncture, ice or heat, these medicines may make the person you are caring for more comfortable. It’s important to know the maximum daily dose for these medicines. The daily maximum dose includes all medicines combined. For example, if you give acetaminophen with codeine and later give plain acetaminophen. You’ll need to add both doses of acetaminophen to include in your daily amount given. You can take some steps to make pain relief more effective and reduce unwanted effects.

• Take medicines as directed on the packaging or by your healthcare provider.
• Watch for signs of bleeding or bruising, as some of these medicines can affect blood clotting.
• Offer the pain medicine with food to lessen stomach upset unless you are told otherwise.
• Try to give acetaminophen (Tylenol) on an empty stomach to improve the way it is absorbed.

Sometimes for nerve pain, a local anesthetic can be injected around nerves to block pain in that area. The results are variable and may be temporary or long lasting.

Opioid pain medicines

For chronic or long-term pain that is moderate to severe, opioids may help in keeping the person you’re caring for more comfortable. Learning about prescribed opioid medicine for chronic pain is important.

Short-acting and long-acting opioids

Short-acting opioids require a dose every 3 to 4 hours to keep a person in constant pain more comfortable. Some of the long-acting opioids last 12 to 24 hours. A patch that lasts for 3 days is also available for some people.

• If the person is not on long-acting opioids, set an alarm to wake yourself up for doses during the night. Otherwise, they’ll wake up in pain. It’s then more difficult to catch up to control the pain.
• Keep track of pain relief. If the person has been on a stable dose of pain medicine for 3 to 4 days, the doctor may consider prescribing a longer acting opioid.
• The pain must first be under control on short acting opioids for the long-acting form to work well.

Safety

• Remember that opioids are potent medicines and should be kept safely out of sight and out of reach of children and others.
• As with any other medicines, don’t talk in public about the fact that you have these drugs in your home. This helps lower the risk of someone trying to steal them.
• Have at least a 1-week supply of opioid medicines on hand.
• Ask your home and community care nurse about how to dispose of unused opioids. Don’t flush them down the toilet.

Possible side effects of opioids

Drowsiness

When a new opioid medicine is given for the first time, it may make that person extra sleepy for a few days. Remember that they may also be tired or exhausted from lack of sleep due to pain. Now, they may be able to catch up on sleep.

Let them nap when they want to. Just be sure you can rouse them. In the final days or hours of their illness, this may not be possible. Talk to your healthcare team for advice.

Nausea and vomiting

Opioids can cause an upset stomach (nausea) or even make a person throw up (vomit) when they’re first used. This usually goes away in a few days.

• Nausea and vomiting can also be an effect of other medicines the person is taking, the pain itself, or a result of the illness.
• Encourage resting in bed for the first hour or so after taking pain medicine.
• Ask your home and community care nurse and doctor about an anti-nausea medicine that could be taken for 3 or 4 days when starting a new opioid or having an opioid dose increase (also see Nausea and Vomiting).

Constipation

Opioids slow down the gut so constipation can be a problem for as long as the person is taking these medicines. Unlike sleepiness or nausea, this doesn’t go away in a few days.

• When taking opioids, it’s recommended to take a bowel stimulant and a laxative to prevent constipation.
• Tell your home and community care nurse right away if there’s any change in regular bowel routine.

Confusion

A person who is taking pain medicines, especially opioids, may feel a little confused. Tell your home and community care nurse if you notice this. The disease may be causing confusion as well so it will need to be assessed. If the confusion is more likely due to medicines, fluids, lower doses of the opioid medicine or changing to another type of opioid may help.

Myoclonus

This is a twitching or spasm of the muscles that the person can’t control. Myoclonus is a similar feeling to the one that can occur when you’re just about asleep and suddenly jump awake.

It’s not an unusual response to some medicines. The twitching is not related to a convulsion or seizure.

Tell your home and community care nurse if you notice that myoclonus is happening.

Tolerance

When you’ve been taking a medicine for a long time, your body can get used to it and you notice that it’s not working like it used to. This is called tolerance. Many people taking opioids for chronic or long-lasting pain will usually need a higher dose after a while. The dose of an opioid can be increased as needed by the doctor to manage the pain. Keeping a pain diary will help you and your healthcare team know when this may be needed.

Physical dependence and addiction

When your body depends on taking medicine regularly to manage or control constant pain it’s called physical dependence. When the medicine is stopped, the body will experience symptoms of withdrawal.

Addiction happens when there’s no physical need for the medicine. People may continue to take the medicine because of how it makes them feel or be unwilling to be without the sensation it gives.

One of the greatest myths about pain management is that people who are taking medicines for pain become addicted to them. People don’t become addicted to pain medicines that are needed for pain and used correctly.

Research shows that less than 1 in 100 hospitalized patients who get opioids for pain will become addicted.

Opioid toxicity

Food, water, and medicines that you take into your body are either used or turned into waste. Your liver breaks these down and your lungs, bowels, and kidneys get rid of the waste. Opioid wastes can build up in your body if you have kidney problems or are on high doses or long-term opioid pain medicine. This can lead to having toxic or harmful levels of wastes that don’t get cleared from your body (opioid toxicity).

With opioid toxicity, you’ll notice behaviour changes.

If the person you’re caring for shows signs of delirium or confusion, talk to your home and community care nurse right away.

Someone with delirium or confusion may be:

• agitated or restless
• confused about time and place
• drowsy or can’t fully wake up
• moan and ramble when speaking
• see, feel, or hear things that are not real (hallucinations)
• unable to concentrate or focus
• unable to remember recent events

They may also:

• sleep during the day and be awake during the night
• have bad dreams, nightmares
• jerks or has seizure-like movements of arms, legs, or face muscles
• have seizures
• pain when touched in a way not expected to cause pain

Your healthcare team may ask questions regularly to check to see if the person you’re caring for can remember and recognize people, events, and objects. These checks help to find early signs of problems.

Treatment for opioid toxicity

Getting rid of the extra opioids in the body is the best way to treat toxicity. Your healthcare team will discuss what options are best and try one or more of the following:

Give more fluids

• If the person can tolerate more fluids, giving them more to drink is preferred. This helps the kidneys flush out the toxins. If drinking more fluids isn’t possible, the healthcare team may consider using fluids through a vein or under the skin.

Change the type of pain medicine

• The doctor may switch opioids. Different opioids make different wastes. By switching from one kind to another, the body can continue to get rid of the waste.

Lower the dose of opioid pain medication

• If the kidneys are not working properly, the doctor may lower the dose of opioid.

Give other medicines to control symptoms

• The doctor may order medicines to control hallucinations, nightmares, or agitation until the body gets rid of the waste.

Managing pain without medicine

Pain can sometimes be managed using other methods that don’t include medicines. You may also want to try these along with medicines to achieve better pain control.

Stress and anxiety can make how someone feels their pain worse. When stress and anxiety is less, the level of pain that is felt may also be less. You may consider using:

• physiotherapy, massage, heat or cold
• therapies or behaviour treatment to reduce stress
• relaxation exercises, or yoga
• a referral to a professional for emotional support and coping strategies

Transcutaneous Nerve Stimulation (TENS)

Transcutaneous means through the skin. This treatment involves stimulating the nerves by putting small electrodes onto the skin near these nerves. A weak electrical signal is sent to the electrode. This mild electrical impulse can sometimes help lower the pain that some people feel. Talk to your home and community care nurse to see if this is something that might be right for the person you’re caring for.

The position of the electrodes depends on the area and type of pain. A physiotherapist or other member of the healthcare team who is trained in TENS can show you where to put the electrodes and how to use the TENS machine.

TENS electrodes should not be placed:

• over sinuses, eyes, and ears
• on sore, swollen, infected, or unhealthy skin
• near the heart
• on anyone with a pacemaker
• in an area where radiation is being given – avoid these areas for 10 to 14 days after radiation treatment is completed

Complementary therapy

There are a variety of complementary therapies that can help distract from pain and may offer pain relief. These include massage, guided imagery, music therapy, therapeutic touch, and many others.

One complementary therapy that some people have found to be helpful is acupuncture. This is a traditional Chinese treatment that uses sterile needles placed at specific places in the body to relieve pain.

Radiation can sometimes be used to shrink tumours to reduce a person’s pain and other symptoms.

Learn more about pain and how to manage it go to:

• Chronic pain
• Adult Pain: Treatment, management, and support

This content is adapted with permission from The Military and Hospitaller Order of Saint Lazarus of Jerusalem and the Canadian Hospice Palliative Care Association. A Caregiver's Guide: A Handbook about End-of-Life Care.

Shortness of breath, also called dyspnea, occurs when the body can’t get enough oxygen or the person has to make a strong effort to breathe. Either the lungs aren’t getting enough air, or there’s not enough oxygen getting to the blood stream. Shortness of breath has many causes, such as illness, anxiety, or pollution (including tobacco smoke).

Severe shortness of breath can be frightening for both the person experiencing it and anyone watching. When someone is short of breath you may notice:

• breathing is more difficult when moving or talking
• breath sounds that are moist and gurgling
• they have large amounts of thick mucus that they may not be able to cough up
• the skin around the mouth and nail beds becomes blue-tinged

Depending on the cause of the shortness of breath and the stage of the progressive illness, some treatment may be considered. Treatment may include medicine (oxygen, bronchodilators, steroids, opioids) and other therapies (positioning, chest physio) to help them breathe easier or feel more comfortable.

Care and comfort

Being short of breath can cause anxiety for both the person who is short of breath and those around them.

Calm and quiet surroundings

• Encourage the quiet presence of a calm supportive family member or friend to help ease anxiety.
• Ask visitors just to sit quietly and calmly so there’s no need to talk.
• Do whatever you can to help the person remain relaxed - tense muscles add to a feeling of breathlessness.
• Stay calm in the person’s presence. Your distress can make the person you’re caring for more anxious, increasing breathlessness.

Positioning and physical comfort

• Plan frequent rest periods between activities if the shortness of breath is worse with movement, washing, dressing, or talking.
• Help them to a position that makes breathing easier. Lying flat often makes shortness of breath worse. A high sitting position is often best. Put several pillows or a special support pillow at the back. Another helpful position involves leaning on a bed table or high table with the head resting on crossed arms.
• Consider using a humidifier to help loosen mucus, making it easier for the person’s cough to clear their airway.
• Avoid standing over or too close to the person as this can make them feel too closed in.
• Open a window or use a fan to help give a sense of more air.
• Remove tight or constricted clothing. Use a lightweight blanket as bedding.
• Try a recliner chair for sleeping - it keeps them in a semi-upright position.

Medicines and treatments

• Give medicines and other treatments as prescribed for shortness of breath.
• Medicines such as opioids may sometimes be prescribed to relieve shortness of breath.

Oxygen therapy

Sometimes oxygen can help make breathe easier and relieve some of the shortness of breath. Your doctor or healthcare provider may recommend oxygen therapy.

To breathe oxygen, most people use a nasal cannula. This is a thin tube with 2 prongs that fit just inside your nose. People who need a lot of oxygen may need to use a mask that fits over the nose and mouth.

Oxygen is often needed most during activity, such as getting in and out of bed, a chair, or the tub, on outings, and when walking. Oxygen is like a medicine. Use it only as prescribed. This may be 24 hours a day or only part of the time.

Care and comfort

A mask or cannula needs attention to be as comfortable as possible.

• The prongs of the nasal cannula must be in the person’s nose.
• Tighten the elastic on a mask so that it fits snugly on the person’s face.
• Place something soft such as small cotton pads or moleskin between the tubing and the skin to lessen irritation.
• Oxygen can dry the inside of the nose. A water-based, non-prescription lubricator gel (such as Secaris) can help.
• Remove and clean the cannula or mask as needed.

Safety

Oxygen can fuel a fire which burns very hot.

• Do not smoke or light matches in a room where oxygen is in use.
• Do not use oxygen around a gas stove. Keep at least 2 feet away.
• Do not use oil-based products such as Vaseline or mineral oil close to oxygen.

Oxygen supply and maintenance

• Make sure you have at least a 24-hour supply of oxygen, especially on weekends and holidays.
• Follow the supplier’s instructions to ensure that the equipment works properly.
• Know the phone number of the supplier to call if you have a problem.

Go to Oxygen therapy in the hospital: A guide for you and your family for more tips on using oxygen and keeping safe even when you’re at home.

This content is adapted with permission from The Military and Hospitaller Order of Saint Lazarus of Jerusalem and the Canadian Hospice Palliative Care Association. A Caregiver's Guide: A Handbook about End-of-Life Care.

Eating is a social activity. Sometimes it can bring up pleasant or unpleasant emotions.

Giving food and drink is a way of showing that you care. When your loved one is eating and drinking less or can’t eat or drink, it can be very hard to accept. Often, when they’re no longer able to eat or drink, the reality of dying is exposed.

Start the conversation between you and your healthcare team about eating and drinking when you have any questions, or you notice any changes to eating patterns.

Why aren’t they eating?

There are many reasons why your family member or friend may change their eating habits at the end of life.

• As health changes and the end of life nears, it’s normal to eat and drink less. Eating can become hard work.
• The pressure to eat may cause emotional stress, however, eating more can cause physical discomfort such as nausea or bloating.
• As the end of life gets closer, people usually feel less thirsty and hungry. They may begin to lose weight and strength no matter how much they eat. The body becomes less able to use the energy and nutrients in food and drinks.
• Eating less food and drinking less fluids is because of illness and not because they are giving up.

Talk to your care provider

Families often wonder if having softer food textures or nutritional supplements such as Boost or Ensure will help. Texture changes or supplements may have benefits at different stages and in different ways. Dietitians and others on the healthcare team can guide you.

How do I know when someone doesn’t want to eat or drink?

Listen and watch closely to what they’re telling you about eating and drinking.

Respect what they tell you. Body language and facial expression can be as powerful as words.

Here are some signs to watch for. They may not want to eat if they:

• say things like, "No, I just can’t, maybe later" or "I’m too tired. You have it."
• make sounds or change the tone of their voice
• turn their head away from the spoon or cup, close their lips, push food away, frown, or clench their hands
• close their eyes or fall asleep

Talk to your care provider

Depression, medicines, constipation, dry mouth, and swallowing problems can affect the appetite. Talk with the care team about how to deal with these concerns.

What is eating for comfort?

Eating for comfort involves taking attention away from food and drink, knowing that these may not make the person better.

Some ways to encourage this include:

• Offer food and drink without forcing or pressuring to eat. Offer these more often and in smaller amounts.
• Get pleasure from food and drink without worrying about what, how much, or how healthy the food and drink may or may not be.
• Being flexible. What they want and how much they eat may change from day to day. If you see signs of discomfort, wait for another time to offer food or drink.
• Bring in smaller portions of favourite foods that can be re-heated or eaten later when the person wishes.
• Encourage other ways to spend time together that doesn’t involve food or drink.

What can I do when the person I care about won’t eat or drink?

You can do a lot to show that you care. For example:

• Just be there. You don’t have to talk, just be present.
• Spend time together that’s not focused on food.
• Use gentle touch to give comfort and good feelings.
• Go out for a walk or do an activity if they are able.
• Enjoy quiet activities such as playing music, read out loud, or look at pictures.
• Keep the mouth moist. This helps them feel comfortable. Doing mouth care often is important. Talk to your care team about how you can help.

Remember, rejecting food doesn’t mean your loved one is rejecting you or giving up.

Have we done everything we can?

Many families wonder about different routes for giving food and fluids, such as tube feeding, under the skin (hypodermoclysis HDC, clysis) or in a vein (I.V.). This is called artificial nutrition or artificial hydration.

Studies show that artificial feeding and fluids may not make people more comfortable, live longer, or improve their quality of life.

Complications such as bloating, reflux, diarrhea, aspiration, nausea, or infection can happen.

However, there may be individual reasons why tube feeding and artificial hydration are used or not used. For example, a person may benefit from receiving pain medication using these routes.

Talk openly about these possibilities while your loved one can still communicate their wishes. By honoring your loved one’s wishes, families can show they love and support them. For more information, please talk with your care team. To read more about eating concerns go to Understanding eating for comfort.​​​​​​​​​​​​​​​​​​​​​​​

Author: Adapted from Covenant Health Grey Nuns Community Hospital Tertiary Palliative Care Unit and reviewed by Covenant Health Palliative Institute and Alberta Health Services​​​​​​​​​​​​​​​​​​​​​​​​​