Information & Resources
Many Canadians say they would like to die at home, probably because home feels comfortable and familiar. Yet, most of us aren’t aware of what supporting a death at home might involve. The purpose of this article is to outline some of the potential challenges and rewards that come with a home death. That way, both patients and caregivers can have a better idea of what might be expected.
In the final phase of progressive life-limiting illness, patients and families face changes, challenges and choices that are unfamiliar and can seem overwhelming. This article offers information about what might be expected as death nears.
Caring for Someone at End-of-Life
Changes in breathing/Shortness of Breath
As a person approaches the last days of life, you will notice that they sound like they are having trouble breathing or that their breathing changes back and forth; from deep and rapid breathing to slow and shallow breathing with long pauses in between.
Changes in breathing are accompanied by changes in circulation of oxygen in the body – the person’s lips, skin and nails often appear darker and may have a blue or purple tint. Skin may be cool to the touch and look waxy. These are all signs that the body is slowing down.
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Confusion can be common for someone with a serious illness. The person may be unable to focus, have memory loss or find it hard to make decisions. They could be confused about the time, place or who they are (or all three). Confusion can be caused by the illness itself, an infection, side-effects of medication, dehydration (because of reduced fluid intake at end-of-life) or other factors. You should make sure that the nurse or family doctor is aware of the confusion so that they can help to try to reduce it (e.g. by changing medications).
Eating and Drinking
As the physical needs of the body change, the need for food and drink decreases as well as appetite. People who are approaching the end of their life sometimes feel sick to their stomach (nausea), have trouble or feel “full.” You can try offering small amounts of food and feeding with a teaspoon may help. Having fresh water and use of a straw may be helpful. Premade nutritional shakes may be an option instead of solid foods. The loss of feeding oneself can be difficult to accept. Offering choices of what to eat or drink allows the person to remain in control of the situation.
Noisy breathing, which sounds like a wet rattling or gurgling, is caused by the buildup of saliva and mucous in the throat and chest. Near the end of life, a person`s body is not able to clear the fluid easily, and this causes a wet or gurgling noise as the breath passes through the vocal cords and fluid.
These noises can be upsetting to hear but they do not cause painful or discomfort to the person who is dying.
Urination and Incontinence
Decreased food and liquid intake means less output (urine) too. The urine will be darker, thicker and may have a stronger odor. Fecal matter will continue to be produced from cells and bacteria in the body, even if the person eats little or nothing. As death nears, muscles in the body further relax, which can result in the contents of bowels and bladder being released.
Incontinence refers to a person`s loss of control over their bladder and bowels. A catheter may be inserted into the urinary bladder. This may be uncomfortable for the person and will restrict their movement. Good hygiene is very important.
Intravenous therapy is the administration of fluids through the person’s vein.
When a person is approaching end-of-life, they may stop eating and drinking. The body no longer needs food and fluids, and therefore, in most cases, giving a dying person artificial fluids does not contribute to their comfort, and may increase discomfort by causing swelling and secretions in the lungs.
Daily mouth/oral care is very important. If able, the person should continue to brush the teeth, tongue and gums with a soft toothbrush and fluoride toothpaste after meals and at night. If the person you are caring for experiences dry mouth, cracked lips, dry or swollen tongue and thirst it may help to provide sips of water, give frequent mouth care, use lip balm and an alcohol free mouth rinse. It is important to remember to NEVER use toothpaste or mouth rinses with the person who has swallowing difficulties. A person who is unresponsive/unconscious still needs regular mouth care so that their mouth and lips remain moist (they should be turned on their side when doing mouth care so they do not choke). The nurse or personal support worker can show you how and help you to provide proper mouth care.
Physical body/temperature /pulse
As circulation slows, parts of the body (especially hands, feet and lips) may become pale or bluish and this is normal. The skin may feel clammy and there may be increased perspiration or skin may feel feverish. It may help to keep your loved one dry and covered with a light blanket. It is not necessary to add layers of blankets. You may be unable to feel a strong pulse and the rate may become irregular.
Restless movements/agitation can often happen when someone has a serious illness. It could be caused by can be caused by the illness itself, an infection, side-effects of medication, dehydration (because of reduced fluid intake at end-of-life) or other factors. You should make sure that the nurse or family doctor is aware of the restlessness so that they can help to try to reduce it (e.g. by changing medications). Ensure that the person is not at risk of injury.
Sleep and Withdrawal
As a person weakens, the number of hours they spend sleeping may increase. Their sleep can be disturbed by the medications they are on or by issues such as pain or difficulty breathing. Often, a person nearing the end of their life can also become “unresponsive” and cannot wake up.
Being alert means that the person is not asleep. Even if they are not asleep, people sometimes begin to withdraw and may appear to be separating themselves from the people and things around them. This could be because they are thinking about their life, memories, people that have already died, beliefs and questions about life and after life…Even if the person you are caring for is asleep or withdrawn, you can be a comforting presence at their side. Gentle touch and silence can be very meaningful and supportive.
Skin Care and Pressure Sores (Bed Sores)
When someone is spending most of their time in bed it is important to help look after their skin and reposition them in bed. As the skin becomes more dry there is a risk of bed sores on the parts of the body that are most often in contact with the bed such as the hip(s), bum, and heels. Using pillows between and under the bony parts of the body or under the lower leg to reduce the pressure on the ankle or the feet may help. So can bending the knees, keeping the sheets wrinkle free, and preventing skin to skin contact. If possible, the person in bed should be repositioned every 2 hours, except during the night to allow the person to sleep.
Saying goodbye/Letting Go
Watching someone we love go through the dying process is painful but it can offer a special time to share your thoughts and feelings with them and have open conversations. Say what is in your heart, for example I love you, I forgive you, forgive me, thank-you and goodbye. Sometime our loved ones hold on because they can sense that we are not ready to let them go – it is important to give them permission to leave us. The last sense we lose at end-of-life is our hearing so even if your loved one is unresponsive, they can still hear you.
- Renfrew County MVHPC Office at (613) 756-3045 ext. 350 email@example.com
- North Grenville: Beth Donovan Hospice ( 613) 258-9611
- Home care (CCAC)
Other Important Contact Numbers
- Pensions or call 1-800-277-9914
- Old Age Security Program Canada Pension plan 1-800-277-9914
- Legal Aid 1-800-668-8258
- Filing income tax Canada Revenue Agency 1-800-959-8281
- Health card (see for more information) or call Service Ontario 1-866-532-3161
- SIN card number 1-800-206-7218
- Vehicle ownership www.ontario.ca/smw
- Passport See Service Ontario or1-800-267-8097
- Driver’s license
- Tax credits for caregivers Canada Revenue Agency 1-800-665-0354
- EI for compassionate care benefits 1-800-926-9105 Service Canada
- Death certificate
- Funerals and Memorial Services 1-800-387-4458
- Home care (CCAC)