When a loved one is terminally ill, family caregivers often have questions and concerns about what changes will happen at the end of life. While each person is different, and many factors influence the dying process, certain indicators are common in the weeks, days and hours leading up to death.
Knowing what to expect – and what you can do to help – can ease your worries as you navigate this difficult time. Most important: just being present with your loved is often the most valuable action you can take.
Each person’s end-of-life experience is unique, as it is influenced by such factors as the specific illness, medications being taken, and the person’s overall health. In some cases, these changes may occur over a period of weeks; for others, the process lasts just a few days or hours.
However, a number of end-of-life changes are fairly common, as a person’s bodily functions naturally slow and stop. The following changes are often signs of this process, though not every patient exhibits all of these end-of-life signs.
How to help: Offer, but don’t force, food, liquids, and medication. In some instances, the person may no longer feel pain they had previously felt.
How to help: Do nothing. However, if the patient is not passing fluids but feels the urge to do so, contact their nurse for advice.
How to help: Allow your loved one to rest and remain peaceful. Offer reassuring words and touches, but don’t pressure the person to interact.
“With their last breath, those we love do not say good-bye, for love is timeless.”
– Edward Hays
How to help: Let your loved one sleep. At this point, it is more important to be with, rather than to do for, your relative.
How to help: Speak clearly to the person. Ask your loved one what would make them more comfortable, such as more or less light in the room. Listen carefully when your relative speaks.
How to help: Use a cool-mist vaporizer to moisten the air in the room. If this does not help, contact the hospice nurse for advice. Then clean the patient’s mouth, using a swab dipped in mineral oil, glycerin, or water. Give small amounts of water through a straw: place a straw in a glass of water, then seal the top end of the straw with your finger. Gently place the bottom end of the straw in the patient’s mouth, then remove your finger from the top to release the water. This may help prevent dryness in the mouth.
How to help: Raise the head of the bed to make breathing easier. To help reduce the sound of noisy breathing, you can turn the person onto their side.
“Facing a loved one’s final moments is scary. But if you know what end-of-life changes to expect, you’ll feel less anxious, and be better prepared to help the person.”
— Donna Fahey, MFA, MSN, RN, CNL, HNB-BC, Manager, The Samaritan Center at Voorhees
How to help: Play soft music, talk in a calm voice, or read to you loved one. Help them recall a favorite place or experience. Try giving a back rub to relax them. If your loved one tries to get out of bed, provide support to avoid a fall. Reassure the person that you are there for them, and that it’s OK to let go.
Similarly, some people who are dying think others are trying to harm them (this is called “delusions of persecution”). Some think they are much stronger than they are, and that they can do things that are not possible (this is called “delusions of grandeur”).
How to help: Affirm your loved one and be reassuring. Don’t try to correct them. If your relative is frightened, let them know they are safe and that their experience is normal and natural. You can also try to shift their attention to a different topic or activity. In general, keep conversations light. Talk about the day, the time, where you are, or about someone present in a casual way, to put your loved one at ease.
How to help: Provide blankets to warm, and cool, wet washcloths to cool your loved one when needed. Change linens and clothing as needed to keep your relative comfortable.
How to help: Be aware that death may come soon, and share that information with other relatives as appropriate.
How to help: Always act as if the dying person is aware of what’s going on, and can hear what you’re saying and feel you touching them.
How to help: Place disposable, waterproof pads (known as “chux”) under the patient, and cover the mattress with plastic. This will protect both your loved one and the bed.
In addition to physical differences, many people go through emotional and spiritual changes near the end of life. These can include:
How to help: Though it may be emotionally difficult for you, let your loved one control these decisions if they want to. All people – including those who are dying — want their choices honored.
How to help: Identify yourself when you arrive. Speak in your normal voice. Hold your loved one’s hand. Say what you need to say to them. This will help them – and you — let go.
“It can be helpful to discuss with your family what you will do as these end-of-life signs occur, and at the moment of your loved one’s death.”
— Kim Rumaker, MSS, LCSW, Manager, Samaritan Social Work, Spiritual Support & Center for Grief Support
How to help: Understand that, if your loved one excludes you, it doesn’t mean they don’t love you or that you’re not important. It simply means your task with them is fulfilled. And if they want you at their side, it may mean they need your affirmation, support, and permission to let go. Let your relative know you will be OK. Say any words of love and support you need to tell them. Give them permission to let go.
How to help: Listen. Hold them. Say anything you need to say. You may want to recall favorite memories, apologize for something, thank the person, or simply say “I love you.” Don’t hide your tears; crying expresses your love and helps you let go.
People sometimes think that the moment of death will be dramatic, difficult or painful. That is not usually the case, especially when a person dies while receiving hospice care. Hospice providers work to alleviate patients’ pain and discomfort.
In fact, the signs of death are often subtle. It may take a few minutes to realize the person has died, rather than just being asleep or unresponsive.
When someone dies, you many notice the following end-of-life changes:
What to do when death occurs:
If the patient is receiving hospice care at home, call the hospice organization. Do not call 911 or any other local emergency number. The hospice nurse will help you with any calls to the physician and funeral home of your choice.
If the patient is receiving care at an inpatient hospice center or other facility, notify a staff member.
To learn more about end-of-life signs and about caring for your loved one who is terminally ill, call Samaritan Healthcare & Hospice at (800) 229-8183.