The final days and hours of life can be rich with meaning and expressions of love. This is also a time of change and transition, both physically and emotionally, and no two people experience the end of life in the same way.
Kansas City Hospice & Palliative Care is here to support the whole family through this difficult time. Consider the following questions about this sometimes-traumatic time, when the goal is to keep the patient as comfortable as possible:
What physical changes can I expect to see?
A person nearing death may stop talking or responding and begin sleeping more and more as the body changes the way it uses energy. Always assume that your loved one can hear even if he or she seems unconscious and no longer communicates. Keep talking to your loved one and touch him or her if that provides comfort.
Loss of Interest in Food and Fluids
As the body begins to shut down, it loses its ability to process food and fluids. So the person may have little interest in eating or drinking. Urine production will decline and the urine may be the color of tea. The question of whether to begin providing fluids often arises. If food or fluids are given artificially at this point, the person may feel discomfort. However, small amounts of ice chips or a Popsicle may be welcome. Proper care of the mouth by keeping it moist and clean is particularly important at this time.
The patient’s nose, ears, hands, arms, feet and legs may feel increasingly cool to the touch. This is because blood circulation is decreasing. Keep the patient warm with extra covering, but don’t use an electric blanket. The patient may not be able to tell you if the blanket overheats.
Changes in Skin Color
The skin, especially on the hands and feet, may look blotchy. Skin of light complexions may look blue, and skin of dark complexions may appear darker. This is called mottling and is caused by slow blood circulation. The underside of the body may become darker. You may notice a bluish-gray color around the mouth, paleness around the mouth or paleness in the face.
Rattling Sounds in the Lungs and Throat
Rattling sounds, which can be quite loud, may occur when a person is taking fewer fluids and loses the ability to cough up secretions. This rattling does not signal additional pain or discomfort. Suctioning generally is not recommended because that can increase secretions and discomfort. Turning may help lessen or stop the rattling.
Bladder and Bowel Changes
The ill person may lose the ability to control urine and stool as the muscles in that area begin to relax. Check with your doctor about whether a catheter is needed. Disposable bed pads or adult disposable briefs also may help.
Disorientation and Restlessness
A person nearing death may seem confused about the time or place and may not recognize familiar faces. Restless behaviors such as pulling at bedding or clothing may occur as a result of less oxygen to the brain, chemical changes in the body and medications. If disorientation occurs, identify yourself by name and speak softly but clearly. Explain any procedures you are doing, such as “We’re going to turn you now” or “I’m going to help you take your medicine now.” Hand holding, quiet music or reading out loud may be calming.
Surge of Energy
Occasionally, someone close to death will have a temporary increase in energy and alertness. The person may become talkative after a period of sleepiness, ask for a favorite food or want visitors after a period of withdrawal. Take advantage of this time because it can be one of special closeness and a chance to express your love and support.
Breathing Pattern Changes
Breathing patterns often change as the body continues to shut down. You may notice periods of rapid, shallow breathing. Or you may see shallow breathing with a space of five to sixty seconds between breaths. This is called Cheyne-Stokes breathing.
Maintaining Comfort as Death Nears
It is important for patients to receive their medications as scheduled to help ensure their comfort. Your nurse will let you know if the dosage needs to be adjusted as the patient’s system starts to shut down. Some family members worry that giving pain medication may hasten the death. Family members also sometimes worry that the final dose of pain medication caused the death even if the patient had been given this same dose before without problems. Be assured that when these medications are used appropriately and adjusted to the patient’s needs, they do not hasten death.
What emotional changes and needs can I expect to see?
Your loved one may focus less and less energy on the world around him or her and may appear to lose interest in surroundings, favorite pastimes and visitors. Energy may be limited, and the patient may want to be with only one or two people. Respect this period of withdrawal. It can be a sad time for family and friends, but it also can be a peaceful time for your loved one. Your presence is the most important gift you can offer during this period.
Your loved one may speak to someone you cannot see or describe people and places not visible to you. These experiences are common in the transition from life to death. Do not argue or try to explain away the experience. Most often, these visions are comforting and full of profound meaning to the dying person.
The Need for Permission to Let Go
As difficult as it can be, giving permission to let go may be an important final gift. A dying person may try to hold on, despite prolonged discomfort, to be sure loved ones will be all right. Your permission can include saying goodbye, saying it’s all right to go and reassuring your loved one you will be all right. You don’t need to hide your tears. They are, after all, a natural expression of your love.
The Need to Say Goodbye
You may wish to call friends and family members who want to share their thoughts and expressions of love with your dying loved one. Goodbyes can be as simple as “I love you, and I’ll miss you.” Goodbyes can include sharing some beloved memories and saying “Thank you” or making amends with “I’m sorry for the difficulties…” Share these important messages, even if the dying person doesn’t seem to respond. Remember, hearing is among the last of the senses to fade.
The Need of Friends to Feel Useful
Many times, friends may offer to help. These are sincere offers, so if you need some practical assistance, such as picking up a prescription, picking up a relative at the airport or delivering dry cleaning, let friends and family feel useful. They will be grateful to you for letting them help.
Choosing the Setting
Even during the dying process, a person continues to protect and nurture those he or she loves. For many, death is a very private act, so they wait for the few brief minutes they can be alone to slip away. Others wait to let go until they are alone with one or two special people. Still others leave amid a circle of loving faces around their bedsides. However death occurs, trust that it may well have been the way your loved one chose it to be.
When Death Occurs
Even though you have been present during the dying process, the moment of death will be powerful. Each person will experience it differently. Here are the indications that death has occurred:
- No breathing for a prolonged period of time.
- No heartbeat.
- Eyes are fixed and slightly open, with enlarged pupils.
- Jaw relaxed, with the mouth slightly open.
Whether death occurs at home, a hospital or a nursing home, family and friends may want to sit with the body for a time. There is no need to rush things, and sitting with the body, praying or reminiscing may be comforting.
If death occurs in a health care facility, the nurses will help with procedures. If it occurs at home under care from Kansas City Hospice & Palliative Care, call your nurse, who will assist you. If death occurs at home without hospice, the physician should be notified. In some counties, the police may come to the home. It is important that they know the death was expected.
Although this is one of life’s most painful experiences, it also can be a rich time of expressions of love and gratitude. Many people find it helpful to make careful notes about just what has happened and how it took place so they can share it with others and think through the process in an accurate way later. So take at least mental notes of what time it was as well as the number and names of people present, final words and any other conditions or circumstances you want to remember. It will help you tell the story both of life and of death, and telling the story is an important way to process the grief you inevitably will feel.
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