In Aurora Health Care blogs we typically discuss topics that affect some of us — medical conditions that range from common to rare.
A part of life that will affect every one of us — but we don’t routinely discuss — is the end of life. Dying.
Over years of observations, medical professionals have documented commonalities among individuals in the process of dying. The medical practice that focuses on end-of-life care is known as hospice. Hospice professionals focus on comfort, dignity and peace at the end of life. Patients can receive hospice care at a health care facility or at home.
Although no element, order or timetable is locked in, the death process is similar when death is due to medical causes such as heart failure, stroke, cancer or diabetes.
Each individual will go through the process in her or his own way, but knowing the commonalities of the process can demystify it. An awareness can make the process more understandable, which can help us take steps toward acceptance. Acceptance by others of the process can be helpful, both for the person who is dying and loved ones.
The patient may display both mental and physical changes.
Mental changes — Observers may notice the person withdrawing. The person may become reluctant to see neighbors, friends and even family members. When they see visitors, they may seem distant. This reflects the patient’s process of separating from the living plane and the people and things in it.
The patient may mentally sort through their lives and seek to be forgiven or forgive past transgressions.
Physical changes — A reduced appetite and weight loss may be noticed as the body starts to slow down. The person’s requirement for energy from food is declining as the body conserves energy. There’s no need to force food or drink. Small bits of ice or frozen juice may be refreshing for the person’s mouth.
The person may sleep more and skip activities she or he previously enjoyed. Many people feel a sense of mild euphoria and comfort. They may not be hungry or thirsty.
The person may sleep most of the time. When awake, they may be disoriented.
Mental changes — The person’s sense of perception may change. Delusions, hallucinations or speaking to people who aren’t there can happen. The patient may talk to people who have already died. Don’t contradict, correct or argue with the person. This is an important part of their process of detaching. It’s normal and common. If the person becomes frightened, explain that they’re safe.
The person may at times appear agitated. They may pull at their bedding or clothing. The movements may seem aimless. This is not a reason for concern. It happens due to a reduction in blood flow to the brain and changes in metabolism. There’s no need to interfere with the activity. To calm the patient, speak in a quiet natural voice. Read out loud. Talk about a favorite shared experience or play some relaxing music.
Physical changes — Typically, the patient’s:
The person may have a temporary surge of energy. The amount of energy people have at this point can vary widely.
They may want to get out of bed and visit with loved ones. The person’s appetite may return.
The surge of energy usually passes in a short time. Then the previous behaviors typically return and may become more noticeable.
Mental changes — Confusion may increase caused by changes in metabolism. The person may be unaware of things such as where she or he is and who the people around are. It’s appropriate to identify yourself by name and speak softly and clearly. If you’re helping with medication, explain that it’s time to take medication and what the medication will do for the person.
The person will spend more time sleeping and may become difficult to awaken or unresponsive. The eyes may be open a bit, but the person is not necessarily awake or seeing you.
Professionals believe hearing is the last sense to leave the person, so family and visitors are encouraged to talk with the person about topics such as positive memories. Since hearing may still be active, don’t assume the person can’t hear you or is not listening. Instead, assume the person is absorbing what you say. Identify yourself by name when you speak. Don’t disparage the patient.
The person may withdraw more than before. The patient may want only a few or even one person with them. This is part of the detachment process. If you’re not part of the circle to stay, this doesn’t mean you’re less important. It simply means your work with the person is completed. It’s your time to say good-bye. If you remain with the patient, provide your support and permission for the person to let go.
The person may choose to let go when no one is present. There’s no need to feel guilty. They may choose to die on their own terms.
Physical changes — Breathing often becomes slower and more irregular. You may notice what’s called Cheyne-Stokes breathing. The person may breathe deeply and rapidly and then breathe slow shallow breaths or stop breathing altogether for moment. This breathing is not uncomfortable for the person. You might want to elevate the person’s head or turn them on their side to relax breathing. You may want to hold the person’s hand and speak gently and reassuringly.
Congestion in the airway may cause a rattling sound. If they’ve had airway congestion before, it may get louder. This is not uncomfortable for the patient and isn’t a cause concern for loved ones.
Hands and feet may become blotchy and purple in color. The blotchiness may spread up the arms and legs. The person’s hands, feet, arms and legs may also feel cool to the touch. This is normal and indicates the blood flow to extremities is reducing to conserve blood for use by the most vital organs. A blanket may help keep the patient warm.
The person may become incontinent as muscles relax. Visit with the person’s health care providers about what can be done to keep the patient comfortable.
These physical changes do not typically require medical treatment and are usually not uncomfortable for the person. They’re the body’s natural way to prepare itself for stopping.
At the end of life, it’s important for survivors to give the person permission to let go. Keep in mind, their needs at this time are uppermost. Let them know you’ll be alright. This is the best gift you can give. Tears are normal and natural. No need to hide them or apologize. They’ll help you let go, too.
At the end of life, you may notice breathing and heartbeat stops. Bowel and bladder may release. Eyelids may be slightly open. Eyes will be fixed on one spot without blinking. Jaw may be relaxed with the mouth slightly open.
If a person will be at home at end of life, compassionate professional hospice care can be invaluable for the patient and the family. The hospice caregiver will explain the next steps after end of life.
If the death occurs at home and hospice is not assisting, call the person’s doctor or call 911. Explain the death was expected.
The body of the person doesn’t need to be moved until you’re ready. When the family is ready to have the body moved, call the funeral home.
It’s helpful to make many end of life decisions ahead of time. AARP offers a checklist to help guide you through the practical steps to take when a loved one dies. Review this list in advance so you can prepare answers for the many questions that you’ll need to address.
Recruit family and friends to help you through the process. Many will offer to help. Take them up on their offers. You don’t have to do it all by yourself.
You can find out more about end-of-life issues from the National Library of Medicine.
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