Dying is a sacred time in life, filled with meaning and important life tasks. Despite its inevitability, death is an unfamiliar process for most of us.
When a person is terminally ill, they often wonder, “What will it be like to die?” Caregivers often seek an understanding of what to expect and how to respond to the signs and symptoms that occur.
Every person is different and their path to death will be theirs to take. A better understanding of the dying process can help loved ones be better prepared to help with the transition to death.
Relating to a Dying Person
Hospice care for the terminally ill emphasizes helping the person who is dying to be as comfortable as possible and maintain a sense of control and dignity. The tasks involved in meeting these goals are not always easy. Some will tax one’s emotional and physical energies, others may have needs and demands that we cannot meet, and still others may lead us through the process with courage and insight.
The following are some suggestions for working with your loved one and for remaining healthy as caregivers.
We Encourage You To
Explore your own feelings about aging, death, and dying, and accept the variety of feelings expressed by the dying person. The person who is uncomfortable with these issues is less likely to be effective in assisting the person who is dying.
Give the person the opportunity to live as fully and independently as possible up to the moment of death. Help the person to define and clarify the realities of day-to-day existence: What are the things they can do? What are the things they cannot do?
Spend time together. Families often need support in coping with a dying person and resolving conflicts which may exist between them and the dying person. At the same time, recognize when someone needs time alone.
Grant your loved one the right to decision-making and to exercise some control over the situation. Help the dying person to retain a sense of dignity and self-worth.
Use touch. This often relieves the fear of being untouchable and is an effective nonverbal way of communicating solace, care, and comfort.
Reassure the dying person that their fears are natural, and that you and others are there to listen and to help whenever possible.
Try To Avoid
Expecting the dying person to conform to your standards and expectations in regard to dying. Keep in mind what is important to the person. Do not force a dying person through the so-called “stages” of grief or dying.
Becoming too preoccupied with how you are coming across to the person. Such preoccupation can prevent you from being “human” and natural in your caring.
Excluding the dying person from what’s going on in the home or outside. Even the comatose individual is often more aware of their surroundings than others realize.
Treating the dying person as socially dead, or as an unthinking, unfeeling object. An example of treating a person as such is talking about the individual rather than to them even though they are capable of hearing and understanding what has been said.
Saying “let me know what I can do.” Instead, offer specific things such as bringing a meal or buying groceries.
Judgement. There is a strong tendency to criticize an individual or the family for not accepting death, for not being “a good patient or caregiver”, or for not responding “appropriately” to the situation. Each person’s journey through the process should be respected.
Signs and Symptoms of Dying
Each person brings to dying their own uniqueness. However, people who are in the dying process do share some common signs and symptoms.
Your loved one may seem unresponsive, withdrawn, or in a comatose-like state. This indicates preparation for release, a detaching from surroundings and relationships, and a beginning of “letting go.” Because hearing may remain all the way to the end, speak to your loved one in your normal tone of voice, hold their hand, and say whatever you need to say that will help the person “let go.”
Your loved one may relate perceptions which are not detectable to you. This should not necessarily be thought of as hallucinatory activity. Do not contradict, explain away, belittle, or argue about what your loved one claims to have seen or heard; these are real experiences to your loved one. They are normal and common. If they frighten your loved one, explain to them that they are normal.
Your loved one may perform repetitive and restless behaviors. While this restlessness may be related to their physical condition, it can also indicate that something is still unresolved or unfinished that is disturbing them and preventing them from letting go. Hospice team members can assist you in identifying what may be happening and help you find ways to help the person find release from the tension or fear. Other things which may be helpful in calming the person are to recall a favorite place or experience the person enjoyed, read something comforting, and/or to play music.
Fluid and Food Decrease
When your loved wants little or no fluid or food, this may indicate that the person is ready for the final shut down. Do not force food or fluid. You help your loved one by giving them permission to let go whenever they are ready. At the same time, affirm your loved one’s ongoing value to you and the good you will carry forward into your life that you received from them.
Your loved one may only want to be with very few people, or even just one person. As your loved one’s perceptions are changing, they may also indicate a desire for the presence of different support persons. Such a shift in preferences does not mean you are any less loved or important. It may mean you have already fulfilled your task with them. If you are requested to be of support in the final stages, your loved one needs your affirmation, support, and permission.
Your loved one may make a seemingly “out of character” statement, gesture, or request. This may result from changes in the brain due to their illness. It can also indicate that they are ready to say good-bye and are checking to see if you are ready to let them go. Accept the moment as a beautiful gift when it is offered. Kiss, hug, hold, cry, and say whatever you most need to say.
Providing for Spiritual Desires
If your loved one has previously discussed a desire for specific spiritual support near the time of physical death, be prepared to honor such wishes in order to provide invaluable comfort. Such practices may include having a spiritual symbol close at hand, reading significant text or prayer, and/or having a chosen spiritual support person visit.
Giving permission to your loved one to “let go” without making them feel guilty for leaving or trying to keep them with you to meet your own needs can be difficult. A dying person will normally try to hold on, even though it brings prolonged discomfort, in order to be sure that those who are going to be left behind will be alright. Therefore, your ability to release the dying person from this concern and give them assurance that it is alright to let go whenever they are ready is one of the greatest gifts you have to give your loved one at this time.
Saying goodbye is your final gift of love to your loved one, for it achieves closure and makes the final release possible. Tears are a normal and natural part of saying goodbye and do not need to be hidden. They express your love and help you to let go. It may be helpful to lie in bed with your loved one and hold them, or to take their hand and say everything you need to say. Your final words may include “I love you,” “Please forgive me,” “I forgive you,” and “Thank you for….”
Stages of the Dying Process
Each death, like each person, is different. However, people who are in the dying process do share some common signs and symptoms. These are guidelines for what to expect. The timing and symptoms of each stage will vary from person to person.
WHAT YOU MAY SEE
A decrease in both eating and drinking, which may last from days to weeks.
Less interest in food; eating may become more of a burden than pleasure.
Occasional choking on fluids.
Feeling “full” quickly.
WHY THIS IS HAPPENING
The body is conserving energy and requires less nourishment. This natural process of shutting down hunger does not cause pain or suffering.
IV fluids and artificial feeding at this time of life cause physical distress in the body and will not prevent death.
HOW YOU CAN HELP
Moisten the patient’s mouth with oral swabs frequently.
Offer sips of fluid or chips of ice.
Offer bits of food if desired.
Follow the patient’s wishes about taking the food and fluids.
WHAT YOU MAY SEE
Changes in physical appearance that may last a few hours or days. The patient’s hands and feet may feel cool and may darken in color.
WHY THIS IS HAPPENING
The patient’s circulation is slowing down and the blood is being reserved for the major internal organs.
HOW YOU CAN HELP
Place or remove blankets as the patient’s circulation changes. Do not use electric blankets or heating pads. The patient cannot judge well if they are too hot.
Patients may respond less and less to you and their surroundings.
Eventually the patient is completely unable to speak or move. This usually happens during the last few days of life.
The patient is preparing for release by detaching from surroundings and relationships.
This is a physical and spiritual response to the dying process.
Assume that the patient can hear everything.
Talk softly. Do not ask questions which require answers.
Touch gently if the patient likes to be touched.
You may find prayers or meditation helpful at this time.
WHAT YOU MAY SEE
Intermittent disorientation and restlessness may occur in most patients.
This may increase in the last days.
WHY THIS IS HAPPENING
This is due partly to the changes occurring in the patient’s metabolism.
HOW YOU CAN HELP
Touch gently, but only if the patient likes to be touched.
Medication may be needed for restlessness.
You may notice a gradual decrease in the patient’s urine output. If the patient has a Foley catheter, the urine may appear very dark.
The bowel movements may stop altogether, or the patient may become incontinent during the last few days.
As the circulation decreases, kidneys and bowel function may be reduced.
Muscles may relax causing incontinence for the patient.
Patient may need underbody pads or diapers.
Patient may need or request a Foley catheter.
Let caregivers know when pads or diapers are soiled and need changing.
Breathing can become more irregular.
Breathing may be shallow and have long pauses, which become more frequent and longer in duration as death approaches, especially during the last few days.
Increasing sounds of congestion in the chest and a rattle in the throat may be heard during the last hours.
Circulation of blood to the internal organs, including the heart and lungs, will decrease.
Throat muscles will begin to relax and the lungs will lose their ability to clear fluids.
Elevate the head of the bed or use pillows to elevate the patient’s head.
Turn the patient on their side.
Oxygen does not help at this stage, but medications may be useful.
Speak respectfully. Although the patient may not be responsive to you, they may still hear you.
Mouth care increases comfort; suctioning does not help.
Transdermal scopolamine patch or atropine drops may help to dry secretions.