When a person enters the final stage of the dying process, two different dynamics are at work, which are closely inter-related and interdependent.
On the physical plane, the body begins the final process of shutting down, which will end when all the physical systems cease to function. Usually this is an orderly and non-dramatic progressive series of physical changes which are not medical emergencies requiring invasive interventions. These physical changes are a normal, natural way in which the body prepares itself to stop and the most appropriate kinds of responses are comfort-enhancing measures.
The other dynamic of the dying process is at work on the emotional-spiritual mental plane and is a different kind of process. The “spirit” of the dying person begins the final process of release from the body, its immediate environment and all attachments. This release also tends to follow its own priorities, which may include the resolution of whatever is unfinished of a practical nature and reception of permission to “let go” from family members. These “events” are the normal, natural way in which the spirit prepares to move from this existence into the next dimension of life. The most appropriate kinds of responses to the emotional-spiritual-mental changes are those, which support and encourage this release and transition.
When a person’s body is ready to cease functioning, but the person is still unresolved or un-reconciled over some important issue or with some significant relationship, he/she may tend to linger even though uncomfortable or debilitated in order to finish whatever needs finishing. On the other hand, when a person is emotionally-spiritually-mentally resolved and ready for this release, but his/her body has not completed its final physical process, the person will continue to live until the physical “shut down” is completed. The following signs and symptoms of impending death are to help you understand and know what to expect. Keep in mind that not all of these will occur with every person or in this particular sequence.
The person’s hand and then arms, and feet then legs become increasingly cool to the touch and at the same time the color of the skin may change. This is a normal indication the circulation of blood is decreasing to the body’s extremities and being reserved for the most vital organs. Keep the person warm with a blanket. Do not use an electric blanket.
The person may spend an increasing amount of time sleeping, and appear to be non-communicative and unresponsive. The normal change is due in part to changes in body chemistry. Sit with your loved one, hold hands and speak softly and naturally. Do not talk about the person in the person’s presence as the sense of hearing remains intact during the dying process. Speak to him or her directly as you normally would, even though there may be no response.
The person may seem confused about the time, place and identity of family and friends. This is also due in part to the body chemistry changes. Sometimes a paper or white board reminder of the day and time is helpful. Identify yourself by name before you speak rather than ask the person to guess who you are. Speak softly, clearly and truthfully when you have to communicate for the patient’s comfort, such as “It is time to take your medication,” and explain the reason for the communication such as “So you won’t begin to hurt.”
The person may lose control of urine and/or bowel matter as the muscles in those areas begin to relax. Discuss with the hospice nurse what can be done to keep your loved one clean and comfortable as well as how to protect the bed.
The person may have sounds of congestion coming from his or her throat or chest, as small amounts of fluids accumulate and cause a vibration noise. This normal change is due to the decrease of fluid intake and an inability to cough up normal secretions. Suctioning usually only increases the secretions and causes much discomfort. Gently turn the person’s head to the side and allow gravity to drain the secretions. You may also gently wipe the mouth with a moist cloth. The sound of the congestion does not indicate the onset of severe or new pain and is normal for the physical decline.
The person may begin to want little or no food or liquid. This means the body is conserving energy for other functions and getting ready for the end phase. Do not try to force food or drink or use guilt to manipulate them into eating or drinking. To do this only makes the person uncomfortable. Small chips of ice, frozen Gatorade or juice may be refreshing in the mouth. Glycerin swabs may help keep the mouth and lips moist. A cool moist washcloth on the forehead may increase physical comfort.
The person’s urine output normally decreases due to the decreased fluid intake as well as decrease in circulation through the kidneys. Consult with your hospice nurse to determine whether there may be a need to insert or irrigate a catheter.
The person’s regular characteristic breathing pattern may change with the onset of a different breathing pace which alternates with periods of no breathing. This pattern is called the “Cheyne Stokes” syndrome, is very common and indicates decrease in circulation in the internal organs. Elevating the head may help bring comfort. Hold hands. Speak gently.
The person may only want to be with a very few or even just one person. This is a sign of preparation for release and an affirming of which the support is most needed from in order to make the approaching transition. If you are not a part of this “inner circle” at the end, it does not mean you are not cared about or are unimportant. It means you have already fulfilled your task with him or her and it is the time for you to say “Good-bye.” If you are part of the final “inner circle” of support, the person needs your affirmation, support and permission.
The person 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.” Since hearing remains all the way to the end, speak to your loved one in your normal tone of voice, identify yourself by name when you speak, hold his or her hand and say whatever you need to say that will help the person “let go.”
The person may speak or claim to have spoken to persons, who have already died, or to see or have seen places not presently accessible or visible to you. This does not indicate a hallucination or drug reaction. The person is beginning to detach from this life arid is being prepared for the transition so it will not be frightening. Do not contradict, explain away, belittle or argue about what the person claims to have seen or heard. Just because you cannot see or hear it does not mean it’s not real to your loved one. Affirm the experiences. They are normal and common. If they frighten your loved one, explain to him or her that they are normal.
The person may perform repetitive and restless tasks. This may be caused by decreased oxygen circulation to the brain and body chemistry changes. The restlessness may in part indicate that something is unresolved or unfinished that is disturbing and prevents him or her from letting go. Do not interfere or try to restrain such motions. Your hospice team member will 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 speak in a quiet natural way, recall a favorite place, lightly massage the forehead, reading to the person or playing music. Give assurance that it is OK to let go.
The person may make statements, gestures or requests that are seemingly “out of character.” This may indicate the time is ready for the person to say “Good-bye” and is ‘testing to see if you are ready to let him/her go. Accept this moment as a beautiful gift when it is offered. Kiss, hug, hold, cry and say whatever you need to say.
Giving permission to your loved one to let go without making him or her feel guilty for leaving or trying to keep him or her 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 all right. Therefore, your ability to release the dying person from this concern and give him or her assurance that it’s all right to let go whenever he or she is ready is one of the greatest gifts you have to give your loved one at this time.
When the person is ready to die and you are able to let go, then is the time to say “Good-bye.” Saying “Good-bye” is your final gift of love to the loved one, for it achieves closure and makes the final release possible. It may be helpful to lie in bed with the person and hold him or her, or to take the hand and then say everything that you need to say so that afterward you never say to yourself, “Why didn’t I say this or that to him or her?” It may be as simple as saying, “I love you.” It may include recounting favorite memories, places and activities you shared. It may include saying, “I’m sorry for whatever I contributed to add tensions or difficulties in our relationship.” It may also include saying, “Thank you for...”
Tears are a normal and natural part of saying, “Good-bye.” Tears do not need to be hidden from your loved one and you do not need to apologize for them. Tears express your love and help you to let go.