When diagnosed with a life=threatening illness, a person begins a new journey in life. Each journey is unique, and we all handle death in our own way. As time progresses toward a person’s death, that person will undergo some changes. The person will prepare physically, emotionally, mentally, and spiritually. Few things about death and dying are predictable- nobody knows when it will happen, how it will happen, who will be present, or what feelings it will bring up. A patient and family must be prepared to work through this process as it unfolds, discovering the patient’s own unique journey. The wishes of the patient should be followed whenever possible.
On the physical level, the body begins the final process of shitting down. Usually, these are an orderly and undramatic progressive series of physical changes, which are not medical emergencies. These physical changes are normal and may occur quickly or over a period of time.
Coolness and Mottling (blotches of discoloration of the skin)
The person’s hands, arms, feet, then legs may be increasingly cool to the touch and the color of the skin may change. The underside of the body may become darker and the skin becomes mottled. This is a normal indication that 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, but do not use an electric blanket or heating pad.
The person may spend an increasing amount of time sleeping, appear to be uncommunicative or unresponsive, and at times, difficult to arouse. This normal change is due in part to changes in the metabolism of the body. Sit with them; hold his or her hand. Speak softly and naturally. Speak to him/her directly as you normally would, even though there may be no response. Never assume the person cannot hear; hearing is the last sense to be lost.
The person may seem to be confused about the time, place, and identity of people surrounding him/her, including those close and familiar. This is also due in part to metabolic and oxygen supply changes. Identify yourself by name before you speak. Speak softly, clearly, and truthfully when you need to communicate something important to 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 bladder and/or bowels as the muscles in that area begin to relax. Discuss with the hospice nurse what can be done to protect the bed and keep the patient clean and comfortable.
You may hear gurgling sounds coming from the person’s throat or chest as though marbles were rolling around inside. These sounds may become very loud. This normal change is due to the decrease of fluid intake and inability to cough up normal secretions. Suctioning usually only increases the secretions and causes sharp discomfort. Gently turn the person’s head to the side to allow gravity to drain 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.
The person may make restless and repetitive motions such as pulling at the bed linen or clothing. This often happens and is due, in part, to the decrease in oxygen circulation to the brain and to metabolism changes. Do not interfere with or try to restrain such motions. Talk to the Agape Hospice team about methods to assist in relaxing the person.
The person’s urine output normally decreases and may become tea-colored, referred to as concentrated urine. This is due to the decreased fluid intake as well as decrease in circulation through the Kidneys.
Fluid and Food Decrease
The person may have a decrease in appetite and thirst, wanting little or no food or fluid. The body will naturally begin to conserve energy for other functions that would otherwise be used in digestion. Swallowing and normal reflexes can become sluggish and nourishment by mouth can carry the risk of choking. Do not try to force food or drink into the person. Doing this only makes the person much more uncomfortable. Although it can be difficult to disassociate food with love, refusal of offered nourishment is a choice that needs to be honored. Small chips of ice, frozen Gatorade, or juice might be refreshing in the mouth. If the person is able to swallow, fluids may be given in small amounts by syringe (ask hospice nurse for guidance). You can try raising the head of the bed to make swallowing easier. Agape Hospice can provide glycerin swabs to help keep the mouth and lips moist and comfortable.
Breathing Pattern Change
The person’s breathing pattern may change becoming more labored, irregular, or noisy. The person may breathe deeply and then pause for a long time – 10 seconds to a minute – before breathing resumes. This is called apnea and causes the person no discomfort. These patterns are very common and indicate decrease in circulation in the internal organs. You may want to elevate the head or turn the person on his/her side. 18
In addition to physical/medical symptoms, the process of dying includes the spirit beginning the final process of release from the body, its immediate environment, and all emotional attachments. This release tends to follow its own priorities, including the resolution of unfinished business, reconciliation, affirmation of close relationships, and accepting permission from family members to let go. Support and encourage this transition.
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 until the end, speak to the patient in your normal tone of voice, identify yourself by name when you speak, hold his/her hand, and say whatever you need to say that will help the person “let go.”
The person may speak to or claim to have spoken to persons who have already died. He/she may see or have seen places or things not presently accessible or visible to you. This doesn’t indicate a hallucination or drug reaction. This person is beginning to detach from this life and is being prepared for the transition. You may hear the hospice team refer to this process as “celestializing.” Affirm his or her experiences—just because you cannot see or hear these things does not mean they are not real to the patient. If they frighten the patient, explain to him/her that these visions are normal and common. The Chaplain may be a good resource in this situation.
Your loved one may want to be alone or with only a few people. This is a sign of preparation for release and an affirmation of whom the support is most needed in order to make the appropriate transition. If you are not part of this “inner circle” at the end, it does not mean you are not loved or important. It means you have already fulfilled your task with him/her, and it is time for you to say goodbye. If you are part of the final “inner circle” of support, the person needs your affirmation, support, and permission.
A Need for Permission
Giving permission to your loved one to let go without making him/her feel guilty for leaving or trying to keep him/her with you to meet your own needs can be difficult. Despite prolonged discomfort, a dying person may hold on 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 assure him/her that it is all right to let go whenever he/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, then it is time to say goodbye. Saying goodbye is the final gift of love to the patient, for it achieves closure and makes the final release possible. Family members may find it helpful to lie in bed with the person and hold him/her or to take his/her hand and say everything they need to say. 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 any tensions or difficulties in our relationship.” It may also include saying “Thank you for…” Tears are a normal and natural part of saying goodbye. Tears do not need to be hidden from the patient or apologized for. Tears are an expression of love and may assist in “letting go.”
Agape Hospice Social Workers and Chaplains can be available to provide additional support during this time. It may also be helpful to seek a spiritual advisor with whom the patient has a relationship to come and provide reassurance and support during the last days. In addition, some volunteers specialize in what is called “11th hour support,” and are there to serve the patient and family may have throughout the dying process.
How will you know when death has occurred?
Signs of death include no breathing, no heartbeat, release of bowel and bladder matter, no movement of arms and legs, fixed eyes, no blinking, relaxed jaw, and slightly open mouth.
If you are with the patient at the time of his/her death:
- Call Agape Hospice — there is no need to call the coroner or police.
- DO NOT CALL 911.
- Turn off any electrical equipment attached to the patient’s body, but leave any tubes or attachment devices in place.
- Follow any religious observances that were requested by the patient.
- Call any friends or family members who may wish to spend some private time with the patient before the body is taken by the mortuary.
- When the family is ready, the nurse will call the mortuary.
Death comes to us all and most of us will experience numerous deaths of loved ones. Each one will affect us in different ways. After the patient’s death, be sure to express your needs with the Agape Team and your family and friends. Find some alone time to reflect if you need to. This will be a period when you start the grieving process, which is necessary in healing. The Agape Hospice team will be there to assist during this process.