Preparing for Death:

A Guide for the Dying and Their Family

Perhaps you or a loved one is facing terminal illness. No doubt you have many concerns as to what to expect in these final months. As your hospice team, we make it a priority to provide you with as much information as possible so that you understand the physical, mental and emotional changes that you, or your loved one, will encounter during the final stages of life. We have the privilege of helping many people during this time and learning from those who are terminally ill. The information in these pages represents the collective knowledge and experience learned from the dying and their families. We hope this information will help you in the final months, weeks and days ahead.

As each of us enter the final stage of the dying process…

we experience two interrelated events: physical decline and mental-emotional-spiritual release. With physical decline, the body begins the process of shutting down its physical systems. This is a methodical, progressive series of physical changes that are not medical emergencies requiring invasive interventions. These physical changes are the normal, natural way the body prepares itself for death. The most suitable response is to provide comfort-enhancing measures.

Although physically uncomfortable or debilitated, individuals may be able to bring closure to unresolved issues. Someone who is mentally, emotionally and spiritually resolved and ready for death will continue to live until the physical shutdown process is complete.

Death occurs when the body completes its natural process of shutting down and the spirit completes its natural process of reconciling. Both processes occur in a way appropriate and unique to the dying person’s beliefs, values and lifestyle. To prepare, you need to know what to expect and how to respond in ways that will help you and your loved one complete this transition with support, understanding and ease.

The signs and symptoms of impending death listed here will help you understand the natural kinds of events that may happen and how you can respond appropriately. Not all these signs and symptoms will occur with every person, nor will they occur in any particular sequence. Each person is unique, and his or her dying process will reflect that. Most people die as they lived. This is not the time to try to change your loved one. Instead, it is the time to give full acceptance, support and comfort.

Please remember that your hospice team members are here to help you, and we work closely together to provide you with the best information and support available. If you have any questions or concerns about the following information, do not hesitate to talk with the nurse, social worker, chaplain or others on your care team.

Physical Process: Signs and Symptoms

Food and Fluid Decrease

The individual may experience decreased appetite or thirst. He or she may take in little or no food and fluids. The body begins to conserve the energy expended on these tasks. Do not force, or try to use guilt with, the individual to get him or her to eat and drink. Doing so will only make the person more uncomfortable. Offer chips of ice, frozen juice or Gatorade®. If he or she can swallow, try giving fluids in small amounts by spoon (ask your nurse for guidance).

Sleeping

Your loved one may begin sleeping more, appearing uncommunicative or unresponsive, or at times difficult to arouse. This normal change is due to metabolic changes in the body. Sit quietly with your loved one, gently holding his or her hand, and speaking softly and naturally. Plan to spend time with him or her during the times when he or she seems most alert and awake. Do not talk about the individual in his or her presence. Instead speak directly to your loved one as you normally would. Never assume he or she cannot hear — hearing is the last of the senses to be lost.

Urine Decrease

Urine output decreases and it may become tea-colored. This is concentrated urine caused by decreased fluid intake and decreased circulation through the kidneys.

Incontinence

The individual may lose control of urine and/or bowel matter as the muscles in that area begin to relax. Discuss with your nurse what can be done to protect the bed and keep your loved one clean and comfortable.

Disorientation

Your loved one may seem confused about the time, place or identity of people including those close and familiar. This is partly due to metabolic changes. When you speak, identify yourself by name and do not ask the individual to guess your identity. When you need to talk about something important to his or her comfort, speak softly, clearly and truthfully. For example, when giving medications say, “It is time to take your medication,” and explain the reason, “so you will not have pain.” Be mindful that you do not use this method to manipulate the individual into meeting your needs.

Congestion

The individual may develop gurgling sounds in his or her chest. These sounds may become very loud, sounding as though marbles were rolling around inside. This normal change is due to a decrease of fluid intake and an inability to cough up normal secretions. Suctioning causes discomfort and often increases secretion. Gently turn his or her head to the side and allow gravity to drain secretions. You may also gently wipe the mouth with a moist cloth. The sound of congestion does not represent the beginning of new or severe pain.

Restlessness

The person may make restless and repetitive motions such as picking at clothing or bed linen. This often happens and it is partly due to decreased oxygen circulation to the brain and to metabolic changes. Do not interfere with or try to restrain such motions. To comfort your loved one, speak in a quiet natural way, lightly massage the forehead, read or play soothing music. A cool moist wash cloth on the forehead may also increase physical comfort. You may help your loved one by giving him or her permission to let go when he or she is ready. Affirm your loved one’s importance to you, letting him or her know that the good you have received from your relationship will always remain with you.

Coolness

The person’s hands, arms, feet and legs may be increasingly cool to the touch and the color of the skin may change. The skin may become darker on the legs or underside of the body and is known as mottling. This is a normal indication that the circulation of blood is decreasing to the body’s extremities and is being reserved for the most vital organs. Keep the individual warm with a blanket (do not use an electric blanket).

Breathing Pattern Changes

The individual’s regular breathing pattern may change. He or she may develop a breathing pattern consisting of breathing irregularly with shallow breaths and five- to thirty-second periods of no breathing. These periods may extend up to a full minute (called apnea). This is called “Cheyne-Stokes” breathing. The individual may also experience periods of rapid shallow pant-like breathing. These patterns are very common and suggest decrease in circulation in the internal organs. To provide comfort, elevate the head and/or turn the individual on his or her side, and speak gently.

 

Mental–Emotional–Spiritual Process: Signs and Symptoms

Decreased Socialization

Toward the end of life there is an inward concentration on self. The individual talks and interacts less. He or she is using decreasing physical resources to deal with mental, emotional and spiritual matters. He or she may only want to be with a few or even just one person. This is a sign of preparation for release. If you are not part of this inner circle at the end, it does not mean you are not important or loved. It means you have already completed your responsibility to him or her, and it is time for you to say goodbye. If you are part of the final inner circle of support, your loved one needs your approval, support and permission to let go.

Vision-Like Experiences

The individual may speak or claim to have spoken to people who have already passed away, or to see or claim to have seen places not visible to you. This does not suggest a hallucination or drug reaction. The individual is beginning to detach from this life and is preparing for the transition so this experience will not frighten him or her. Do not contradict, explain away or argue about what he or she claims to have seen or heard. Just because you cannot see or hear it does not mean it is not real to your loved one. If the experiences frighten your loved one, explain to him or her that they are common and normal and seek guidance and support from a member of your hospice team.

Restlessness

The individual may do repetitive and restless tasks. This may suggest something remains unresolved and is disturbing to him or her and is preventing letting go. A member of your hospice team can help you identify what may be happening and find a way to help the individual release the tension or fear. Other things that may be helpful in calming the individual are to recall a favorite place or experience he or she enjoyed, to read something comforting, to play soothing music and give assurance that it is okay to let go.

Unusual Communication

The person may make seemingly unusual or confusing statements, gestures or requests displaying possible agitation or anxiousness. This can also indicate that he or she is ready to say goodbye. He or she may use metaphors, or talk of a voyage or trip, of packing, of not being able to get everything together that they need, or of not finding the door or passport. He or she may talk to people in the room you do not see. Speak calmly and reassuringly to your loved one. Ask questions as to whether there is something specific you can do to help. Acknowledge the “other visitors,” explaining that you do not see them while reassuring your loved one that what he or she is experiencing is normal. If your anxiety, or your loved ones’s anxiety, is high please contact your hospice nurse or social worker. They will help you and your loved one cope.

Withdrawal

Eventually, the individual may seem unresponsive, withdrawn or in a comatose-like state. This suggests preparation for release, a detaching from surroundings and relationships and the beginning of letting go. Since hearing is the last of the senses to leave us, speak to your loved one in a 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 your loved one let go.

Giving Permission

It can be difficult to give your loved one permission to go without making him or her feel guilty for leaving. It is natural for you to try to keep him or her with you. A dying person will try to hold on, although it brings prolonged discomfort, to be sure those who are left behind are all right. Your ability to release the dying person from this concern, giving him or her certainty that it is all right to let go, is the greatest gift you can give your loved one at this time.

Saying Goodbye

When your loved one is ready to die and you can let go, it is time to say goodbye. Saying goodbye is your final gift of love. It achieves closure and makes the final release possible. It may be helpful to lie in bed with your loved one and hold him or her, or to take their hand, and say everything you need to say. It may be as simple as saying, “I love you.” It may include recalling favorite memories, places and activities you shared. It may also include saying, “I am sorry for … (whatever it may be) or that I contributed to any tensions or difficulties in our relationship.” It may include saying, “Thank you for …” Tears are a normal and natural part of saying goodbye. You do not need to hide tears from your loved one nor do you need to apologize for them.

Death: The Actual Moment

Working through the dying process may leave you feeling prepared for the actual death moment. You may, however, find yourself feeling unprepared when death occurs. As a family, you should think about and discuss what you will do if you are the one present when your loved one dies.

Death is not a medical emergency. Nothing has to be done immediately. The signs of death include such things as: not breathing, no heartbeat, release of bowel and bladder, no response, eyelids slightly open, pupils enlarged, eyes fixed on a certain spot, no blinking, jaw relaxed and mouth slightly open. You may notice a feeling of release.

When death occurs, do what you need to in the moments following — hold your loved one’s hand, weep, say a final goodbye. When you are ready, please call AseraCare. Our nurse will respond promptly. He or she will help you with necessary arrangements such as notifying the funeral home, medical doctor and coroner, if necessary. The body does not have to be moved until you are ready. The nurse will prepare the body, or if the family wishes, members may help in preparing the body by assisting with bathing or dressing.

As always, if you have any questions about what you read in this handout, please call us or talk with your hospice nurse, social worker or chaplain. We are here to help you whether it is through providing the information you need or by simply talking through what you might experience. We are here for you.

 

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