About Dying

Physical changes as bodily death approaches

Body temperature – hands, arms, feet, and legs become increasingly cool to the touch. Provide warmth with a blanket (do not use electric blankets). If sweating or feverish, use a light cotton sheet instead of blankets, and lay a cool cloth at the back of the neck or on the forehead.
Skin color changes – The color of the skin may change (blueish mottling or darkening). This happens as blood pools due to lack of circulation. It is a natural process and doesn’t indicate that you have caused bruising or harm.
Sleeping – increased sleeping time; being uncommunicative or unresponsive; at times difficult to arouse are normal changes due to changes in body metabolism. Sit with the patient, hold their hand, but do not shake it or speak loudly. Speak softly and naturally. Spend time with them when they seem most alert or awake. Do not talk about them as if they are not there. Speak to them directly as you normally would, even though there may be no response. Never assume they cannot hear; hearing is the last of the senses to be lost.
Disorientation – confusion about the time, place, and identity of people surrounding the patient is due in part to metabolism changes. Identify yourself by name before you speak rather than to ask the person to guess who you are. Speak softly, clearly, and truthfully when you need to communicate something important for their comfort, such as, “It is time to take your medication, so you won’t begin to hurt.” Do not use this method to try to manipulate the patient to meet your needs.
Incontinence – losing control of urine and/or bowel matter as the muscles in those areas begin to relax. Urine output normally decreases and may become tea colored (concentrated urine). This is due to the decreased fluid intake as well as decrease in circulation through the kidneys. The hospice team can give guidance about preserving dignity while keeping the patient clean, comfortable and free of skin break-down or bed sores.
Congestion – gurgling sounds coming from the 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 an inability to cough up normal secretions. Suctioning usually only increases the secretions and causes sharp discomfort. Gently turning the patient so that they lay on their side allows gravity to drain the secretions. Gently wipe the mouth with a moist cloth. The sound of the congestion does not indicate the onset of severe or new pain. The sound is what is commonly referred to as a “death rattle”.
Restlessness – making restless, repetitive motions such as pulling at bed linen or clothing. This is due to decreasing oxygen circulation to the brain and to metabolism changes. Do not interfere with or try to restrain such motions. Provide calming words in a quiet, natural way, lightly massage their hands, or lay a cool cloth on the forehead; read to them, or play soothing music.
Fluid and Food Decrease – decrease in appetite and thirst, wanting little or no food or fluid is natural as the body begins to conserve energy normally expended on these tasks. Do not try to force food or drink or use guilt to manipulate eating or drinking. Small chips of ice, or frozen juice may be refreshing in the mouth. If the person is able to swallow, fluids may be given in small amounts by syringe (ask the hospice nurse for guidance). Soft glycerin swabs help keep the mouth and lips moist and comfortable.
Breathing Pattern Change – regular breathing pattern changes with the onset of a different breathing pace. A particular pattern consists of breathing irregularly, i.e., shallow breaths with periods of no breathing of five to thirty seconds and up to a full minute. This is called Cheyne-Stokes breathing. The person may also experience periods of rapid shallow pant-like breathing. These patterns are very common and indicate decrease in circulation in the internal organs. Elevating the head, and/or turning the person onto his or her side may bring comfort. Placing hands lightly on the body can be soothing.

Psycho-spiritual, social, and emotional signs of approaching death

Withdrawal – being 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 of bodily life. Since hearing remains all the way to the end, speak to the patient in your normal tone of voice, identifying yourself by name when you speak, hold their hand, or place your hands lightly on their body; express care and kindness.
Vision-like experiences – speaking to or claiming 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 a drug reaction, but is a common, normal experience for the dying. They are beginning to detach from this life and preparing for the transition in their own way 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 is not real to them. Affirm their experience.
Patient’s believe that they are in the presence of someone not alive. – This can occur hours, days or weeks before the actual death. The patient may not report recognizing significant people from his/her life. The patient may try to interact by talking, nodding or smiling at someone who is invisible to us.
Patient’s belief that they are preparing for travel or change. – The patient may try to communicate with loved ones about preparing for death. They may try to share information with symboloic language to indicate preparation for a journey or change soon to happen. Some examples include looking for tickets or passport, getting ready to set sail, or talking about some large challenge such as taking the house with them. Some messages are long and detailed while others may be brief and fleeting. These messages indicate that the patient “is getting ready to leave.” The patient may be asking for information about dying process or showing concern for those they love. The family’s reassurance that they will be all right often brings peace to the present.
Patient’s belief that they are seeing a different place. – The patient may see a place not visible to anyone else. The description may be brief and not very specific. Accept what the patient tells you. If the patient tells you he sees a beautiful place you may respond by saying, “I’m so pleased. I can see that it makes you happy. Would you like to tell me more?”
Terminal Restlessness – can indicate that something is unresolved, unfinished or is disturbing and preventing release. Remember that the patient is saying goodbye to everything known, including beloved people, experiences, places, and to their own body. Reconciling the ontological of being (existing) with not being may take time. Hospice team members will assist you in identifying what may be happening, and help you find ways to provide comfort and palliate anxiety. Provide a calm presence; perhaps talk about the patient’s favorite place or experience, read something comforting, play music, give assurance that it is OK to let go, but don’t pressure the patient to let go.
Fears – may come up at any time in final days. Numerous end-of-life fears include: fear of pain and suffering, feeling alone or isolated, breathlessness, losing control, or the unknown. The best thing for loved ones to offer a dying person is to be present, listen carefully, and offer assurance and love. It is appropriate to call on the hospice team for guidance and support to relieve and palliate fear, nightmares, or other expressions that indicate a panicked or terrified state of being. Nurses, social workers, bereavement counselors, clergy, chaplaincy team members, or trained volunteers can provide various remedies and support.
Decreased Socialization – wanting to be with a very few or even just one person is common. This is a sign of preparation for release and affirms from whom the support is most needed in order to transition. If you are not part of this inner circle at the end, it does not mean you are not loved or are unimportant. It means you have already fulfilled your task, and it is the time for you to say good-bye.
Holding On – A dying person may try to hold on, even though it brings prolonged discomfort, in order to be sure those who are going to be left behind will be all right. 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. Your ability to release the dying person from this concern and give them assurance that it is all right to let go whenever they are ready is one of the greatest gifts you have to give your loved one at this time.
Saying Good-bye – A dying person may not want to say the words “good bye” but they may indicate it growing close to their final moments in other ways by saying they will miss life (or specific people or things about life). Follow their lead in this conversation. Saying good-bye is your parting gift to your loved one, and can be done at any time during their hospice care, including in final moments, even if they are in a coma-like state. It may be as simple as saying, “I love you” or you may want to express appreciation, or offer words of comfort or reassurance. If the relationship is complicated, the Hawaiian practice, Ho’oponopono offers a mantra, “I’m sorry, please forgive me, thank you, I love you” as a way to “make things right”. Tears express love and are a normal and natural part of saying, good-bye. Tears do not need to be hidden or apologized for. It is important to remain calm so as to not add to the distress the dying person may already feel about saying goodbye.
Grieving – The five stages of grief outlined in Dr. Elisabeth Kubler-Ross’s landmark book On Death and Dying were written to describe what a dying person is going through as they are nearing death. They are Denial, Anger, Bargaining, Depression (sadness), and Acceptance. Imagine how it must feel to be saying goodbye to everyone and everything in life. A dying person may experience these states of being during their hospice time. These states do not occur in an orderly fashion, and can be happening in quick succession or all at once. Caregivers and loved ones can provide a safe, compassionate listening space if the patient needs to talk about the complicated feelings that are part of dying. The hospice social worker or bereavement counselor can be called in if any or all stages of grief are weighing on the patient. Family or friend caregivers will experience anticipatory grief and can engage hospice grief support as well.

Responding with Care

Respond to anything you don’t understand with gentle inquiries. “Can you tell me what’s happening?” or “You seem different today. Can you tell my why?”
Pose questions in encouraging terms. The patient whose mother may have been dead for several years may say, “Mother is waiting for me.” You can say, “Mother is waiting for you? I am so glad she is close to you.” Or “Can you tell me more about that?”
Don’t argue or challenge what the patient is saying. You could increase the patient’s frustration by saying “You couldn’t possibly have seen Mother. She’s been dead for ten years.” The patient may end further attempts to communicate what he/she sees.
The patient may use images from their life experiences, work or hobbies. For example a pilot may talk about preparing for flight. You may ask, “Do you know when your flight leaves?” or “Is there anything I can do to help you prepare for take off?”
Be honest about having trouble understanding. You may say, “I think you’re trying to tell me something important and I am really trying to understand. Don’t give up on me. I am here for you.”
Don’t push. Let the patient control the conversation. He/she may not be alble to put experience into words. Insisting on more talk may frustrate or overwhelm the patient.
If you don’t know what to say, don’t say anything. Sometimes the best response is simply to touch the patient’s hand, or smile and stroke their head. Touching gives the very important message, “I’m with you.”