Approaching Death

When a person enters the final stage of the dying process, two different dynamics that are closely inter-related and inter-dependent are at work. 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 undramatic progressive series of physical changes that are not medical emergencies requiring invasive interventions. These physical changes are 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 emotion-spiritual-mental changes are those which support and encourage this release and transition.

When a person’s body is ready and wanting to stop, but the person is still unresolved or unreconciled over some important issue or with some significant relationship, they 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 their body has not completed its final physical stages, the person will continue to live until the physical shutdown is completed.

The experience we call death occurs when the body completes its natural process of reconciling and finishing. These two processes need to happen in a way appropriate and unique to the values, beliefs, and life-style of the dying person.

As you seek to prepare yourself as this event approaches, the members of your Hospice care team want you to know what to expect and how to respond in ways that will help your loved one accomplish this transition with support, understanding and ease. This is the great gift of love you have to offer your loved one as this moment approaches.

The physical and emotional-spiritual-mental signs of symptoms of impending death that follow are offered to you to help you understand the natural kinds of things 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 this particular sequence. Each person is unique and needs to do things in their own way. This is not the time to change your loved one, but the time to give full acceptance, support and comfort.

Signs and Symptoms

  1. Coolness. The person’s hands and arms, and feet and then the legs may be increasingly cool to the touch, and at the same time 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 one.
  2. Sleeping. The person may spend an increasing amount of time sleeping, appear to be uncommunicative or unresponsive, and at times be difficult to arouse.  Sit with your loved one, hold their hand; do not shake or speak loudly, but speak softly and naturally.  Plan to spend time with them during those times when they seem most alert/awake.  Do not talk about the person in the person’s presence. Speak to them directly as you normally would, even though there may be no response. Never assume the person cannot hear; hearing is the last of the senses to be lost.
  3. Disorientation. The person may seem to be confused about the time, place, and identity of people, including close and familiar people. This is also due in part to the 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 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.”  Do not use this method to try to manipulate the patient to meet your needs.
  4. Incontinence. The person may lose control of urine and/or bowel matter as the muscles in that area begin to relax. Discuss with your hospice nurse what can be done to protect the bed and keep your loved one clean and comfortable.
  5. Congestion. The person may have gurgling sounds coming from their 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 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 congestion does not indicate the onset of severe or new pain.
  6. Restlessness. The person may make restless and repetitive motion such as pulling at bed linen or clothing.  This often happens and is due in part to the decrease in oxygen circulation to the brain.  Do not interfere with or try to restrain such motions.  To have a calming effect, speak in a quiet, natural way, lightly massage the forehead, read to the person, or play some soothing music.
  7. Urine decrease. 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. Consult with your hospice nurse to determine whether there may be a need to insert or irrigate a catheter.
  8. 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 that is expended on these tasks. Do not try to force food or drink into the person or try to use guilt to manipulate them into eating or drinking something. To do this only makes the person much more uncomfortable. Small chips of ice, frozen Gatorade, or 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). A cool, moist washcloth on the forehead may also increase physical comfort.
  9. Breathing Pattern Change. The person’s regular breathing pattern may change with the onset of a different breathing pace. One particular pattern consists of breathing irregularly, i.e., shallow breaths with periods of no breathing of 5 to 30 seconds and up to a full minute. This is called “Cheyne-Stokes” breathing. The person may also experience periods of rapid, shallow, breathing. These patterns are very common and indicate decrease in circulation in the internal organs. Elevating the head, and/or turning the person on their side may bring comfort. Hold their hand. Speak gently.

Dealing with grief

Grief is a natural response to loss.  It is not a disease but a healthy process that mourners can pass through to adapt to change.  Individuals grieve differently and there is no uniform way people cope with their feelings of loss.  You may find it helpful to talk with friends.  Naming our feelings aloud often helps us to adjust to our profound pain of loss.  Family and friends are often a source of support during this time.  Although no one will ever replace your loved one nor will any words lessen your pain, trusted family and friends are ready to listen and be there for you.  If there are children in the home, you need not hide your sadness.  Children understand when a person is sad and will learn that grief is part of life and is a natural experience when someone you love is dying.  Dealing with grief takes time.  It may last more than a year.  Feelings of grief may be experienced at different times and in varying degrees of intensity.  This work requires patience and the belief that you will survive.  Hospice is ready to help you through this process.

Emotional-Spiritual-Mental Signs and Symptoms with Appropriate Responses

  1. Withdrawal. 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, identifying yourself by name when you speak, hold their hand, and say whatever you need to say that will help the person “let go.”
  2. Vision-like Experiences. The person may speak to persons who have already died or see places not presently visible to you.  This does not usually indicate a hallucination or a drug reaction.  The person is beginning to detach from this life and 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 their experiences.  They are normal and common.  If they frighten your loved one, explain that these are normal experiences.
  3. Restlessness. The person may perform repetitive and restless tasks.  This may in part indicate that something is still unresolved or unfinished that is disturbing them and preventing them from letting go.  Your hospice team members 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 that may be helpful in calming the person are to recall a favorite place or experience the person enjoyed, read something comforting, play music, and give assurance that it is okay to let go.
  4. Decreased Socialization. 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 who the support is most needed from 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 unimportant or are not loved.  It means you have already fulfilled your task with them, and it is the time for you to say “goodbye.”  If you are a part of the final “inner circle” of support, the person needs your affirmation, support and permission to let go.
  5. Unusual Communication.  The person may make a seemingly “out-of-character” or illogical statement, gesture, or request.  This indicates that they are ready to say “good bye” and are “testing” 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.
  6. Giving Permission. 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 all right.  Therefore, your ability to release the dying person from this concern and give them assurance that it’s 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.
  7. Saying Good-bye. When the person is ready to die and you are able to let go, then is the time to say “good-bye.” Saying “goodbye” is your final gift of love to your loved one, for it achieves closure and makes the final release possible. It may be helpful to lay in bed with the person and hold them, or take their hand and then say everything you 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…”, or “It’s okay to go on”. Tears are a normal and natural part of saying “good-bye.”  Tears do not need to be hidden from your loved one or apologized for.  Tears express your love and help you let go.

How do you know death has occurred?

Although you may be prepared for the death process, you may not be prepared for the actual death moment.  It may be helpful for you and your family to think about and discuss what you would do if you were the one present at the death moment.  The death of a hospice patient is not an emergency.  Nothing must be done immediately.  The signs of death include such things as: no breathing, no heartbeat, release of bowel and bladder, no response, eyelids slightly open, pupil enlarged, eyes fixed on a certain spot, no blinking, jaw relaxed, and mouth slightly open.  Do not call 911.  If you would like to sit with the person for some time before calling Hospice, please do.  Call the Hospice nurse. The nurse will make a visit.

The body does not have to be moved until you are ready.  If the family wants to assist in preparing the body by bathing or dressing, that may be done.  The police do not need to be called.  The hospice nurse will notify the physician and funeral home and will assist in getting equipment removed from the home.

Hospice del Valle makes spiritual and emotional support available to both patient and family members.  Chaplains and counselors are available to meet with you to discuss funeral planning and issues relating to grief and loss, and to support you through this time of transition and transformation.