Death is a natural process. This information will help you know what to expect and how to respond in ways that will increase your confidence in helping your loved one accomplish this transition with support and understanding. This is only a guideline for what may happen. Your loved one will experience physical, emotional and spiritual changes. For some people the symptoms may come and go. Each person is unique and not everyone will experience all of the signs described here.
Changes may occur with:
- Agitation and restlessness
- Bladder and bowel function
- Body temperature
- Decreased appetite
- Increased sleeping
- Life review
- Oral secretions
- Urine output
- Vision-like experiences
Agitation and restlessness
Agitation and restlessness may occur. Motions may be repetitive, such as pulling bed linens or picking at the air. This can be due to changes in the metabolism of the body. Sometimes it may indicate emotional distress.
- Speak calmly to the patient.
- It is best not to stop or control motions.
- It may be helpful to perform activities that will be comforting.
- Read passages from a favorite book.
- Play soothing music.
- Help recall pleasant memories.
- Talk with your hospice team if you have questions.
Bladder and bowel function
Control of urinary and bowel functions will change. This is due to weakness and loss of muscle tone.
- Use Chux pads to keep the bed clean.
- Discuss other options for keeping the patient clean and comfortable with the hospice team.
- Talk with your hospice nurse about the possible need for a catheter (tube in the bladder).
- Bladder and bowel function may decrease and/or stop altogether.
Body temperature may increase or decrease. These changes may happen quickly. This is due to changes in the function of the brain.
- Use cool compresses for a fever.
- Use any medications as directed by the hospice nurse.
- Keep bed linens dry.
- Use warm blankets when temperature decreases.
Breathing may change and become irregular. Breaths may be rapid and shallow. There may be long delays between breaths. This is part of the decreasing respiratory function.
- Elevate the head of the bed.
- Turn the patient on his or her side.
- Use medications as directed by the hospice nurse.
Confusion about time, place, and identity of family members may occur. This may be due to changes in the metabolism of the body.
- Identify yourself by name when speaking.
- Speak softly, clearly and truthfully.
- Do not argue with the patient if he or she is confused.
The need for food and drink may decrease. This is common as the body’s physical processes change.
- The patient should not be forced to eat or drink.
- Ice chips, frozen juice or Popsicles may be helpful.
- Mouth moisturizer and Toothettes® may help keep the mouth moist and comfortable.
More and more time may be spent sleeping and at times the patient may be difficult to awaken. This is common as the body’s physical processes change.
- Plan your time with the patient when he or she seems more alert.
- Do not talk about the patient in his or her presence.
- Never assume the patient cannot hear.
There may be a need to remember what has been achieved in life and a need for reassurance that life has had meaning and value.
- Share special memories and talk about what has been most important in life.
- It might be helpful to the patient to hear what he or she has meant to you.
Oral Secretions may collect in the back of the throat, producing a rattling noise. The patient becomes too weak to cough up secretions or swallow. This may be difficult for the family but it is does not cause distress or suffering for the patient.
- Elevate the head of the bed with pillows.
- Keep the patient off his or her back; turn to either side.
- Use medications as directed by the hospice nurse.
Hands and feet may become cool to touch and you may notice the skin changing color. This is an indication that the circulation of the blood is decreasing because the heart is weakening.
- Keep warm blankets on the patient’s body.
- Do not use an electric blanket.
Spiritual preparation may be part of the dying process and may mean different things to different people.
- It is often helpful to express regrets, or simply express faith to a trusted person.
- Religious ritual, prayer or sacrament may be helpful.
- Most faith groups teach that the universe, God or a Supreme Being is loving, accepting, understanding and forgiving.
- Renewed spiritual or religious interest may be expressed, even if this has not been important for many years.
- It is not unusual for the dying person to want to connect with the faith of his or her childhood.
- The hospice team, chaplain or clergy of the patient’s faith group can help the patient with this.
Swallowing may be difficult. This happens as the muscles in the throat are getting weaker.
- Offer a small spoonful of liquid to test the ability to swallow.
- Discuss alternative ways to give medications with the hospice nurse.
Urine output may decrease and become “tea-colored.” This is due to decreased fluid intake as well as decreased circulation through the kidneys.
- Offer fluids, but do not force.
Vision-like experiences such as seeing family members who have already died is common. The patient may experience seeing a light, seeing angels, God, Jesus or a saint.
- Try to listen and accept what is being said.
- Do not deny what the patient is seeing.
- For many people these visions provide comfort and assurance of the next world.
Withdrawing from people and events may occur. This commonly occurs during the dying process and is the beginning of “letting go.”
- Try not to let your feelings be hurt.
- Allow the patient to choose how and with whom to spend time.
- Do not hesitate to talk with your hospice team if you have concerns.
Giving permission to your loved one to let go can be difficult. A dying person will sometimes try to hold on in order to be sure that those left behind will be OK. It is important to free your loved one from this concern and assure him or her that it is OK to let go. Saying “goodbye” is your final gift of love, and is one of the greatest gifts you have to give. Saying “goodbye” can be done in many different ways:
- “I love you.”
- “I’m sorry.”
- “Thank you.”
- “We will miss you, and it is OK to go.”
- “We will always love you and we will be OK.”
- Hold the patient’s hand.
- Lying in bed with your loved one.
- Recalling favorite memories.
Don’t hide your tears or apologize for crying. Tears express your love and can help you let go. It may be helpful for you and your family to discuss what to do at the time of death and develop a plan.
How you will know when death has occurred
Death has occurred when there is:
- No breathing
- No heartbeat
- No response to verbal or physical stimulation
- Eyes may be slightly open and fixed on a certain spot
- Jaw may be relaxed and mouth slightly open
What to do at the time of death
- When you think the death has occurred, try to remain calm. The hospice team is available to help you through this time.
- When you think the death has occurred, please call hospice.
- A nurse will come to your home to pronounce death.
- Hospice will assist with calling the funeral home, doctor and other family if needed.
- The family may choose to help the hospice staff by bathing and dressing their loved one.
- The hospice team will arrange for equipment pickup.
- The hospice social worker is available in assisting the family with making arrangements with the funeral home.
- The chaplain is available to conduct the funeral if requested.