Death and Dying (Education Credit: 30 min)

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1. The 5 Stages of Grief

Death can occur suddenly without warning, or it can be expected. Older people or people with terminal illnesses may have time to prepare for death. A terminal illness is a disease or condition that will eventually cause death.

There are five stages that dying people and their families or friends may reach before death… Not all clients go through all the stages. Some may stay in one stage until death occurs. Clients may move back and forth between stages during the process.

Denial: People in the denial stage may refuse to believe that they are dying. They often believe a mistake has been made. They may talk about the future and avoid any discussion about their illnesses. This is the “No, not me” stage.
Anger: Once they start to face the possibility of their death, people may become angry that they are dying. Anger is a normal and healthy reaction. Even though it may be upsetting, the caregiver must try not to take anger personally. This is the “Why me?” stage.
Bargaining: Once people have begun to believe that they really are dying, they may make promises to God or somehow try to bargain for their recovery. This is the “Yes me, but…” stage.
Depression: As dying people become physically weaker and symptoms of the illness get worse, they may become deeply sad or depressed. They may cry or withdraw or be unable to perform even simple activities. They need additional physical and emotional support. Listen to and be understanding of clients.
Acceptance: Most people who are dying are eventually able to accept death and prepare for it. They may make plans for their last days or for the ceremonies that may follow their death. At this stage, people who are dying may seem emotionally detached.

These stages of dying may not be possible for someone who does suddenly, unexpectedly, or quickly. You cannot force anyone to move from stage to stage. You can only listen and be ready to offer your help.

2. The Grief Process

Dealing with grief after the death of a loved one is a process as well. Grieving is an individual process. No two people will grieve in exactly the same way. Clergy, counselors, or social workers can provide help for people who are grieving. Family members or friends may have any of the following reactions to the death of a loves one:

Shock: Even when death is expected, family members and friends may still be shocked after death occurs. Many people do not know what to expect after the death of a relative or friend and may be surprised by their feelings.
Denial: It is easy to want to believe that everything will quickly return to normal after a death. Denying or refusing to believe they are grieving can help people deal with the initial hours or days after a death. Grief can be so overwhelming that some people may take years to face their feelings. Professional help can be very valuable.
Anger: Although it is hard to admit it, many people feel angry after a death. They may be angry with themselves, at God, at the doctors, or even at the person who died. There is nothing wrong with feeling anger as part of grief.
Guilt: It is very common for families, friends, and caregivers to feel guilty after a death. They may wish they had done more for the dying person. They may simply feel that he or she did not deserve to die. They may feel guilty that they are still living.
Regret: Often people regret what they did or did not do for the dying person. They may regret things they said or did not say to a person who has died. Many people have regrets for years.
Sadness/loneliness: People may suffer headaches or insomnia when they cannot express their sadness. Many things may remind people of the person who died. The memories may be painful at first. With time, those who survive usually feel less lonely, and memories are less painful.

3. How to care for a dying client

Follow the care plan when caring for a client who is dying. However, keep the following guidelines in mind to help you make the client as comfortable as possible:

Diminished senses: Reduce glare and keep room lighting low. Hearing is usually the last sense to leave the body, so speak in a normal tone. Tell the person about any procedures that are being done or what is happening in the room. Do not expect an answer. Ask few questions. Encourage family to speak to the client, but to avoid subjects that are disturbing. Observe body language to anticipate a client’s needs.
Care of the mouth and nose: Give mouth care frequently. If the client is unconscious, give mouth care every two hours or more as needed. The lips and nostrils may be dry and cracked. Apply lubricant, such as lip balm, to lips and nose.
Skin care: Give bed baths and incontinence care as needed. Bathe perspiring clients often. Skin should be kept clean and dry. Change sheets and clothes for their comfort. Keep sheets wrinkle-free. Skin care to prevent pressure ulcers is important.
Comfort: Pain relief is critical. Clients may not be able to communicate that they are in pain. Observe your clients for signs of pain and report them.
Environment: Display favorite objects and photographs where the client can easily see them. They may provide comfort. Play music if the client requests it. Make sure the room is comfortable, appropriately lit, and well ventilated.
Emotional and spiritual support: Clients who are dying may be afraid of what is happening and of death. Listening may be one of the most important things you can do for a client who is dying. Report any comments about fear to your supervisor. People who are dying may also need the quiet, reassuring, and loving presence of another person. Touch can be very important. Holding your client’s hand as you sit quietly can be very comforting. Do not avoid the dying person or his family. Do not deny that death is approaching. Do give accurate information in a reassuring way. No one can take away another’s fear of death. However, your supportive and reassuring presence can help. Some clients who are dying may also seek spiritual comfort from clergy. Provide privacy for visits from clergy and others. Do not discuss your religious beliefs with clients or their families or make recommendations. If you are not comfortable with the topic, dying clients will feel it. Speak to your supervisor if you need resources to help you deal with your feelings.

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4. Treating dying clients and their families with dignity and honoring their rights

Remember that whether you agree or disagree with a client’s decisions, the choice to refuse care is not yours. It belongs to the person and/or his or her family members and do not judge them. They are most likely following the client’s wishes.

Privacy is a basic right, but privacy for visiting, or even when the person is alone, may be even more important now.

Other rights of a dying person are listed below in “The Dying Person’s Bill of Rights.”

I have the right to:

Be treated as a living human being until I die
Maintain a sense of hopefulness, however changing its focus may be
Be cared for by those who can maintain a sense of hopefulness, however changing this might be
Express my feelings and emotions about my approaching death in my own way
Participate in decisions concerning my care
Expect continuing medical and nursing attentions even though “cure” goals must be changed to “comfort” goals
Not die alone
Be free from pain
Have my questions answered honestly
Not be deceived
Have help from and for my family in accepting my death
Die in peace and dignity
Retain my individuality and not be judged for my decisions, which may be contrary to the beliefs of others
Discuss and enlarge my religious and/or spiritual experiences, whatever these may mean to others.
Expect that the sanctity of the human body will be respected after death
Be cared for by caring, sensitive, knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death

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5. The goals of a hospice program

Hospice is the term used for the special care that a dying person needs. It is a compassionate way to care for dying people and their families, taking care of their physical, emotional, and spiritual needs.

Hospice care may be provided in a hospital, at a special care facility, or in the home. A hospice can be any location where a person who is dying is treated with dignity by caregivers.

Any caregiver may provide hospice care, but often specially trained nurses, social workers, and volunteers provide hospice care. The hospice team may include doctors, nurses, social workers, counselors, home health aides, personal care aides, therapists, clergy, dietitians, and volunteers.

The goals of hospice care are the comfort and dignity of the client. This type of care is called palliative care. Focus on pain relief and comfort, rather than on teaching clients to care for themselves. You must be aware of the feelings of family caregivers. Encourage them to take breaks and take care of themselves. However, do not insist that they do so. Many want to do all they can for their loved one during his or her last days. Do observe family caregivers for signs of excessive stress. Report any signs to your supervisor. Your agency may be able to refer them to local support services.

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6. Common signs of approaching death

Death can be sudden or gradual. Certain physical changes occur that can be recognized as signs and symptoms of approaching death. Common signs of approaching death include the following:

Blurred and failing vision
Unfocused eyes
Impaired speech
Diminished sense of touch
Loss of movement, muscle tone, and feeling
A rising or below-normal body temperature
Decreasing blood pressure
Weak pulse that is abnormally slow or rapid
Alternating periods of slow, irregular respirations and rapid, shallow respirations, called Cheyne-Stokes respirations
A “rattling” or “gurgling” sound as the person breathes
Cold, pale skin
Mottling (bruised appearance), spotting, or blotching of skin caused by poor circulation
Perspiration
Incontinence (both urine and stool)
Disorientation or confusion

When death occurs the body will not have heartbeat, pulse, respiration, or blood pressure. The muscles in the body become stiff and rigid. This is a temporary condition called rigor mortis. The eyelids may remain open or partially open with the eyes in a fixed stare. The mouth may remain open. The body may be incontinent of both urine and stool.
Though these things are a normal part of death, they can be frightening. Inform your supervisor immediately to help confirm the death.

7. Describe postmortem care

Postmortem care is care of the body after death. It takes place after the client has been declared dead by a doctor or nurse. Be sensitive to the needs of the family and friends after death occurs. They may wish to sit by the bed to say goodbye. Allow them to do so. Be aware of religious practices that the family wants to observe. Perform assigned tasks.

Guidelines for Postmortem Care:

After death, the muscles in the body become stiff and rigid. This may make the body difficult to move. Talk to your supervisor if you need help performing post mortem care.
Bathe the body. Be gentle to avoid bruising. Place drainage pads where needed, perineum, or the genital and anal area.
Check with the family about how to dress the client and whether to remove jewelry.
Do not remove any tubes or other equipment. A nurse or the funeral home will do it later.
If instructed to do so, put dentures back in the mouth and close the mouth. You may need to place a rolled towel under the chin to support the mouth in closed position. Alternatively, you can place the dentures in a cup near the client’s head.
Close the eyes carefully. If the eyes do not remain closed with gentle pressure, you can place cotton balls, moistened with warm water or a warm folded washcloth over them for a few minutes
Position the body on the back, with legs straight and arms folded across the abdomen. Place a small pillow under the head.
Strip the bed after the body has been removed.
Open the windows to air the room, as appropriate, and straighten up.
Arrange personal items carefully so they are not lost
Document according to agency policy
Do not leave the home until the client’s body has been removed or until your supervisor says you may leave.

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8. Postmortem practices

You may be invited to attend a funeral or other ceremony following the death of a client. As someone who has cared for the deceased person, you may be grieving as well. If you want to attend the service, check with your supervisor first to make sure it is appropriate.

Just as responses to death vary widely, funeral and burial practices vary from culture to culture and region to region. No matter what rituals or services take place after a person had died, do not be judgmental or make critical comments. Be respectful and professional.

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Adapted from: Hartman Publishing, Inc. (2013). Providing Home Care A Textbook for Home Health Aides, Ch 20, 340-349