Consumer Information

Death And Dying

GENERAL INFORMATION:

What should I know about death and dying? Death is unique to each person. It may be expected if a person has certain diseases that can no longer be cured. It may happen suddenly or unexpectedly in a certain way or place, and may occur within a few seconds or minutes. Persons may suffer for months then slowly die in a short period of time. The following are some points you may consider about death and dying:

Don't be afraid to talk about death. Death is a normal part of life so it is OK to talk about it. It can be a positive experience not only to the dying person but also to the people who love him. The special needs of a person should be met before his time comes. The family must be aware that dying persons have special needs that can be met.
Dying is not always painful. Medicines and other supportive care may be given to decrease a dying person's pain and other symptoms. It is important to help him not suffer and enjoy a good quality of life until the time of his death.
Dying persons may also change. Although many believe that people die as they lived, it is also possible for people to change. By receiving excellent care during the last days of his life, he may realize the great opportunity he has. This may be used for forgiving, living his life more meaningfully, and have a good death.
Seeing a white light, tunnel, or a loved one who already passed away. As dying occurs, he may tell seeing his dead loved ones or other figures. These visions may happen due to physical and chemical changes in the brain. A dying person may experience changes in consciousness. He may have problems sleeping or thinking clearly. These include having delusions, hallucinations, or illusions, which are similar to dreaming while still awake.

What are the signs and symptoms of a dying person? No one knows for sure when death will occur. Different diseases may have different patterns of signs and symptoms as a person becomes close to his death. Knowing the normal physical changes as a person is dying can make this time more peaceful. When a person is close to death, a natural series of changes occurs. The following changes are usually not medical emergencies, and they may guide you into making the dying person be as comfortable as possible:

Activity: As a person nears his death, the body changes the way it uses energy. He may stop talking or responding, and begin sleeping more and more. He may also have body pain, weakness, or fatigue (feeling tired more easily).
Body temperature: The body temperature, especially his ears, nose, hands, arms, feet, and legs, may become cool to touch. This happens because of the decreasing blood circulation (flow) in his body.
Breathing patterns: Troubled or irregular breathing patterns often change as the body continues to stop working. There may be periods of rapid, shallow breathing with longer gaps between breaths.
Confusion or disorientation: These changes may be caused by decreased amount of oxygen in the brain. These may also be due to the chemical changes in the body or effects of his medicines. He may start having problems thinking clearly or may seem confused about the persons, time, or place.
Eating or drinking habits: He may have little or no interest in eating or drinking as his body shuts down. He may also have trouble swallowing or taking his medicines.
Skin color: The changes in skin color happen the same way as the body temperature changes. Poor blood flow to the skin, especially on the hands and feet, may cause it to look dull or darker. Sometimes, the skin may become mottled (blue and blotchy).
Coma: This happens when a person cannot be awakened or aroused from a deep sleep. Coma may lasts from minutes to hours before death occurs.

What care should be given to a dying person? There are many types of care which may be given to a dying person. He may need one or more of the following:

Physical care: Pain and other symptoms that cause discomfort or distress may be eased or controlled by giving medicines. Personal care needs, such as bathing and getting dressed, are also given. Therapies, such as physical, occupational, or speech may also be given as needed.
Emotional and psychological care: Counseling and emotional support for the patient and those close to the patient may be given.
Social care: Social workers and other caregivers arrange to find answers to questions about practical, financial, or other concerns. Answers to questions about insurance benefits or payment for palliative care or hospice services may also be given.
Spiritual and cultural care: Spiritual care is given depending on the patient's and family's spiritual needs and religious beliefs. These may include doing a special ceremony or ritual. Memorial services and funeral arrangements may be made based on the patient's last wishes.
Others: Equipment, such as an electric bed, a special mattress or a wheelchair may be provided. Other medical supplies which a patient may regularly need may also be provided. These include oxygen, bandages, catheters, and urine protection pads.

What can I do to help a dying person? A dying person may fear being alone, becoming a burden, or having pain. He may face these fears by getting relief from pain, nursing care, and the support of others. With the help of his family and caregivers, the patient will feel peaceful during the last part of his life. The following are more ways to care for a dying patient:

Keep the patient company. Always be willing to listen to the patient, especially if he talks about his life. Do things together such as watching television and reading books, or just stay with the patient.
Help the patient keep his hopes up and keep a positive yet realistic outlook. Help the patient manage stress, and be relaxed and comfortable. Work together with people whom the patient can trust to help him get through the hard times.
Learn more about the patient's condition. Knowing information about the patient's condition can help you better understand what he is going through. Many people want to be included in their treatment and care plan. Avoid holding back information that you think the patient should not, or does not want to hear. Work with caregivers and other people to help the patient.
Respect the patient's feelings, other emotions, and need for privacy. Let the person express fears and concerns about dying, such as leaving family and friends behind. Reassure the patient that you will follow and honor his advance directives, such as living wills.

What is end-of-life care? End-of-life care is given to patients whose conditions have worsened and may be nearing death. This type of care is mainly to provide comfort to the patient while maintaining his dignity. It may help a dying person face his fears of being alone, becoming a burden, or feeling pain. Every aspect of care, including the decision making for end-of-life issues will involve the patient and his family. Caregivers provide treatment and care according to the wishes of the patient or family, as well as his values and beliefs. Issues, such as organ donation and autopsy, will be talked about with respect, sensitivity, and concern. The patient’s family or friends, will be prepared for the patient’s loss, and will be supported through sad times after his death.

What are advance directives? Advance directives are spoken or written legal and medical care instructions (directions) made by the patient. These decisions are made beforehand in case something happens and the patient becomes unable to decide for himself. Examples of advance directives include living will, organ donation, and cardiopulmonary resuscitation (CPR) attempts. Without advance directives, someone who has permission will make these decisions for the patient. Ask caregivers for more information about advance directives.

What is palliative care? Palliative care is usually given to those who have been diagnosed with any type of terminal illness. A terminal illness is an active and worsening condition which cannot be cured and is expected to lead to death. Palliative care may also be given when caregivers are unsure if someone will get better or worse, or if it seems that a person may live for several months or years.

What are hospice services? Hospice services aim to improve the patient's quality of life during his remaining days. This may also help a dying person feel comfortable and free from pain until the time of his death. Hospice services are usually given to patients who may be diagnosed as having a shorter time to live. Some hospices take care of patients at any stage of terminal illnesses. These include cancer, dementia (problem with memory and understanding), heart, lung, or kidney disease, or any other condition. Hospice helps the patient accept his condition to relieve his suffering and be at peace with himself. The patient’s family or friends, or those who are coping with grief may also benefit from hospice services. They are helped to become prepared for the patient’s passing, and get support through sad times after his death.

What are the signs that death has occurred? The following signs may be present:

Body is very cold when touched.
Breathing is absent.
Eyelids may remain open and do not blink. Pupils become fixed and dilated (enlarged).
Heart stops beating.
Jaws may remain slightly open.
Muscles relax causing urine or stool to pass out. Four to six hours after death, muscles then stiffen.
Skin color becomes pale and waxen as blood settles.

What may happen when death occurs? There is no need to call 911 or a caregiver. The following may be done when death occurs:

All the remaining tubes, intravenous (IV) lines, and other equipment will be removed.
Family members may want clothing that may have been removed or cut away during resuscitation (reviving) efforts.
A spiritual counselor may do a religious ritual depending on the patient's or his family's wish.
If the patient or family agreed on organ donation, certain body organs or tissue may be taken for donation.
The body may be bathed or dressed. The funeral home may be called when the family is ready to have the body moved.
You may spend some time with the body. You may touch, hold, or kiss the person's body and say your good-bye.

What is bereavement? Bereavement is a feeling of sadness or loneliness due to a loss or death of a loved one. When someone dies, the people who were left behind may feel different for a while. They may cry a lot, feel angry, guilty, worthless, hopeless, helpless, or confused. Counseling and emotional support for them are given as part of hospice and palliative care. They are free to express their emotional needs with someone to listen. Patients and families may join support groups, or meet others in similar situations. Ask caregivers for more information about bereavement and support groups.

Where can I find support and more information? Accepting death is very hard. You may feel angry, sad, helpless, or frightened. You may blame yourself, other people, or the caregivers and think something went wrong. These feelings are normal. You, your family, friends, and other carers may want to join a support group. This is a group of people who may also have someone who is dying or just passed away. Contact the following for more information:

American Academy of Family Physicians
PO Box 11210
Shawnee Mission, KS 66207-1210
Phone: 1-913-906-6000
Web Address: http://www.aafp.org

National Hospice & Palliative Care Organization (NHPCO)
1700 Diagonal Road, Ste 625
Alexandria, VA 22314
Phone: 1-703-837-1500
Phone: 1-800-658-8898
Web Address: http://www.nho.org

CARE AGREEMENT:

A dying person has the right to help plan his own care. To help with this plan, he must learn about his condition or situation. He can then discuss options with his caregivers and his family. Working with them will help to decide what actions will be taken, such as end-of-life care. Other possible care and treatment may also be planned and given. The patient always has the right to refuse actions or treatment.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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