Death and Dying

Definition

Death is the end of life, a permanent cessation of all vital functions. Dying refers to the body's preparation for death, which may be very short in the case of accidental death, or can last weeks or months in some cancer patients.

Description

Quality and method of death differs between cultures, circumstances and degrees of preparation. For many years, the terminally ill did not have choices in their manner of death, often enduring excruciating pain before the inevitable end of life. In recent years changes have been made to allow for a better quality for end of life, such as hospice care and preparatory actions by the patient.

It is important to recognize the differences in the ways people grieve. Each culture socializes a person in a certain way to deal with death. Death affects a person cognitively, behaviorally and socially. The death and grieving attitudes of a person affect the subjects of death, dying, bereavement, suicide and euthanasia. While a person may be able to verbalize feelings about death, internal contradictory feelings of anxiousness are common. Each person handles the subject individually, and seeking appropriate assistance will help the person to come to terms with the event in his or her own time and way.

Hospice care

A diagnosis of terminal illness is a sad and traumatic circumstance. Hospice care provides quality, caring services for both the patient and his or her loved ones. Most communities have a variety of hospice providers. A physician or hospital patient services can assist with provider names. The yellow pages of the phone book, or referral services from United Way, the local council on aging, Visiting Nurse Association or the American Cancer Society are other information sources.

While the patient should be the one to choose hospice care, it is always appropriate to discuss all care options. Hospice staffers are sensitive to concerns of both patient and family members and assist in the planning process as requested. Most physicians are aware of the services provided by hospice and will cooperate fully.

The hospice program will work closely with the physician to optimize the patient's care. The patient will sign consent and insurance forms, which are similar to those signed for hospital admission. There is also a form that states the patient's understanding that hospice care is aimed at pain relief and symptom control (palliative), rather than curative. Should a patient's condition improve and hospice services are no longer necessary, or the patient is in remission, services can be discontinued and the patient may return to regular care options. There is no obligation to remain with hospice care if it is not necessary. Should the patient need readmission to the program, medical insurance and Medicare may allow additional funding for this purpose.

Once hospice services are approved, the provider will perform a needs assessment, then assist in locating the equipment necessary for the patient's care. Quite often, the earlier needs are minimal, increasing as the illness becomes more serious. The purpose of hospice care is to make the home environment a comfortable haven for the patient.

The hospice team prepares a plan of care that is tailored to the patient. This will address the amount of care necessary to maintain the patient's comfort and well-being. The staff visits the home regularly and provides instruction on patient care, as well as answers medical questions and supports the caregivers.

As the illness progresses, care becomes more difficult. Hospice plans provide staff around the clock to consult by phone or to make visits if deemed appropriate. Respite care is also available for exhausted caregivers, so that the home can remain functional.

Hospice patients are cared for by a team of doctors, nurses, counselors, social workers, clergy, and volunteers, among others. Each provides assistance based on area of expertise. Additionally, hospices provide supplies, equipment, medications and other services related to the terminal illness. Hospice does not hasten nor does it delay the death process. However, hospices do provide specialized care that eases some of the anxiety and worry that accompany oncoming death.

The management of pain is very often an issue in terminal illness. The mission of hospice is to address all types of pain, not only the physical. Support is available to assist the patient in achieving the highest quality of life possible under individual circumstance. This may include physical and occupational therapists to keep the patient as self-sufficient and mobile as possible. Music therapy, art therapy, massage and diet counseling are available. The latest medications and devices for relief from pain and other symptoms is available. Also, counselors, some of whom are clergy members, assist both the patient and the family as needed/requested. However, hospice programs are not affiliated with religious groups and do not expect participants to adhere to any particular belief system.

The goal of the hospice program is to keep the patient both as pain free and alert as possible. Constant communication with the patient and caregivers assist in the high success rate of the hospice program. After the loved one's death, hospice programs provide both individual and group support for caregivers for at least one year, longer if necessary.

Preparing for death legally

An advance directive is a way to allow caregivers to know a patient's wishes, should the patient become unable to make a medical decision. People who are admitted to hospitals must be told about advance directives at the time of admission. Description of the type of care for different levels of illness should be in an advance directive. For instance, a patient may wish to have or not to have a certain type of care in the case of terminal or critical illness or unconsciousness. An advance directive will protect the patient's wishes in these matters.

A living will is one type of advance directive and may take effect when a patient has been deemed terminally ill. Terminal illness in general assumes a life span of six months or less. A living will allows a patient to outline treatment options without interference from an outside party.

A durable power of attorney for health care (DPA) is similar to a living will; however, it takes effect any time unconsciousness or inability to make informed medical decisions is present. A family member or friend is stipulated in the DPA to make medical decisions on behalf of the patient.

While both living wills and DPAs are legal in most states, there are some that do not officially recognize these documents. However, they may still be used to guide families and doctors in treatment wishes.

Do-not-resuscitate (DNR) orders can be incorporated into an advance directive or by informing hospital staff. Unless instructions for a DNR are in effect, hospital staff will make every effort to help patients whose hearts have stopped or who have stopped breathing. DNR orders are recognized in all states and will be incorporated into a patient's medical chart if requested. Patients who benefit from a DNR order are those who have terminal or other debilitating illnesses. It is recommended that this be discussed with a physician by a patient who has not already been considered unable to make sound medical decisions.

None of the above documents are complicated. They may be simple statements of desires for medical care options. If they are not completed by an attorney, they should be notarized and a copy should be given to the doctor, as well as a trusted family member.

Viewpoints

In the Hague, Netherlands, euthanasia was legalized in April 2001 and the country became the first in the world to allow doctors to end the lives of patients with painful, terminal illnesses. The Dutch Senate voted 46-28 in favor of the law, which took effect in the summer of 2001.

Prior to the vote, Health Minister Els Borst assured the legislators that euthanasia would not be abused by doctors because of the strict supervision that would accompany the measure. The practice has been discreetly practiced in the Netherland for decades, and preliminary guidelines were established by the country's Parliament in 1993.

In the United States, Oregon has permitted doctors to perform assisted suicides since 1996.

Mourning and grieving among cultures

The death of a loved one is a severe trauma, and the grief that follows is a natural and important part of life. No two people grieve exactly the same way, and cultural differences play a significant part in the grieving process. For many, however, the most immediate response is shock, numbness and disbelief. Physical reactions may include shortness of breath, heart palpitations, sweating and dizziness. At other times, there may be reactions such as loss of energy, sleeplessness or increase in sleep, changes in appetite, or stomach aches. Susceptibility to common illnesses, nightmares, and dreams about the deceased are not unusual during the grieving period.

Emotional reactions are as individual as physical reactions. A preoccupation with the image of the deceased, feelings of fear, hostility, apathy, and emptiness, even fear of one's own death, may occur. Depression, diminished sex drive and anger at the deceased, as well as extreme sadness may occur. Bereavement may cause short- or long-term changes in the family unit and other relationships of the bereaved.

It is important for the bereaved to work through their feelings and not avoid emotions. If this does not occur through family, friends, or primary support group methods, then a therapist should be consulted to assist with the process.

Various cultures and religions view death in different manners and conduct mourning rituals according to their own traditions. In the Christian faith, bodies of deceased are normally on view at a funeral parlor for one or more days before the actual funeral service. Specific hours are given for visitation or viewing.

Visitors come to express their condolences to the family and to bid farewell to the deceased. At times, funeral services are private. Various ethnic groups host a gathering after the funeral for those who attended. If it is held at the family's home, very often relatives and others will bring food and drink. Others choose to hold this event at a restaurant or some other public venue. It is common for these events to become a celebration of the life of the deceased, which also helps the bereaved to begin the mourning process positively. Memories are often exchanged and toasts made in memory of the deceased. Knowing how much a loved one is cherished and remembered by friends and family is a comfort to those who suffer the loss. Other methods of condolences include sending flowers to the home or the funeral parlor; sending a mass card (for Catholics); sending a donation to a charity that the family has chosen; bringing a meal to the family during the weeks after the death.

In the Jewish culture, bodies are buried as soon after death as possible, even as early as sundown of the day after death. For the Jewish population, this marks a sign of respect to the deceased. A seven-day period of morning follows, which is called Shiva or sitting Shiva. Friends and community visit the family and often bring food, so that the family does not have to worry about meals. Normal activities are suspended for the family of the deceased at this time, so that the bereaved can focus fully on their grief, thus enabling them to reenter life a bit easier after the period of mourning. The first meal that is served after return from the cemetery is called seudat havrach, prepared by friends and neighbors. Eggs and other round objects are traditionally served. These are objects that are symbolic of life, hope and the full circle of life, which ends in death. Flowers are not traditional; however, donations to charities chosen by the family are acceptable in memory of the deceased.

In the Muslim faith, everyone accompanies the funeral procession to the gravesite. The permitted mourning period for a deceased Muslim is three days, except for a widow, who is permitted to mourn her spouse for four months and 10 days. Traditionally, people leave the gravesite after offering condolences and offering assistance. However, some families do hold gatherings at home. Friends and neighbors bring food and drink to alleviate the family from the worry of providing refreshments. Flowers are often sent after the funeral to the family's home.

Buddhists normally hold a funeral within a week after the death. Flowers or a donation to a charity in the deceased's name are appropriate signs of respect. Caskets are often open, and guests are expected to view the deceased and bow slightly toward it. Friends are invited to call at the deceased's home after the funeral service but not before. The funeral service itself is usually held within 24 hours after the death. Then the body is kept at home until the traditional cremation ceremony. Flowers are acceptable from visitors and are placed at the feet of the deceased. Fruit is also a customary gift to bring to the family.

Professional implications

The primary concern of health care workers in most cases is preserving the life and health of an individual. Severely ill patients may be given nutrition and fluids intravenously or have their breathing supported by a ventilator. In cases in which the heart stops, CPR (cardiopulmonary resuscitation) is performed. In the case of terminally ill and dying patients, the role of health care professionals is to provide palliative care, ensure that proper arrangements are made for the person after death, and address the concerns of family members.

Physical signs

The causes of death vary greatly. Injuries, illness and more violent deaths occur routinely. However, as the time of death grows near for the dying, certain signs are common as their bodies begin to shut down. The time variable is as much as a few days and as little as a few hours. There is no particular order of events and not everyone experiences all of them. Support and caring by those surrounding the dying person are essential to make the passing as comfortable and with as little stress as possible.

The health care professional should keep the patient comfortable. Eggshell mattresses or foam cushions can prevent bedsores, as can changing the patient's position in bed. Sheets should be changed at least twice a week. Helping the patient with mouth care often makes him or her feel better.

There will be less interest in eating and drinking. Refusal of food indicates a readiness to die. Fluid intake may be reduced to only as much as will keep the mouth from feeling dry. At this time it is important for caretakers to offer food, drink, and medications, but they should not be forced. Pain may not be an issue when the end is near, so the patient may not feel the need for the medication.

The patient will begin to sleep more and begin to detach from his or her surroundings. The caregiver should not interfere, except to make the patient as comfortable as possible. The caregiver's presence is the most important factor.

Mental confusion may occur as less oxygen reaches the brain. Loss of hearing and vision may occur. The patient may complain of strange dreams. The caregiver should gently remind the patient of the day and time, who is present, and where the patient is at the moment. This should be done in a conversational manner. The caregiver should speak louder than normal if that is necessary, but not draw attention to the patient's loss of senses.

The room should be kept at the light and temperature that the patient requests. All conversations should be carried on as if the patient were aware. Hearing is the last of the senses to leave entirely, even in the case of stroke victims who sometimes appear completely unaware. However, many patients are able to speak even just a few minutes before death and are reassured by loving words.

Secretions may collect at the back of the throat. This may cause a gurgling sound as the patient breathes and possibly tries to cough up mucus. A cool mist humidifier in the room may help. If not, it may be advisable to turn the patient on his or her side, propped up with pillows, so that secretions can drain out of the mouth. The caregiver can cleanse the mouth with glycerin-dipped swabs, mineral oil, or cool water.

Near the end, there may be periods of non-breathing or irregular breathing. As death comes nearer, breathing may resume regularity but become shallow and mechanical. The patient may become agitated, try to get out of bed, hallucinate or pull at the bed linens. The caregiver should calmly reassure the patient and try to prevent the patient from falling if an attempt is made to get out of bed. A massage or soothing music may help.

As circulation slows down, the patient may lose the ability to realize his or her body temperature. The arms will become cool and begin to turn a bluish color. The underside of the body may darken. The caretaker should provide additional blankets or remove them as necessary. The patient should be kept as comfortable as possible.

Loss of control of the bladder and bowel may occur at the time of death. Breathing and heartbeat will stop. The jaw may sag open slightly as it relaxes. The eyelids may close partially, but the eyes will be fixed.

After a patient dies, health care staff allow family members time to grieve with the body before starting post-mortem procedures.