By Elizabeth J. Clark, PhD, ACSW, MPH
Along with advanced medical technology have come the possibilities of prolonging life and prolonging death — possibilities that have led to various ethical issues concerning patients’ rights and the control of death. Below are thirteen rights of the bereaved person that should be respected by others, particularly health professionals, and that should be sanctioned by society.
The best care includes pain and symptom control and death without indignity. The family also has the right to expect the last wishes of loved ones to be carried out whenever possible—whether they are formally delineated (such as those in advance directives) or informally requested. Additionally, the family has the right to compassionate communication and adequate information in preparation for their loved one’s death.
Right #2. The bereaved have a right to a compassionate pronouncement of the death and to respectful and professional care of the body of their loved one.
There is no easy way to tell someone that a loved one has died. It is equally true that no one can ever be completely prepared for the finality of the pronouncement of death. It takes time for the fact of death to become a reality, and the emotional reaction of loved ones is often initially buffered by shock. The words of the pronouncement live forever in the memories of many bereaved, so physicians and health care professionals should choose these words carefully and be as gentle as possible in the telling.
Right #3. The bereaved have a right to view the body, and to grieve at the bedside immediately following the death, if this is their wish.
This right should be accorded whether the patient has been hospitalized for a long time or was brought in dead-on-arrival in the emergency room. Family members may wish time alone with their loved one to say a final and personal goodbye, or they may ask that a professional remain with them when they view the body. If at all possible, either request should be accommodated.
Right #4. The bereaved have a right to expect adequate and respectful professional care (both physical and emotional) for themselves at the time of their loved one’s death.
There are many questions regarding medical treatment of family members at the time of death. Do they officially become new patients? Are they a type of secondary patient? If given any kind of medical attention, must a hospital chart or record be opened for them? Most hospitals have some standard routine or procedure, whether formal or informal.
Emotional support should be provided for the bereaved at the time of death. This is often best done by a professional who is trained in grief counseling and who has adequate time to spend with the family members. Ideally, social workers and clergy should be available to perform this function. The inclusion of the hospital chaplain or social worker on the health care team is not only beneficial to the patient and family, but can also be supportive for the staff members who are touched by the death. These professionals can be available when the family is grieving at the bedside and can help them terminate that aspect of the mourning process in a timely fashion.
Oftentimes it is overlooked, or at least not stated, that besides the medical, scientific reasons, information from an autopsy can be beneficial for the family members. It is not unusual several days or weeks after the death (when the shock has subsided somewhat) for the family to have questions regarding the exact cause of death, and unless an autopsy has been performed these questions may go unanswered. The presence of the hospital chaplain can help allay religious concerns regarding an autopsy, and a social worker who understands the process can gently and adequately explain that the loved one’s body will be respectfully cared for and that an autopsy will not preclude a viewing with an open casket.
Right #6. The bereaved have the right to an adequate explanation of the cause of their loved one’s death and to answers regarding the illness, treatment procedures, treatment failures, and events surrounding the death.
Whether or not the bereaved have consented to an autopsy, they have the right to an explanation. This request for information may be made several days or even weeks after the death. Generally, a family member will call the physician with a few specific questions. Close attention should be paid to this request. If possible, rather than explaining on the phone, a special appointment should be made for the bereaved to meet with the physician. This ensures adequate time for the discussion, and allows the physician to make certain that records are complete and all of the needed information is available.
The Federal Trade Commission (FTC) published guidelines intended to help funeral providers comply with the Funeral Rule, requires funeral service providers to give consumers accurate, itemized price information and various other disclosures about funeral goods and services. This includes the right to make funeral arrangements without embalming, choosing only the goods and services wanted, and the funeral provider giving consumers a price list.
“The party undertaking disposal rightfully has the power to exercise control over all matters relating to the funeral” (1980:34).
The bereaved are not only emotionally vulnerable in the hands of unethical professionals, but may also be the target of other exploitative groups and schemes. Newspapers frequently carry reports of houses being robbed while family members attend funeral services or of elderly widows being taken advantage of financially. Other examples are monument salespersons or real estate agents looking to capitalize on their bereavement. Family members may occasionally take advantage of a relative, usually one who is elderly, who has gained an inheritance through the death of a loved one.
Right #9. The bereaved have the right to observe religious and social mourning rituals according to their wishes and customs.
Although the funeral ceremony is personal in focus, it is social in its consequences and the rites performed generally have important effects for the living. In a similar fashion, religious practices can facilitate the mourning process.
Realizing the finality of death and the permanent physical separation from the loved one is an extremely painful but necessary part of the mourning process. Funeral ritual and religious practices can be helpful in this aspect. Meaning must be given to death, and accustomed ritual can contribute to the meaning. The reality of the death is impressed on the bereaved by such practices as viewing the body, visitation by family and friends, the funeral service, and interment.
Right #10. The bereaved have a right to express their grief openly regardless of the cause of the loved one’s death.
Along with deritualization have come restraints in the expression of sorrow. In earlier times, mourning was an acceptable practice. Modern society discourages survivors from showing too much emotion about death.
Mourners no longer wear special clothes nor engage in any extended mourning behavior that would make other people uncomfortable. After the funeral, they are usually expected to return rapidly to their usual level of functioning, and scant opportunity is afforded them to express their grief openly. There are several special circumstances of death that receive even less consideration and support from others. These include violent death, death from suicide, and fetal loss. Additionally, two groups, children and older widows, are not permitted adequate mourning.
Murder and suicide produce extreme reactions and discomfort among friends and acquaintances. Violent death is accompanied by unspeakable horror, and friends are afraid to mention it for fear it will remind the bereaved of the tragedy. Grief from violent death is usually accompanied by anger and hatred and can necessitate painful legal procedures, particularly if the death was a result of crime. Death from suicide is stigmatizing and results in anguish, guilt, and shame. Researchers have been struck by the severity of psychopathology found in survivor-victims of suicide. Suicide is still considered a taboo topic in our society and because of social disapproval, discussion regarding a death from suicide remains limited, if not entirely prohibited.
Failed pregnancy constitutes another special category of grief. Miscarriages are generally treated as incidents to be quickly forgotten. There is no standard mourning ritual. Recognition that a pregnancy loss is as much a form of bereavement as is any other death, and that it must be mourned is fairly recent. Since opportunities to express emotions and grief in failed pregnancy situations are limited, unresolved grief may result.
Children and older widows are often not permitted adequate mourning, but for different reasons. With children, expression of grief is often limited in an attempt to protect them from hurt. As children grow, they are subject to a variety of losses. Some are developmental losses, some are object losses, and some include the loss of a loved one. Children need to have some intellectual understanding of death before they can react to it emotionally.
Right #11. The bereaved have a right to expect health professionals to understand the process and characteristics of grief.
It is particularly important for those who work with the bereaved to know what is normal concerning the grief process. While it is not expected that all professionals will be grief specialists or experts in grief counseling, social workers, physicians, nurses, clergy, funeral directors, and others who have contact with the bereaved throughout a loved one’s terminal illness and death should be knowledgeable about the grief process. The practitioner who understands the characteristics of grief is in a position to help the bereaved adapt and cope more successfully with the grief process.
Right #12. The bereaved have a right to education regarding coping with the process of grief.
Specifically, the clergy and the funeral director can sanction the expression of emotion, telling family and friends that it is not necessarily bad if the bereaved becomes emotionally upset while talking with them, and that it is not only acceptable, but often desirable, to allow their own feelings of sadness to show. This reduces the sense of isolation that the bereaved may feel. Also, the bereaved should be assured that they are not going crazy, and made to realize that preoccupation with the image of the dead loved one, intense sobbing, lack of interest in anything, and recurring waves of somatic distress are normal and natural. It is also important to emphasize that the period of acute grief is limited in time, and that recovery, while slow, will come.
Right #13. The bereaved have a right to professional and lay support including assistance regarding insurance, medical bills, and legal concerns.
Any death brings with it problems of settlement and decision. If the death was unexpected, and especially if no will was made, these problems multiply. The bereaved may be in a state of total confusion. A general suggestion is, when possible, to postpone making decisions. Getting the assistance of a qualified friend or the family lawyer or accountant also is valuable. The bereaved have a right to considerate understanding and timely assistance. Banks and insurance companies should make every effort to be accommodating. Ideally, they should have employees especially trained to work with persons who are trying to untangle the financial and legal problems that accompany a death.
A right has been defined as a sphere of decision that is or ought to be respected by other individuals and protected by society. This article has identified thirteen rights of the bereaved person that should be respected by others, particularly health professions, and that should be sanctioned by society. Essential to these rights is a thorough understanding of the grief continuum from anticipatory grief to the recovery stage. These rights accordingly require compassion, understanding, sensitivity, and patience.
ReferencesFederal Trade Commission (May 2007). FTC Facts for Consumers: Paying Final Respects: Your Rights When Buying Funeral Goods and Services. Federal Trade Commission. Bureau of Consumer Protection: Author.