Death describes the cessation of life, and dying speaks to the manner in which death occurs. Although these are simple concepts to understand intellectually, the realms of personal experience and counseling to which they refer are quite complex. As noted by Schneidman, death entails many contradictions given the various ways in which it may be perceived. For some death is the destroyer, for others it is a redeemer. Similarly, it may be seen as both the greatest cruelty and as a means of release. Whereas fear of death tends to be universal, there are those who actively pursue it. Despite the reality that all are subject to death, each person’s experience is unique. We live with the fact of our death from the moment of birth and yet have little knowledge of the phenomenon. We thus tend to be fascinated by the subject even as we fear it.
Many explanations have been offered regarding the desire to bypass conversations about death. These include the fear that talking about death will encourage or bring it forth and the related thought that avoiding the subject will preclude its appearance. Additionally, most have great concerns about the dying process as well as the inevitable unanswered questions about what happens after they die and distress at the thought of losing the one life we are given. Awareness of a lack of meaning in our lives, negative associations around the decay of our bodies, apprehension about judgment, dread of the unknown, and fear that nothing awaits us on the other side of death all lead to a general sense of trepidation. Despite such pervasive attitudes, however, within the mental health professions the topic of death and dying has become an important area for consideration.
During the 19th century, the worlds of the living and of the dead generally were closely intertwined, with meaning flowing freely between them. However, as advances in medical technology and health care during the 20th century led to dramatic improvements in birth survival rates and exponential increases in life expectancy, a hope that death might eventually be conquered evolved. In the West, this hope gave birth to a culture that, until very recently, was reluctant to embrace death as either an integral part of life or a phenomenon to be studied and understood. Ours has been described as a death-denying society, with fear the norm and perceptions of death so negative that it is a topic studiously to be avoided.
The late 1960s and early 1970s were a highly volatile era in our social history, characterized by significant growth in awareness of and responses to the previously unmet needs of those who were dying. The concepts of hospice and palliative care were pioneered in England by Dr. Cecily Saunders, and in the United States, Dr. Elisabeth Kubler-Ross was at the forefront of the field of thanatology. The evolution of a new movement was marked by the first meeting, in 1974, of what eventually became the International Work Group on Death, Dying and Bereavement. In 1976, in response to the needs of a growing number of professionals involved in this work, the Forum for Death Education and Counseling, subsequently renamed the Association for Death Education and Counseling, was created. Today, many books, journals, conferences, and training opportunities on the many aspects of death and dying are available, and a variety of research investigations have shed a great deal of light on this subject.
Interpretations of Death
Kastenbaum proposed that interpretations of death may be understood on a continuum that proceeds from its perception as a diminished mode of life and continues to the idea of personal existence continuing much as usual; to its being construed as part of an ongoing process of spiritual development; to its perception as a progression composed of the three phases of waiting, judgment, and eternal culmination; to the notion of recycling as one is born, dies, and is reborn again and again; and to the idea of death as nothingness. In addition to the need to acknowledge individual interpretations of death, we now also recognize the importance of understanding the many ways in which death and dying can occur.
When death is unanticipated, persons who have died may have made no arrangements nor had an opportunity to express their wishes regarding such issues as organ donation, funeral arrangements, and burial preferences. Survivors of this type of death tend to experience lack of closure, having had no opportunity for farewells and often being left with feelings of guilt regarding unresolved conflicts. They may experience acute feelings of unreality, disbelief, shock, and a sense of many loose ends. Additional ramifications may include dissonance in terms of beliefs and meaning systems, particularly if the death occurred under tragic circumstances or involved the loss of a child. In the latter instance, the feeling of a death out of time may be extremely significant. A further complicating factor for survivors relates to the type of unanticipated death experienced.
Guilt for not having done things differently, and thus somehow being involved in causing the fatality, is typical following death by accident, given the connotation of chance or fluke associated with this term.
Irresponsibility on the part of another who contributed to the death also may add complexity, especially when not acknowledged appropriately.
Sudden death caused by a physical problem may lead to the perception that it could have been prevented. Survivors thus may tend to blame themselves or others for not having responded properly.
Violent or Wrongful Death
Survivors may worry about the suffering experienced by victims of violent or wrongful death in the process of dying. They may rage about the injustice at the same time that they have to deal with disfigurement or mutilation of the body of the person who has died. Involvement with the media or the legal system may prolong their agony.
Those left behind in the wake of a completed suicide typically desire privacy. They may have guilty feelings and experience an inability to speak about the death given the social stigma involved.
With anticipated death, dying persons may put their affairs in order, participate in funeral arrangements and burial decisions, and achieve closure in significant relationships. They also have an opportunity to assimilate what is happening and realign their beliefs and meaning systems. At the same time, foreknowledge tends to initiate a period of anticipatory mourning for everyone involved. Further, in an extended dying process, significant stress may be placed on caretakers, and dying persons may feel a sense of remorse about being a burden. When the sick person dies, feelings of relief may be accompanied by feelings of guilt for what are perfectly normal, if mixed, reactions. Throughout the dying process, many additional issues also may require attention.
An important task faced by dying persons involves coming to terms with imminent death. Kubler-Ross described this process as involving the five stages of denial, rage, bargaining, depression, and acceptance. However, it is unlikely that all dying persons go through each stage, or that they necessarily follow the same sequence of emotions. Indeed, many have little or no trouble accepting the fact of their dying, experiencing it in a variety of ways.
Once the inevitability of imminent death is acknowledged, issues around how a person wishes to die arise. If the person prefers to die at home, hospice may be an option. Advocates of hospice believe that supportive, palliative care until physical death has been medically determined is the most appropriate response to a terminal diagnosis. However, candidates for hospice must meet criteria pertaining to the anticipated time until death and the presence of appropriate caregivers. When hospice is not an option or not preferred, the choice may be to die in a hospital and often to continue treatments aimed at cure until all efforts in that regard have been exhausted.
The Impact of Technology
The development of highly sophisticated technology, including various life-support systems and advancements in the realm of organ transplantation, has greatly enhanced the ability of medical science to prolong life. Given these developments, both the medical and legal communities often struggle around questions regarding when death has occurred and when life-prolonging mechanisms should be discontinued. One of the earliest efforts to alleviate confusion involved the delineation of the differences between a vegetative state and brain death.
A set of standards, formulated in 1968 by a group of physicians at the Harvard Medical School and now known as the Harvard Criteria, has become the means for determining when the brain has reached a condition in which it is considered to be irreversibly nonfunctional. Accordingly, death is understood to have occurred when the patient is unreceptive and unresponsive, there is no spontaneous respiration or muscular movement, the usual reflexes are absent, the brain is devoid of any electro physical activity, and there is no circulation of blood to or within the brain.
In addition to standards used as a basis on which to make difficult decisions, the field of bioethics has evolved. Those who work in this realm seek to formulate appropriate responses to dilemmas around the use or withdrawal of medical treatment. The overarching goal is making morally and ethically prudent decisions in the face of biotechnology that has advanced to the point that the boundary between life and death often is blurred.
Euthanasia is the intentional termination of life by someone at the request of the person who is dying, while assisted suicide refers to the provision of help to patients at their request so they may terminate their own lives. In the medical realm, voluntary active euthanasia (VAE) occurs when the physician gives a medication or somehow intervenes to cause death at the request of the patient; physician-assisted suicide (PAS) occurs when the physician provides either information, resources, or direct assistance but the patient terminates her or his own life; and with physician aid-in-dying, the physician discontinues treatment at the request of the patient.
Despite the various ways euthanasia may be construed and implemented, Oregon is the only state in which PAS is legal. Although there are no states in which either suicide or attempted suicide is prohibited, 36 states have statutes according to which assisted suicide is a criminal act. In seven states, assisted suicide is a criminal act through the common law, and in six other states, the laws around assisted suicide are unclear. However, according to the U.S. Supreme Court, there are two constitutionally permissible means of alleviating pain for dying persons when all other methods fail: When these persons are treated with either a “morphine drip” administered at a level to eliminate pain or with “terminal sedation” that produces continuous anesthesia, death ultimately will occur. Patients become eligible for such procedures by means of advance directives prepared in compliance with state law and legally witnessed or notarized.
The validity of advance directives varies by states, although many have followed California in enacting living will statutes and other legislation that focuses on procedures that have the goal of prolonging life. Passed in 1976, the California Natural Death Act permits individuals, in specific situations, to make prior plans for treatment at the end of life. This statute legally sanctions advance directives and also “protects physicians from being sued for failing to treat incurable illnesses.”
According to the federal Patient Self-Determination Act of 1990, healthcare providers must give patients information about their right to make advance directives, have written institutional policies regarding advance directives, and document whether or not a patient has executed one. Advanced directives include instructions regarding end-of-life decisions, ideally made prior to serious illness. They may be designed as either a living will or a healthcare proxy. Living wills detail instructions regarding desired medical intervention should persons become incapacitated. With a health care proxy, created by means of a durable power of attorney, persons designate someone to be responsible for making health care and treatment decisions in the event of future incapacitation.
Advance directives may focus on either clinical conditions or the values history. With the former, the circumstances under which persons would or would not want to live are specified. With the latter, the circumstances under which life is not preferred, even when further medical treatment is available, are described. In either case, persons creating advance directives must be competent and able to understand what they are doing, act voluntarily, be fully informed regarding all ramifications, and freely give consent to implementation. Ethnic and cultural variations and values should be taken into consideration, documents must be internally consistent, and they must focus only on those dimensions included within the scope of standard medical practice.
Nearing Death Awareness
Hospice nurses have noted that as those who are terminally ill move closer to death, they may experience visions or sense the presence of departed loved ones, spiritual beings, or a bright light, or they may experience awareness of being in a particular place. They may report sensations of great warmth and love. They may attempt to communicate important messages to family, friends, and other caregivers. Engaging in a life review is also likely. While dying persons generally have little fear as the end approaches, there often is great concern about those who will be left behind.
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