It has been said that there are two things
that man cannot face the
sun and his own death. Yet, from the
very instant of birth, we are on a long, it is
hoped, trajectory toward
death. Notwithstanding, all too few of us realize that a life is filled
with major and minor preparations for death. There are constant
superficial losses whose
value in the process of this preparation should not be underestimated. The
loss of a job, even voluntary movement from one job to another, loss of
job seniority, loss of social status, loss of financial security-all are
certain, less evident, examples of factors in this preparatory process.
How many children survive their first haircut without tears? How many
long-haired youth today dread, with accompanying and often extreme
emotional conflicts, the parturition from this possession? And speaking of
parturition, all are aware of the postpartum "blues," which often are seen
to follow childbirth, and the sometime devastating effects on many young
mothers. All of these preparatory losses can be accompanied by and
complicated by evidences of grief, both anticipatory, prior to the loss,
acid consequent, following the loss.
Therefore, it has been concluded by some,
Dr. Arthur Carr, for instance, that these losses prepare the human being
for the greater losses in
his life, the deaths of his loved ones and, finally, the loss of his own
life. As caretakers in the economy of a human's being, we should theorize
about his ability to accept these losses through certain adaptive processes which
include anticipatory grief and the work of bereavement; and we should try
to affect the psychosocial consequences and patterns of his recovery from
them at the same time that we also assist our dying patients to the
boundaries of mortality. Death must be accepted and faced-the death of the
individual and the death of the loved ones who predecease him.
When a fatal illness is
diagnosed, as death approaches, and after the patient's death, there are
many who are involved in the care of the patient, as part of his
trajectory: his family, the nurse who tends him, the physicians who treat
his illness, and the minister and social worker, among others, who offer
spiritual guidance and counsel. In addition to the dying patient, all of
these important role players, some to a greater and others to a lesser
extent, usually pass through stages of one or another form of grief and
bereavement and/or deal with the emotional problems of terminal care by
various defense mechanisms, such as denial. In trying to conceptualize
this, the context of the title of this discourse is offered, to wit: the
continuum of anticipatory grief, the dying of the patient, the death as
experienced by survivors, and bereavement.
Austin
Kutscher teaches at the Columbia University College of Dentistry. He is
the president of the Foundation of Thanatology, an institute concemed
with the problem of death and dying from a variety of perspectives. He Is
also the author of Death and Bereavement
and the editor of a volume on death,
But Not to Lose.
According to Dr. Elisabeth Kubler-Ross, in
her book On Death and Dying, the dying patient proceeds along a
path characterized by various stages until hopefully, but far from always,
he reaches the point, or stage, of acceptance. These stages are ( I )
denial and isolation-failure to acknowledge the facts, disbelief in the
face of overwhelming medical evidence, and a compulsion to be alone, to
isolate himself, submerged in the depths of depressed and anxious
thoughts; (2) anger-it can't be tale, someone is lying, the doctors don't
know what they are doing; (3) bargaining;-if 1 do this, it won't be so; if
I do that, perhaps something heroic, there will be a postponement of what
seems to be inevitable; (4) depression-the sense of great loss; the
reduction of the self-image; the realization of one's own shattered
vulnerability and mortality; stress over the impact of medical expenses
that go on and on; worry over the family at home; the realization that
soon all will be lost, that the "me" will be gone from the scene; that
death must be faced; and finally, if so, blessed; (5) acceptance--the
inevitable will come no matter what is done; it must be faced by "me"; all
will be lost; I do not know what will follow, but so be it: I have lived
my life and tried to do my best.
Grief is the phenomenon of human behavior
in survivors which accompanies loss; and its most striking effects are
apparent when a beloved figure departs from life The classic study of
grief reactions was written by Dr. Erich Lindemann, who observed and
treated both the victims and their survivors following the tragic Coconut
Grove nightclub fire that took place in Boston in the 1410s. According to
Lindemann, grief is a definite syndrome with somatic and psychological
symptomatology, although medical definition may not recognize it as such.
Tire most striking characteristics are weeping, a tendency to sighing
respiration, complaints about lack of strength, feelings of physical
exhaustion, digestive disturbances (such as inability to eat, repugnance
toward food and/or abdominal discomfort), and so on. (Tire bereaved may
demonstrate a sense of unreality and detachment and may be intensely
preoccupied with the image of the departed one. Guilt concerning acts done
or not done may plague him; accompanying this guilt are extreme feelings
of irritability and anger expressed toward others or toward the deceased.
The bereaved person is frequently restless but unable
to initiate meaningful activity. Even in the performance of his daily
routine, he finds the smallest effort almost beyond his energies and
capabilities. Depression, agitation, and insomnia aggravate his physical
and mental status.
Frequently, however, grief may have found
its fullest expression before the death of this loved person. Its effects
strike the bereaved-to-be at the moment the hopeless prognosis is
pronounced, as he' becomes aware of the truth of the situation.
Therefore, the process of mourning begins long before the significant
loss. It is contended here that during this period of anticipatory grief,
the bereaved-to-be passes through some parallel, if not identical or
synchronous, stages in relation to the dying patient (stages which would
be, positively identifiable if accorded similar and adequate study): He
denies and disbelieves the medical evidence; lie isolates himself, fearing
that a sharing of his thoughts and doubts will only aggravate his torment
and that of the dying patient, and other members of the family. lie is
angry-perhaps at the patient who hadn’t taken care of himself" and who is
going to leave him to face the world alone, perhaps also to raise a family
alone; or maybe at the doctors who refuse to do enough, or who are
incapable of doing enough, or who may, lie thinks, be lying to him or who
are inordinately brutal in disclosing the facts; or perhaps lie is angry
at the nurse who brushes aside his agonizing questions because it is not
in her province to answer them, or who is agonized herself by them and
shields herself by denial, or who never seems to be around when she is
needed, or who seems to be adding to the patient's discomfort when she
fails to respond immediately to his ring-or perhaps his anger is directed
at God; or various combinations of these and a host of others.
The family member, in this context almost
always a spouse or a parent, begins to bargain: If I do this, maybe pain
will disappear, maybe even my loved one will be healed; if only I pray,
hard enough; if I perform some other demanding effort, this misery will go
away and life will continue as before. He becomes depressed by thoughts of
the present, by facts and fantasies of what the future will bring in
suffering for all concerned-both during and after the course of the
illness; he finds that lie cannot function, cannot summon up either his
emotional or physical resources to face each clay, as it comes;
and so he is anxious and depressed; lie grieves-even mourns. Finally,
hopefully, lie accepts the facts: death will come; it must and will be
faced; and I will be left to do as best I can in the future; there is no
choice, and I must do what has to be clone. And-eventually-I too will face
my own mortality: will 1 and how will I be able to accept that?
There appears to be a timetable of grief,
oriented to the date of the onset of a fatal illness as well as to the
date of the loved one's death. And this timetable relates the period of
grief to some undetermined finite period of time. The presence of grief in
anticipation of the loss, both in subtle and in pronounced ways, alter the
trauma of the aftermath. When death has been prepared for by those who
will survive, these bereaved may more readily find their way back to
normal functioning. The contention here, requiring intensive study, is
that there is a kind of symmetry and replication of effects: the more the
anticipatory grief reaction before the loss, the less the bereavement
effects following it; the less the anticipatory grief reaction before the
loss (as must be inevitable in cases of sudden accidental death or death
from an acute myocardial infarction or heart attack), the more the
bereavement effects after the loss. Anticipatory grief creates an
atmosphere, however ineffable, of adjustment to the potential loss; and
so, to continue our hypothesis, then, is not anticipatory grief in its
most simplistic course and form a generally repressed projection backward
of bereavement itself?
The physical syrnptomatology of grief is
most apparent during the bereavement period. The bereaved person presents
n multitude of symptoms, as Lindemann and more recently Dr. Paula Clayton
have related. Further and more recent studies, by Dr. Dewi Rees in Wales,
Dr. C. Murray Parkes in England, and Dr. David Maddison in Australia, have
also produced data which indicate a greatly and clinically significantly
higher morbidity, rate among the bereaved (particularly
following the loss of a spouse and especially in the older age groups)
and, more importantly even, a higher rate of mortality during the first
six months of bereavement-tapering off thereafter. Neglect of the self,
for instance, may play some part, but there are some disease processes
that cannot truly be related in such a manner, among them perhaps even
cancer. It is contended here that parallel studies of anticipatory grief
would likely reveal findings comparable in one of many such aspects.
Emotionally, both the patient's attitudes
and desires and those of the bereaved-to-be may change from day to day:
now lie may want to hear the truth and talk about it; tomorrow he may
detach himself from it and/or deny it-depending on the stage achieved-and
the changes of patient and family may be synchronous or may not. Not at
all unrelated to the above, a new fact or sign or happening-and
interactions involved-may occur, particularly within the cold walls of the
institutional setting, with complicated emotional outcomes for all
involved.
It is documented fact that most people
today, in this country, die in hospitals and not at home (as was more
often the case in the past). The hospital represents scientific
achievement, the hope for cure with new and remarkable medications or
machines, or, at the least, a dream of prolonging the life of a beloved
one. But hospitalization in itself causes separation; separation results
in anxiety; separation anxiety in turn further reduces the contact of both
family and friends with the patient and, in so doing, increases everyone's
anticipatory grief reaction; and the (lying person, detached from his
familiar surroundings and unable to be a vital member of society, goes
through this period in a most extreme state of anxiety, suffering his own
highly specific form of separation anxiety and anticipatory grief.
The patient may have
complaints, but they frequently mask what his real complaints arc-among
many others, fear of death, distrust of those who, he often rightfully
feels, may be concealing facts or at least something from him, and so
forth. He truly has the right to grieve his own dying but is seldom given
the opportunity to express his feelings and concerns. lie usually finds
himself being abandoned as his condition deteriorates; the living has
already "written him off." He becomes the central figure in a great
"conspiracy of silence"- forbidden to voice his fears and lying to
concerning his condition and prognosis. The (lying patient nearly always
knows the truth but often doesn't know whether his kin have actually been
told the worst. In the process, lie may become antagonistic to them or, in
many cases, may try to protect and shield his loved ones from the
knowledge that lie has. And this brings us to that widely debated
question: Should the patient be told the truth, that death for him is
imminent?
Although we have been
debating this subject for decades, from the above it may he surmised that
I think that this may actually be the wrong question. The question to be
coped with should really be: How should we deal with what we must
assuredly assume he "knows" or has discerned?-what Reverend Robert Reeves
describes as the "moment of truth" between the patient and his
bereaved-to-be.
First of all, let it be
understood that the nurse often talks the most with the patient and is in
the best position to "read his signals." Her counsel should always be
considered as extremely relevant. The life style of the patient should be
considered-how lie handles trouble, reacts to bad news, responds in a
crisis. And the life style of the person in attendance who does the
"telling" -the doctor, family member, or pastor-is also a factor which
will profoundly affect the patient's future relationships with all those
about him. And let us not forget that these caretakers who themselves are
often desperately anxious about death, including their own, whether
consciously or unconsciously, may erroneously convince themselves through
denial mechanisms that the patient does not know the truth-or want to.
Most patients actually
seem to fear the process of dying more than the unknown quantity, death.
Yet, if those who will mourn his death would share their feelings with him
in the living now, if emotional expression rather than emotional
repression were to be allowed, many fears could be allayed; for many more,
the terminal days could be a time for a kind of exquisite loving,
sharing, and planning, and anticipatory grief for all would take on its
most useful form and beneficent qualities. When there has been a free
exchange of thoughts and emotions between two married people, or parents
and a child-under these circumstances, the survivor is left with a
substantial foundation on which to rebuild his life, a product of the
positive effects of anticipatory grief, and with memories which become
supportive during the days of sorrow and bereavement which follow the
death. All such experiences represent a catharsis that ultimately
allows the one to
accept his own death with less fear (because he knows that he is loved and
will not be abandoned) and his survivors to face the future with greater
strength and a more suitably adjusted and positive life pattern. Hence,
let us recapitulate the continuum of anticipatory grief, lying, and
bereavement, well or badly enacted, as suggested in the title of this
essay.
But too often the
caretakers delude themselves into what I called above "tire conspiracy of
silence." The terminal patient is shielded from the truth. True, not all
patients do want to know, and not all should necessarily be told;
and -if denial of the truth is the only way a patient can handle his
dying, then he should be allowed his denial. But the greatest cruelty is
inflicted when the patient does want to know and is not told.
Observation has revealed that most patients crave an opportunity to
ventilate their thoughts and feelings. Only in recent years, however,
through the work of Dr. Herman Feifel, Dr. Elisabeth Kubler Ross, and Dr.
Avery Weisman, among others in the field of psychiatry and psychology, has
the value of allowing the dying patient to ventilate his fears been
appreciated. Perhaps above all, though, both for the patient and for his
family, hope should never be utterly destroyed. The treatment plan should
always be projected beyond the presumed life expectancy, recent
conceivably hope-engendering developments in medical research can be
discussed, and so on-so that at least a glimmer of hope never dies. And
even when hope for survival is only a very dim all(] fading light indeed,
a whole new series of realistic achievable goals cart effectively be
introduced for all involved so that life may be lived to the very end.
Such realistic goals can be, for example, strong reinforcement of the
already acknowledged and existent love of a spouse, the summoning of
strength to live until a grandchild is horn, the settling of unsettled and
hence troubling personal affairs, the resolution of family difficulties
and intensely personal differences between the dying patient and
surviving members of the family, reconciliations, and perhaps most
important of all, in some instances, the hope of achieving what Dr. Ross
has called "acceptance"-in the wake of which death with dignity can then
be achieved.
In Great Britain, Dr. Cicely Saunders has
established a "resting place for the weary traveler," the dying person,
called St. Christopher's Hospice, a unique-and I should not perhaps,
since she does not, even call it this-hospital for the terminally ill,
where heroic measures are not taken to sustain life or prolong dying,
where pain is controlled even as it starts, where (lying truly becomes a
part of living as the very walls of the hospital are breached to allow the
family to enter at will, where a staff of compassionate and believingly
dedicated (in some instances highly religiously dedicated as well) people
has been enlisted to support and tend the patient and permit him to die in
dignity.
Such professionals, our caretakers, both on
tire scene and behind the scene, are involved not only ill their
professional capacities but also personally and emotionally with
anticipatory grief and, thereafter, to some degree or other, with actual bereavement.
flow many-or perhaps we should ask how few nurses and physicians don't
reach a point of emotional overload during periods when it seems that one
patient after another dies in spite of all their combined and/or
individual efforts to save or extend a life? And so, by way of answer, we
pose some further queries: Why do some professionals avoid service in
wards where terminal patients are moved to die? Why do so many others tend
to abandon the patient as his condition deteriorates, to visit him less
frequently, to perform only those acts which treat his primary illness, to
hustle and bristle in and out of the room as rapidly as possible, avoiding
conversation which may prove to be embarrassing and avoiding answering
questions, fearful that their own acknowledgment of the patient's
psychological distress, anti
their own, will bring forth
tears-maybe even their own? (Somehow or other, incidentally, we regard
crying in ourselves and others as unworthy, unmanly, or an inappropriate
reaction-when such is not
the case at all.)
I would like at this
point to offer some succinctly expressed words to serve, it is my hope, as
a few effective tools for all who care for or surround the dying patient
and his family.
1. The caretaker's chief obligation is to provide what Dr.
Avery Weisman has so imaginatively called "safe conduct" for the dying
patient.
2. The primary suffering of the patient is handled by those
who can relieve the physical symptoms of his ailment, especially his pain
or his disfigurement; but his secondary sufferings-the loss of self-esteem
and body image, the fears of abandonment and separation, the anxieties and
feelings of hopelessness-must also be treated-by anyone who can function
well in this capacity.
3. The reactions of particularly close family members
should be scrutinized in order to help them and to enable them, those who
are losing the most, to also give the most in support of the patient's
secondary suffering; and in so doing gain a measure of peace themselves.
4. High-risk family members, those adjudged to be most
prone to suffer at some point from pathological and extended grief
reactions following their loss, should be singled out for special
counseling and treatment.
5. The patient should be allowed to make
as many
decisions regarding his own treatment, even his own manner of dying, as
is consistent with his welfare, not heeding needlessly only the emotional
welfare of his family or especially that of his
caretakers.
6. Communication should always be maintained among all on
the scene; self-esteem should be reinforced.
7. There are many, including especially family members, who
can help the doing patient achieve his final goals-not only the physician
and the nurse. Professional credentials are often less important than a
person's ability to be present, to be readily available, to be alert, to
be compassionate and willing to be on the team. And, touch the patient;
let there be someone to hold his hand, literally, if possible, to the end.
8. The team should include, among others, the family, the
clergy, social workers, psychologists, and psychiatrists
as well as
physicians and nurses.
9. The new ethics presented by the ability to transplant
organs, or sustain failing ones mechanically, compels the physician to
be the prime decision maker, the one in whose hands the "buck stops." But,
nevertheless, these decisions and ethics involved pose profound and
emotionally traumatic problems for the physician who he would be well
advised to share with the family, clergy, or others.
10. The family should always be aware that to the
physician, regardless of his concerns about the patient, one death in
particular is of even greater concern to him: his death.
11. The bereaved will have to deal retrospectively with the
trauma of the deceased's illness and death, and he may be haunted by
memories, even guilt, even anger. Caretakers must be available to contend
with these also.
12. The passing of certain cultural and ethnic rituals,
such as portions (at least) of the formal funeral, sitting
shihah, and
the wake, has probably been detrimental for the family as viewed
sociologically and can hinder acceptance of the loss and the bereaved
ability to continue as a functioning human being. These rites and the
attendant opportunities for loving companionship and self-expression
often offer great emotional support to the bereaved (even if many do not
choose to acknowledge such benefits because of often unfair financial
burdens imposed by some funeral directors).
13. The grief experience can be transformed into a most
meaningful and productive one through emphasis on the concepts and ideals
of creative
grief. The energies expended in grieving can be channeled with enormous
productivity into good works or deeds, service to others in distress,
devotion to tasks left undone by the deceased, etc., rather than
dissipated in an unstructured and self-pitying melancholia.
But these are not, by
any means, all the answers. We have scarcely scratched the surface. Even
the few statistics drawn upon may be viewed dubiously because we are just
beginning to gain insight into what to research, and such research has
just barely begun. One more observation is in order: Our efforts in this
field may need reappraisal, since it appears that for every fifteen
investigators working with the care of the dying patient, there are
probably only three dealing with bereavement, and only one with studies of
anticipatory grief. This is discouraging to relate, in the opinion of many
of our most informed workers, such as Mrs. Ruth Abrams, since the
possibility for the most effective intervcntive medical action related to
bereavement perhaps lies in the improved management of anticipatory grief.
We have turned around and around in our
continuum: the classical picture of anticipatory grief, the (lying
experience and
its management, and the final facet,
bereavement. Not have we neglected to mention our own psychological trauma
at the thought of the (lying "me." It should be apparent, then, that we
have come full cycle and have, perhaps, even reached certain conclusions:
(1) that our lives are spent in preparation for the bereavement which our
great losses bring, including the death of "me"; (2) that there are
doubtlessly stages of anticipatory grief which in one way or another
parallel Dr. Ross's stages of dying-in a complementary fashion, sometimes
and best of all in synchronization but sometimes out;(3)that, if we can
achieve some degree of real synchronization we can make the bereaved-to-be
function more satisfactorily as members o the team that cares for the
terminal patient; (`I) that the mortality and morbidity of bereavement
may well, with proper research and through the use of proper investigative
expertise, be demonstrated in anticipatory grief, thereby reinforcing the
decision to intervene at this point; (5) that it is logical to conceive of
anticipatory grief as a repressed projection backward of bereavement;
(6) that it would follow, then, that bereavement is the logical aftermath
of repressed anticipatory grief; (7) that there is a symmetry and core of
replication between anticipatory grief and bereavement from which it might
well be hypothesized that the greater and better managed the one, the less
of the other; and conversely, the less of the former, the greater the
latter; (8) that these are challenging and critical areas for research.
Man cannot face the
sun, but he must nevertheless face his own death, if lie is to live. He
must accept death as a part of his life-as a prerequisite for his
enjoyment of and formal acceptance of the full beauty and tragedy of
life. Just as it is possible for the dying person to achieve acceptance of
his own death and die in dignity, so too the living who are bereaved can,
with help, be brought to accept a life in which death is an integral
part. The challenge to us all is at least twofold: Where is our place in
the continuum at any time? How can we be effective as clinicians, as
scientists, and as human beings?