The stages of the terminally ill.

I Find Karma (adam@cs.caltech.edu)
Tue, 16 Jun 1998 05:24:32 -0700


Rohit and I were trying to remember the stages every (non-PC) terminally
ill person undergoes, so I did a little poking around the Web as I am
prone to do when I feel like the abyss is staring into me. Found it at

http://www.uic.edu/orgs/convening/deathdyi.htm

which of course is archived below. You know, this almost reads like
the stages every mailing list goes through

http://www.cs.caltech.edu/~adam/local/faq-fork.html#lifecycle

So, like the mailing list, Rohit, remind me which stage we're in again?
1. Denial
2. Anger
3. Bargaining
4. Anticipatory Grief
5. Acceptance / Resignation

[Rohit commented earlier that in June 1998 we're currently on pace at
FoRK to break the FoRK record for most posts in a month, set in May
1998 at 632.]

Okay, so here death is a meme, for we are all terminally ill in some
sense. Death is also a metaphor, for we all regularly experience the
kind of loss in life that we associate with death. Does knowing the
broad guidelines for death really help us cope any better?

For example, when one gets to "Acceptance", death is supposed to be part
of the natural order of things. I can accept my own mortality, but I
still often wonder what kind of ridiculously supine logic led to the
conception of such an idea as residing within the "natural order of
things"...

Of course, it is curious that any psychologist worth his salt would
espouse active deception as a valid form of endgame therapy:

> Some patients never move out of denial. They need this coping strategy
> to function. It is therapeutically unwise and basically unkind to force
> a patient to give up this denial when it is truly needed.

Also, don't expect the dying to behave in a game-theoretically-optimal
manner:

> Do not expect the dying patient to keep his or her bargains. While made
> in relatively good faith, they are efforts to forestall the inevitable.

And I like the notion that lack of communication is more meaningful for
the ineffable moments than trying to fill the void with busy activity
and idle prattle:

> Just being able to be with a person during this period is important.
> Words and conversation make way for silent togetherness.

The nice thing about death is that it can bring about an unworldly calm
in the understanding that there are things in heaven and earth not
dreamt of in our philosophies:

> For the patient who can come to terms with their life and thus their
> death, acceptance breeds a peacefulness and composure. These patients
> often require less pain medication and seem to be at ease with
> themselves and with the people who remain around them.

And death teaches us the bottom line, that what is really important is
being there for each other, and all the rest is merely chaff:

> While medicine considers its hi-tech interventions "heroic measures,"
> the real truth is that just being there for the patient is the real
> measure of heroism.

It's not good to dwell on thoughts of death, I admit, but every once in
a while it's nice to think about it as a means of appreciating more what
we actually have. Life has a funny way of changing course on a regular
basis, and all we can do is try to roll with the punches. Nothing lasts
forever, so we may as well have fun with opportunities as they arise.

After all, when we have nothing -- when we feel like a biblical Job or a
cinemaniacal Truman Burbank and everything has been stolen from our
universes except for ourselves and an omnipotent, omnipresent, all-knowing,
potentially sadistic and evil divine entity -- then we necessarily have
nothing to lose, and the potential for fun in this two-player arena is
virtually limitless in the endgame-theoretic sense. [I expect this
paragraph to make sense to no one but Rohit, who will one day look back
and read this in the archives, and share a laugh and a cry with me.]

Full text follows,
Adam

> DEATH AND DYING
> Barry Greenwald, Ph.D.
>
> While dying is the ultimate loss experience, the stages that the
> terminal patient passes through provide broad guidelines for
> understanding all loss and the grieving process as well. In her ground
> breaking work, On Death and Dying, Elisabeth Kubler-Ross outlined the
> stages of the dying patient which have profoundly influenced the
> treatment of those suffering terminal illnesses.
>
>
> DENIAL. The person when first confronted with the fact that s/he has an
> illness that will bring about death is likely to be unable to take-in
> this information. The most immediate response is "This can't be true" or
> "This can't be happening to me." The fact of one's impending death is
> experienced as unreal and impossible.
>
> Patients in denial are likely to make the rounds of many doctors looking
> for the one who will tell them that this is not a fatal illness. They
> want someone to "undo" the terrible and overwhelming news they have
> received. Under the best of circumstances, facing one's own mortality is
> very difficult. When faced with a "death sentence" the task of
> incorporating this news feels next to impossible.
>
> Denial simply eliminates a painful, hard-to-bear truth. It simply isn't
> so. In denial, a patient may refuse to talk about his/her illness, not
> allow others to mention it, or maintain unrealistic beliefs about
> miracle cures or their ability to escape the fatal outcome.
>
> It is important to realize that the dying patient's fear of death
> extends to a fear of being abandoned as well. Since death and dying have
> been such a "taboo" topic, little time or thinking has usually gone into
> considering the end of one's life. People respond with false optimism,
> discouraging comments (e.g., "Don't be morbid" or "Don't dwell on it"),
> or total avoidance. The dying person, sensing the discomfort of others,
> may avoid talking about themselves, their condition, or their fate out
> of sensitivity to others or to prevent being abandoned. Thus, they may
> not be denying their reality but avoid talking about it to protect those
> around them. The denial is not theirs. It is those around the patient
> who need the denial in order to remain present. It is always important
> in treating the dying to check out whose denial is in force.
>
> Some patients never move out of denial. They need this coping strategy
> to function. It is therapeutically unwise and basically unkind to force
> a patient to give up this denial when it is truly needed.
>
>
> ANGER. Death is inopportune. Its coming is unwelcome and particularly in
> the young, it is untimely and premature. Who wouldn't be angry at this
> cruel blow? There is life to be lived and accomplishments to be made.
> Usually, it is only the elderly who feel more sanguine about dying and
> that is not always true.
>
> Dying patients rage at their impending death. Dylan Thomas stated his
> ambivalence about death very well when considering the death of his
> father: "Rage, rage at the dying of the light. Go not gently into that
> good night."
>
> The anger takes many forms. As the condition of the patient declines,
> s/he may become angry at anyone who is healthy and who take daily
> activities for granted that the patient is no longer able to carry out.
> No one is exempted from the anger no matter how close or how good you
> may have been to the patient.
>
> The dying patient's anger is hard to take, especially if you're very
> close to the person. Try to remember that you might feel exactly the
> same way if you were in this person's shoes. Being able to uncritically
> accept the anger without judgement helps the person to express these all
> important feelings. Letting the patient vent is a real help in allowing
> this person to rid him/herself of the anger at life coming to an end.
>
>
> BARGAINING. As patients come to some terms with their illness and its
> inevitable end, they may begin to strike terms for accepting it. They
> make bargains with doctors, caretakers, and even with God. "Let me live
> to see my daughter married." "If I could have just one more day in the
> country feeling well..." "Let me just complete this book I'm working
> on." The notion is, "and then I'll go quietly..." It is a method of
> buying time. It is the wish for a temporary reprieve from the sentence
> of death.
>
> Do not expect the dying patient to keep his or her bargains. While made
> in relatively good faith, they are efforts to forestall the inevitable.
> The patient is still having understandable difficulty dealing with his
> or her end. This is a stop gap procedure and is best understood as a
> step being taken along the way.
>
>
> ANTICIPATORY GRIEF. The dying patient is losing everyone and everything
> s/he has ever loved and cherished in his/her life. Unlike those left
> behind who only loose the person, the dying have to give everything up.
> It's a formidable task accompanied by enormous sadness and grief. Often
> this is a period of very real depression. The dying patient withdraws
> and becomes isolated and may speak very little. It will be a time of
> "good-byes" and "farewells" and then a withdrawal into seclusion. This
> period can come well before the person is even near to death. Often, the
> dying patient will keep contact with a few trusted people after having
> said his or her major farewells.
>
> During this period the patient is sad and depressed. While a few people
> may be around, there may not be much conversation. Rather, there is just
> together time that is often spent in silence. The patient turns inward,
> thinking about the meaning of his or her life. It is a quiet time; a
> time of release.
>
> Just being able to be with a person during this period is important.
> Words and conversation make way for silent togetherness. The patient is
> not abandoned, but neither does s/he reach out for the same level of
> connectedness. This is a hard time for the helper since there is really
> nothing to be done except to be present. Often, touch takes the place of
> conversation. Holding hands, a massage, or a gentle stroking of the
> forehead carries all the communication needed.
>
>
> ACCEPTANCE/RESIGNATION. For some death is a defeat; a battle fought and
> lost. For others, death becomes an integral part of life; a natural end
> to the life experience. In coming to terms with death as a part of life,
> the patient reaches a kind of acceptance of the life cycle. For the
> former, death is a defeat and their adjustment a form of resignation.
> For the patient who can come to terms with their life and thus their
> death, acceptance breeds a peacefulness and composure. These patients
> often require less pain medication and seem to be at ease with
> themselves and with the people who remain around them.
>
> For the dying patient, the nature of "hope" changes throughout the
> course of their illness. Hope at first is for the prolongation of life,
> for the cure of their illness. As time progresses and they negotiate the
> formidable task of coming to terms with life and death, the nature of
> hope changes. For some, it becomes the hope for the generation they have
> left behind. For others, it is the hope for peace in the after life. And
> for some, it is expressed in the leaving behind of tape recordings or
> writings that can be shared with significant others after they are gone.
>
> For the helping person, this, too, is a quiet time. Just being present
> is important. The patient may talk more now and simple listening is all
> that is required. The patient is, in a sense, somewhat prepared. Death
> is not an alien intruder. Rather it is an end in the process of life.
>
> While medicine considers its hi-tech interventions "heroic measures,"
> the real truth is that just being there for the patient is the real
> measure of heroism. When all that medical science can do is exhausted
> and one is left with nothing but one's presence, hanging-in is truly
> heroic. There is nothing left to do (not something that most of us feel
> comfortable with) but just to be. It can make all the difference.
>
> There is always the danger that when stages are outlined, helping people
> feel the obligation to move people through the stages. This is a mistake
> and should be avoided. The dying patient often moves back and forth
> through all the stages during the progression of their illness. The
> stages provide guideposts to help us recognize where someone is at a
> particular point in time and provide us with an understanding of what we
> might do at that time to be helpful. Not everyone reaches acceptance
> and, as already noted, some never leave denial. Respect for the person
> is paramount in all that we do; we are not a better helper because we
> have battered someone into accepting his or her death. Nor are we less
> of a helper because the person has not completed all the stages.
>
> The stages of dying are a useful framework for thinking about how people
> handle any and all losses. Those who grieve will move through many of
> the same stages. Those who divorce or break-up with a significant other
> or move to another town or retire will also traverse many of the same
> steps. Again, the stages provide a means for understanding where a
> person is in their coping process and provide us with a means of
> intervention (even when that intervention is to do nothing) that can be
> helpful to the person on his or her journey.

----
adam@cs.caltech.edu

What sets worlds in motion is the interplay of differences, their
attractions and repulsions; life is plurality, death is uniformity.
-- Octavio Paz