order. It is not a resigned and hopeless "giving up," a sense of "what's the use" or "I just cannot
fight
it any longer," though we hear such statements too. (They also
(P100)
indicate the beginning of the end of the struggle, but the latter are not indications of acceptance.)
Acceptance should not be mistaken for a happy stage. It is almost void of feelings. It is as if the
pain had gone, the struggle is over, and there comes a time for "the final rest before the long
journey" as one patient phrased it. This is also the time during which the family needs usually more
help, understanding, and support than the patient himself. While the dying patient has found some
peace and acceptance, his circle of interest diminishes. He wishes to be
left alone or at least not
stirred up by news and problems of the outside world. Visitors are often not desired and if they
come, the patient is no longer in a talkative mood. He often requests limitation on the number of
people and prefers short visits. This is the time when the television is off. Our communications then
become more nonverbal than verbal. The patient may just make a gesture of the hand to invite us to
sit down for a while. He may just hold our hand and ask us to sit in silence. Such moments of
silence may be the most meaningful communications for people who are not uncomfortable in the
presence of a dying person. We may together listen to the song of a bird from the outside. Our
presence may just confirm that we are going to be around until the end. We may just let him know
that it is all right to say nothing when the important things are taken care of and it is only a question
of time until he can close his eyes forever. It may reassure him that he is not left alone when he is
no longer talking
and a pressure of the hand, a look, a leaning back in the pillows may say more
than many "noisy" words.
A visit in the evening may lend itself best to such an encounter as it is the end of the day both for
the visitor and the patient. It is the time when the hospital's page system does not interrupt such a
moment when the nurse does not come in to take the temperature, and the cleaning woman is not
mopping the floor-it is this little private moment that can complete the day at the end of the rounds
for the physician, when he is not interrupted by anyone. It takes just a little time but it is comforting
for the patient to know that he is not forgotten when nothing else can be done for him. It is
gratifying for the visitor as well, as it will
show him that dying is not such a frightening, horrible thing that so many want to avoid.
There are a few
patients who fight to the end, who struggle and keep a hope that makes it almost
impossible to reach this stage of acceptance. They are the ones who will say one day, "I just cannot
make it anymore," the day they stop fighting, me fight is over. In other words, the harder they
struggle to avoid the inevitable death, the more they try to deny it, the more
difficult it will be for
them to reach this final stage of acceptance with peace and dignity. The family and staff may
consider these patients tough and strong, they may encourage the fight for life to the end, and they
may implicitly communicate that accepting one's end is regarded as a cowardly giving up, as a
deceit or, worse yet, a rejection of the family.
How, then, do we know when a patient is giving up "too early" when we feel that a little fight on
his part combined with the help of the medical profession could give him a chance to live longer?
How can we differentiate this from the stage of acceptance, when our wish to prolong his life often
contradicts his wish to rest and die in peace? If we are unable to differentiate
these two stages we
do more harm than good to our patients, we will be frustrated in our efforts, and will make his
dying a painful last experience. The following case of Mrs. W. is a brief summary of such an event,
where this differentiation was not made.
Mrs. W., a married fifty-eight-year-old woman, was hospitalized with a malignancy in her
abdomen which gave her much pain and discomfort. She had been able to face her serious illness
with courage and dignity. She complained very rarely and attempted to do as many things as
possible by herself. She rejected any offer of help as long as she was able to do it herself and
impressed the staff and her family by her cheerfulness and ability to face
her impending death with
equanimity.
Briefly after her last admission to the hospital she became suddenly depressed. The staff was
puzzled about this change and asked for a psychiatric consultation. She was not in her room when
we looked for her and a second visit a few hours
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later found her still absent. We flnally found her in the hallway outside of the Y-ray room where
she lay uncomfortably and obviously in pain on a stretcher. A brief interview revealed that she had
undergone two rather lengthy 1-ray procedures and had to wait for other pictures to be taken. She
was in great discomfort because of a sore on her back, had not had any food or drink for the past
several hours, and most uncomfortable of all, needed to go to the bathroom urgently. She related all
this
in a whispering voice, describing herself as being "just numb from pain." I offered to carry her
to the adjacent bathroom. She looked at me-for the first time smiling faintly-and said, "No, I am
barefoot, I'd rather wait until I am back in my room. I can go there myself."
This brief remark showed us one of the patient's needs: to care for herself as long as possible, to
keep her dignity and independence as long as it was possible. She was enraged that her endurance
was tested to the point where she was ready to scream in public, where she was ready to let go of
her bowel movements in a hallway, where she was on the verge of crying in front of strangers "who
only did their duty."
When we talked with her a few days later under more favorable circumstances, it was obvious that
she was increasingly tired and ready to die. She talked
about her children briefly, about her husband
who would be able to carry on without her. She felt strongly that her life, especially her marriage,
had been a good and meaningful one and that there was little left that she could do. She asked to be
allowed to die in peace, wished to be left alone-even asked for less involvement on the part of her
husband. She said that the only reason that kept her still alive was her husbands inability to accept
the fact that she had to die. She was angry at him for not facing it and for so desperately clinging on
to something that she was willing and ready to give up. I translated to her that she wished to detach
herself from this world and she nodded gratefully as I left her alone.
In the meantime, unbeknown
to the patient and myself, the medical-surgical staff had a meeting
which included the husband. While the surgeons believed that another surgical procedure could
possibly prolong her life, the husband pleaded with them to do everything in their power to "turn