|
Nine
It was only a few steps to the front door. Quickly,
efficiently,
without a wasted movement, the two attendants wheeled Jane s
stretcher bed from the ambulance into the hospice. The night-
mare journey was over.
A young woman was waiting with a smile just inside
the door
of the hospice. "Hello. I'm Elizabeth Jones, one of the sisters
here. I've come to get you settled into your room."
As the two attendants wheeled the stretcher along
a cheerful,
carpeted corridor, Sister Elizabeth walked beside Jane, talking
to her, trying to make her feel at home. "She's the one who
showed us round yesterday," Victor whispered to Rosemary.
Richard and Arloc came hurrying to meet us. They'd gone
ahead to help get Jane's room ready. "We thought you'd never
make it. We've been here for ages," Arloc said. "We've had a
good look round. It's a terrific place!"
"Hello." Another nurse came up to us. She was tall
and
vigorous-looking, with a welcoming smile. "My name's Patricia.
Would you all like some coffee, or would you prefer something
stronger after that journey?"
Things were falling into place. We were at the hospice,
we
had been expected and, it seemed, were welcome. We still in-
habited a world of pain, but we were no longer isolated in it. We
sank wearily into armchairs in the lounge.
"Would you help me to fill in this form about Jane,
please?"
The hospital secretary sat down beside Rosemary. This was the
first time that Jane hadn't been able to speak for herself, but the
questions were the usual ones. Rosemary paused for a moment
over "Religion?" and then answered as Jane would have done:
"None." She remembered Jane's first experience when she had
had the black spot removed, and how upset and angry she'd been
when a receptionist snapped that she'd no right to be a teacher if
she wasn't religious. "People like that shouldn't be in such jobs,"
Jane had said, wiping away tears of tension and anger.
A wild thought now crossed Rosemary's mind: Would they
refuse admission to an atheist? But the secretary showed no
reaction.
The atmosphere of the hospice was very informal,
almost low-
key. It was more like coming to a friend's home than an insti-
tution. In Jane's room all was ready. The porter brought in a
vase of flowers and put it where the new patient could see the
blooms most easily—"something lovely for her eyes to rest on,"
he was to say later, when we got to know him.
"This is your new room," Elizabeth said to Jane.
"I'll get
someone to help us lift you up on to the bed." She was back in
a few minutes with Emily, another sister. Working together with
the help of the ambulance men, they lifted Jane without up-
setting her too much.
"That's a beautiful shawl, Jane. I love the colours."
Elizabeth
fingered the crocheted woollen shawl that Jane had worn on so
many happier occasions.
With an effort, Jane answered, "I made it myself
ages ago."
"Now I'm going to give you an injection for the pain,"
said
Elizabeth. "Just a little prick, and then the pain will soon begin
to ease. Did you feel that?"
"Hardly at all," Jane said.
"I'll get one of the nurses to put in a catheter
for you, so you
needn't worry about bedpans any more. Then we'll be back to
settle you down."
"Thank you, thank you." Jane closed her eyes, relieved
that
the discomfort of a full bladder would soon be ended.
Elizabeth and Emily, both experienced and highly qualified,
were confident that Jane's acute pain would be brought under
control fairly quickly. Of the increasing grades of pain—from
mild through moderate, severe, very severe, incapacitating to
overwhelming—Jane had reached the last stage: the point where
consciousness is pain. They could see that she was near to death,
and they knew it is harder to nurse the young, who often have
greater difficulty adjusting to dying than older patients. That
was one reason why Jane had been put in a room of her own,
rather than in one of the five-bedded wards. Goodbyes are
harder for the young. She would need privacy and the oppor-
tunity to talk to friends and relatives.
Both sisters had been warned by Dr. Murray that Jane
was
likely to prove a difficult case. They knew she should be moved
as little as possible. While they set about making her as com-
fortable as they could, they were also checking for signs of the
troubles that beset the bedridden: bedsores, rashes.
At the same time they were taking stock of Jane's
physical and
mental reactions to every movement and to what was said to her.
They wanted to get to know her as quickly and intimately as
they could. The more she trusted them and relaxed, the more
effective their help would be.
Jane was washed with the minimum of disturbance.
The
nurses worked to find the most comfortable position for her
back and her limbs. The pain she was enduring was so-called
superficial pain—that is, pain that fills the body and is exacer-
bated by the slightest touch, and not deep pain, which is in the
bone and is aggravated more by movement. Some kinds of pain
can be lessened by laying a patient on a waterbed or on a net,
but the nurses decided that Jane's agony could not be alleviated
in this fashion. It took about ten minutes before her body had
been settled to their satisfaction—and to Jane's. She rested, sup-
ported in a nest of pillows, grateful for the relief they had
brought her.
Elizabeth picked up the shawl from the chair. "Shall
we put
this over the bed? It'll cheer the room up no end." She waited
for Jane to agree, and only then did the two sisters place {he
shawl over the bed so that its bright colours hid the plain white
sheet. They were careful not to give Jane the impression that she
was being bossed about. As far as possible, the patient must re-
main the master of the situation. "And this little shawl your
brother brought with him—would you like it over your shoul-
ders?" Emily asked. "It's chilly today, really cool for June."
Gently she laid the garment over Jane's shoulders, aware that
while most patients appreciated any physical contact, for Jane
the lightest touch was painful.
As they chatted with Jane easily and casually, both
sisters
were also studying her responses to determine whether she
needed the help of the hospice psychologist. They decided there
was no such need. Jane would have been comforted if she had
known this. In the past few weeks she had sometimes wondered
whether her mind was failing her.
A thin, slightly stooping, elderly man with a quiet,
reserved
manner came in. He was one of the doctors. Dr. Murray, the
senior consultant, was away until evening and Jane, whose pain
was now getting worse, was very disappointed. She felt that
this man, Dougal Brown, examined her in a rather cursory way.
In fact, we learned later, he had been anxious to avoid causing
her unnecessary suffering by carrying out a more detailed ex-
amination. He had seldom seen a patient in such distress and he
barely touched her. Dr. Murray would examine her thoroughly
later. Jane should have been reassured by his visit, but by now
everything was irritating her. She asked him, "Can't you stop
the pain? Can't you do something?"
Dr. Brown did not lie. "We'll do the best we can
to help you."
She needed desperately to feel that help was available, but it
was impossible for her to have confidence until the pain began
to diminish. Dr. Brown gave her some morphine.
We took turns sitting with Jane. Patricia, the tall
nurse who
had greeted us in the hall, came in, and her health and vitality
seemed to fill the room.
"Hello!" she cried brightly. Jane winced slightly.
"I've come
to see if I can do anything for you."
Acutely sensitive now to his daughter's reactions,
Victor re-
sponded for her: "What really matters is that she has proper
vegetarian food-really vegetarian. She won't eat fish or eggs,
and she gets her protein from beans and cheese."
"Oh, we're quite used to diets," Patricia said confidently.
"The other hospitals never gave her food she liked."
A cross mutter came from the bed: "Always cheese
and
lettuce .. ."
"I'll see to it. I'll ring the kitchen right now."
Patricia went
out.
"Thanks for getting rid of her, Dad. Her voice went
through
my head. But the pain's still bad. Can you tell them?"
Victor found Patricia outside. Her smile was bright and help-
ful. She had been prepared for a difficult evening; new patients
often took time to settle down and it was only natural that a
parent should be anxious. "I'll ring the kitchen," she said in a
soothing way.
"No, no." His voice was sharp with tension. "This
is more
important. Find Sister. Jane needs another injection." Patricia
herself had full authority to administer drugs, but she said
merely, "All right, I'll tell Sister." She went to the injection book
and was appalled by what she saw. The doses Jane had been
given since her arrival were already very high, higher than she
would care to be responsible for. But Elizabeth, when told of
Jane's request, merely nodded. "Don't worry, Pat. I'll see to it."
When Elizabeth gave Jane the injection, she took the oppor-
tunity to tell her more about the hospice. Jane confided to her
how lonely she had sometimes felt in the hospital. Here, Eliza-
beth assured her, there would always be company when she
needed it. Jane was worried that she might not be able to sum-
mon help. The pain in her arms would make it difficult for her
to reach the bell. Elizabeth fixed the bell-push so that it would
be within easy reach, suspending it from the lamp fixture just
next to Jane's head. But Jane still insisted it would be no use to
her. "I shan't be able to reach it," she said gloomily. What she
was really saying, as we realised later, was that she didn't want
to be left alone.
When Patricia returned to Jane's room, Victor was
holding a
glass for her to drink from.
"Here, let me do that for you," she offered.
"No," Victor said sharply, anxious to protect his daughter
from a nurse she seemed to dislike, "Jane likes me to do things
for her." Patricia retreated, once more rebuffed. "I've just rung
the kitchen and her diet has been sorted out."
Victor cut in, "We can go shopping—her friends can
go—we
can cook what she wants. Beans, for example. Are they getting
her beans? That's what she must have. Beans."
"I'll check." Patricia escaped to the comparative
calm of the
nurses' desk and picked up the phone. This time the kitchen
staff weren't quite so polite. Victor reappeared.
"Jane is still in pain," he said accusingly. "Can
you give her
something?"
"The injection hasn't had time to work yet, give
it at least half
an hour." Half an hour seemed to him like a lifetime. Fortunately
more help came.
The door opened quietly and a small, plump, middle-aged
woman appeared. She was dark-haired, with an olive skin and
deep, dark eyes. "Hello, Jane, my name is Adela," she said,
with just a slight touch of a foreign accent. "How are you
feeling?"
Jane liked the sound of her voice, and answered with
a smile.
Adela had a way of approaching new patients as if they were
old and dear friends. Her warmth drew an immediate response,
and soon they were talking, Adela's hand under hers. "Your
mouth looks dry, love," Adela said. "I'll just clean it for you,
shall I?"
She dipped a swab in a pink liquid and then gently
inserted it
between Jane's lips, working it from side to side. In all her
months of illness, when her mouth was often dry, sometimes
foul-tasting, no one had ever done this for her. And yet it was
so simple, so obvious, Rosemary thought, as she observed Jane's
delight at this new procedure. Adela carefully wiped the inside
of Jane's mouth with the swab. "How does it feel, all right?" she
asked.
"It's delicious," Jane said, "clean, fresh. Thank
you, Adela."
Patricia, who returned iust then. didn't think that Adela was
doing it properly, as she told us later, but she wouldn't say so
outright. Hospice nurses are as careful of the feelings of the
junior staff as they are of the patients'. Instead, she said: "Shall
I help you, Adela?"
To Victor, who felt he ought to be protecting Jane
from
contact with Patricia, this was a danger signal. He put his hand
on her arm as she approached the bed and virtually moved her
aside. "Jane wants Adela to do that," he said brusquely.
Patricia retreated to the nurses' desk, aware now of Victor's
hostility. Why has this man taken such an enormous dislike to
me? she asked herself. It must be anxiety, she decided. As she
was drawing up an injection of Valium for Jane, she told Emily
about Victor's behaviour. "I think that what Jane really needs is
not Valium, but a little rest from her father. It's he who really
needs this injection . . ." She carried the needle back into Jane's
room, and when she went past Victor (as she told us with a
laugh later) just managed to restrain a powerful impulse to jab
it into him.
Hearing of Jane's distress, Emily wanted to see if
there was
anything she could do to help. But continual action in the sick
room conveyed an atmosphere of crisis. A new patient could be
bewildered by too many unfamiliar faces. This was why those
nurses whose presence was not specifically needed deliberately
kept out of sight at first, introducing themselves only gradually.
Emily felt a terrible disappointment, a sense of failure, that the
hospice had been unable to help Jane in the first few hours after
her arrival.
By about five o'clock in the afternoon Jane's distress
began to
overwhelm her. She refused to swallow any more medicine. Dr.
Brown and Elizabeth stood by helplessly as she spat out the
mixture they had given her. "It's no good," she cried angrily.
"I won't take it. Why can't I have the stuff I had
before?" She
wanted the familiar taste of the medicine which had given her
some relief during the ambulance journey.
"This is the mixture you brought with you," Elizabeth
assured
her, but her concern and encouragement didn't get through to
Jane, who was crying bitterly. "It isn't, it isn't," she wept, trying
to turn her head away, but unable to do so because of the pain.
"I wish I were at home. I feel horrible, everything
keeps coming
and going away again . . . I hate it here . . ."
"
Wait," said Dr. Brown. "I'll get the bottle so you
can see that
we're giving you the medicine you want." He soon returned
with the bottle, now wiped shining clean, and an empty medi-
cine glass. He poured a dose and offered it to her. This time she
drank it without a word.
It didn't help much. Dr. Brown, who was comparatively
new
to hospice work, gave Jane as much morphine as he thought
safe—and that was a great deal. Elizabeth, who had been a
hospice nurse and sister for many years, thought that Jane should
have been given a more powerful dose right from the start. Later
everybody agreed that this should have been done, and they
freely admitted to us they had made a mistake.
That first evening Jane's room was a sick room. The
curtains
had been pulled across the window, but the semi-darkness, the
painkillers, the Valium did little to help Jane relax. She did not
sleep. Adela, whom she already liked and trusted, had gone off
duty, and so had Elizabeth. Patricia was now in charge. Dr.
Murray, who had given Victor so much hope the day before,
hadn't yet returned. Rosemary, Richard and Arloc had gone
back to Dairy Cottage for the night, leaving her father alone
with Jane.
Victor was anxious and uncertain. Would this be yet
another
of those endless vigils when we waited in hospitals for doctors
who never came or, if they did, brushed past us with a pre-
occupied air and a meaningless word of comfort?
Jane stirred uneasily. She opened her eyes and said
angrily:
"I wish I could get to sleep. Will that doctor of yours ever
come?"
Victor wondered guiltily if he had built up her hopes
about
Dr. Murray and the hospice too much. Her irritation worried
him. We had led Jane to believe that Dr. Murray would help
her out of the pain, but where was he when she needed him? She
was again showing the displacement anger we had first noticed
in the hospital. Usually patients are careful not to direct this at
the doctor on whom they depend for treatment, but Jane seemed
past caring.
Victor would have been content if she had chosen
him as a
target again, for she obviously needed an outlet of some kind to
take her mind off the pain. The quiet, understanding talks at
Dairy Cottage already seemed far away, yet he was determined
that she should regain the repose lost when the pain began to
overwhelm her. She must die in peace. This was the whole point
of bringing her to the hospice.
Soon, he told her, things would be as they had been
at home,
and better. He spoke to her quietly, trying to reassure her. There
was still so much to talk about, he said, so much to remem-
ber . . . But Jane didn't want to speak about dying. She looked
at him with exasperation. "All this talk, talk, talk. Where does
it get us? If only they could do something about the pain! Can
they? Can they?" she repeated persistently.
It was bound to take a little time, he told her.
They had to try
different things before they knew what would work. But Jane
had heard too many such assurances. Her pain was the only
reality. It was here, it was now, while death had once again
been dismissed from her conscious thoughts although it over-
shadowed everything she said.
"What time is it?" she murmured.
"Getting on for seven o'clock, I suppose. I don't know
exactly."
"Does this mean you'll be going home soon?"
He looked at her, startled. Did she want to get rid of him?
Was she withdrawing again?
"What would you like me to do, Jane?"
"I know you said they'd look after me here," she
began. "I'm
sure they will. You said you can visit me at any time you want
to, no visiting hours." She spoke slowly, as if she'd thought out
what she wanted to say and was trying to find the best way to
put it. "They're good about visitors here, not like the hospitals,
aren't they?"
"Yes, Jane, you can set your own visiting hours."
Victor re-
membered how she had dismissed us from the hospital.
"People can stay as long as they like?"
"All day, if you want."
"And night?" Now it poured out, what she really wanted.
"The nights, the nights, they're so long, so horrible.
The night-
mares—the thoughts. I used to get so scared, all alone. I used to
think I might die, all alone." Her voice quickened. "I don't want
to be left alone. Promise me I won't be. Promise me."
"Jane, you won't be, you won't be," he said, bending
over her
closely. She might not want to talk about dying, not now, not
to him, but he was sure she was thinking of it. "They said one of
us could stay here. There's a bedroom for relatives. I'll go and
see about it straight away."
"No, Dad, don't go. I have the horrors—don't leave
me, ever."
"What, never?" he said with a smile, using a line from a Gil-
bert and Sullivan operetta that had become a family joke.
"No, never," she answered promptly, the fear huge in her
eyes.
He held her hand very lightly, felt how cool it was,
and
wished he could transmit the warmth of his own body into hers.
Then he gave her a solemn promise.
"Mum or I will always be with you, Jane. Or Richard, while
he's here, or Arloc. If we have to go out, we'll ask one of the
nurses to sit with you until we get back. You'll never be left
alone."
His promise brought Jane great relief; but her pain
went on.
Now that she had made it clear she wanted him to sleep next
to her rather than in the guestroom, he asked Patricia if it
could be arranged. She must check, she said. They would have
to find a bed to fit in the small space. She wasn't committing
herself. Patricia wanted to make sure this was really something
Jane desired, and not merely an over-anxious father's idea.
Jane was never left alone again. With someone always in the
room, she was free to think her thoughts without the need to
deal with others. It was physical loneliness that she feared, the
possibility that her body would suddenly erupt into a crisis de-
manding outside help when no one was there. The assurance that
someone was constantly at hand would contribute much to her
peace of mind in the days to come. Even that night it seemed to
ease her mind until the pain claimed her again.
"Isn't it time they gave me something for the pain?
It's getting
worse."
"Let me see if I can catch a nurse," Victor said.
There was no
one outside. Should he go looking for a nurse, having just prom-
ised never to leave her alone?
"Maybe we should ring your bell?" he said.
"Don't overdo it, Dad." The edge was back in her
voice. "You
can go and find the nurse. I don't think we should ring the bell;
they must have plenty to do without that."
He found Patricia at the medicine cupboard, carefully
measur-
ing a milky liquid into a small glass, drop by drop, entirely con-
centrated on her task. He looked around, but saw no other
nurses.
He interrupted her. "Jane is in terrible pain. What
on earth
can be done?"
"But she's only just had the medicine. We must give
it a
chance to work." She looked up and, seeing the anxiety in his
face, added: "I'll come in a moment."
When Patricia arrived, Jane lay with half-closed
eyes, pre-
tending to be asleep. She didn't want to talk to Patricia or ac-
knowledge her presence. The nurse moved close to the bed,
studied Jane's seemingly relaxed face, and smiled encouragingly
at Victor. She was hardly out of the room when Jane opened
her eyes. "Why didn't she give me something?"
Victor went out again, but Patricia was nowhere to
be seen.
There was a murmur from the nurses' office. He stood in front
of the door listening, recognised Patricia's voice and raised his
hand to knock, then suspended it in mid-air.
"Thank goodness you're here," Patricia was saying.
"Jane
hasn't settled down very well. Her father is most terribly anxious.
We've given her everything Dougal prescribed, but her father
won't believe the pain has eased."
Victor rushed back to Jane's room. "He's here, Jane!"
he al-
most shouted. "Dr. Murray's arrived!"
Dr. Murray talked to Jane in her room while Victor
waited
outside, taut and nervous. He had to wait a long time before the
doctor came out. His manner was calm and controlled. He might
have been a priest rather than a doctor. Tall and loose-limbed,
he led the way to the nurses' office, which was now empty. His
movements were relaxed, his speech deliberate, his manner
thoughtful. Just now, it seemed, the most important thing was
to put Victor at his ease.
"I've had a good talk with Jane and she's in bad
shape, but I
told her we should be able to do something about it. Her con-
dition is really much the same as before, but the ambulance
journey shook her up considerably and greatly increased the
pain."
"But that was at noon. It's seven o'clock now!"
"Yes, we ought to have been able to deal with it
by now, but
it isn't always so easy. The patient becomes increasingly anxious
in such circumstances, and this in turn makes the pain worse."
There was a very intricate mechanism at work here, he ex-
plained, a direct relationship between physical pain and anxiety.
Fear and the expectation of pain can greatly increase a patient's
suffering.
"I told Jane that I'd give her some strong stuff
to try to get
her to sleep, and that I'd look in later. She said she'd like you to
stay, and you're very welcome to—your presence here is very
much part of her treatment."
With a start, Victor realised that Jane was alone,
that he was
already breaking his promise to her. "I must get back to her," he
said almost curtly. He could talk to Dr. Murray later.
Jane's pain seemed to have increased in spite of all the dia-
morphine—another word for heroin—ordered by Dr. Murray.*
Victor was aware that too much diamorphine could "depress the
respiration," as one book had put it. Jane might stop breathing.
And that, he thought, might be just as well. Perhaps she had
suffered enough. But it would be a bad way for her to die—in
anger and pain. He felt isolated and afraid.
Patricia was also deeply concerned, but she at least was able
to share the load of tension and anxiety by talking to Julia, the
nursing officer in charge of staff. Julia, who was taking over the
night shift, wanted to know everything.
"We're probably going to have a really tough time,
not with
Jane, but because of her family," Patricia told her. "Her father-
he kept coming out, asking, 'Where's the sister?' as if I wasn't
capable."
"He probably thinks they're still in a hospital and
only the
sister in charge can make decisions. It'll take the family a bit of
time to understand that it's different here."
"I feel he has no confidence, and we need the family's
support
to look after Jane properly."
Julia studied the chart with its story of continually
increased
doses of drugs. She could understand why Victor was anxious.
"If only we could get the family out of the way,
just for a
few hours," Patricia went on. "You know how patients can put
up a show for relatives? I came in and Jane moved her arm.
She made a face, but it wasn't a face of pain—just that her arm
was stiff. Her father said immediately: 'You see, she's in pain.
She needs another injection.' "
"Did you tell David?" The staff were on first-name
terms with
Dr. Murray, as with each other.
"He just said: 1 understand the situation.' "
"He did warn us there'd be problems. She was a social
science
student before she became a teacher, and her father told David
she doesn't hold with authoritarian ways. At her last hospital she
was very hostile to some of the doctors. David said we should
be ready in case her resentment rubbed off on us."
"Another thing," Patricia continued, "she's been
given such
enormous doses of diamorphine. I keep thinking she's had too
much . . . Is it morally right?"
Patricia was wondering whether the drugs might not
shorten
Jane's life. Julia, with her greater experience, was able to re-
assure her. "David knows what he's doing," she said.
"I never imagined we'd give her as much as this. I told David
what I thought and he said we were going to bang it in, bang it
in, and get her free from pain before decreasing the dose. Then
he became very technical."
Jane did not improve even on the much higher dose
of dia-
morphine to reduce her pain and of Valium to deal with her
anxiety. She couldn't sleep; the drugs seemed only to induce a
kind of stupor in her.
Dr. Murray came back and Victor waited outside again
while
he talked to Jane. Impatiently, Victor looked into the room
through the little window in the door and saw that they had
stopped talking. Jane was relaxing and Dr. Murray was sitting
by her bed, holding her hand, watching her. Victor's own ten-
sion eased, and he felt an enormous sense of relief.
One of the night nurses sat with Jane while Dr. Murray spoke
to Victor. It had been a long day for the doctor and he looked
weary, but he took time to explain Jane's condition to her father.
The pain, he said, was everywhere, but he was now sure they
could relieve it and he had made this clear to Jane. She wanted
to know about pain in general, and he had explained that, too.
Pain was not just a sensation, he told Victor. Aristotle, when
he formulated his doctrine of the five senses—seeing, hearing,
touching, taste, smell—had specifically excluded pain, which he
described as the passion of the soul.
"I'm sure that would have appealed to Jane," Victor
told him.
"No other doctor has talked to her about Aristotle."
Pain, Dr. Murray said, was an experience greater
than a sensa-
tion, and it varied according to the mood and morale of the pa-
tient. They would have to work on that with Jane, no less than
on the physical sources. Indeed, the physical sensations could be
modified by the patient's emotional and psychological reactions
to the pain. In Jane's case, her resistance to pain would have been
lowered by her recent experiences. She hadn't been sleeping
properly at night, so she was worn out. There were other dis-
comforts, too: nausea, itching, anxiety, bad dreams, no bowel
movement for several days, dry mouth, parched lips. . . . All
this, Dr. Murray said, could make the pain worse.
"We have to raise the patient's morale, and by treating
these
symptoms, we do just that, raise the morale and reduce the ex-
perience of pain. We moisten a dry mouth, clear out the bowels,
give an injection against nausea—by correcting certain factors,
we elevate the pain threshold. Depending on these actions, the
same pain can be an agony or merely an ache.
"Look at it this way," he went on. "If a child gets
hurt, it
may be in agony until the mother caresses the hurt area, or offers
an ice cream, a sweet or a kiss. These things can reduce the
agony—real, genuine agony—to an ache. Haven't you seen this
happen?"
"Yes, but a bruised knee is a momentary pain . .
."
"It's the same basic experience in a child and in an advanced
cancer patient. Make sure that Jane has a good night's sleep,
rest, sympathy and understanding from those around her and
she'll. . ."
"But she had all the sympathy and understanding she
needed
at home."
"I'm sure she did," Dr. Murray replied soothingly,
"and she'll
need it here, too, which is why it's so good that you're all going
to be here. I'm certain your doctor gave her every drug he knew
about, but he reached a point when it wasn't doing much good.
You were just sitting there worrying, seeing she was getting
worse—that's what you told me. And she was watching you, she
knew what you were thinking, why you were worrying, and
this increased her own anxiety. You thought that nothing could
be done about it all, and she sensed it and believed it, even
though you were telling her the opposite. But here, we can tell
her, and show her, that as far as her pain's concerned she's
getting better, that we're bringing it under control. She'll feel it
happening, and believe us. Once her pain starts receding, she'll
expect it to get better instead of worse. Her morale will im-
prove. First we'll arrest it, then we'll start to roll it back."
"But you haven't arrested it so far, have you?"
"Not yet, but she's dozed off and that's a good beginning.
If
we can give her a good night's sleep, then a comfortable rest
during the day, so that she doesn't move around too much and
the pain on movement is reduced, her mood will improve, her
morale will be better, and she'll cope with the pain."
When Dr. Murray had examined her, the pain was in
both
arms, in her neck and her back, in her abdomen. If he moved any
of her limbs, any part of her body, she reacted with complaints
that all movement was painful. This was what they had to over-
come, and the drugs should begin to work now. She needed a lot
of diamorphine, far more than the average patient, and he'd
spoken to her quite frankly about the possible effects.
"I told her, as I'm telling you now, that she's bound to become
confused for a time. She's been given new, powerful drugs. She's
very ill. She's been moved from familiar to unfamiliar surround-
ings. She might wake in the night and become disoriented. That's
one reason I'm glad you're going to be with her. If you speak to
her and she recognises you, that will help a great deal, instead
of her just lying there, wondering who she is, where she is, until
a nurse comes—a nurse she might not know."
He had warned Jane about it quite deliberately, and
he was
warning Victor now, so that they shouldn't be upset when it
happened. "It should take some of the fear away," he said. "If
you have overwhelming pain, if you are demoralised with ex-
treme anxiety, as Jane is, this could result in nightmares. If
you're just starting on these new drugs, there is a considerable
likelihood of these fears and anxieties coming out as drug-
precipitated hallucinations. Then there might be misperceptions,
and it is important to distinguish between all of these and to
realise that they will ease after a few days. They will become
less."
"But surely she's not going to get better. She can
only get
worse. Doesn't that mean that the hallucinations will also get
worse? "
"No. We're not trying to cure her," the doctor stressed,
"but
that doesn't mean she can only get worse. Our aim is to make
her feel better, and I am confident that, with your cooperation,
we should be able to achieve this, even as her illness deepens.
Indeed, without our experience here, it might be assumed that as
she becomes more ill she would hallucinate more frequently. But
we've studied the process, and we know something of the causes
and effects. We can tell you that after a few days the hallucina-
tions are going to be reduced. I also told her this." Dr. Murray
wanted to give Jane something she could recognise as a success
in the treatment in order to build up her confidence. This would
help him too, he explained to Victor. "Provided a doctor under-
stands what's going on, he can cope. When a doctor feels power-
less, his confidence goes. And when that happens, there is no
hope of the patient's own confidence rising, and you go into an
ever-increasing circle of depression."
Victor was still worried. Would she become completely
doped? His generation had little experience of drugs, and his
questions reflected fear and mistrust.
Yes, the doctor conceded, they were increasing Jane's
medi-
cation, but only so that they could cut down on it later. In an
ordinary hospital, a doctor would normally prescribe pain-
killing drugs to be given to the patient every few hours, or "as
required." If the prescription was for every two hours, then the
patient had to wait, even if the pain had increased in the mean-
time. If it was "as required," then the sufferer was dosed only
when the pain had increased—by which time it was too late.
The hospice did it differently. "You don't wait until the pain
Jgturns. You want to prevent this, to get on top and keep ahead
of pain. You know from your patient's case history that the pain
will come back. The idea is that you give the next dose before
the effect of the previous one has worn off. So you establish the
dose that'll do the trick, and you give it regularly. You anticipate
pain, you don't wait for it to recur."
As for addiction, Dr. Murray had made a study reviewing
the
case histories of five hundred patients to determine the effects of
diamorphine. The results showed that the rate at which the dose
increased became progressively less the longer the duration of
the treatment. Addiction wasn't a problem, nor was excessive
drowsiness.
In the majority of patients, Dr. Murray assured Victor,
it was
possible to achieve pain control while the patient was fully alert,
and that, he explained, was what hospice treatment was all about.
"What patients want is to be free of pain, to be alert to live what
life they have left, but in some situations it isn't possible to con-
trol pain completely, and the patient should then be warned, as
I have warned Jane, that she may feel some distress when she
moves. If a patient is told what's happening, and why, she will
accept it and cope, and this will reduce a lot of the anxiety
associated with chronic severe pain. Jane wanted the explana-
tion; her questions showed that she understood it. I think she'll
cope."
Victor was more relaxed after his talk with Dr. Murray,
and
he found Jane was, too. She was exchanging a few words with
Julia when he came in. Jane had been struck by the fact that
Julia, the nursing officer in charge of the hospice, should have
given up a night's rest to stand in for an absent nurse. She told
Julia how impressed she was by the lack of hierarchical barriers
between lower and higher members of the staff.
"That's just the kind of remark I'd expect to hear
from a social
science student," Julia said pleasantly, letting Jane know that she
was familiar with her background.
But it was the wrong thing to say. Social science
students had
been in the van of student rebellion. Jane was inclined to see
any such remark, when uttered by a middle-class square, as a
challenge.
"Social science students are just as good as anyone
else," she
exploded. "What have you got against them? Why is everyone
so foul?"
It was quite unreasonable, but perhaps it was her
way of com-
plaining about the pain. Julia was taken aback by the outburst
she'd provoked and tried to explain she hadn't meant to offend,
but Jane wouldn't listen. She sank into her pillow, an angry
expression on her face. Her gratitude had turned to something
like fury. Her eyes were saying to her father: "Take these
people away."
But, Jane, he protested, you know Julia
didn't mean it that
way."
Was she going to alienate one member of the staff
after the
other? First Patricia, now Julia. Might the nurses come to shun
her, or to treat her less kindly? Victor still thought of the
hospice as a hospital, and followed Julia out of the room to
apologise.
"We don't have many people here with overwhelming
pain,"
she said reassuringly. "Jane has had so much she probably can't
imagine it will go away. That's all she's thinking about. That
was a sign of her anxiety. She hasn't settled in yet, she's not on
our wavelength. I expected too much too soon."
There obviously was no need to be concerned about
antag-
onizing the nurses. Julia was being almost apologetic herself ir
order to comfort him. Victor could afford to admit to her that
Jane was sometimes difficult. "She can take offence rather easily.
particularly when she's ill. We used to tease her when she was a
child and call her 'Miss Umbrage.' "
Julia smiled. "We'll get her into a better frame
of mind. It
rakes twenty-four to forty-eight hours to brine" pain under con-
trol. When we've done that, Jane won't take umbrage.
"Do you really think you can do it?"
"We'll certainly try. She mightn't always be free of pain but
she'll know that we can help her. Then if the pain does re-
appear, it won't seem so bad to her because she'll know we
should be able to make it go away again. There's a difference be-
tween a pain you know will go away, and one that you think
won't.".
Julia realised that this night would be crucial.
They had to
break the cycle of pain and fear and make up for the time lost
during the day when Jane's confidence in the promise of the
hospice had been so undermined. She wanted to make sure she
could give Jane as high a dose of diamorphine, as wide a selec-
tion of drugs, as might be necessary during the night. But a sister
cannot give a patient whatever drugs she thinks are appropriate,
even in a hospice. What she could do, and what Julia did, was to
discuss with the doctor the likely course of events and anticipate
what might happen: an increase in the intensity of pain, the ap-
pearance of a new source of pain, a bout of nausea. Julia men-
tioned to Dr. Murray the drugs she might require if Jane's condi-
tion changed, and found he had already prescribed them. That
meant she wouldn't need to call him during the night. He had
prescribed a wide range of doses, between 20 and 60 milligrams
of diamorphine. The injections were to be given "one to three
hourly," which meant that if Jane's pain eased, she need have no
more than 20 milligrams every three hours; but if it went up, or
showed no signs of abating, she could receive as much as 60
milligrams every hour—which is what Julia did in fact have to
give her for several consecutive injections.
It was a bad night. Jane had dozed off at first,
but she was
soon wide-awake. The pain seemed to ease slightly, then it re-
turned with renewed force, wracking her body so that she kept
moving her upper limbs in anguish, which caused additional
pain. Her lower limbs had become increasingly lifeless, as if
paralysed. With each new wave of pain she opened her eyes
wide, stared at Victor with mute reproof, and moved her hand
slightly, very slightly, inside his. This was enough to transmit
to him the current that was passing through her, to make him
feel with her, to clench his own teeth in the hope that he could
somehow help her.
Julia came by about every twenty minutes. Victor
stretched
out on his bed beside Jane's, holding her hand. The dose, which
was 20 milligrams when Julia came on duty, was increased to 40,
then to 60 at two o'clock in the morning, and again at three
o'clock. Victor didn't sleep much during the night. Every time
Jane stirred, he opened his eyes to watch, in the half-light, the
expression of pain so often on her face. Earlier, the pain was in-
tense, but localized. Now it was red-hot in her back but all-
pervading, reaching down her trunk and into her hips, clawing
at her stomach, pouring into her limbs. Every time Julia came
in with another injection, Jane complained of pain.
At last she slept, uneasily, fitfully. She had been
given enough
diamorphine during that night, a doctor told Victor later, to kill
an ordinary person. He was wrong. Jane was an ordinary person.
But many general practitioners without specialised training in
pain control are afraid of what they believe is the excessive use
of a drug—until they have an opportunity to learn how beneficial
it can be when administered by a doctor who knows what he is
doing.
That night, they had given Jane enough diamorphine
not to
kill her but to break the cycle of pain and tear.
Victor would not know that until the next morning.
* Diamorphine and cocaine, which form an important ingredient
medication available to hospice patients in Britain, are both banned
U.S. law, but the Department of Health and Welfare is sponsoring
designed to establish whether they ought to be permitted in the
States. In the meantime, U.S. hospices are making do with a mixture
contains morphine and other legally acceptable drugs. (As noted in
1980 printed ediction.)
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