NYT: Inducing sleep with drugs near the end of life, a practice called
terminal sedation, is a widely used treatment, but it often frustrates
families and doctors.
By ANEMONA HARTOCOLLIS
In almost every room people were sleeping, but not
like babies. This was not the carefree sleep that would restore them to
rise and shine for another day. It was the sleep before — and sometimes
until — death.
In some of the rooms in the hospice
unit at Franklin Hospital, in Valley Stream on Long Island, the
patients were sleeping because their organs were shutting down, the
natural process of death by disease. But at least one patient had been
rendered unconscious by strong drugs.
The patient, Leo Oltzik, an 88-year-old man with dementia, congestive heart failure
and kidney problems, was brought from home by his wife and son, who
were distressed to see him agitated, jumping out of bed and ripping off
his clothes. Now he was sleeping soundly with his mouth wide open.
“Obviously,
he’s much different than he was when he came in,” Dr. Edward Halbridge,
the hospice medical director, told Mr. Oltzik’s wife. “He’s calm, he’s
quiet.”
Mr. Oltzik’s life would end not with a bang, but
with the drip, drip, drip of an IV drug that put him into a slumber from
which he would never awaken. That drug, lorazepam, is a strong
sedative. Mr. Oltzik was also receiving morphine, to kill pain. This combination can slow breathing and
heart rate, and may make it impossible for the patient to eat or drink. In so doing, it can hasten death.
Mr.
Oltzik received what some doctors call palliative sedation and others
less euphemistically call terminal sedation. While the national health
coverage debate has been roiled by questions of whether the government
should be paying for end-of-life counseling, physicians like Dr.
Halbridge, in consultations with patients or their families, are
routinely making tough decisions about the best way to die.
Among those choices is terminal sedation, a
treatment that is already widely used, even as it vexes families and a
profession whose paramount rule is to do no harm.
Doctors
who perform it say it is based on carefully thought-out ethical
principles in which the goal is never to end someone’s life, but only to
make the patient more comfortable.
But the
possibility that the process might speed death has some experts
contending that the practice is, in the words of one much-debated paper,
a form of “slow euthanasia,” and that doctors who say otherwise are fooling themselves and their patients.
There
is little information about how many patients are terminally sedated,
and under what circumstances — estimates have ranged from 2 percent of
terminal patients to more than 50 percent. (Doctors are often reluctant
to discuss particular cases out of fear that their intentions will be
misunderstood.)
While there are universally accepted protocols for treating conditions like flu and diabetes,
this is not as true for the management of people’s last weeks, days and
hours. Indeed, a review of a decade of medical literature on terminal
sedation and interviews with palliative care doctors suggest that there
is less than unanimity on which drugs are appropriate to use or even on
the precise definition of terminal sedation.
Discussions
between doctors and dying patients’ families can be spare, even
cryptic. In half a dozen end-of-life consultations attended by a
reporter over the last year, even the most forthright doctors and nurses
did little more than hint at what the drugs could do. Afterward, some
families said they were surprised their loved ones died so quickly, and
wondered if the drugs had played a role.
Whether
the patients would have lived a few days longer is one of the more
prickly unknowns in palliative medicine. Still, most families felt they
and the doctors had done the right thing.
Mr.
Oltzik died after eight days at the hospice. Asked whether the sedation
that rendered Mr. Oltzik unconscious could have accelerated his death,
Dr. Halbridge said, “I don’t know.”
“He could have just been ready at that moment,” he said.
With
their families’ permission, Dr. Halbridge agreed to talk about
patients, including Mr. Oltzik and Frank Foster, a 60-year-old security
guard dying of cancer. He said he had come to terms with the moral issues surrounding sedation.
“Do
I consider myself a Dr. Death who is bumping people off on a regular
basis?” he asked. “I don’t think so. In my own head I’ve sort of come to
the realization that these people deserve to pass comfortably.”
An Uncomfortable Topic
For
every one like Dr. Halbridge, there were other doctors who, when asked
about their experiences, would speak only in abstract and general terms,
as if giving a medical school lecture, and declined requests to arrange
interviews with families who had been through the process. It is a
difficult subject to discuss.
The medical
profession still treats its role as an art as much as a science, relying
on philosophical principles like the rule of double effect. Under this rule, attributed to the 13th century Roman Catholic philosopher Thomas Aquinas,
even if there is a foreseeable bad outcome, like death, it is
acceptable if it is unintended and outweighed by an intentional good
outcome — the relief of unyielding suffering before death. The principle
has been applied to ethical dilemmas in realms from medicine to war,
and it is one of the few universal standards on how end-of-life sedation
should be carried out.
At Metropolitan Hospital
Center, a city-run hospital in East Harlem, Dr. Lauren Shaiova, the
chief of pain medicine and palliative care, has issued 20 pages of
guidelines for palliative sedation. The guidelines include definitions,
criteria, what to discuss with family and hospital workers and a list of
drugs to induce sleep, control agitation and relieve pain.
The
checklist of topics to be discussed with the family includes whether to
offer intravenous food and water. Another checklist anticipates that
some hospital workers may be upset by the process, and recommends a
discussion with questions like: “Were you comfortable with the sedation
of this patient? If not, what were your concerns?”
But
clarity, doctors say, is hardly the rule. In 2003, Dr. Paul Rousseau,
then a Veterans Affairs geriatrician in Phoenix, wrote an editorial in
the Journal of Palliative Medicine calling for more explicit guidelines
and research. He noted that some researchers include intermittent deep
sleep in the category of palliative sedation, while others limit it to
continuous sedation, which he said might explain some of the variance in
estimates of how often it occurs.
And he
proposed more systematic research into the types of medications used,
how long it takes for patients to die, and the feelings of family and
medical staff.
Doctors at two prominent New York
City , and NewYork-Presbyterian Hospital, freely discussed their
policies on terminal sedation, but were reluctant to allow a reporter to
talk to patients or families. The policy adopted by Beth Israel’s
hospice endorses palliative sedation to “carefully selected patients” at
the end of life. The three-page policy reviews legal, ethical and
clinical considerations in broad strokes, but refrains from providing
names of drugs and checklists.
Dr. Russell
Portenoy, chairman of , said the policy reflected the perceived perils
of too much specificity. The hospice ethics committee decided that every
patient was different, he said, and that “it was better to present a
policy at this 10,000-foot level.”
The
Metropolitan guidelines authorize certain drugs to induce palliative
sedation, or in conjunction with sedation for pain, and agitation. The
sedation drugs are lorazepam, midazolam, phenobarbital and, in the
intensive care unit only, sodium thiopental.
For pain, the guidelines list opioid drugs, including morphine, methadone and fentanyl.
Doctors
say that other drugs used for sedation are ketamine, an anesthetic and
sedative popular at rave parties, and propofol, an anesthetic, which was
ruled, with lorazepam, to have caused Michael Jackson’s death. In very
high doses, sodium thiopental is used as a sedative in the three-drug
combination used for lethal injections.
There
is one ethical guidepost for all the protocols: Terminal sedation should
not become so routine that the end of life is scheduled like elective
surgery, for the convenience of the doctor or the family, or because the
patient’s care is no longer economically viable.
Physicians
occasionally feel pressure to turn up the medication, said Dr. Pauline
Lesage, Beth Israel’s hospice medical director. The pressure may come
from weary relatives, who say, in effect, “Now it’s enough; I just want
him to disappear.”
Sometimes the pressure is
institutional. “You may be tempted to jump over because, oh well, ‘I
need the bed,’ or ‘That’s enough, I don’t see what we are doing here,’ ”
she explained.
The doctors resist pressure to
deliberately hasten death, she said. “Otherwise you see that you are
jumping into a different field.”
The Conversation
Leo
Oltzik was a lanky man with a piercing gaze, a draftsman who, among
many of his projects, worked on plans for the Second Avenue subway. In
57 years of marriage, he and his wife, Eleanor, had a son and a daughter
and hardly ever argued.
They slept in the same
bed, even after a railing had to be installed on one side to keep Mr.
Oltzik from jumping out. But around Thanksgiving, Mr. Oltzik became too
agitated for his wife and son to continue caring for him at home. “He
was fighting death,” Mrs. Oltzik said.
After
three days of efforts to calm Mr. Oltzik in the hospice failed, Dr.
Halbridge told the family that he was going to try an IV drip. Mr.
Oltzik was connected to an intravenous bag of Ativan, a brand name of
lorazepam, and he was given Roxanol, a liquid morphine, for pain and .
He lay in a large room where the December sun washed over flowered
curtain ruffs, plush carpeting and lavender chairs. He looked as if he
was sleeping, except to his wife.
“That’s not him,” she said, pulling out a photograph from better times.
On
the sixth day, the staff invited Mrs. Oltzik and their son into a cozy
meeting room, equipped with an overstuffed couch and chairs. They were
joined by Dr. Halbridge; Barbara Walsh, a nurse managing the hospice
team; and Lynne Kiesel, a medical social worker, who called the Oltziks’
daughter, Barbara Ladin, in Florida, and put her on a speakerphone.
“We
have these meetings to talk about how you’re doing, how he’s doing, and
to give you a chance to ask us questions,” Ms. Walsh began, then turned
to Dr. Halbridge, who signaled his profession with the stethoscope
wrapped over his dark blazer like a shawl.
“Our biggest challenge was to try to get him not to be so agitated,” Dr. Halbridge began.
The
staff had tried to calm him with various medications by mouth, without
success. “So we put him on an IV medication, which is dripping in at a
continuous rate,” he said.
The doctor pressed
ahead, in a cheerful, upbeat voice, tinged with regret, saying that the
staff had to decide what was better for Mr. Oltzik in the long run and
wanted the family’s opinion. His was falling, “which implies that his
body is slowing down, but he’s comfortable, and that’s what we’re
looking for,” Dr. Halbridge continued. (Low blood pressure can be a side
effect of Ativan and Roxanol, according to the drug manufacturers, as
well as a consequence of the dying process.)
Ms. Walsh added consolingly, “He really looks like he’s sleeping.”
She
said, apologetically, that the hospice had tried to find a balance
between controlling Mr. Oltzik’s agitation and making him too sleepy.
“We
did go to this IV as kind of a last measure, because we know that
people do get sleepy and may not be as responsive, and we know how hard
that is for the family to see,” she said.
Mr. Oltzik’s daughter zeroed in on the question that had been hanging over the discussion: “This is the end?”
“Yes,
pretty much,” Dr. Halbridge said, “because what we’re seeing is a man
who had a rather significant blood pressure on admission, and over the
past day now, and today again, his blood pressure is even lower. So
we’re talking about a poor prognosis and a shorter time.”
Mr. Oltzik’s son detected an almost imperceptible change in his mother. “Stay calm,” he urged her.
Moments later, the social worker gently entered the discussion, saying, “You’ve given him excellent care at home.”
“I worked very hard,” Mrs. Oltzik said.
Although
throughout the half-hour meeting the staff had never explicitly asked
to continue sedating Mr. Oltzik, his daughter now gave them tacit
permission: “We understand that the inevitable is here, but we wish him
to go in peace and to find solace in that,” Ms. Ladin said.
When
the conference was over, Mrs. Oltzik still seemed to be ruminating. As
many relatives do, she had hesitated over whether her husband should be
given and water through tubes, now that he could not feed himself. The
thought of someone dehydrating or starving is one of the most difficult
emotional burdens for families, and was the crux of the famous fight
over , a vegetative Florida woman whose husband wanted to let her die,
but whose parents did not.
Palliative care
doctors generally agree that sedated patients do not feel pain from or
starvation, and that food and water may only prolong agony by feeding
the fatal disease.
Mrs. Oltzik had done some
research, and decided that nutrition and water would only burden her
husband’s system. “The idea is now not to make him work harder, but to
be as peaceful and calm as he can,” she said. “Common sense dictates
that that would be the way to go.”
Much of the
conversation had proceeded not in black and white like a legal document,
but in shades of gray. By the end, they all seemed to understand one
another, though ultimately Mrs. Oltzik would express some sadness at
being unable to interact with her husband.
The Family’s Dilemma
From
Karen Foster’s perspective, watching her husband, Frank, die while
sedated was the least in a series of cruel blows. Mr. Foster, who
arrived at the Franklin hospice about the same time as Mr. Oltzik, had
stoically hidden his from his family for years. As recently as October,
he was still driving, Mrs. Foster said; then he suddenly went downhill.
The
night before Thanksgiving, her husband was acting bizarrely, and soon
he was admitted to the hospice, Mrs. Foster said. Dr. Halbridge put him
on morphine for pain and Ativan to calm his shortness of breath and . It
was terminal sedation, Dr. Halbridge said, but Mr. Foster’s liver was
failing so rapidly that no medication could have hastened his death.
Mrs.
Foster sat stiffly at his bedside in a cloche hat and long coat, as if
she expected him to go any second. She said she was relieved that her
husband was no longer suffering. The sight of him sedated, his mouth
open in a premonition of death that some doctors call “the O sign,” was
less shocking than the disease he kept secret, she said.
But
families sometimes push back. Marguerite Calixte, a day care worker,
asked Dr. Halbridge to wake her husband out of deep sedation — begun the
day before because he had trouble breathing — so she could say goodbye.
Her husband, Alix, who was 53, had trained as a
nurse and had told her that if he was going to die of his , he wanted
to die at home, with his wife and their two teenage children.
On
a Thursday night, Dr. Halbridge began decreasing the morphine drip, and
by the next morning, Mr. Calixte’s eyes fluttered open. “I’ve been
talking to him,” his wife said on Saturday, in Haitian cadences. “I say,
‘If you want to go home, squeeze my hand tight.’ He keep doing it over
and over.”
Ms. Walsh, the team manager,
patiently gave Mrs. Calixte a lesson in how to take care of her husband,
but doubted that he would be able to go home on Monday, and she was
right.
He died that Saturday night, when his wife went home to have dinner with their children.
Mrs.
Calixte believed the morphine was to blame. “He died quicker,” she
said. “I don’t know when it was going to be, but it wasn’t going to be
now. The thing is, he was going to suffer. I know that. But he wasn’t
going to die so quick.”
Dr. Halbridge said there
was “no way of knowing which would have taken him sooner,” the
medication or the disease. He said the conflict between his desire to
make Mr. Calixte comfortable and Mrs. Calixte’s wishes made the case “a
tough one, I admit.”
Teaching a Difficult Subject
The
has endorsed “palliative sedation to ” and in 2008, the issued a policy
statement supporting palliative sedation, except when it is used
primarily for emotional distress. Even the , while rejecting a
constitutional right to physician-assisted , has opened the door to
palliative sedation.
There is general agreement
that “a patient who is suffering from a terminal illness and who is
experiencing great pain has no legal barriers to obtaining medication,
from qualified physicians, to alleviate that suffering, even to the
point of causing unconsciousness and hastening death,” Justice wrote in a
1997 case, .
One provision of the House health
care bill, which passed in November, recognizes that palliative care
may include treatment “furnished for the purpose of alleviating pain or
discomfort, even if such use may increase the risk of death.” The bill —
but not the Senate version, passed on Thursday — also allows doctors to
be reimbursed for discussions with patients about what treatments they
would want or decline. This gave rise to charges by some Republicans
that “death panels” would be convened to decide who deserves life-saving
treatment.
Amid the furor, the bill was revised to make clear that patients would not be forced to forgo treatment.
Terminal
sedation remains touchy enough that last month, Dr. Lyla Correoso,
Bronx medical director of the Visiting Nurse Service of New York, and
Dr. Shaiova spoke with doctors, nurses, administrators and social
workers at Metropolitan Hospital about how to explain the process to
families and colleagues, so no one would feel guilty or betrayed.
The
title of the lecture, projected on a giant PowerPoint screen, conveyed
the crux of the dilemma: “The Double Effect: Is it the Drug or the
Disease?”
“Some people speculate that people are
really covering up the fact that this is really perhaps a type of
euthanasia or maybe something else that’s really afoot,” Dr. Correoso
said. “You have to have good overall intent, and most physicians, that’s
what we’re here for — we’re here to do something good.”
She
advocated setting “goalposts” in advance, by asking patients to
stipulate “the farthest line I’m not going to cross” — including
sedation.
The most pointed questions came from a
chaplain, Rabbi Isaac H. Mann. Was it possible, he asked, that a person
under deep sedation could still be feeling pain, and how would the
staff know?
“Yes,” Dr. Shaiova replied. But they
often expressed pain through agitation or grimacing, she said, adding,
“Err on the side of treating them” with pain-controlling drugs.
The
chaplain pressed for more clarity, even after the meeting had broken
up. Was she trying to say, he asked Dr. Correoso, that if morphine
killed a patient, “you wouldn’t mind?”
“Then you’ve already broken the principle of double effect,” Dr. Correoso replied.
“The doctor knows that this can kill the patient,” Rabbi Mann insisted.
“The
doctor doesn’t know,” Dr. Correoso said. Then she repeated a refrain
often heard in the world of palliative medicine: “It’s not easy to kill a
patient. People think it’s easy, but it’s really not. That’s why Dr.
Kevorkian had to use all that” combination of drugs.
The Gray Zone
On
the day Dr. Shaiova and Dr. Correoso lectured on terminal sedation,
they were also consulting with a patient at Metropolitan Hospital who
was dying of lung cancer. The patient, Gloria Scott, 50, had learned of
her cancer in June.
End-of-life treatment often has a kind of studied ambiguity to it, and such was the case with Ms. Scott.
After
she was moved to the hospice wing of in Jamaica, Queens, she received
fentanyl, a synthetic opioid pain reliever, through an IV line that gave
her the drug continuously, and allowed her or a nurse or doctor to push
a pump for more when she had “breakthrough” pain. Under her right ear,
she wore a scopolamine patch, used to reduce secretions. Scopolamine has
sedative and mood-altering properties, and was once combined with
morphine to induce “twilight sleep” for women giving birth. Ms. Scott
also had standing orders for Ativan, the sedative, and Haldol, for
delirium, two more drugs in the palliative sedation arsenal.
At
first, though in pain, she was lively. She sat on the bed in the lotus
position, which eased her pain, and in her Betty Boop voice, punctuated
by an infectious giggle, she talked about her favorite Motown music and
her plans to get a business degree.
She
fiercely resisted signing a “” order, although she would later change
her mind. “I don’t know when is my last day,” she said. “I might outlive
one of you all.”
She asked her doctor at the
hospice agency, Erik Carrasco, to keep the fentanyl, which she had begun
taking at the hospital, turned down low. Otherwise, she said, “you sit
here and you nod. I don’t want to be like that.”
Two
weeks later, the change in Ms. Scott was marked. She was still alive
but dessicated and barely responded to visitors. Her companion, Milton
Cruz, was troubled by her “semi-dreamland” state, as he put it, but was
shy about asking questions.
In her last days,
she lost the desire to eat or drink, though nurses continued offering
food and water, Dr. Carrasco said. The textbook survival time for
patients who stop eating and drinking is two weeks, Dr. Carrasco said,
but he said he had seen people last longer — elderly people who had
survived the Holocaust and “people who are waiting for someone, like a
son.”
She died after 22 days. Dr. Shaiova said
she did not consider Ms. Scott’s sedation to be palliative or terminal
sedation, because that was not her doctor’s intention. Her body had
sedated itself as a defense against the disease, Dr. Shaiova said, and
she had been on fentanyl long enough to develop some tolerance, making
it unlikely to have hastened her death.
“When you’re sick, you’re sick, and everything else is somewhere in the gray zone, and that’s the problem,” Dr. Shaiova said.
Dr.
Carrasco said that while the medication might have contributed to her ,
he believed she had died a natural death. “What I’ve been seeing
sometimes is you release the pain,” he said, “and even though you are
using very small amounts of morphine or narcotic, they relax and pass
away.”
The Semantics
Even
when everybody agrees that terminal sedation is a humane response to
unyielding suffering, many doctors seem to feel a prick of conscience.
“There
should be ambivalence,” said Dr. Joseph J. Fins, chief of medical
ethics at Weill Cornell Medical College. “If it became too easy and you
weren’t ambivalent, then I would really start worrying about it. But the
fact that you’re worrying about it doesn’t mean you’ve done something
wrong.”
In a 1996 paper in the Journal of
Palliative Care that is still debated within that community, Dr. J.
Andrew Billings, a Harvard professor and palliative care doctor at , and
Dr. Susan D. Block, a psychiatrist, took on the moral ambiguity
surrounding terminal sedation. They argued that the main distinction
between terminal sedation and euthanasia was time.
Terminal
sedation would lead inexorably to death, but “not too quickly,” they
said. They derided the rule of double effect in this context as a
rationalization, a subtle cover-up, of what they called “slow
euthanasia.”
Even a simple morphine drip, they
said, could put patients into a stupor at the right dose or when
combined with other drugs or when concentrated by the inefficiency of a
damaged liver or kidneys.
“If the morphine drip
becomes a code word for slow euthanasia,” they wrote, “laypersons may be
increasingly wary of the other uses of opioids.”
Both Dr. Billings, who is still at Harvard, and Dr. Block declined requests to be interviewed.
The
authors did not endorse euthanasia, but their arguments have been used
by others looking to make the case for public acceptance of euthanasia,
to the dismay of some doctors who defend terminal sedation.
People
who adopt this argument say, “We know what you’re really doing, it’s
crypto-euthanasia,” Dr. Fins said. “Polemics really have no place at the
bedside.”
Dr. Fins said he sometimes told
families that terminal sedation was altruistic, because they might be
giving up an extra day or two “of communication with the person you love
in the service of that love.”
As for the
argument that double effect is overly scholarly, Dr. Fins said: “I can’t
imagine a world at the end of life without double effect. We’d be
highly impoverished without it, and patients would suffer needlessly
without it. We do need our philosophical contrivances in order to be
pragmatic physicians and caregivers.”
Ambivalent, Then Accepting
Mr.
Oltzik died two days after the meeting between Dr. Halbridge and his
family, and Dr. Halbridge was frank in describing his treatment.
Asked
if he would call it palliative sedation, Dr. Halbridge said, “This
would be called terminal sedation, almost.” He said he hesitated only
because the word “terminal” sounded negative and might make the family
feel bad, when “it’s really comfort care.” The terms “palliative” and
“terminal” were interchangeable, he said.
Speaking
with considerable passion, he said he saw himself as the doctor who
would not “forsake” patients by telling them he could do nothing for
them. If there was no cure, he could at least offer comfort. “We are not
gods who can cure everything, and I think at some point in time you
have to accept that,” he said, “and to me, it’s the mark of an honest
doctor who understands when that time has come.”
The
decision to administer terminal sedation was based on a review of the
patient’s history that convinced him that Mr. Oltzik was “terminally
agitated,” he said. “It means that he is entering the dying process and
for whatever reason — whether it’s physical, spiritual — something is
interrupting the peaceful passing, and to me, because it’s so
uncomfortable for the family and for the patient, that’s the time to
medicate the patient and make them comfortable, because no matter what
you do, he’s not going to go back to the old Leo that he was.”
He
then told a self-deprecating joke about a doctor who gets to the gates
of heaven and demands to jump to the head of the line, only to be turned
back by St. Peter. But St. Peter opens the gates to someone else
carrying a doctor’s bag. “That’s God,” St. Peter explains. “He just
thinks he’s a doctor.”
Young residents often
challenge him, saying things like, “If I’m 105 years old, I want to be
fed, no matter what,” Dr. Halbridge said. His response is, “O.K., but
did you ask your patient what he wants?”
Some
patients are getting “multimillion-dollar workups” in the intensive care
unit, he said, but make their wishes known by pulling out tubes. “I
think a light bulb should go off in somebody’s head after the third time
he pulls it out. Am I going to change the outcome of this, and if I’m
not, why am I doing it?”
At one point, however, Mrs. Oltzik changed her mind.
“She
was having second thoughts on that, and then she was saying, ‘I wonder
if we should cut back on his medication,’ ” Dr. Halbridge said.
She
hoped for a last chance to communicate with her husband, but Dr.
Halbridge said he warned her that Mr. Oltzik was more likely to wake up
agitated and suffering. Dr. Halbridge did not want to feel like he was
experimenting. “I have a little bit of a problem with using the patient
as kind of a guinea pig and saying, ‘Well, the medication worked nicely,
now we’ll take it away and see if they bounce back the other way,’ ” he
said.
Did he wake Mr. Oltzik? There was no need, Dr. Halbridge said: “He passed away within a couple of minutes.”
A
couple of weeks later, Mrs. Oltzik still felt a bit uneasy. “They had
him so heavily sedated that he was in a stupor,” she said. “I didn’t say
goodbye to him, which hurts me.”
But she did
not fault the hospice team’s judgment. She could not think of any other
way to handle her husband’s agitation. As to whether his death had been
speeded up, even a tiny bit, she said philosophically, “There was no way
of knowing.”
This article, Hard Choice for a Comfortable Death: Sedation, first appeared in The New York Times.
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Hard choice for a comfortable death: Sedation
