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...Three Nurses on the Front Lines continued
With the exception of individual conversations with colleagues or
particularly sensitive attending physicians, younger doctors-in-training have
nowhere to turn for emotional support. "I've noticed that the nurses are very
smart. They have groups where they meet and discuss their feelings about these
issues," Rode said. "We don't have anything like that. There is nothing
formal. You're left to talk to your colleagues or track down social workers
and talk to them. I've tried to coordinate people to meet and talk about these
things. We are able to coordinate people to go to conferences on medical
matters."
But somehow, she says, meetings about emotional issues never get
scheduled. "I think that's because of this attitude that it's no big deal.
But it is a big deal. There's a lot of burnout in oncology, a lot of
alcoholism and suicide, because there's no one to vent and discuss things
with."
It is thus not surprising, Rode adds, that teaching future specialists
how to talk to and be with dying patients and their families is not part of
their training -- even for a field like oncology, where the need for these
skills is, unfortunately, very great. As a result, when a fellow must deal
with the dying and their close relatives, he or she is thrust into situations
almost entirely unprepared. "To a certain extent," Rode said, "you're winging
it in each conversation."
Rode also attributes this gap in training to a "macho" attitude. The
idea is that we don't need to waste time on this. There are more important
matters at hand. Also there is a suspicion of anything that appears to be
"touchy-feely."
It is no wonder then that so many physicians flee the dying and that
nurses must often pick up the pieces. One day in the clinic, Paddy Connelly,
one of Nancy's closest colleagues, is reeling from a recent experience. She
had arrived at work on a Monday morning to find one of her patients in the
clinic. She knew the patient, who had terminal cancer, had been in the
hospital the previous week and had been discharged over the weekend. She did
not know she was supposed to appear that Monday in the clinic.
But right before her discharge, the first-year fellow "in charge of her
case" had told the patient and her husband that the doctors had done all they
could. He informed the couple that "there was no more hope, nothing further to
be done."
Awkwardly, like a gawky teenager, the fellow stammered out the lack of
options. He said that there was no need for further clinic visits and vaguely
proposed hospice services at home as a makeshift alternative to what the
patient and her husband clearly perceived to be a total medical abandonment.
The wife and husband, like so many Americans, had little understanding of
hospice care. (Hospice nurses, physicians, social workers, and other personnel
manage the pain and symptoms of dying patients and help patients and families
deal with overwhelming emotional suffering and feelings of guilt and loss.)
Instead of concrete help, the couple interpreted this as an offer of spiritual
guidance. They already went to church, they said, and could talk to their
minister anytime. Spiritual help was hardly what they needed at this point.
To this definition of hospice-care services, they said a frustrated thank you,
but no thank you.
The fellow, Paddy continues, seemed to have as little understanding of
hospice as the patient and her husband and no medical encouragement to find out
more. The very fact that he raised the issue of hospice so late in the
patient's illness process demonstrated this ignorance. Hospice is not designed
for patients who will literally be dying in two or three days and for families
who are inevitably in desperate straits. Hospice had been far too narrowly
defined in the U.S. Here it tends to be viewed as comfort care in the very
last days of life -- as in just two or three days before a patient dies.
But this radically restricted definition of hospice care, Connelly
exclaims, is ludicrous. Family members often can't cope with the idea of
introducing a whole new set of players -- hospice nurses, social workers, and
volunteers -- when they are trying to deal with the fact that their loved one
is actually dying and will be dead in only a few days or weeks.
Although the patient and her husband did not agree to a consultation
with a local hospice, they were terrified of going home alone. They begged to
come back to the clinic the following week for further blood products.
"They obviously looked at blood products as...hope...of what?" Connelly
gropes for words.
Although the fellow knew that further treatment would be useless, he
nonetheless relented and told the patient to come in the following Monday for
the blood products. That's when Connelly saw her. Their patient was sitting
in her wheelchair in the waiting room. "She looked deathly ill, like she was
dying in front of my eyes. Which in fact she was. We got her into the
treatment room and gave her platelets. And I talked again with her about
hospice and explained more fully about being cared for and made comfortable at
home by hospice. Although she was understandably confused, she agreed. So I
immediately called the hospice and set that up. I also talked to the fellow
and told him in no uncertain terms how upset I was by all this."
The fellow shrugged it off.
Unfortunately, Connelly said, the attending physician who supervised
this fellow provided little guidance. This attending had little skill in
mentoring a fellow at this stage of a patient's illness. The system hadn't
taught them to deal with death, and they can't teach others to deal with it,
Connelly explains.
The patient died two days later. Connelly tried to talk with the
fellow again about the patient's treatment. But he said huffily, "I don't have
the time for this," slamming the door with irritation on his way out.
Connelly sighs with regret. "We've given the patient aggressive
treatment. But just when she needs palliative care and a team that won't
abandon her; just when she and her family need help understanding the dying
process and getting through it, they feel like we're washing our hands of them.
And to make matters worse, the fellow -- who only knew the patient for a few
months -- decided to make decisions on his own without consulting the other
caregivers on the team, some of whom had known the patient far longer."
Her observations are sadly confirmed by numerous medical studies. In
1989, for example, in an article that appeared in the New England Journal of
Medicine entitled, "The Physician's Responsibility Toward Hopelessly Ill
Patients," Dr. Sidney H. Wanzer and eleven other physicians argued that doctors
"have a specific responsibility toward patients who are hopelessly ill, dying,
or in the end stages of an incurable disease." According to the authors, "the
care of the dying is an art that should have its fullest expression in helping
patients cope with the technologically complicated medical environment that
often surrounds them at the end of life."
But, in many hospitals, "implementation of accepted policies had been
deficient in certain areas, including the initiation of timely discussions with
patients about dying, the solicitation and execution in advance of their
directives for terminal care, and the education of medical students and
residents and the formulation of institutional guidelines." The article
observes that "only a minority of physicians" consistently engage in such
"timely discussions about life-sustaining treatments and terminal care." As a
result, patients' pain and suffering is often ignored and measures to minimize
suffering are not intensified, and as the authors state, "patients are too
rarely cared for directly by the physician at or near the time of death."
Wanzer and his colleagues concluded that "dying patients may require
palliative care of an intensity that rivals even that of curative efforts."
Such care includes keeping the patient free of bedsores, treating depression,
dealing with the swelling of limbs that results from fluid absorption, reducing
nausea and vomiting, administering intravenous medications, and helping to keep
families together.
"Even though aggressive curative techniques are no longer indicated,"
the authors conclude, "professionals and families are still called on to use
intensive measures -- extreme responsibility, extraordinary sensitivity, and
heroic compassion."
More recently, in late 1995, the Journal of the American Medical
Association reported on a major study that was supposed to improve the care
of the dying. As mentioned earlier, it was called "The Study to Understand
Prognoses and Preferences for Outcomes and Risks of Treatments" -- or
SUPPORT. The
multimillion-dollar four-year study included five major medical centers
nationwide -- one of which was Beth Israel -- and 9,105 patients. The study
documented the inadequacy of physician-patient communication when dealing with
the dying and tried to remedy this by providing physicians with information
about their patients' prognoses. It also recruited expert nurses to
communicate with patients and families, help educate them about possible
outcomes of their disease, and relay information about pain management and
patient preferences back to physicians. The study's principal investigators
had thought this would help patients receive less-aggressive treatment before
death, spend less time on intensive care units, and suffer less pain. The
study, however, failed miserably. Principal investigators reported that
patients' pain was not adequately relieved; patients often expressed wishes --
like the fact that they wanted to have a Do Not Resuscitate order (DNR) -- that
were not heeded; and too many patients spent their last days of life
aggressively treated on intensive care units.
When the SUPPORT
study appeared in JAMA, it received enormous media attention. Researchers, other
practitioners, and health care observers evinced a great deal of shock and
surprise that such good intentions should yield such poor results. But how
could it have been otherwise? Nurses played a central role in this study.
Specially trained nurses spent hours with patients and relayed information
about the patients' conditions and wishes to their doctors. As the principal
investigators themselves acknowledged, in many instances doctors simply did
not listen to or act on the information nurses brought them. And in our
medical system, nurses cannot openly overrule physicians decisions or
preferences and protect patients from well-intentioned efforts to defeat their
diseases. One of the nurses involved in the SUPPORT
study was so troubled by
her experiences that she called me after I had written an article analyzing
some of the study's conclusions. She describes the time and effort she had put
in trying to talk with and honor the wishes and needs of her patients. The
pain in her voice was palpable, when she also related how often she -- and by
extension her patients -- were rebuffed by her physician colleagues.
Although few of the medical researchers involved in the study seemed to
have publicly acknowledged the deeper meaning of its conclusions, the study
was, in fact, a $28 million experiment that shows how patients suffer when
doctors do not listen to nurses or treat them as colleagues rather than
subordinates.
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