Although it is a difficult subject to approach, addressing the issue of advance directives before a patient is weaned off a ventilator is an important role for the RT.

Once they are finally weaned from the ventilator, most patients breathe a sigh of relief. Now that they are free to talk, eat, and move about, they are ready to put the experience behind them. It is not something that patients like to talk about–or even think about–and their families frequently do not understand. But respiratory care practitioners and nurses who work on ventilatory units know the experience from beginning to end:

  • the gradually increasing shortness of breath, and overwhelming fatigue;
  • the anxious trip to the emergency department;
  • air hunger, gasping for breath, a feeling of doom; and
  • being intubated.

Then days, weeks, sometimes months pass on mechanical ventilation, trying to get strong enough to breathe without a machine. The fear that you’ll never make it. The fear that you’ll never go home.

The Aftermath of Weaning
Previously healthy people who have received ventilatory support, for example, because they suffered trauma or an acute infection, are unlikely to need such support again. But for patients with chronic lung disease, especially those who have been intubated and placed on mechanical ventilation in the past, another episode is almost certain.

In the aftermath of weaning, how should this issue be addressed? “Over the years I’ve had some very intense conversations with patients after extubation,” says Pamela Brown, CRTT, assistant director of respiratory care at Somerville Hospital/Cambridge Health Alliance in Somerville, Mass.

“The patients are very emotional. They just do not want to go through that ordeal again,” Brown believes. “We’re taking everything away from people–their ability to talk, eat, drink, and in many cases to move–because we keep them restrained so they will not pull out the tube,” Brown says. “I also find that in the hospital setting, when we get to the point where we think that the patient might need to be intubated, the physicians just say, ‘Well, do you want that tube put down your throat?’ For any other kind of invasive procedure, the nurses will describe step by step what will happen; what the expectations are; what the benefits and risks are, pro and con. But for mechanical ventilation it’s just, ‘Do you want us to put that tube down your throat to make you breathe better?’ ”

“When we see a patient get into one of these situations, we in respiratory care are the first to bemoan, ‘This patient is going to go on the ventilator and we are never going to get them off. Why wasn’t this discussed ahead of time?’ ” Brown says.

In a study of how frail elders end up on prolonged life support, sometimes against their own expressed wishes, Sharon R. Kaufman, PhD, of the University of California at San Francisco found that patients and their families may not fully understand the treatment options they are being asked to accept or reject. They may not have much sense of what it would be like to experience resuscitation or intubation. Exactly the opposite is true of patients with chronic lung disease who have recently been weaned off the ventilator. They know what they are talking about when they say they do not want to go through that experience again.

JCAHO Directive
Would it help these chronic patients to have an advance directive? According to Brown, in recent years the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has started to require that advance directives be discussed with all patients. Every JCAHO-accredited facility must have a process in place so that patients can put their wishes in writing. A federal law, the Patient Self-Determination Act of 1990, requires the same thing. At Brown’s hospital, the social service department has the responsibility of talking to every patient at the time of admission, providing a packet of information, and making sure that they know they have the option of setting up an advance directive. “There is a form in the chart that the patient signs saying this option has been covered with them and they have received information,” Brown says. But in her experience, most patients leave the hospital without ever doing anything about it.

Would it make more sense to talk to these patients after they have been weaned, before they go home? “This is probably something that any health care provider is able to discuss with a patient, but in my experience, no one wants to do it. It is a taboo area,” Brown says. If a patient did ask to prepare such a document, she would contact the social service department, since they have the necessary forms and can see to it that any document is signed and witnessed properly. But Brown is not at all sure that it would be appropriate for her to broach the subject of an advance directive to a patient. This, she believes, is the physician’s role.

Psychologically, the acute care hospital may not be the best place to talk about an advance directive, either. And the time just after weaning may not be the best time for a patient with chronic obstructive pulmonary disease (COPD) to confront the progressive nature of his illness. According to Leslie Curry, RRT, this is equally true whether weaning takes place in the acute care hospital or the rehabilitation setting. As respiratory therapist at Spaulding Rehabilitation Hospital in Boston, Curry seldom hears any discussion of advance directives. “It is covered as part of the admission process, but otherwise no one talks about it,” Curry says. For the most part, she feels this is appropriate. “In rehabilitation, the staff are accustomed to people getting better and going home,” she says.

Until recently, patients were well past the acute phase before being admitted to rehab. But with stays in the acute-care hospital becoming increasingly short, this situation has changed. “Now we’re more like a stepdown unit to the ICU,” Curry says. This is evident on the ventilation unit, where Curry works with some patients who are very hard to wean. “I do think that some of those patients should have an advance directive, especially those with COPD who have already been intubated several times,” Curry says. “A lot of those patients have told me that they don’t want to go through the experience again.”

Whether this wish is honored, however, may depend on how the prospect of mechanical ventilation is presented. “I’ve had the doctor go in and tell the patient, ‘You have a blockage in your intestines and we need to put you back on the machine for a few days.’ Well, often it is more than a few days–not only because of the immediate complication, but also because of the underlying lung disease,” Curry says. “Then the patient has to go through that whole long struggle again.”

Curry believes that patients are not always given a clear idea of what they may have to deal with. “It isn’t that the doctors are lying,” she says. “Their hope is that mechanical ventilation will be short-term. But I believe that a lot of patients get caught in the system because nobody sits down and says to them. ‘What is it that you really want?’ ”

Curry feels strongly that the physician is the proper person to clarify this issue. “But if the patient never brings up the subject when the doctor is around, it never gets addressed, and then the patient ends up back in the same situation in the future,” Curry says.

Curry formerly worked in a VA hospital where every patient who came in had to complete a form covering treatment options. “I always thought the VA system was fair to everyone; everyone had to make a choice, and it was in their chart whether they were an inpatient or an outpatient. That way, it could always be referred to if there was a question,” Curry says. The form was detailed and explicit. “You could say that you wanted everything done–and those things were listed–or don’t do chest compressions, or don’t intubate,” Curry says.

“When you came into that hospital, it was simply part of the paperwork you had to fill out. So that later, even if you were sitting in the waiting room of the outpatient clinic and you coded, they would have a record of what you wanted done to you,” she says. The approach took a great burden off the physicians. “Physicians don’t like dealing with this issue any more than other people,” Curry notes. “And if I were a physician and I had a comatose patient, when it came time to present the situation to the family, I could present it in terms of what the patient wanted,” Curry says.

Encouraging Advance Directives
According to Donna Smith, RN, head nurse on the pulmonary floor at the Boston VA Medical Center in Jamaica Plain, Mass, the VA continues to be aggressive in encouraging patients to make advance directives when they are admitted to the hospital. After patients are weaned off the ventilator, their code status is reviewed again. Recently her service weaned a patient who had been DNR. “We thought he would never get off the ventilator, but he did, and before he went to rehab, we went over his advance directive to make sure that was still what he wanted. It said, ‘He does not want to go back on a machine,’ ” Smith relates. When her service sends patients home, she makes sure that the home health care nurses are informed of their code status. “We also do a lot of patient education around this issue, because it is important that patients who are DNR do not get in the position of having to call 911,” Smith says.

“We also try to discourage our patients with lung cancer or chronic lung disease from being intubated,” Smith says. “We try to sit down and talk with them as a team, so that they understand the dietary restrictions and the communication restrictions involved–and also the fact that once you get on mechanical ventilation, you may not be able to get off,” Smith says. Of course, some patients are too sick for this kind of discussion. “But if they are here for an exacerbation of COPD or pneumonia, we do talk to them about preventing intubation,” Smith says.

Patients do change their mind, however. “They get acutely short of breath and that is just like someone putting a pillow over your face,” Smith says. “You are completely alert, but you can’t breathe. I have had many patients over the years who have said they never want to go on a machine, but when that time comes, they panic. They beg to go on the machine, and then they have a really difficult time.”

To try to prevent this problem, Smith talks to her patients about comfort measures. Morphine, in particular, can slow the respiratory rate and relieve some of the air hunger in a crisis. It also relieves anxiety. “Right now I have five patients on ventilators on this floor and we have another six people on ventilators over in the ICU. And the ICU nurses say that these people never, never should have been given the option to go on the ventilator. But no one approached these patients with an alternative, or gave them the option of doing an advance directive–in time,” Smith says.

She is grateful that one of the attending physicians has an office on her floor where he is often available to patients and their families. “We sometimes use him as the primary physician because, since this is a teaching hospital, the doctors rotate on a monthly basis and there is not a lot of continuity,” Smith says. “For patients to do an advance directive, they really need the support of a primary care physician,” Smith says.

Making the Right Decision
According to Leo Dirlinger, RRT, a respiratory therapist who works at several skilled nursing facilities in Massachusetts, patients may also need the help of their physicians to see that their wishes are carried out. Health care proxies, in which families are empowered to make decisions for the patients, can backfire. “I find that the family often makes the wrong decision–to prolong life and let the person suffer,” Dirlinger says. But he feels that the physician is sometimes trapped. If the family lives out of town and needs time to reach the patient, or if family members disagree, a physician hesitates to pressure them to stop treatment, even if that had been the patient’s wish. “But if the patient has an advance directive, that can plant the seed in the minds of the family,” Dirlinger says.

Not all physicians are willing to take the time to counsel patients about the various treatment options. “They just walk in and ask, ‘Do you want to be resuscitated?’ Then they walk out again,” Dirlinger says. He would like to see each facility appoint a staff member who can spend time talking to patients about their options, and who is equipped with clear, illustrated materials. “I also think there should be a nationally approved form that would cover the major categories of invasive treatment,” Dirlinger says. This would include cardiac compression, drugs, defibrillation, airway management and oxygen, artificial nutrition, and intravenous hydration. “It wouldn’t be a blanket DNR and it would include a feeding tube. I think families would understand that better than the advance directives we have now,” Dirlinger says.

As a respiratory care practitioner, he has often talked to patients about this sort of planning after they have been weaned from the ventilator. “Generally, this is a private conversation, not a job responsibility. It is a heart-to-heart conversation, not a medico-legal one,” he says.

According to Brown, RCPs have a special relationship with patients who have been weaned from the ventilator. “With this particular group of patients, we often establish the closest relationship. They have confidence in us. Their level of trust is high,” Brown says. When these patients say that they do not want to undergo mechanical ventilation again, how should therapists respond? “I think we could play a bigger role in informing patients than we do now,” Brown says. “We could make sure they know there are comfort measures should they decide to forego intubation. We could inform them about antianxiety medications that they could request. We could talk to them about hospice care,” Brown says.

Practitioners can also simply listen to patients and in this way help them clarify their own goals. “I had an elderly patient with COPD, a gentleman in his 70s, and I developed a close bond with him. I watched him go through the disease process over a number of years. During one exacerbation he was intubated and it took a long time to wean him off the ventilator. At that point he was transferred to another floor, but we had him on frequent nebulizer treatments, so I would go and give him his treatment and talk with him. He was adamant that he did not want to go through mechanical ventilation again,” Brown says.

The patient was worried that when the time came, his family would not be able to accept this decision. “I remember saying to him, ‘This is your right and this is your decision to make, because you are the one who is physically and emotionally going through this experience,’ ” Brown says.

India Smith is a contributing writer for RT.

Suggested Readings
Haddad A. What would you do? RN. November 1993:23-25.

Haymor P. Meeting the challenge of advance directives. Am J Nurs. 1998;98:27-32.

Kaufman S. Intensive care, old age, and the problem of death in America. Gerontologist. 1998;38:715-725.

Parkman C, Calfee B. Advance directives: honoring your patient’s end-of-life wishes. Nursing 97. April 1997:48-53.

Singer PA, Martin DK, Kellner M. Quality end-of-life care: patients’ perspectives. JAMA. 1999;281:163-168.