The earlier, the better’ with pulmonary patients
Discuss end-of-life care before disease progresses
Patients with chronic obstructive pulmonary disease (COPD) have a condition that is progressive, often severely debilitating, and, in most cases, requires intensive care unit (ICU) admission at some point in the disease process.
Yet an analysis of the medical literature shows little or no difference in the percentage of COPD patients who have discussed end-of-life treatment options with their physicians, compared to the general population.1
"In fact, the most common situation is that, when the time comes, these decisions are left to the family because this discussion has never taken place," says Mark P. Pfeifer, MD, FACP, associate professor of medicine at the University of Louisville in Kentucky and author of a recent paper analyzing medical data on end-of-life care of COPD patients.1 "It comes down to, What do you want to do about Dad?’"
Ideally, family members will try to act according to what they believe to be the patient’s wishes, but often it’s from their own perspective in relation to that person, Pfeifer continues.
In these instances, physicians are left with a limited role: advising the family on the clinical issues involved and making predictions about the outcome of treatment.
Several studies also indicate that the accuracy of predictions made by both physicians and family members regarding patient desires do not exceed those expected by chance alone, says Pfeifer. 2-5
Even if the patient has communicated specific wishes about medical treatment at the outset of his or her illness, these decisions should not be considered static, he adds.
"Physicians caring for COPD patients commonly report that patients who earlier had indicated a desire to avoid mechanical ventilation request it as dyspnea and air hunger worsens and death appears imminent," Pfeifer writes in his review.
This information highlights the need for the following three actions:
• early discussion of end-of-life issues with patients with chronic conditions such as COPD;
• discussion of these issues with the patient’s family members;
• a periodic re-evaluation of the patient’s directives as the disease progresses.
When should initial discussion take place?
Knowing when to discuss the issues surrounding end-of-life care is not a textbook scenario. There is no magic number or definite time to indicate when a physician and patient should begin discussing end-of-life care, Pfeifer says.
"I have seen patients with very poor numbers on pulmonary function tests, who did very well in terms of the quality of life they were leading," explains Pfeifer. "I have also seen patients with good pulmonary function scores who could barely get out of bed."
It would be a mistake for ethics committees developing a policy or procedure to designate some definitive clinical parameter linked to a discussion of these issues, he adds.
Often, the best time to discuss these issues with patients is when they are "well," possibly during a physical exam before advanced complications of the condition manifest, suggests Andrew G. Villanueva, MD, director of the medical intensive care unit at the Lahey Clinic in Burlington, MA. Villanueva also is a pulmonologist and specialist in critical care medicine.
"When you try to have these discussions when the patient is already very ill, it’s very stressful for them, and the patients tend to react more emotionally," explains Villanueva.
Early on, he says, the patients are more able to consider their wishes objectively in terms of maintaining quality of life and in which circumstances they would — and would not — want advanced medical intervention.
While acknowledging that broaching the subject of end-of-life care is difficult, Villanueva stresses that he makes it a policy to discuss these issues with all patients.
Mechanical ventilation issues
One of the most difficult decisions facing COPD patients as their disease progresses is whether they want to be placed on a ventilator. There is a misconception among many physicians that once patients receive mechanical ventilation, their lungs become dependent upon it and they are never able to live without use of the machine again, says Villanueva.
This is a concern, but in many cases a COPD patient can be placed on a ventilator to get over an acute illness or complication and then be able to have the ventilator removed, he says.
Villanueva recommends that the physician and patient discuss specifically what the patient’s wishes are in terms of quality of life and then decide on parameters for the use of mechanical ventilation. "We have some patients who say, I want you to do everything you can no matter what,’ but that’s rare," Villanueva says.
"We also have patients who say they never want to be intubated, and they are also the minority, but there are more of them. Most people say something like, If you think I can pull through it, then go ahead, but if there is almost no chance, then no.’ We can do that for them."
Because it is easier to withdraw care in terminally ill patients, physicians now can adhere to specific patient’s wishes more accurately, he adds. "Even if we put you on a ventilator, believing that you will do well, and you don’t, and it looks as though the outcome will be bad, then, in keeping with previous discussions, we can take you off," he says when discussing the issue with patients.
The standard of care previously implied that, if a medical intervention was begun, then it had to be "followed through to the end," he adds. "Now, we can withdraw care if we believe it to be against the patient’s wishes. It is legally accepted, medically accepted, and ethically accepted."
Implementing a patient’s wishes
After the initial discussion, Villanueva advises his patients to discuss their decision and instructions with other family members.
He prefers to include the patient’s closest family member in the discussion about the patient’s wishes, but if the patient or family member is uncomfortable, or there is no clear family member that would be the medical decision maker, he leaves the decision up to the patient.
"So there is no ambiguity when that time comes, I ask them to tell the people that they think should know," he says.
Both Pfeifer and Villanueva say they document the patient’s wishes in the medical chart, so they will be available to all medical personnel.
Villanueva says he also makes a note about the subject and writes it on the inside flap of the folder holding the medical record to ensure the advance directives are not missed.
"In Massachusetts, an advance directive or living will is not a legal document, but it is respected by the medical community and the courts because it is the expression of the patient’s wishes," Villanueva says.
1. Pfeifer MP. End-of-life decision-making: Special considerations in the COPD patient. Medscape Respiratory Care 1998:2(5) [on-line publication]. http://MedicalPractice.medscape.com.
2. Druley JA, Ditto PH, Moore KA, et al. Physicians’ predictions of elderly outpatients’ preferences for life-sustaining treatment. J Fam Pract 1993; 37:469-475.
3. Hare J, Pratt C, Nelson C. Agreement between patients and their self-selected surrogates on difficult medical decisions. Arch Intern Med 1992; 152:1,049-1,054.
4. Uhlmann RF, Pearlman RA, Cain KC. Physicians’ and spouses’ predictions of elderly patients’ resuscitation preferences. J Gerontol 1988; 43:115-121.
5. Suhl J, Simons P, Reedy T, et al. Myth of substituted judgment: Surrogate decision-making regarding life-support is unreliable. Arch Intern Med 1994; 154:90-96.