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Technological advances and patient burden: achieving balance
U.S. largely a death-defying culture
Technological advances in medicine have the capability of helping health care providers to prolong life for patients faced with a terminal illness or injury. But some say that if quality of life is not improved, then prolonging life prolongs suffering as well.
The United States, by and large, is a nation with a death-defying culture, which makes the dependence on technology at the end of life overshadow other concerns, such as being at peace as one faces death, according to one bioethicist.
While technology does not create the ethical dilemmas associated with its use to sustain life, the "advent of technological improvement has occasioned the questions more frequently," Felicia Cohn, PhD, director of medical ethics at the University of California, Irvine, tells Medical Ethics Advisor.
"I don't think anybody has ever been happy about dying," Cohn says. "And so we've spent our entire history, or probably most of our [U.S.] history, in trying to find ways to at least put off death, if not defeat it altogether. We've always been looking for that fountain of youth, and with each technological advance, we become more adept at at least maintaining the physical being. But what we haven't been able to do is actually find the fountain of youth," Cohn says. "So, we can extend longevity, and we can live longer, but it doesn't necessarily mean we're living better, or even in a condition that we would find acceptable."
Because we have sophisticated life-prolonging technology, in the United States there is what some people refer to as the "technological imperative," Cohn says, "which means, 'We can; therefore, we should.' So, the fact that we can prolong life for some people means that we should do it, and we don't always stop to really evaluate whether we should."
For example, if you were to poll most people on whether they would prefer to die in a hospital, most people would say no, that they prefer to die at home, Cohn says.
"You want to die suddenly and quietly at home in your own bed surrounded by your family," she notes. "That's the ideal vision we have, but it almost never happens."
Cohn explains that a "big pendulum swing" occurred as a result of the patients' rights movement, whereby "patients wanted to enhance their autonomy and increase control over their medical decision making; and they were frustrated with that [emerging] picture of death, plugged in from every orifice to some version of medical technology."
Today, physicians are more likely than in the past to decide that certain life-prolonging treatment is futile, but still, doctors are more likely to focus on treatment, rather than helping a patient face end-of-life questions, some say.
Unilateral decision-making by physicians
Cohn maintains that many people have unrealistic expectations about medical technology at end of life, particularly cardiopulmonary resuscitation (CPR) intervention. Often, they just don't understand either the bodily intervention required to perform CPR, or they don't understand that most people do not survive CPR.
"[In] a chronically ill patient in a medical ICU with multi-organ system failure, CPR is probably not going to restore heart function, and even if it does, the patient is likely to be unconscious and then go on to die in the ICU days or weeks later," Cohn says.
This is true despite television portrayals of CPR as being effective "about 80% of the time, [and] patients survive CPR and go on to get up and walk out of the hospital. "And so doctors have said, 'We don't consider this to be medically beneficial treatment; we don't want to do it,'" Cohn says.
In light of the true statistics related to the success rate for CPR, many hospitals are developing policies about nonbeneficial treatment. "[Hospitals] are developing these policies about nonbeneficial treatment to give physicians some moral authority in making decisions about the parameters of treatment to be offered and provided, because physicians were getting upset about patients or patients' families who would come in and demand that everything be done," Cohn explains.
A physician's view of palliative care
In the view of James A. Tulsky, MD, director of the Center for Palliative Care at Duke University Medical Center in Durham, NC, medical technology advances "are what they are, and those move forward really as they ought to, as we use science and technology really to try to help people."
While advances in medical technology do raise ethical dilemmas, "I think we just need to manage those . . . and I think we can absolutely deal with those decisions," Tulsky says. Still, he notes, education regarding how to deal with issues surrounding end of life and technology could be improved.
Education needs to be improved for all clinicians, "but certainly [for] physicians and other health care providers in terms of how to present these issues, how to talk about them, what's important other than technology, and how to get people to identify their goals of care," he says.
Tulsky co-authored a study published in The Journal of the American Medical Association in November 2000 titled "Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers."1
In that study, the authors found that the most important thing to patients at the end of life was to be free of pain. Tulsky says that it's "pretty universal that people don't want to suffer in that way."
"The number two thing for patients and for family members is being at peace with God, so the spiritual beliefs are very important, and having some resolution in those spiritual beliefs is very important," he says. "The other things were issues of being with family, being comfortable, dignity and so forth. Mentally aware was one —that's an interesting one, because patients probably care about that more than physicians tend to. And so [patients] may be willing to forego some analgesia in the service of mental awareness — they want to experience life; they want to experience their loved ones before they die."
Of the attributes rated as important by more than 70% of all participants, the number-one desired attribute was to "be kept clean," followed by "name a decision maker," "have a nurse with whom one feels comfortable," and "know what to expect about one's physical condition."
Other important attributes included "have someone who will listen," "maintain one's dignity," and "trust one's physician."
"Most people's needs are basic — they're human beings," Tulsky says.
Tulsky says that there is "clearly a greater awareness of palliative care now. It's now a medical specialty . . . [and] the majority of hospitals now have palliative care services. So, therefore, it's becoming an increasing part of the vocabulary."
As to whether physicians are more likely to talk about death with their patients than they were 30 years ago, Tulsky suggests that there is no data to confirm that.
"What I can tell you is, according to surveys, doctors are more likely to disclose to patients bad news — to disclose a diagnosis of cancer, for example — than they were 30 years ago," he says.
If a hospital system has palliative care services, sometimes the physician who has been the primary caregiver for treatment can make a referral to a physician on the palliative care team, who likely will directly discuss end-of-life options.
"I think that the important concept here is that palliative care is not something that should only be entertained when somebody has only days or weeks away from death, but rather, it's something that ought to be offered early in the course of life-limiting illness and ought to continue throughout the course of that illness. Early on, when somebody is still getting interventions directed toward cure, the palliative part of what the team is doing will be less — maybe symptom management and maybe trying to understand a little about people's goals," Tulsky says. "As they get more ill, and as the cure-directed options become fewer, the palliative piece will become greater. Somewhere along the way will be more and more explicit discussions about end of life. Ideally, you will have talked about goals of care early on."
A chaplain's view on EOL needs
J. Vincent Guss, Jr., BCC, D.Min., chaplain and bioethicist for Falcons Landing Air Force Retired Officers Community in Potomac Falls, VA, acknowledges that sometimes medical technology, in effect, prolongs suffering at the same time it is prolonging life.
"The whole point of technology, I think, is to create a better chance for a person to be cured. But being cured . . . is not the same as being healed. Cure can be a sign of healing. If you're trying to alleviate symptoms [or] reduce suffering with technology, it's a great thing," Guss tells MEA. "But if you are using it to prolong biologic life when there's no quality of life, that would tend to increase suffering."
In Guss's experience, the primary concern for patients is "they want dignity."
"That's the main thing, and if they have that respect, or they're treated holistically, and their physical, their emotional, and their spiritual needs are met, their [remaining] days will be of higher quality," he says.
Guss recalls an example of a woman in her nineties who had stated her wishes in an advance directive that she did not want extraordinary measures taken to extend her life. Ultimately, however, at the end of life, she changed her advance directive for her children but experienced a prolonged, suffering death in the intensive care unit.
"The technology probably did give her an extra two weeks of life, but it was not a life that she had intended to live," Guss says. "She lived it that way to appease her children. Now, that was her right to do that, but it was very, very difficult."
EOL options: when to discuss
As to how physicians broach the subject of end-of-life options, the best approach is to assess individual needs and desires, Guss suggests.
"I think physicians, nurses, social workers, and chaplains alike need to assess what are the values of the individual. What do they value most? Is it longevity at any cost? Is it longevity to please the children or significant others? Or is it [that] quality of life might be impeded by technology, or can the high technology improve the quality of life?" Guss says.
Any one physician's approach to the subject is likely to be different from another's, and it depends on their sensitivity to the situation, Guss explains.
"How best to do it would be to be very clear about what the implications and the ramifications of using technology," he says. "If that is going to extend life, and if so, what will the burden and the cost be, and do it in a sensitive and caring and compassionate way, but be very clear; being fuzzy about it is not being compassionate.
"You may think you're being gentle, but actually, in the long run, lack of clarity ends up in greater suffering, not just for the patient, but for the family," he says.