ST. LOUIS, Missouri-United States Attorney General John Ashcroft "is putting a spoke in the wheel" of end-of-life care, said Karen Stanley, RN, MSN, AOCN, FAAN. In a decision designed to prevent the implementation of Oregon’s Death
ST. LOUIS, MissouriUnited States Attorney General John Ashcroft "is putting a spoke in the wheel" of end-of-life care, said Karen Stanley, RN, MSN, AOCN, FAAN. In a decision designed to prevent the implementation of Oregon’s Death With Dignity Act (allowing assisted suicide), Mr. Ashcroft overturned a previous ruling stating that prescribing opioid pain relievers in accordance with Oregon’s Act would not violate the federal Controlled Substances Act.
Interferes With Palliative Care
The new decision, Ms. Stanley said, allows the US Drug Enforcement Agency to question the intent of any physician who prescribes pain medication to a patient who dies shortly thereafter. This "absolutely interferes with palliative care," she said.
Ms. Stanley, a consultant on cancer care, pain management, and end-of-life issues, coordinated the Institute on End-of-Life Care at the Oncology Nursing Society’s Second Annual Institutes of Learning.
During an interview at the meeting, she said that Mr. Ashcroft’s decision "is one of the most important issues in end-of-life care. It is setting us up for less-than-adequate pain management. I hope something can be done."
If the order stands, she said, "I believe pain management across the board will suffer mightily. It will reinforce those physicians already averse to using opioids and make those using them more wary. This will be an excuse to prescribe less-than-effective analgesia."
[Editor's Note: A federal judge has blocked the attorney general’s order until a hearing scheduled for March 2002.]
Even without the ruling, Ms. Stanley indicated, it is not as if the end-of-life care wheel was going anywhere very rapidly. Despite all the media attention and investment in time and resources that end-of-life care has received in the last 4 to 5 years, there has been marginal improvement in practice, she said.
People who are dying are not picking hospices over hospitals in any greater numbers, the increase in the number of people with advanced health care directives "is barely a blip," Ms. Stanley said, and doctors and nurses are still leaving educational institutions ill-prepared to attend to end-of-life issues.
Studies are needed to determine strategies for supporting, preparing, and educating patients and families about end-of-life-care decisions and how to manage symptoms. This will require wide dissemination to both the public and health care professionals.
Ms. Stanley said there will be little change in end-of-life care until consumerspatients and their familieschange their view of dying, and that won’t happen, she believes, until baby boomers begin to reach the end of their lives.
"We have believed that medicine could delay death. That is why people die in hospitals receiving care they do not need and might not want, care that doesn’t prolong life but only prolongs suffering." Dying, she added, "is not a medical event at all. It is more about relationships, about taking care of business."
Ms. Stanley said she is starting to see that shift in consumer thinking in community coalitions, such as the one she formed 2 years ago in Claremont, California, that are springing up to address end-of-life issues.
"We’re discovering that as one approaches one’s 50s, the issue starts to be noticed. In fact, baby boomers are saying ‘how will it be’ and ‘let’s be sure it is as I want it.’ And when consumers want something, ultimately they will get it. It just takes a while."
The coalitions have also discovered that advanced health care directives are less useful than was originally thought, because they often do not address the needs of particular real life situations. Groups such as Ms. Stanley’s Claremont Coalition Concerned With End-of-Life Issues are turning instead to values histories.
Completing a values history requires that the person do a self-inventory to define his or her core values. "Values are strongly held beliefs," Ms. Stanley said, "including, for example, how one defines quality of life for oneself. If a person says ability to communicate is important, then the doctor knows he or she wouldn’t want certain things."
A values history, she said, deals with the person, not the pathology. "In Claremont," she said, "we’re doing classes on it and sending the patient’s values history along with the medical record. Health care professionals say that if they know the values history of a person, they can make much better decisions."