A study published this month paints a troubling picture. Imagine palliative care doctors, working to deliver the best possible comfort care to their patients. Yet even as they meet the recognized best practices of their profession, their colleagues are judging their covert intentions and moral fiber.
Over half of the physicians who responded to the survey, published in the Journal of Palliative Medicine (JPM), reported they had been accused of “murder” or “killing” at least once in the past five years. Most often, their accusers were fellow members of the healthcare team.
Accusations came most frequently when doctors treated shortness of breath during ventilator withdrawal and when they increased doses of pain medication and sedatives to treat rapidly escalating symptoms.
Self-appointed moral police have been portraying end-of-life decisions as murder and trying to subvert them ever since the Cruzan case, in which the U.S. Supreme Court recognized the right to refuse life-sustaining treatment. That may be the first time noisy protestors harassed family members struggling over difficult, private decisions to do right by loved ones. Intrusive protests reached their pinnacle in the circus surrounding Terri SchiavoGrandstanding lawmakers even tried to substitute their own diagnosis and judgment for those of doctors and responsible family at the bedside.
This month’s study reveals how deeply moral watchdogs are embedded in the ranks of medical professionals, and how much damage they can do. Doctors in this study faced investigation by their institutions, state medical boards, and state and local prosecutors. Accusers seem quite willing to slander and jeopardize the careers of their colleagues when they disagree with treatment decisions reached in consultation with patients and family members.
The problem is not new. An editorial in the JPM in 2005 explained the effects on those involved and the potential to distort the practice of palliative care:
A hospice medical director in a federal facility followed accepted guidelines when providing palliative sedation to a few of his terminally ill patients. This resulted in a formal investigation by the Office of the Inspector General. Over a period of 1 year, the physician faced criminal charges and the loss of his job. Although cleared from having performed either unethical or criminal acts, he was sufficiently upset by the experience that he left his position and moved to another state.
The training director of a palliative care teaching program reported, “When I first performed ‘terminal’ sedation on the ward, nurses really had a problem. Just last week, I had a resident accuse me of euthanasia, because I ordered a low-dose morphine drip. It’s part of the day-to-day way of life in hospital palliative care.”
Accused doctors in the current study reported mental distress and anger. None were ever convicted, but some suffered license suspension, monetary damages and forced relocation. Ultimately, patients will bear the most distressing consequence: increased end-of-life suffering. Who will treat pain or breathlessness aggressively again after being so accused and harassed?
We need specific legal protection for professionals who honor their patients’ end-of-life decisions and follow best-practice standards for managing end-of-life agonies. Unfortunately, current law in most states does not grant unequivocal protection to treatment that is appropriate for the situation and follows the patient’s wishes. The dominant thinking today is that legality of treatment hinges on the state of mind of the physician: Did the doctor “intend” the death of the patient?
The field of bioethics rests on four premises. These include autonomy – respect for the individual, and beneficence – actions intended to benefit the patient. Sometimes autonomy and beneficence are in tension. Palliative care doctors bear some responsibility for the current situation, as they have sought legal protection based on the beneficence principle and their own intentions, rather than a patient’s autonomy and self-determination.
When a doctor employs drugs that relieve pain, delirium and breathlessness, and also suppress respiration, they know it is possible that medication may advance the time of death. Current policies protect them only if they acknowledge death as a possible, unwanted side effect, and assert their only intention is to ease the patient’s suffering. The principle amounts to: What is going on in the doctor’s mind? Of course no one can know, and the unknowable nature encourages accusations of improper intent. “Intent” protection will never offer real security to doctors or optimal care to their patients.
The answer is legal protection for medical care consistent with the informed, documented healthcare decisions of the patient or the surrogate, and consistent with standards of practice. Physicians should be able to deliver excellent care, prevent suffering at life’s end and act according to a patient’s wishes. A patient or surrogate should understand and accept that aggressive, effective comfort care may advance the time of death. It should not be forbidden for a patient or surrogate to “intend” death when they opt for removal of ventilator support or any other life-sustaining therapy. Doctors should not feel forced to withdraw and undertreat the patient who states such an intention. Only with clear legal protection – based on patient autonomy – will good doctors be safe from self-righteous posses of second-guessers and accusers.