Practice Matters

Does a right to refuse treatment include a right to demand it?

According to the dictionary, the word integrity is a noun, and it means either adherence to moral and ethical principles; soundness of moral character; honesty or the state of being whole, entire, or undiminished. It is much easier to define a person of integrity than it is to be one. The best of us muddle through, doing the best we can. Others avoid the conflict by ignoring it, and some of us sidestep the issue altogether by pretending that it is someone else’s problem (for example, “The devil made me do it” syndrome). That being said, let’s consider how acting with integrity relates to the issue of a patient’s right to futile treatment. First, I want to share the following:

  • In 2011 The Guardian published “Do not resuscitate: final word is with medical staff, whatever patient feels,” which reported that Janet Tracey, a British patient, died in hospital after, according to the family, a “do not resuscitate” (DNR) order was put in her medical notes without consulting either the patient or family. Another British patient, Jill Baker, who had stomach cancer and was being treated for septicemia, learned after leaving the hospital that a DNR order had been written in her notes by a “junior doctor.” The article notes, “Neither she nor her husband had been consulted…Adults can legally refuse medical treatment, even if that leads to their death. But the medical profession is also clear that doctors cannot be required to give treatment against their clinical judgment, although they should offer patients the chance of a second opinion, if possible.”
  • In 2013 RYOTnews published “New Mexico doctors can now legally prescribe life-ending medications to terminally ill patients.” According to the article, “Doctors Katherine Morris and Aroop Mangalik and patient Aja Riggs filed their lawsuit in March 2012…Riggs, a 49-year-old Santa Fe resident who has undergone aggressive radiation and chemotherapy treatment, testified in December that her cancer was in remission but there have been days when getting out of bed and walking 15 feet were an uphill battle. Riggs said she wanted to live, but she also wanted the option of dying if her condition worsened.” The article reported that Nan Nash, a district judge in Albuquerque, said that the constitution prohibits the state from depriving a person of life, liberty or property without due process. Nash also said, “This court cannot envision a right more fundamental, more private or more integral to the liberty, safety and happiness of a New Mexican than the right of a competent, terminally ill patient to choose aid in dying.” The judge ruled that physicians could not be prosecuted under the state’s assisted suicide law, which classifies helping with suicide as a fourth-degree felony. The article noted that five states, including Oregon, allow patients to seek aid in dying if their conditions become unbearable, according to Kathryn Tucker, director of legal affairs for Compassion & Choices.

Yet there are physicians in states where assisted suicide is permitted who refuse to prescribe the drugs, and pharmacists who refuse to fill the prescriptions of those who do prescribe the drugs. In fact, there are pharmacies that refuse to carry the type of drugs usually prescribed.

Now let’s really muddy the waters. As abstracted from www.ethics.va.gov, the US Department of Veterans Affairs (VA) respects the two most common examples of advance directives: living wills and durable powers of attorney for health care. However, distinctions are made. For example, DNR orders only apply when the patient has no pulse. A patient’s monitor may indicate a slow heartbeat, but he may not have yet lost his pulse. In this circumstance, the healthcare team may use various means to normalize the patient’s heart rate, such as intravenous medicines and pacemakers. If, on the other hand, the patient’s condition deteriorated to the point where he had no effective circulation, efforts to revive the patient should cease.

Another term that is sometimes confused with DNR is advance directive. What is the difference? Perhaps the most important difference is that an advance directive is a document authored by a patient whereas a DNR order is a medical order written by a health care provider. Accordingly, each has different implications. For an advance directive to be valid, the person completing the document must have decision-making capacity. Advance directives are voluntary; patients don’t have to complete one. However, if a patient loses decision-making capacity and does not have an advance directive, a surrogate cannot complete an advance directive on the patient’s behalf. In contrast, surrogates can consent to the entry of a DNR order for a patient who no longer has decision-making capacity.

Another distinction is that a DNR order applies immediately. When the DNR order is entered into the computer order entry system, the record is flagged to alert other healthcare staff that the patient does not want CPR. Advance directives are also entered in the patient’s healthcare record and flagged but they cannot be acted upon until after a patient has lost decision-making capacity and any other conditions specified by the patient are met. For example, a patient’s advance directive might state, “If I am in a persistent vegetative state I do not want to be resuscitated.”

Finally, advance directives require interpretation. The language used to describe treatment preferences is often vague or ambiguous; in some circumstances statements made by the patient in one portion of the document may conflict with another section of the advance directive. Providers need to confer with the patient’s designated healthcare agent (or other surrogate) about how the patient’s wishes should be carried out.


While, by and large, most health professionals in the United States have accepted the patient’s right to refuse CPR under certain conditions, they are not necessarily ready to comply under all conditions, or they may find ways to wriggle around a patient’s decision. It will be interesting to see how professionals respond to suggestions, or even directives, that allow the professionals to decide who does NOT receive CPR without consulting the patient or family. As Britain’s National Health Service has made clear: “Adults can legally refuse medical treatment, even if that leads to their death. But the medical profession is also clear that doctors cannot be required to give treatment against their clinical judgment…”

Although such cases have yet to appear in the United States, I think that questions of conscience among health professionals are going to be among the most vexing. I want to preserve the right for healthcare professionals to act or to refuse to act on the basis of individual conscience; but, I also want to protect those who are in harm’s way by appeals to conscience. I want patients to be enabled to refuse treatment – and I want clinicians to be able to follow their best professional judgment.

As far as resuscitation is concerned, this is becoming increasingly more difficult given the ineffectiveness of CPR among dying patients. According to an article in the journal Resuscitation: “While CPR may result in the establishment of a perfusing pressure, in almost all instances, the patient succumbs despite advanced life support technology.” I also want patients’ to have more, not less control over how and when they die. And I definitely think they have some right to treatment if they so desire. But in all honesty, I must wonder if people have a right to futile interventions.

How long will dying patients in the United States be allowed the choice of CPR given that a 1996 study (It has to be more expensive now!) indicated that the cost of CPR with a survival rate of 0.2% is $544,000 – when CPR survival rate among dying patients is effectively zero?

In the end, it may be money that makes the decision – but that worries me even more…

Leah Curtin is Executive Editor, Professional Outreach for American Nurse Today.

Selected references

Marik PE, Zaloga GP. CPR in terminally ill patients? Resuscitation. 2001 Apr;49 (1):99-103.

Timmerans S. Sudden Death and the Myth of CPR. Philadelphia, PA: Temple University Press; 1999; 85.

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