The New England Journal of Medicine recently published an article entitled: “ The Palliative Care Information Act in Real Life,” (NEJM 364;No.20 May 2011), regarding a New York statute that requires a physician to have discussions of end of life treatment options with the patient when the patient is “terminally ill.” Alan Astrow MD and Beth Popp, MD, the authors of the article, are troubled by the phrase terminal illness. They argue that the definition in the statute is vague and an improper interference with the physician-patient relationship. The fact that they find the phrase, “terminal illness” troublesome, is troublesome.
The authors fail to understand basic concepts in clinical bioethics as well as case law as to the duties of physicians dealing with critically ill patients and the provision of information on all relevant and alternative methods of treatment. Perhaps they think like so many others, that end of life care planning is reduced, basically, to one question: If you are close to death and your brain is in a persistent vegetative state do you want us to remove you from life support or not resuscitate you if you go into cardiac arrest? This is not the case. A variety of options are available to patients who are critically ill. It is foolhardy to wait until a patient is unable to actually explain their wishes to the physician and allow an adversarial situation to be created between family members, friends, physicians and other medical staff, as well as possibly leading to referring the matter to the ethics committee, the hospital administration, or hospital attorneys.
A variety of options should be addressed as early as possible and relative to the disease trajectory. In addition to discussing the anticipated medical course, differing degrees of brain injury or damage, the likelihood of recovery and anticipated risks and treatment options and related issues of quality of life. The following are some suggested talking points:
a. The selection of one person who will act as surrogate decision-maker: the patient must understand that the surrogate decision maker only has any say if the patient cannot speak for herself. It should be made clear that the purpose of the surrogate is to effectuate the wishes the patient, not the wishes of the surrogate. Additionally it should be made clear that the surrogate does not have to be limited to a family member.
b. A patient has the right to know (subject to the therapeutic exception) applicable Evidence-Based Medical (EBM) information to help the patient understand and evaluate risks and benefits of various treatment options (including lack of treatment) based on clinically significant research, such as: cohort studies, double-blind clinical research, meta-analysis, etc.
c. Discussion with family and clergy should be encouraged;
d. Advise that he or she may seek a second opinion. Aside from the fact that the patient may or may not want a second opinion, offering to arrange one will often provide a sense of confidence in the physicians treatment plan.
e. At some point in time the patient may want to be transferred home on hospice and die peacefully with his or her family rather than in the ICU. Thus, palliative care needs to be explained and the probabilities presented to the patient with respect to longevity and quality of life.
f. Does the patient have any religious requirements that they wish to follow with respect to receiving pain medication that may or may not hasten death? Many patients are willing to receive pain medication but not to the point where it may hasten death. Others may want to receive all necessary pain medication and sedation should be kept as pain free and comfortable as possible.
g. Does the patient have religious convictions with respect to receiving blood or blood products?
And so on.
The rights of patients to make their own medical decisions create reciprocal duties on the part of their physicians to respect and uphold these rights.
The authors argue that there is a “standard of care” that dictates when physicians must tell their patients all relevant medical information. This is not true.
The standard is not determined by the medical community, but rather, by the patient him or her self. It is not a medical question; it is a personal, individual and unique decision by the patient, of which can only be made if all medical information and options or explained.
As one commentator advises physicians: “If you don’t speak early, you lose your voice.” Carol Taylor, RN, PhD advises patients: “For someone who sits with families trying to make these life and death decisions, I can say that planning is the greatest gift to your family.”
What is it that stands in the way of early discussion for many physicians?
The authors of the article, Drs, Astrow and Pope, claimed that:
“… physicians need to feel comfortable communicating their values and experiences and providing non authoritarian guidance and support while expressing interest in and respect for the experiences and values of patients and families.”
This statement is ignorant of the law, foolish and, moreover, it is surprising that the NEJM would publish this misguided advice.
Physicians do not have to feel comfortable. What difference does it make if the physician “feels comfortable” or not when carrying out his or her responsibilities. Many physicians, if not most, will never feel comfortable in such situations. What is important is that the patient is not “comfortable” and may be fearful, confused and in need of all necessary information. (Without the provision of all relevant information, there cannot be any informed consent and the physicians may be found civilly liable in addition to incurring state imposed fines).
Secondly, it is clearly inappropriate for a physician to convey his or her values to the patient. A physician’s values are of no moment whatsoever. It is, on the contrary, the patient’s values alone that should guide decision. Indeed, physicians’ values should not even be discussed or mentioned. If so, the patient would receive different guidance dependent upon which physician’s door she walks through.
Thirdly, the physician is always in a position of authority. The author’s suggestion that they can counsel a patient in a non-authoritarian manner will not work. That cannot be avoided. So, any suggestions, as to a physician’s values must be avoided. The values of the physician are not in issue.
The decisions of the patient should as John Stuart Mill once describe, be a product of “…free, voluntary and undeceived consent and participation…”
The authors provide us with a scenario of an 85-year-old man with gastrointestinal cancer that had metastasized to the lung.
“… when his cancer and its spread were diagnosed two years ago,
he was already frail.”
At this point, if not long before, the patient should have been given the opportunity to consider many of the types of questions listed above.
The patient may have benefited from the knowledge, for example, that in a recent study of the 151 patients with metastatic non-small cell carcinoma, early palliative care led to significant improvement in quality of life and mood and that patients receiving earlier palliative care and less aggressive care often had longer survival rate.” If this 85-year-old patient with metastatic lung cancer was not presented with these and like information from applicable and relevant and authoritative studies, then the patient lost the opportunity to have longer survival and improved quality of life.
Finally, Drs, Astrow and Pope are concerned with the interference of the state into the practice of medicine. I agree that interference of the state into the practice of medicine is something that must be vigorously challenged. In this situation, however, the statute refers to the necessity of ensuring the rights of patients rather than medical practice