Expert Commentary by Rebecca Anderson, J.D., M.S., C.G.C.
Rebecca Anderson, J.D., M.S., C.G.C.
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Testing Options and Results
When I first read the case study of Ori and Tal, I was preoccupied with guessing about their cultural and religious backgrounds, and then panicked about the medical information that hadn’t been conveyed when they rose to leave. I suspect I am not alone in these initial (and not very useful) reactions. Genetic counselors tend to be information-seekers. We like plans. We like order. We have tasks to do, and we may forget that one of our early tasks is to “meet our clients where they are.”
Ori and Tal gave a rare gift to Amanda by being forthright before her in their religious practice. In turn, Amanda honored them by remaining silent for a full minute while they completed their prayers. What an opportunity to establish trust and a collaborative plan. If I were writing the script for this interaction, I would substitute an open, neutral facial expression for Amanda’s warm smile, so as not to appear indifferent to the gravity of the situation. I would make Amanda’s next words something like, “Your faith is important to you,” followed by a pause in which Ori and Tal expand on their beliefs. Or Amanda might say, “I see that faith is an important part of your lives. How does your faith guide you in your medical decision making?” Or, “I’m glad to learn that you are people of faith. What should we know about your beliefs so that we can support you right now?” At this early stage in the counseling session, it would strain credulity to have Amanda ask about the spiritual meaning of this pregnancy, or to have her ask about the couples’ beliefs concerning the origin of birth defects. But those simple, open-ended questions might be revelatory. If Ori and Tal tell her that prayer can heal all infirmity, or that illness is caused by negative thoughts, bad karma or evil spirits, she knows a bit more about how to proceed. And that initial inquiry will assure the couple that their beliefs are respected and valued.
Amanda would then establish an agenda for the session. She might ask what Ori and Tal are most interested in discussing, tell them what their doctors want them to discuss, and seek agreement about how to proceed.
I have found it useful, especially when speaking with patients from non-Western or unconventional traditions, to explain our medical management options as ‘today’s beliefs.’ If framed in this manner, I think it becomes somewhat easier for patients to advance an alternate view without seeming disrespectful of medical authority. In this case I might say, “Today’s doctors put a lot of trust in what they can see with their machines, and measure with their tests. Your doctor is seeing ____________ on the ultrasound, and she thinks it might mean your baby has _____________. . . . There are more tests she can do, but she wants you to know what those tests can and cannot show. Then you and she can decide together what will be best for you, whether that means doing more testing, or not.”
Genetic counselors are more committed than most health care providers to achieving genuine patient autonomy and informed consent / refusal. Our working hypothesis is that our clients need to know all the relevant medical facts before they make an informed decision about how to proceed. By and large, it’s a decent hypothesis, and it shapes the content and time allocation in most of our sessions. But what if the “medical facts” themselves are irrelevant to a family? Do we feel comfortable setting them aside? Should we do so?
These questions have several valences. What is in the best interest of the patient medically? Psychosocially? What are our obligations to the attending and consulting physicians? What professional standards of care are relevant? Can a patient refuse to hear about his or her medical status and treatment options? How can such a refusal be ‘informed,’ and how is it documented? Some of these answers may depend upon where you practice, but in general the following ethical considerations apply:
A patient with decisional capacity has the right not to learn about his or her medical status and treatment options. Some people exercise this right by not seeking care. Others make it clear by words or actions that their priorities are different from those expected by their providers. On every medical management menu is the option of ‘no intervention.’ What do we do when a patient chooses that option without reading the rest of the menu – indeed, without even knowing why we selected a particular menu of management options for her?
Our first challenge is to ascertain whether the patient has decisional capacity. Is she of age, intellectually intact, able to process information and communicate choices? Our second challenge is to determine what, exactly, the patient is refusing. Is she declining information about the diagnosis and prognosis, or asking not to make the decisions, or does she want to withdraw from the therapeutic relationship? We need to explore her rationale for this choice: is it based on fear, health beliefs, inadequate information, lack of confidence in her ability to make decisions, financial constraints? Are there ways we can accommodate her concerns and continue to provide appropriate care? Our ultimate goal is to make sure the patient understands the consequences of her decision; that she is making a reasonably informed, uncoerced choice based on her goals and values.
If ongoing care is still desired, the patient may choose to delegate decision-making authority to a named third party (proxy consent). Or the patient can agree to be treated in accordance with the physician’s best judgment within the parameters negotiated by the patient and physician. This is known as waived consent. In this instance, Ori has entered into a physician-patient relationship with her obstetrician and has complied with all recommendations to date. If she wishes at this time to decline further information about the fetus and be managed expectantly, she and her doctor should confer about the boundaries of the information to be shared and reach an agreement that is documented in Ori’s medical record. It is not the duty of the genetic counselor to broker this arrangement, but it’s useful if Amanda knows it’s a recognized option.
The primary purpose of a medical record is to assure that all people involved in the care of the patient have the same information about the patient’s medical status, history of care, and plan of action. Amanda’s documentation should reflect in a factual and neutral manner her interaction with Ori and Tal. She should note the topics she offered to discuss, note that the couple declined further information, note the reasons given for the refusal (see ‘informed refusal,’ above), note the plans made with Ori and Tal for follow-up. She should note any observations about the patient (physical, emotional, behavioral, utterances, etc.) that could help put Ori’s decision into perspective, particularly religious or cultural beliefs and practices relevant to her medical care.
Standards of practice and obligations to other providers
The “standard of care” for clinical practice is what a reasonable and prudent provider would do under similar circumstances. This captures the obligations of the professional, not the patient. Although our professional practice is to discuss all medically reasonable management options, the patient is not obligated to listen, or to accept our recommendations. Another part of the genetic counselor’s professional practice is to assess psychosocial needs and provide appropriate support. Having explored the rationale for refusing additional medical information, Amanda’s priorities should shift to learning how she and other members of the care team can maintain a therapeutic relationship with Ori and Tal, and assist them on their journey.
The physicians caring for Ori will be expecting Amanda to accomplish certain tasks which she is now unlikely to accomplish (at least not in the expected time frame). Amanda will want to report this change of events promptly, so that Ori’s providers can prepare accordingly.
Best interest of patient
We like to believe that most people act in their own best interest, despite abundant evidence to the contrary. Perhaps at some level we recognize that ‘best interest’ is an internal measure. In the Western ethical hierarchy, we generally favor self-determination over a paternalistic, third-party prescription of the most prudent choice. We believe that only the patient can truly assess the burdens and benefits of medical care.
However, we do have a fiduciary duty to apprise a patient of potential pitfalls, and try to avert harms we can anticipate. In this case, Ori’s own physical safety does not appear to be at risk as a result of her decision. If it were, Amanda and Ori’s physicians would likely have a higher level of duty vis à vis Ori’s refusal of information. Our fiduciary duty to the fetus is even more ambiguous. In this case, Ori’s decisions are not expected to alter the outcome for her baby. If, on the other hand, the fetus were subject to an avoidable risk, again our duty would be higher to alert Ori and Tal of the likely consequences of inaction.
It is also important to remember that a patient’s assessment of best interest can change over time. Ori’s refusal of information today may reflect her current state of mind but she may think differently a week or a month later. Keeping the lines of communication open, and expressing positive regard for the patient’s process, will increase the likelihood that a patient will return when she is ready.
The ultimate message here is to serve the patient, not the medical agenda. Oddly enough, if we focus on the former, the latter tends to follow along.
i I have a quarrel with the term, cultural competency. I doubt we can achieve true competency in cultures beyond the few in which we’ve been raised. But I think it’s entirely possible to bring cultural capacity to our interactions with others: we can become aware of major cultural themes and sensitivities, learn rudimentary principles of etiquette, and humbly ask how to honor the traditions most important to our patients.
iiOri’s physician(s) might agree, for instance, to inform her of all medical developments relevant to her own health but not disclose anything about the fetal status beyond, say, fetal growth, heart rate, and other ‘routine’ observations unless asked. Ori, Tal and the physician(s) will also want to discuss delivery plans and management post-birth. In this instance, where fetal survival appears to be unlikely regardless of intervention, delivery at the local hospital is probably a reasonable choice but the couple should know that by declining to receive and act upon information about fetal status, they may also limit their post-natal management options. Or the couple may agree to follow any plan suggested by the physician, including referral to a tertiary care center for delivery, without being informed of the rationale behind the recommendations. For a pregnancy in which fetal survival or long-term wellbeing may depend on delivery at a tertiary care center, professional duties toward the fetus may shape the conditions under which they are willing to provide care. (N.B.: a physician may not unilaterally withdraw from a case because the patient disagrees with recommendations: the physician must transfer care to another, willing provider.)
Rebecca Anderson holds a B.A. in Political Science and English, a J.D. in Law and an M.S. in Genetics from the University of Nebraska – Lincoln. Her legal experience has included general practice, committee counsel for the Nebraska Unicameral, and intellectual property law. She is a board-certified genetic counselor and has worked in that capacity since 1986 at the University of Nebraska Medical Center. Since 2000 she has taught law and ethics at the University of Nebraska Medical Center, and is now an associate professor in the College of Public Health. She chairs the Medical Center’s Ethics Consultation Service and serves on the Medical Ethics Committee as well as the UNMC Institutional Review Board. Anderson lectures nationally on legal, social and ethical issues relating to genetics, has served as a field reporter for the UNMC television series LifeQuest, and was the host for the UNMC television series, A Healthy Debate. She is the primary author of Sotos Syndrome: a Handbook for Families. In 2002 she published a reference manual entitled, Religious Traditions and Prenatal Genetic Counseling, culminating a research project supported by the Jane Engelberg Memorial Foundation. Anderson served on the Nebraska Governor’s Commission on Human Genetic Technology. She has been a consultant to the National Human Genome Research Institute (NIH Genome Project), ELSI (ethical, legal, social issues) division, and currently is a member of the Bioethics work group for the NICHD’s Newborn Screening Translational Research Network.