Compassion & Choices Medical Director, Dr. David Grube, answers frequently asked questions about medical aid in dying.
Q: Isn’t medical aid in dying inappropriate given that prognoses for life expectancy in terminally ill patients can be wrong by months or decades and end-of-life wishes to die can wax and wane?
A: We doctors are much more likely to overestimate our patients’ length of survival than to underestimate. In fact, a study of physicians’ prognostic skills showed that sixty-three percent of us tend to overestimate by 500%.
With cancer, the most common diagnosis among those seeking medical aid in dying, predictions about length of survival are clearer. For many reasons, oncologists, however, are often reluctant to tell patients their disease is not curable. A far greater problem is not informing patients when treatments are no longer likely to have a benefit. According to the National Hospice & Palliative Care Organization, in 2014, nearly half of all hospice patients were enrolled for fewer than 14 days. Similarly, in my experience, most patients request medical aid in dying in the very last days of their life, when the process cannot be accomplished. Clearly, we physicians hold out the hope for patients longer than may be in their own interest.
It is important to remember that medical aid in dying is patient-centered care. The dying individual remains in control and determines if and when to ingest the medication. Of course, if their hospice care allows for them to improve for a time, or if a new and remarkable treatment prolongs their life in a way that they believe is dignified, enjoyable, and tolerable, they can then choose to delay aid in dying, or not opt to employ it. Most recent statistics from Oregon show that approximately 1 out of 3 patients who received a prescription for medication never used it.
Q. In states where medical aid in dying is authorized some physicians choose not to participate. What is the physician’s professional responsibility to her or his patient?
A: The definition of medical professionalism is to put the patient first.
Shared medical decision making requires the competent and compassionate doctor to listen, to teach, to explain, and to offer standards of care to the patient. If a medical treatment or procedure does not fall within the personal beliefs of a practitioner, she or he is obliged to refer the patient to another physician for counsel and care. (An example in family medicine might be a referral for consideration for a circumcision if the attending physician does not believe that it is in the best interest of the child. Recall, the referral is not for the procedure, but for the consideration of it.)
All referrals should be timely and urgent; if there is one thing that the dying patient does not have, it is time. If a terminal patient might consider medical aid in dying, I recommend that this patient and his or her family have a conversation about this with their personal physician well in advance of the need. They must be prepared for the possibility that their primary care physician will not support them. If a physician practices medicine within a limited religious ideology or institution, that should be disclosed to the patient at an early visit.
Q: Doesn’t the Hippocratic Oath preclude physicians from helping patients die?
A: The Hippocratic Oath is an ancient Greek document that is no longer used at any U.S. medical school graduation ceremony. It begins by asking for allegiance to Apollo and other mythical gods and goddesses. However, like the US Constitution, many of its important principles endure while the application of those ideals has evolved over time. The standards of 21st Century medical ethics can be found within it: Patient autonomy. Beneficence. Non-maleficence. Social justice. And most of all, duty to one’s patients and the patient’s desires and goals. As medical professionals, one of our greatest challenges is to respect our personal commitment to do no harm (professional integrity) in the face of the ambiguities resulting from advanced medical technology. While physicians can now prolong and extend life, thereby conflating the roles as healer and comforter, teacher and guide, shared medical decision making obliges the doctor to embrace full informed consent, especially in care at the end of life. Medical professionals can no longer simply fight disease at any cost, but must help patients weigh risks, benefits, and quality of life as they make their medical choices.
Q: Are doctors qualified to assess mental capacity before a patient can make a valid request for medical aid in dying or do psychiatrists need to be involved?
A: Every physician is not only fully trained to assess the capacity of all of the patients they treat on a regular basis, but is also required to document this assessment in the medical record. Shared medical decision-making requires a patient be able to understand medication side effects, treatments, and procedures, etc. This is accomplished through informed consent, and is a typical component of most medical care. Medical aid in dying should not be subject to capacity assessment requirements beyond the standard of care for any other health care decision. If a physician is concerned about a patient’s ability to understand instructions, make appropriate decisions, etc., she or he may seek a neurologic or psychologic evaluation to help determine capacity.
Q: How is self-administration defined and practiced under the Oregon Death with Dignity Act?
A: In all authorized states, medical aid in dying requires that the dying individual be mentally capable, volitional, and self-administer the medication that has been prescribed by the Attending Physician.
The medication is ingested, which simply means it is introduced into the gastrointestinal tract. In most instances, this means swallowing, but some individuals have a feeding tube (j-peg, etc.) and the medication can be introduced into the body through it. Preparation of the medication (opening capsules, mixing solutions, filling a reservoir or feeding tube) can be done by a family member, loved one, or nurse; however, volitional ingestion means that it is the dying person who must instigate the action (push a plunger, open a valve or clip, etc.) of ingestion.
Some individuals (e.g. those with ALS) do not have use of their arms so volitional ingestion for them might mean sucking on a straw that is in the liquid medication. In this instance, an assistant may hold the medication. Active vomiting is a contraindication to oral ingestion.
Q: Isn’t medical aid in dying a slippery slope to euthanasia as it is practiced in Belgium and the Netherlands?
A: The concept of a slippery slope implies that, over time, the statutory guidelines for medical aid in dying will be either liberalized by elected officials or disregarded with impunity by practitioners. Both assumptions are incorrect. Since Oregon’s law took effect in 1997, there has been no attempt to broaden the scope of the law and no physician has been disciplined for practicing outside the scope of the law. Almost two decades of rigorously observed and documented experience in Oregon demonstrates that the law has worked as intended with no evidence of abuse.
Slippery slope claims with regard to European countries are also misapplied. “Euthanasia” laws in Belgium and the Netherlands, for example, are less restrictive than American laws, but did not “slide” to their current form. Rather, the individual laws were developed with guidelines that differ from Oregon’s Death with Dignity Act (e.g. no self-administration requirement) in place from the law’s conception. While anecdotal stories of abuse of “euthanasia” laws abound, research indicates that cancer accounts for more than 70% of all cases of “euthanasia” in both Belgium and the Netherlands.