My TR pearl this week is ethics-related and was inspired by the piece that Charles Sanky sent out last week, “Capacity, Informed Consent and Third-Party Decision-Making” written by Jacob Appel, a Mount Sinai Emergency Psychiatrist and Bioethicist. I agree with Charles that this is an excellent introduction and encourage everyone to read this piece when you have the time, however, I am going to highlight much of what is described below.
Capacity:
What we think of as decisional capacity is a relatively recent idea but has changed quite a bit since the 1960’s. This change coincides with the shift from paternalistic medicine to one that places patient autonomy at the forefront.
As recent as the 1960s, the practice of withholding a diagnosis from a patient was widely practiced by physicians, most noticeably for diagnoses of cancer or other terminal illnesses. This in some way, was due to the fact that many diseases were highly stigmatized or few medical interventions were available. However, by 1979, a survey showed that nearly all American physicians shared cancer diagnoses with their patients, and by the late 1980’s, the concept of decisional capacity assessment was widely recognized.
Classification of Capacity
Many forms of capacity exist, including:
- Testamentary Capacity: The capacity to write a will
- Testimonial Capacity: the capacity to testify in court
- Contractual Capacity: the capacity to sign a binding and enforceable contract
- Decisional Capacity: The most recent form of capacity which is the capacity to render medical decisions
Until the 1970s, decisions related to the ability of patients to make their own medical decisions were left to the legal system. People deemed incompetent were often assigned guardians or conservators and the determination of competence could only be reversed through courts.
Competency differs from decisional capacity which is issue-specific. Only the term capacity should be used to refer to decision-specific assessments by physicians, while competence should be reserved for the judgment of courts.
The most commonly used system for capacity assessment in American hospitals today was initially proposed by Paul Appelbaum and Thomas Grisso in 1988. They offered several general principles:
- Competent patients have the right to decide whether to accept or reject proposed medical care
- In the absence of “substantive questions” about a patient’s competence, physicians “should accept the patient’s wishes”
- The capacity “may fluctuate with changes in a patient’s underlying mental disorder or with unrelated factors such as fatigue, the effect of medications or the occurrence of an unpleasant event immediately before the evaluation” so multiple efforts should be made, whenever possible, to determine capacity and evaluation should be an ongoing process
- That most determinations of decision-making capacity be conducted by physicians without referral to the courts.
Appelbaum and Grisso also created the: Four Skills Rubric for capacity assessment in clinical settings. Deficiency in any of these abilities might be sufficient for a finding of incapacity.
The Four Skills Rubric:
- Patients need to “communicate stable choices” regarding their care that endured “long enough for them to be implemented”
- Patients needed to “understand information about a treatment decision” including the “risks and benefits” and “likelihood of various outcomes”
- Patients had to appreciate this information as it relates to them personally, including “acknowledging illness when it is shown to be present, evaluating its effect and the effect of the treatment options presented and acknowledging that the general probabilities of risks and benefits apply to the situation”
- The patient needed to “manipulate information rationally”, weigh “multiple options simultaneously in a way that reflects the weights previously assigned to them” and reach logical conclusions derived from starting premises.
- If you demonstrated the 4 skills, you maintained your decision capacity.
You cannot wait for a patient with capacity to deteriorate and overrule a clear decision.
The authors of this piece, Jacob Appel and Omar Mirza, have proposed an alternative “patient-centered approach” to capacity assessment which is designed to reduce the number of unnecessary capacity evaluations and minimize the need for exceptions. However, this has not yet widely been adopted in practice.
Informed consent
While there is evidence that physicians used informed consent forms as early at 1900, the term “informed consent” was not widely accepted until the 1950’s.
How many and what kind of risks do you need to tell the patient in order for them to make an informed decision regarding their care? History shows that courts have struggled to determine this.
Mohr V. Williams (1905) – A physician performed an Ossiculectomy (what???) on a patient who had complained of difficulty hearing in one ear but had performed the surgery in the opposite ear because the surgeon thought that ear was actually the one in need of surgery.
Pratt v. Davis (1906) – A surgeon performed a hysterectomy without permission in an attempt to cure the patient’s epilepsy (????).
In both cases, the courts ruled in favor of the patient and started the framework for informed consent.
Despite some of these early court cases, as late as the 1950s courts did not require full disclosure of relevant information.
Hunt v. Bradshaw (1955) – A patient was told that “the operation was simple” but it was however serious and involved undisclosed risks. The patient lost their arm during the procedure, but the Supreme Court of North Carolina found no obligation to disclose the risks of surgery so long as what the doctor did divulge were not “false”.
While this piece continues to describe nuances of informed consent (that I highly recommend you read for yourself). Informed consent ultimately boils down to 3 key features:
- Disclosure of all relevant information to the patient
- Understanding: ensuring the patient understands the information and appreciates what it means
- The patient voluntarily agrees to the procedure or interventional without being coerced
Advanced Directives and Third-Party Decision-Making:
A human rights activist named Luis Kutner first proposed in the 1960s that a patient could “append a document providing that if his condition becomes incurable and his bodily state vegetative with no possibility that he could recover his complete faculties, his consent to further treatment would be terminated” – the proposed name for this document was….A living will.
In 1976, A 21-year-old female was found to be in a “persistent vegetate state” after an ingestion, and her physicians believed that she would require ventilator support and feeding tubes for the remainder of her life. Her parents wanted the ventilator to be turned off, but St. Clare’s Hospital where the patient was being cared for, refused. The Supreme Court of New Jersey ultimately ruled that the patient’s appointed guardians could terminate her ventilator support. This was one of the first court cases regarding third-party decision making.
There are 2 categories of Third-Party Decision Makers:
- Appointed agents
- Individuals previously designated by patients once the patient is unable to make decisions for themselves
- Can be:
- HCP, Health Care Proxy
- MPOA, Medical Powers of Attorney
- HCPOA, Health Care Powers of Attorney
- Can be:
- They can operate in conjunction with living wills, sometimes a living will can trump the wishes expressed by a proxy when there is a disagreement
- Individuals previously designated by patients once the patient is unable to make decisions for themselves
- Default agents
A recent study done by Frederic Wolinksy et al. found that “concordance levels” between patient’s wishes and those reported by their supposed proxies “are disappointing” and suggest substantial differences.
- They found that “Only 16 percent of patients ever discussed their wishes regarding cardiac resuscitation with their third-party decision-makers”
- We as Physicians must do a better job of educating patients that the appointment of an agent is the beginning of an ongoing process of sharing one’s wishes with one’s agent, not a concluding decision that does not require future engagement.
This piece argues that there is an advantage of an appointed surrogate over a default surrogate. An appointed surrogate is often widely recognized across state lines and in foreign countries because of the documentation that exists, however default agents are not always recognized.
In New York Staten, the order of succession for a default agent is as follows:
- A guardian authorized to decide about healthcare
- The spouse – if not legally separated, or the domestic partner
- A son or daughter 18 years of age or older
- A parent
- A brother or sister 18 years of age or older
- A Close friend
This is just a small summary of what is an eye-opening piece written by Dr. Appel, he touches on many other topics including psychiatric advanced directives as well as medical aid in dying, that I highly recommend reading. Once again you can find the PDF attached to this email. Happy reading.
