Whether or Not to Engage in Further Treatment

Reason for Bioethics Consultation

The daughters of Mr. B request an ethics consultation, seeking guidance regarding surrogate decision-making. Mr. B, age 78, was admitted to the hospital six days prior when he suffered a dominant left hemispheric stroke rendering him with significant impaired comprehension and inability to speak or move his right side. A decision needs to be made whether or not to place a PEG and continue with treatment. The attending physician and the patient’s two daughters are not certain Mr. B has the requisite decisional capacity to participate in medical decision-making. Moreover, if the patient lacks capacity and the daughters need to offer substituted judgment, they are ambivalent, even with continued intensive treatment, whether their father would ultimately experience life as meaningful and worthy.

Case Discussion

Nurse: “I’ve taken care of Mr. B for the last two days. It’s really difficult to figure out how much Mr. B understands and absorbs. I feel so badly for him and his daughters. They’re here all the time. They really seem to care about him and are struggling with what the right action should be.”

Attending Physician: “It’s hard to really be certain about what Mr. B would want when he can’t speak. It almost seems cruel to continue to discuss this with him. I think we should have the daughters make the decision for him. Personally, I don’t think he’s going to improve that much, and it doesn’t sound like he would do well being so dependent.”

Patient’s Primary Care Physician: “I’ve known Mr. B for 10 years, and I think he’s the type of person who would want to take the risk to see if he can get better. Based upon our last session with Mr. B, I believe he was indicating he wants to pursue the PEG and treatment.”

Daughters: “ We love our dad and also fear that we might make the wrong decision. We need as much help as we can get. We don’t think Dad truly understands and appreciates his situation, and we’re surprised Dad’s primary care physician has confidence in his capacity. We’ not quite sure what to do.”

Use of the “Four Topics Case Analysis in Clinical Ethics” serves as a useful tool for collecting and organizing necessary and relevant data for the case. The four topics (boxes) include Medical Indications, Preferences of Patients, Quality of Life, and Contextual Features.

Medical Indications

The stroke leaves Mr. B with numerous deficits. A neurological evaluation reveals marked fluent aphasia, and dysarthria, which makes speech completely unintelligible. Mr. B cannot name objects or repeat short phrases. He follows commands and answers questions with nodding. He has right central seventh nerve paresis and right upper extremity plegia. With acute rehabilitation, including OT, PT, and speech therapy, Mr. B could improve; however, prognosis for functional recovery is uncertain. More time is needed to better prognosticate. Mr. B’s daughters believe the goal of treatment should aim toward functional recovery. Life, as it is now for their father, is unacceptable. Their worst fear is that PEG placement and continued treatment will yield no benefit in the long term, in which case, prolonging his life would contribute to his suffering.

Patient Preferences

Mr. B, a widower, has no advance directive. His two daughters are available to serve as surrogates. Attempts to communicate with Mr. B in his hospital room do not yield certain results. While he appears to listen, his daughters are not confident he can appreciate questions in their context, the nature of the decision he is being asked to answer, and the implications of the answer. More specifically, he cannot demonstrate an ability to grasp reasonably foreseeable consequences to accepting or refusing the PEG. The patient’s primary physician, alternatively, believes the patient is demonstrating the requisite understanding and thinks the patient is directing them to continue with treatment. Neither daughter can recall any conversations in the past where thresholds for limitation of medical treatment were discussed. Mr. B does not attend church; the daughters do not believe that faith/religion has shaped decisions in his life.

Quality Of Life

Mr. B’s daughters describe their father as a proud man who has always valued independence and has rejected outside help apart from transportation. Despite prior strokes and declining health, he has lived alone and has consistently rejected offers by his daughters for him to move in with them. He is a Caucasian WWII Marine Corps veteran, worked as a mechanic, and has been in retirement for the last 15 years. He is described as conservative, a poor communicator, with high needs for control. His daughters see him at least three times weekly and take him out for excursions to the dollar store. Mr. B’s daughters believe their father, if consigned to a nursing facility, would be miserable, as he would be forced to rely on others for basic needs. Alternatively, they know their father values his life and is a “fighter.” Because it is difficult to predict the outcome, it is hard to discern whether the burdens of undergoing rehab will yield ultimate benefit.

Contextual Features

The ethical conflict depicted involves respect for autonomy vs. beneficence. If Mr. B’s limited capacity disallows the patient to participate in informed consent/informed refusal, the surrogates will be required to offer substituted judgment in order to effectuate their father’s autonomy. The daughters do not agree with the primary physician’s assessment of their father’s capacity; however, they know that their father trusted and respected her. While providers are willing to insert a PEG, they are concerned with offering treatments to Mr. B that only have the effect of prolonging life, but not resulting in a tangible benefit. Whether or not providers can legally/ethically make value judgments regarding the qualitative definition of a “benefit” and what constitutes meaningful life is still the subject of controversy.

Summary and Recommendations

The ethics consultant, after interviewing the daughters and speaking with the treatment team, ascertained the daughters were willing to trust the primary physician’s recommendations to continue with treatment. They declined the use of other consultants and/or tools to assist in assessment of capacity, including psychiatry and social work. While they still believed their father lacked true understanding, they concluded, cautiously, the most ethically defensible option would be to give their dad more time for recovery. They consented to the PEG and continued treatment, with the aim of re-evaluating goals of treatment within the month. They were counseled that treatment could be removed at any point if it became clear it was burdensome and not contributing to adequate recovery.

This case features several ethical concepts: respect for autonomy; beneficence; non-maleficence (do no harm); elements of informed consent/informed refusal; decisional capacity determination; and surrogate decision-making.

The decision whether or not to engage in further treatment involved balancing competing values/obligations to “not engage in acts of harm,” to “offer a patient a discernable “benefit,” and to respect the patient’s autonomy/self-will in the process. This case asks the clinicians, also, to protect those with diminished autonomy. Generally speaking, the benefit/burden ratio determination lies with the patient/surrogate, as opposed to the physician. In this case, there was no ethical distress cited by any provider if treatment were either continued or withheld. Surrogates were willing to defer to the judgment of the primary physician.

Informed consent is the vehicle that upholds respect for autonomy. If elements of informed consent are not met, surrogate decision-makers step in to provide “substituted judgment” defined as “what the patient would have wanted if able to decide.” Lacking any evidence of the patient’s known wishes, values, or beliefs, the surrogate must use a “best interests assessment,” defined as, “making a good faith make determination of what treatment would promote the patient’s overall greatest welfare, considering all relevant factors, and made in accordance with ethical and medical standards.” (Ascension Health Care Ethics).

As you well know, informed consent allows patients to express autonomy in a rational and voluntary manner. The “reasonable” patient standard requires physicians to provide information about the disease process, risks, benefits of recommended or alternate treatments, and the likely effect of no treatment. In order to participate in informed consent, patients must demonstrate requisite decisional capacity.

Decisional capacity is defined as “a person’s ability to make health-care decisions” and refers to a medical-legal construct that is determined by a clinician.” Elements of decisional capacity include the ability of the patient to: 1) make a choice; 2) understand relevant information; 3) appreciate a situation and its consequences; or 4) manipulate information rationally. This differs from “legal incompetence” defined as “a threshold requirement, imposed by society, for an individual to retain decision-making power in a particular activity or set of activities,” and is determined by a judge. (Virginia D. Buckles, PhD,Washington University School of Medicine Alzheimer’s Disease Research Center) Decisional capacity is decision-specific; it is not equated with a diagnosis; rather, it requires assessment. Methods to assess capacity include expert opinion, responses to vignettes, and cognitive tests. Each method has advantages and disadvantages.

Mr. B’s daughters decided, ultimately, to err on the side of caution, recognizing that once a decision was made to limit treatment, there was no going back. While they continued to feel anxious, they did express relief around making a decision and were grateful to have had the assistance and newly acquired knowledge of medical decision-making standards.