Here are the cases used in group sessions at the conference. Below, you will find commentary on each case.
Cases for Discussion
1. John, a 39 year old patient in the ICU, is in a persistent vegetative state (PVS). Two years ago, he suffered a cardiac arrest, was resuscitated and placed on a ventilator, and was in a coma for six weeks. He was removed from the respirator and able to breathe and swallow his saliva – reflexive acts – but was unable to drink or eat food. He was kept functioning with an artificial feeding and hydration tube in his stomach. Like most PVS patients, he has sleep/wake cycles, makes eye movements, and makes noises that sound like moaning, laughter, or crying. He cannot think and is unaware of his surroundings.
John’s wife, Amy, asked that artificial hydration and nutrition be removed, allowing John to die. John had no living will, but he had indicated at the funerals of two family members in recent years that he would not want to be maintained on artificial life support. John’s parents argued strenuously against this course of action. They contended that Amy had fallen in love with another man, and that she was looking to collect on John’s life insurance. Also, they added, they were devout Catholics, and John was raised Catholic.
(this case is loosely based on the Theresa Schiavo case)
2. Bob Wilson is a 44 year old patient at Dr. Sharon Cameron’s walk in clinic. He is newly married and very happy with his new spouse and beautiful stepdaughters. Dr. Cameron has been treating Mr. Wilson for moderate hypertension (180/103) for about 6 months. She initially recommended lifestyle changes, such as a diet low in salt and fat and regular exercise, but Mr. Wilson’s blood pressure had remained moderately high. Knowing that Mr. Wilson does not have health insurance, and that most of her clinic patients have a hard time making ends meet, she is now considering prescribing a drug with a high rate of safety, efficacy, and affordability. Unfortunately, this drug has a known side effect of leeching potassium from the body, which Dr. Cameron will encourage Mr. Wilson to eat bananas to offset. Of greater concern with this drug is a 3-5% chance of causing impotence in males. There is a newer, more expensive drug without these side effects. Dr. Cameron wonders whether she should prescribe the less expensive drug without telling Mr. Wilson about the remote, totally reversible risk of impotence, or whether telling him might actually create a level of anxiety that could induce the very side effect she is trying to avoid.
(this case is adapted from “Antihypertensives and the Risk of Temporary Impotenc: A Case Study in Informed Consent”, by John D. Arras, in Ethical Issues in Modern Medicine: Contemporary Readings in Bioethics, edited by Bonnie Steinbock, John D. Arras, and Alex John London, eight edition)
3. Maria Maros is a 33 year old mother of four who recently became a patient of a local general practice. She came in for a routine intake physical examination, and saw a nurse practitioner, Mr. Klein, not her “official” PCP. An EKG and lab tests had been completed by a lab technician the week prior. Mr. Klein reviewed the results of Mrs. Maros’ lab tests, EKG, blood pressure readings, and physical. He noticed EKG abnormalities. He took Mrs. Maros’ blood pressure again, listened to her heart a second time, and asked her questions about how she had been feeling lately, specifically regarding chest pain, dizziness, and increased perspiration. Mrs. Maros, an avid viewer of ER and House, wondered if something in the EKG has worried Mr. Klein, and she asked him, “Is there anything wrong?” In fact, Mr. Klein had planned to discuss Mrs. Maros’s test results with her primary care physician. How should he answer this question? What if Mrs. Maros had NOT asked?
4. Tyson Banks is a social worker at a busy local hospital. He and his wife have unsuccessfully tried to conceive for six years, and they long for a child. He has recently spent a lot of time with the Green family, whose beloved matriarch, 101 year old Rose Green, passed away in his facility after a long illness. Rose’s granddaughter, Amanda, is an obstetrics nurse at a smaller local hospital. Amanda spent a lot of time by her grandmother’s hospital bedside, and relied on long talks with Tyson for social support, and help with making living arrangements for her surviving grandfather. One day Amanda mentioned how happy she was that she was able to connect an unmarried and unexpectedly pregnant patient to a friend of hers who wanted to adopt. She felt wonderful that she could help provide a home for an unwanted baby. Tyson considers telling Amanda about his own infertility, and asking for her help in locating a baby.
5. Tom Tortelani is 70 year old male with congestive heart failure and restrictive lung disease secondary to severe scoliosis was admitted to the intensive care unit with respiratory failure requiring mechanical ventilation. After 14 days it became evident he could not be weaned from the ventilator. Several attempts had been made to improve his pulmonary status (including failed attempts to place a bronchial stent). A palliative care consult and family meetings followed. When the palliative care physician communicated with the patient using handwritten notes, Tom seemed to want to have the ventilator withdrawn. The patient’s only relative is his son, Hank, an active alcoholic who is not in recovery, and who has been living with his father. Hank insists that his father stay on the ventilator, but refuses to allow him to be transferred out of state for long term care. The medical team feels that continued aggressive treatment is futile and useless.
6. Noah, a thirteen year old boy from Maryland with HIV positive status, has been admitted to a local hospital briefly for treatment of an unrelated injury that occurred while he was on vacation. His parents notify the health care team that they do not want Noah’s seropositive status disclosed to him, because they fear the consequences, including Noah’s own mental health, as well as negative peer group and community reaction. Several members of the health care team feel strongly that Noah should be told, both for his own sake, and for the sake of others who might be inadvertently harmed by Noah’s ignorance, should he become sexually active. Others feel that, while he should be told, it is not their place, especially since he is not a regular patient, and will be discharged home to Maryland within days. What should the health care team do? Would your answer change if Noah asked the question directly?
Comments on Cases for Discussion
These don’t exhaust, by a long shot, all of the ethically significant considerations in the following cases, but I hope they provide food for thought.
1. John, a patient in a PVS, his wife Amy, his parents, and withdrawal of nutrition and hydration
As his wife, Amy is John’s legal representative. Because John did not prepare an advance directive, Amy’s legal status is “surrogate” (rather than “agent”, a status she would have if John had named her in a living will or durable health care power of attorney). In the state of Maine, surrogates may decide to withhold or withdraw life-sustaining treatment for an adult if the patient (a) lacks decision-making capacity (this is a clinical determination), if (b) no agent or guardian has been appointed, or one is not reasonably available, and (c) if the patient is in a terminal condition or PVS. According to Maine law, spouses and domestic partners take priority over parents.
[NOTE: If John were not terminally ill, nor in a PVS, Amy would not have the power under Maine law to withdraw life-sustaining treatment. For a non-terminal and non-PVS patient, a surrogate may not deny surgery, procedures or other interventions that are lifesaving and medically necessary, i.e. which provide the most patient-appropriate intervention or procedure that can be safely and effectively given.]
A surrogate must make decisions based on the patient’s prior expressed wishes, if known. (This is meant to respect the patient’s autonomy). John’s comments at the funeral would be pertinent to this. If not known, the surrogate may decide based on the patient’s best interests and in good faith. (This is to promote beneficence). In determining the patient’s best interests, the surrogate must consider the patient’s values. In this case, Amy may decide that given John’s personal values he would prefer to die than be kept alive indefinitely in a PVS. The fact that John was raised Catholic is not relevant. However, if, as an adult, John was a practicing Catholic who held to the Vatican’s beliefs about the value of human lives in a PVS, and the definition of nutrition and hydration as “care owed to all persons”, not “medical treatment”, he may well have wanted to be kept alive.
Since Amy takes precedence over John’s parents, the health care provider can just comply with Amy’s wishes. However, if the health care team has serious doubts as to whether Amy is acting in good faith, a patient care team meeting or an ethics consult with both Amy and John’s parents is warranted.
The HCP may also want to have a family meeting or ethics consult to help Amy and her in-laws communicate more effectively, and possibly bring healing and resolution to the family.
Case 2 Antihypertensives and temporary impotence
The main ethical issue here is informed consent. The ethical values promoted by informed consent are respect for patient autonomy (his right to choose for herself, based on his own values and conception of the good life) and beneficence (doing good for the patient).
Informed consent requires informing the patient of his diagnosis, the nature and purpose of a proposed treatment or procedure, the risks and benefits, alternatives to the proposed treatment, and risks and benefits of those alternatives, as well as the risks and benefits of not undergoing any treatment or procedure.
Informed consent also requires that the patient has decision-making capacity and that his decision is voluntary (not coerced, for example, by a family member).
The doctor is concerned that telling the patient about a reversible and unlikely side effect of a proposed treatment may cause it to occur. Her desire to spare the patient a possible bad health outcome for his own good by withholding information is paternalistic. Sometimes, as in emergency care, paternalism in medicine is justified. Is it justified in this case?
An important question for us is whether the doctor’s concern about possible psychosomatic effects is warranted by available evidence. Even if it is, we can ask whether it would be a graver harm to the patient to experience impotence without knowing the cause.
Because she assumes the patient is poor, the doctor does not plan to tell him about a more expensive drug with fewer side effects. She has no certain knowledge of the patient’s economic status. And even if she did, it is not advisable for a physician to decide unilaterally whether a drug is affordable for a patient. Uninsured and poor patients have a right to know of all available treatments. It is for them to determine whether the treatment’s cost is prohibitive, based on their own health related and personal values.
An important question this cases raises is when an HCP can consider the duty to inform discharged. Must she tell her patient about every possible side effect, regardless of how rare? Perhaps not, but it does seem that the impotency side effect is important in the doctor’s own thinking about this patient’s care, and, as such, transparency requires that she share this with him.
Informed consent is often thought of as a legal hurdle, an outside, bureaucratic imposition on the HCP-patient relationship. But ideally, informed consent is an ongoing process, a part of joint decision-making between HCP and patient. Think about how this patient’s care may progress in the future.
Another ethical issue this case raises regards the fairness of our health care system. What are the doctor’s duties if this patient does experience impotence, but cannot afford a more expensive medication?
3. Maria Maros/ Mr. Klein, N.P.
This case raises questions about the HCP-patient relationship.
Why wouldn’t Mr. Klein answer Mrs. Maros’s question truthfully? He may believe that doing so will create anxiety and worry. That is, he may believe beneficence (doing good for the patient) and nonmaleficence (do no harm) require it.
If Mr. Klein decides to evade Mrs. Maros’ question, or to tell her “everything is fine”, he is acting paternalistically, that is, withholding information “for her own good.”
There are two ethical problems with this:
1. It fails to respect the patient’s autonomy, her right to know about her own health status so that she can make informed decisions
2. It is not likely beneficent. That is, the patient is likely experience even more worry and concern if she feels she is being brushed off, not to mention frustration.
Perhaps nurse Klein feels that reading the EKG is beyond his scope of practice. Often nurse practitioners see relatively few of such tests, and when they do, they rely on summations rather than the raw data. It can be sensible to wait for expert reading of test results. However, he may worry that appearing to lack knowledge will shake his patient’s trust in his medical authority.
In fact, admission of uncertainty on the part of HCPs does not diminish but actually enhances trust of patients in health care providers. In this case, nurse Klein should not overstate what he knows (“you have a very bad heart problem”, for example, would not be wise comment), but should tell Mrs. Maros that irregularities on her lab work suggest a need for follow up. Nurse Klein should not feel pressured to make a diagnosis without complete information.
Perhaps Nurse Klein worries that talking frankly with Mrs. Maros will overstep boundaries between this patient and her “official” PCP. The ethical issue for him may be professional courtesy.
However, since Mrs. Maros is a new patient, this is unlikely. Even if Mrs. Maros had a longstanding relationship with nurse Klein’s colleague, professional courtesy in this case should take a backseat to good patient care and honest communication.
What about Mrs. Maros’s enjoyment of medical dramas? Studies suggest such programs can create unrealistic lay expectations of HCPs, as well as overconfidence among patients of the accuracy of self-diagnosis. What are some better and worse ways of handling such expectations?
4. The social worker and the nurse.
This case raises issues of professionalism, especially dual relationships and conflict of interest, for both nurse and social worker.
Social workers should avoid conflicts of interest that interfere with the exercise of professional discretion and impartial judgment. Here the conflict is between viewing Amanda as a solver of Tyson’s personal problem and as a client.
In addition, Amanda may feel vulnerable, given the traumatic recent health event and death of her loved one. She may feel she “owes it” to Tyson to help him out. Thus, mentioning his own desire for a baby is likely to be coercive. Social workers should reveal personal information cautiously, and only when necessary to establish or build rapport with a client. In this case, Tyson’s self-disclosure would be for his own benefit only. While all dual relationships (i.e. relating to a client in other ways, as in friendship) are not prohibited, this one has clear potential for exploitation and harm.
Moreover, given that the nurse’s own actions were ethically problematic (see below) Tyson’s request for her to “play matchmaker” for him is an ethical violation.
Nurse/patient relationships are based on preventing illness, alleviating suffering, and protecting, promoting, and restoring patients’ health. Amanda’s scope of practice does not include acting as an adoption agency for her patients. At the very least, this scenario presents the appearance of a conflict of interest, and it could injure the patient emotionally by forcing her into a decision/course of action with which she is not entirely in agreement. Perhaps the patient feels pressured (even if no pressure is perceived or intended by the RN) to allow the baby to be adopted. Or perhaps the potential adoptive family has not been vetted by a responsible agency.
There may also be a confidentiality issue as well, depending on whether a release of information was signed to allow Amanda to talk to her friend (or Tyson) about her patient at all. Another ethical issue is the birth father’s rights.
The best course of action would be to help the mother understand what her options are. This is likely best accomplished by way of a social work consult, but could be managed by a well informed nurse. Either professional would then need to help the patient get connected with the proper resource for whichever option she chooses.
5. Tom Tortelani, his son Hank, vent withdrawal
Allowing patients to make their own health care decisions is supported by the ethical values of respect for patient autonomy and beneficence. However, decisional capacity requires the certain cognitive abilities, such as the ability to understand information, to communicate, to reason and deliberate about choices, and consistency. Sedation is used for vent dependent patients in the ICU to reduce anxiety, encourage sleep and to increase tolerance to tracheal tubes and the ventilator. Depending on how heavily sedated Tom is, he may not have decisional capacity.
The health care team would want to be sure that Tom has decision-making capacity prior to acceding to his wishes. Minimizing sedation, even if it causes some discomfort, may be required. The team would also want to be sure that Tom has all of the information he needs. Finally, it is important that his decision is stable, so more than one talk is a good idea
Decisional capacity is a clinical diagnosis. Unlike the global legal designation of “incompetence”, decisional capacity is decision specific and time specific. That is, even if it is determined that Tom cannot make his own decision about withdrawal of life-sustaining treatment, he may be able to make other health care decisions, and he may regain capacity at some future point.
If Tom cannot make his own decisions, and he does not have an advance directive specifying an agent, his son is the logical choice to serve as his legal representative (surrogate). In the state of Maine, surrogates may decide to withdraw life-sustaining treatment if the patient is in a terminal condition or PVS.
A surrogate must make decisions based on the patient’s prior expressed wishes, if known. (This is meant to respect the patient’s autonomy). If not known, the surrogate may decide based on the patient’s best interests and in good faith. (This is to promote beneficence). In determining the patient’s best interests, the surrogate must consider the patient’s values.
The health care team needs to be careful not to assume that Hank is an unsuitable surrogate just because he is an alcoholic. Helping Hank to be the best surrogate decision maker he can be for his father may require supporting him in creative ways, as well as further meetings or an ethics consult. The fact that Tom cannot stay in Maine while vent dependent is a unique feature of our rural setting and its impact on the choices at hand should be discussed.
If Hank refuses to allow extubation, an ethics consult may help staff to process moral distress over providing what they view as nonbeneficial interventions. These can help staff to understand the ethical and legal need for consensus, rather than unilateral decisions on the part of medical staff to withdraw life-sustaining treatment against the patient’s legal representative’s wishes.
6. Noah, 13 year old HIV positive boy
Because Noah is a minor, the health care team’s relationship to him is mediated through his parents, who are legally entitled to direct his care.
Noah’s parents are right to be worried about the effects of disclosure of Noah’s positive HIV status. HIV infection remains a stigmatizing diagnosis. If Noah acquired HIV from one of his parents, they may also be motivated by denial or shame, or a desire not to “rock the boat” in the family.
However, Noah’s parents should be made aware of the benefits of telling Noah about his diagnosis. Noah is isolated from social support, and, should he be sexually active, risks spreading the disease to sexual partners. Disclosure to friends and family members can provide increased support for Noah and his family. Studies have indicated that HIV status awareness can have positive effects on both the children’s self esteem and can reduce parental depression. (beneficence)
Noah’s parents should consider potential harms to Noah of nondisclosure. Should one of them die, the opportunity is lost for Noah to discuss his illness with that parent. Noah may inadvertently learn of the nature of his illness in an offhand, hurtful, or nonsupportive manner. He may feel the need to keep his knowledge secret. He may distrust his parents. As he becomes symptomatic, Noah may develop inappropriate and hurtful fantasies about his own illness if he fails to understand it. (nonmaleficence)
As an adolescent, Noah is old enough to make meaningful decisions about his health care. He should be allowed, for example, to make decisions about his treatment and participation in clinical treatment trials. (respect for patient autonomy, right to know)
It’s clear that Noah should be told. Medical staff caring for Noah should make efforts to convince Noah’s parents to disclose his diagnosis in a supportive manner.
If they refuse, assuming Noah has the right to know, whose duty is it to disclose?
Does the fact that Noah is a short term hospital patient relieve hospital staff of this duty? Do they have a professional obligation to Noah’s regular PCP not to “dump this in his lap” when he gets home? (duties to Noah would seem to trump any professional courtesy to Noah’s PCP). A duty to potential sex partners?
Disclosure of HIV infection status to children and adolescents should take into consideration their age, psychosocial maturity, the complexity of family dynamics, and the clinical context. If hospital staff feel that Noah’s stay is too short for them to gain this knowledge, or to plan a supportive, as opposed to rushed, disclosure, then the question becomes somewhat more difficult, and requires balancing the gains of a stressful disclosure against the cost of Noah’s ignorance.
