By Jeanie Davis
What will you do if a patient refuses prescribed treatment? If the patient does not follow doctor’s orders, how will you advise them? If adult children will not let you tell the patient his diagnosis, what will you do?
These are common situations in healthcare. Each raises an ethical dilemma for hospital case managers.
“Clinicians want to do good, but what about the patient’s right of self-determination?” asks Eileen Zenker, LCSW, CCM, regional clinical supervisor at SeniorBridge in New York City. “We as clinicians think we’re not making bad decisions. How can anyone not listen to us when we know what’s best? And yet we have to keep the principles of bioethics in mind at all times. Those principles make our decisions more complicated.”
Look for Hidden Issues
Zenker offers a reminder of the four basic principles in bioethics:
- Autonomy: The patient’s right to choose is the basis for informed consent and decision-making.
- Nonmaleficence: Do no harm; harm should not be disproportionate to the benefit.
- Beneficence: Balance the risks and benefits of treatment against risks and costs.
- Justice: Be fair to everyone (access to care).
“Healthcare is such a complicated landscape. Things move quickly, so we don’t always get the whole story,” says Zenker. “That requires an in-depth discussion, and there’s rarely much time. We don’t want to make the decision for the individual, but we do want to understand what’s going on.”
A patient may be noncompliant, but the reason may be hidden. “In today’s world, there is so much to worry about, which can lead to noncompliance,” she explains. “A patient may be afraid to tell his boss he’s sick because he’s concerned he will lose his job.”
For the same reason, the patient may not want to file with his health insurance company, which results in no coverage for the medications.
Finances often are an issue for patients, explains Zenker. A patient may be taking care of a seriously ill family member, and using the family’s money to cover that person’s medication instead of her own. She may frequently end up in the emergency department because her condition is uncontrolled.
“Instead of labeling people, let’s try to understand them,” says Zenker. “Ask yourself, ‘What’s going on here? How can I help this person? How can I get help to his wife or family member? How can I show the team the big picture about this person?’”
She adds: “We must look at the larger picture, beyond the fact that they’re taking up a bed in emergency. Try to understand their rights but look at the bioethics principles that interplay.”
When Values Compete
When studying competing values, the patient’s right to choose and doing no harm can collide, Zenker says. “The question becomes, how can we balance that out? It’s in no one’s best interest if the patient is noncompliant, but what would make them do that?”
If a patient refuses a procedure, why? If the patient leaves the hospital earlier than recommended, what should be done? Can you understand their actions?
For example, a patient refuses dialysis. The case manager takes time for a heartfelt discussion, asking why the patient refuses. “The patient is depressed, that’s why,” says Zenker. “We can treat the depression and that can lead to dialysis treatment. We must understand the full scope.”
She adds: “We understand the risks and benefits of our decisions. I eat potato chips knowing they’re bad for me. But it’s harder with patients when we want to respect the patient’s autonomy, yet do the right thing and not harm anybody.”
Zenker also advocates for escalating issues to the hospital’s medical ethics team, when warranted. “When there are competing values, when someone is making a decision that is not in his or her best interests, these can be escalated to an ethical consult. We need a discussion to understand this person. A medical ethics team can be effective in helping resolve these conflicts.”
The patient’s autonomy becomes a delicate issue when his or her decision-making capacity starts to decline. Likewise, if the patient cannot understand the financial issues, he or she may need a financial proxy.
“We must recognize each individual’s capacity to make their own decisions,” Zenker says. “We must understand who that person is. The biggest issue is, what constitutes what’s good for the patient? Who decides that?”
Case managers are key in escalating these issues, she adds. “Very often, the case manager and social worker will be able to see the situation holistically, which is why their expertise is so important. They can determine whether it’s necessary to bring in a psychiatrist to evaluate the patient’s capacity.”
End-of-life care often triggers these difficult discussions regarding whether to continue treatment, Zenker says. “An interdisciplinary team can discuss that, taking into account the patient’s values, judgment, and capacity,” she explains. “They can analyze and understand what’s happening, and help resolve issues.”
Creating Rapport Is Key
In resolving these ethical issues, the case manager must have be self-aware, Zenker says. “You must be able to establish rapport to get information from the patient so they’ll talk to you. People are afraid to share information these days. They worry about what it means.”
Clinicians believe they know best, but even they admit they do not always know, she adds. “We have to be aware of ourselves because of how quickly patients are moving through the system. The ability to develop rapport with patients and family members is so important to understand.”
The case manager can trigger the discussions. “Case managers have to be the patient’s advocate; it’s what we do so well. We’re the ones who see these patients.”
Even with “drive-thru patients,” the case manager is key in identifying issues that complicate patient treatment. “A good case manager helps everyone. They may be the one person who realizes this patient doesn’t have sufficient mental capacity and may need a court-appointed proxy.”
Cultural awareness often is a concern. “If adult children don’t approve of us speaking with their father, we must consider the cultural sensitivity, and respect their values,” says Zenker. “But we must also be respectful of the patient and speak up for patient autonomy. We must give the patient the opportunity to understand their own condition and their own treatment. That is their right, and the children must be able to understand that.”
Handling these delicate discussions with patients and family members is not always easy, Zenker admits. “The case manager must have an awareness of self and of other cultures to make that connection with patients.”