‘Decision-makers of Last Resort’ Pose Unique Ethical Challenges
Court-appointed or governmental guardians may need to make treatment decisions if surrogates disagree, or if no surrogate is available. Some ethical considerations include the following:
- Courts often assume that all conceivable medical treatments must be delivered.
- There always is an obligation to act in the patient’s best interest.
- It is never appropriate to subject a patient to a treatment that can only harm him or her.
Surrogates sometimes vehemently disagree, despite all attempts to resolve the conflict. In other cases, there’s simply no one to speak on the patient’s behalf.
Either way, the clinical team is forced to turn to the courts or government if an important medical decision must be made.
“A problem that often occurs when there is court-appointed guardian involvement is that there is an assumption that all conceivable medical treatments be delivered,” says Kenneth Covinsky, MD, MPH, a professor of medicine at the University of California, San Francisco.
Courts sometimes take this position even if the burdens are great and the chance of benefit is minimal. “There is always an obligation to act in the patient’s best interest,” Covinsky says. “It is never appropriate to subject a patient to a treatment that can only harm them and not benefit them.”
Some patients aren’t able to make their own medical decisions and don’t have a family member who can make decisions for them. “In my clinical work, this is the most common reason we go to the courts,” says Andrew B. Cohen, MD, PhD, an assistant professor of internal medicine at Yale School of Medicine in New Haven, CT.
Often, these are patients with undiagnosed cognitive impairments. “They have been living in the community and then have an acute medical issue, so they come to the hospital,” says Cohen. Healthcare providers realize the person can’t make decisions for him- or herself, but have no idea who to turn to.
At this point, it becomes necessary to petition the court to appoint a guardian or conservator as a surrogate decision-maker. This process can take several weeks. “There can be uncertainty among the clinical team about what to do if decisions have to be made in the meantime,” says Cohen.
In Ontario, Canada, the Treatment Decisions Unit of the Office of the Public Guardian and Trustee (OPGT) is at the bottom of the hierarchy of decision-makers.
“If no other surrogate decision-maker is available, they will be the decision-makers of last resort,” says Bob Parke, BA, BSW, MSW, MHSc (Bioethics), bioethicist at Humber River Hospital in Toronto, Ontario.
Parke frequently works with OPGT to seek consent for treatment that is needed but not emergent. “When we approach them, it is the same as approaching any other surrogate decision-maker,” he explains.
The healthcare professional must explain the benefits and the risks of the proposed treatment. The OPGT either will consent to the treatment or deny consent. Part of the process includes determining whether the patient has any values that might affect the decision.
“One of the challenges of working with the PG&T is that they do not like to make DNR [do not resuscitate] decisions. They like to make present-oriented decisions — for example, surgery that is required,” says Parke.
Parke has found that OPGT is more likely to make a DNR decision if it is put within the context of a palliative care plan. “On some occasions, they will want to see the patient. Generally speaking, this does not take too much time,” says Parke.
The following are three scenarios that necessitate getting the courts involved in medical decision-making:
- A decision must be made as to whether the hospital can discontinue treatment that providers believe is futile.
In this scenario, going to court is “really a last resort,” says Carl H. Coleman, JD, a professor of law at Seton Hall Law School in Newark, NJ. “I don’t think anyone, including the courts, thinks that they are best suited to resolve these issues.”
Ethicists can make a last-ditch effort to defuse seemingly intractable conflicts before the courts step in. “I think a lot of these so-called futility cases are about communication and understanding what’s really going on,” says Coleman. “People may have misconceptions about what is possible medically.”
If mediation is unsuccessful, the ethicist still has a role to play once the courts become involved. “The ethicist should make sure any information that is relevant to the patient’s best interest is before the court,” says Coleman.
The court will assess the evidence and make a determination. Procedures for this vary depending on the state. “There aren’t a lot of cases that have made their way to a judgment to a court, so how a court would make a judgment is still unsettled in a lot of states,” notes Coleman. Texas law provides for a process where the hospital is required to provide an opportunity for a patient to be transferred to another facility, if the hospital is refusing to provide requested care.
“In that framework, you wouldn’t have a court making a judgment as to whether the judgment of medical futility is correct. It would be more whether they are following the procedural requirements,” says Coleman. In states that do not have legislation establishing a procedural framework, the courts may have to decide whether treatment can be stopped that providers believe is futile. “This is an issue that’s getting a lot of attention,” says Coleman. “More states may consider enacting legislation similar to what Texas has done.”
Not surprisingly, legislators are wary of taking a stand on this controversial issue. “When people were not allowed to refuse treatment, that affected an enormous amount of people, and led to a groundswell of public support for legislative changes,” says Coleman.
This is the reverse issue — where treatment is being provided, but healthcare providers don’t think it’s a benefit. “Healthcare providers who refuse to provide futile treatment are unlikely to garner as much public support,” says Coleman.
- A patient has no surrogate, and a decision must be made.
Parke recently was involved in the case of Hanna, a woman of European origin who had no family in North America, but close relationships with colleagues at work. “When she did not show up for work, friends sought help and found that she was collapsed at home,” says Parke. She was admitted to the hospital without decision-making capacity, and unrepresented. Urgent surgery was required, but this did not meet the legal test of an “emergency.” “The surgeon wanted to proceed in a timely way and wanted consent to proceed,” says Parke. “Nursing staff facilitated the consultation with myself as the bioethicist.”
Parke met with Hanna’s friends, who assured him that she would most likely consent to surgery as it was the best chance for recovery and quality of life. “Their perspective helped us to assert that as a capable and ‘reasonable’ patient, she would consent to surgery,” says Parke. The discussion was documented in the patient’s health record and available for the surgeon.
Since consent was required to proceed with surgery, Parke then connected the surgeon with the OPGT. Within a few minutes, consent was granted, allowing the team to move forward with surgery.
The entire consultation process was completed in a few hours. “In this particular scenario, the combination of treatment and surgery brought Hanna back to her previous capable self, surrounded by friends and pleased to be recovering,” says Parke.
- A patient’s equally weighted decision-makers cannot agree on a treatment plan.
If a patient named two people who disagree as power of attorney, the OPGT makes the decision — unless the two decision-makers can find a way to agree. “Almost universally, the surrogates find a compromise when they hear that the government will make decisions on their behalf,” Parke reports.
An overwhelmed family caregiver wanted to put her mother in a nursing home. Her siblings — equally weighted decision-makers — disagreed. “After much deliberation and no consensus being arrived at, I informed the patient’s children that I would have to turn to the government to make the decision,” says Parke.
The three siblings asked for some time together. Shortly afterward, they came up with a compromise: Their mother would go back to the care of the daughter, with the other siblings helping out. If the arrangement didn’t work out, admission to a nursing home would be arranged.
“After another attempt at home, their mother was admitted to a nursing home,” says Parke. “The caregiving burden was recognized as too great to be managed at home.”
- Andrew B. Cohen, MD, PhD, Assistant Professor, Yale School of Medicine, New Haven. Email: [email protected].
- Carl H. Coleman, JD, Professor of Law, Seton Hall Law School, Newark, NJ. Phone: (201) 204-9512. Email: [email protected].
- Kenneth Covinsky, MD, MPH, Professor, School of Medicine, University of California, San Francisco. Phone: (415) 221-4810 ext. 4363. Email: [email protected].
- Bob Parke, BA, BSW, MSW, MHSc (Bioethics), Bioethicist, Humber River Hospital, Toronto, Ontario. Phone: (416) 242-1000 ext. 82808. Email: [email protected].
Surrogates sometimes vehemently disagree, despite all attempts to resolve the conflict. In other cases, there’s simply no one to speak on the patient’s behalf. Either way, the clinical team is forced to turn to the courts or government if an important medical decision must be made.
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