Who Should Decide When the Patient Can’t? A few Suggestions for the Indiana Legislature
Imagine that you get into a car accident today and you end up in the hospital, unable to make decisions for yourself. Who would make decisions for you? As I’ve written about before, if you haven’t formally assigned a surrogate decision-maker to make decisions for you, current Indiana statute (IC 36-16-1-5) turns it into a committee of your spouse, children, parents, and siblings. A recipe for potential disaster.
This spring, the Indiana legislature may do something about this. A proposed bill (SB193) would do several things, some of which might help. But I’m not sure the bill will pass as written, and I’m hoping it doesn’t for three reasons: the recognized surrogate decision-makers should be lengthened and clarified, the prioritization of surrogate decision-makers should be unambiguous and flexible, and a health care provider responsible for the patient’s care should not be the surrogate of last resort.
To begin, the list of recognized decision-makers requires amendment. Illinois’ statute, for example, also includes adult grandchildren (which the proposed bill does not). Large numbers of individuals requiring a surrogate decision-maker are of advanced age. It’s easy to imagine that such patients have outlived their parents, spouses, children, and siblings (if they had any). An adult grandchild should be recognized as a decision maker.
But even Illinois’ standard is too narrow. Instead, the proposed bill should include the broader language of “adult relative” as used in the statutes of 13 others states. This would recognize the cousins, nieces, and nephews or other relatives who care for a patient. And, as we shall see, listing this category specifically, would keep these individuals from having to demonstrate “special care and concern,” whatever that might mean.
Around half of the states also recognize a “close friend” as a surrogate decision-maker. Some states put additional restrictions on who counts as a “close friend”. Recognizing these decision-makers helps with patients who are estranged from their families but maintain strong social connections. It also recognizes life partners who have never married as decision-makers.
Importantly, SB193 does recognize the possibility of “an adult who has demonstrated . . . special care and concern for the individual [patient]”, but it does not define “special care and concern.” We would be better off with the less ambiguous language of Maryland (a close friend who has maintained regular contact).
Indiana’s current statute makes all interested relatives into a committee responsible for surrogate decision-making. Whether they are estranged or intimate, whether they know the patient’s values and wishes or not, spouses, parents, children, and siblings are legally entitled to equal say in the healthcare decision.
Presumably to address this recipe for conflict, the proposed bill includes the language “in descending order of priority” and then lists guardian of the person, spouse, parent, adult child, adult sibling, superior in a religious order, and then individual with “special care and concern.” Accordingly, the legal guardian of the person’s decision would override the spouse’s. A spouse’s decision would override that of a parent, adult child, or adult sibling. And so on.
This prioritization should be amended to allow more flexibility in determining who should be the decision-maker. Language like they have in West Virginia’s statute (“The attending physician or the advanced nurse practitioner may select a proposed surrogate who is ranked lower in priority if, in his or her judgment, that individual is best qualified”) could be included for cases where a patient is closer to their siblings than their parents. Such an amendment would also be helped by criteria for determining “best qualified”. Again, West Virginia’s statute could provide a valuable model.
Perhaps more importantly, the prioritization identified at the beginning of the proposed bill may be undermined in a later section of the bill (subdivision 5). It states that if there is more than one person identified as a surrogate decision maker who claim decision-making authority, then “a majority of the individuals who have communicated their view” will make the health care decision.
Obviously, this takes us straight back to our current statute. If it requires a majority of individuals identified as possible surrogates, then we’re back to decision by committee.
Decision Maker of Last Resort
Finally, the proposed bill follows a dozen or so other states in identifying one last possible decision-maker: the health care provider. This could be an attending physician in the hospital, the primary care physician, or some other health care provider. It’s not clearly defined.
On the one hand, such ambiguity allows for the physician with direct responsibility for the patient to make the decision. On the other hand, there will be multiple physicians with direct responsibility. And these physicians may not agree.
More importantly, though, putting physicians with responsibility for patient care into the role of surrogate decision-maker puts them into an impossible position. As I’ve discussed before, the health care provider’s role is to make recommendations for the patient (or, in this case, their surrogate) to evaluate in light of the patient’s interests. The surrogate decision-maker should decide if the physician’s recommendation matches with the interests of this particular patient. Making physicians responsible to both make the recommendation and then evaluate the recommendation produces an obvious conflict-of-interest. The physician is asked to evaluate their own recommendations. Or course they think their recommendations are good ones.
Presumably to attenuate this difficulty, the proposed bill requires that the health care provider consult with the “ethics officer” and a second health care provider. But even these consultations do not remove the conflicted role of the health care provider.
Unfortunately, I do not have a clear answer on who should make the decision if there is no legal guardian, no spouse, no parent, no adult child, no sibling, no religious superior, and no person with “special care and concern”. Who will best fill that role (be it a social worker, clinical ethicist, or some other member of the institution responsible for the patient) should be determined in consultation with the Indiana State Medical Association and the Indiana Hospital Association. Hopefully, these organizations can help identify an appropriate surrogate of last resort who has an independent view of the physician’s recommendations and who works within the structure of existing medical practice and the administration of medical institutions.
Abraham Schwab is an associate professor of philosophy and a medical ethicist at IPFW.
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