Posts Tagged ‘best interests’

Management of Risk in Guardianship and Powers of Attorney

DECEMBER 14, 2015 VOLUME 22 NUMBER 46

Imagine: you have just been named as guardian for your aging father. You are responsible for his medical care and decisions, his comfort and his placement. You were appointed, in part, because of your concern about his safety at home — you are thinking perhaps he needs to be moved to a safer location. Your job is to eliminate — or at least dramatically reduce — the risk that he might fall in his home, that he might wander, that he might not take his medications. Right?

Not exactly.

If you were grappling with this common-place scenario several decades ago, the answer might have been clear. Legal scholars and advisers generally agreed that the primary standard governing guardians should be to protect the “best interests” of their wards. That usually meant protection from risk first, and addressing emotional and psychic needs after physical protection could be afforded.

Let’s spin the hypothetical back in time a few years. You are talking with your still-capable father about his wishes. Presciently, you ask him this question: “So, Dad, if you were at risk of falling here in your home and the only way to be sure you were safe would be to move into a nursing home or assisted living facility, would you want to go?” What do you suppose he would have said?

He probably would have asked for more information. How much risk? How serious of an injury? What might the facility look like? What other limitations might he have to endure?

We manage risk in our daily lives all the time. We make decisions from brushing our teeth to crossing the street outside a crosswalk to skydiving or motorcycle riding — and we weigh the likelihood of injury from each action constantly and almost unconsciously. When put in charge of someone else’s care, however, it human nature to try to eliminate risk altogether. That is not the way your father managed his life before you were appointed as his guardian, and it is not the way you should make decisions for him now.

Over the last several decades, legal writers have developed a concept of “substituted judgment” to guide decision-making by guardians. The doctrine is misleadingly named — though it may sound like you, as guardian, are to substitute your judgment for your father’s, it means exactly the opposite. When making decisions for your father, you should start with a good-faith attempt to figure out what your father would want and substitute that decision for the one you would otherwise make on his behalf.

Does that mean you can never place your father in a more-controlled facility? Of course not. But it does mean that you need to make an open-eyed analysis of his likely wishes, and try to emulate his approach to the decision if he were making it for himself. Are there less-restrictive ways to reduce the risk to a suitable level (but not to zero)? What other negative effects might flow from the proposed decision? What would your father do?

Is this principle universally applied? Perhaps not, but it is clearly the law in Arizona and likely the rule in most other U.S. states. It is definitely the modern trend in legal thinking.

Does this concept only apply to guardianships? No — it applies to health care powers of attorney, financial powers of attorney, conservatorships (of the estate), and trust administration. In fact, it applies to even informal, unsanctioned decision-making, like when you consent to medical treatment as next of kin.

Do these rules apply only to big decisions? No, they apply to even (perhaps especially) the small decisions — visiting schedules, travel, caretaker changes and everything else.

Is it important that our hypothetical talks about your father? What about your mother? Your brother, your daughter, or anyone else? The same thinking applies to any substitute decision-maker for an adult — though it is obviously much, much harder to apply in the case of a person who never had the opportunity to develop a risk profile of their own. In other words, decision-making for your son who was born with a profound disability does not require you to try to figure out what he would have decided if he had been competent for at least a brief period after his eighteenth birthday — though it wouldn’t hurt to try to think through what a similarly-situated person might reasonably decide.

Does this mean you have to live with the real possibility of a disastrous outcome? No, it doesn’t mean that you must engage in risky behavior. It only means that you must realistically weigh the possibility of a bad result in protecting your father. Might he slip away from the care home, get lost in the desert and have a terrible outcome? Yes — but it’s not too likely, and probably doesn’t justify locking him into his room at the facility.

In other words, you might try applying a special variant of the “golden rule.” What decision would you want him to make for you, if the roles were reversed? Might he have come to the same conclusion that you are now reaching?

Good luck handling your job as substitute decision-maker. It can be emotionally draining, and physically tiring. You will find it much more satisfying, we predict, if you will think about management, rather than elimination, of risk.

How to Make Health Care Decisions for Someone Else

JULY 28, 2014 VOLUME 21 NUMBER 27

Maybe you’ve been named guardian (of the person) for a family member, colleague, or friend. Maybe you’ve been listed in a health care power of attorney. Maybe you’re a family member with authority to make health care decisions (Arizona, like a number of other states, permits family members or others to make most health care decisions in at least some cases). How you got there is not the point, at least not for today. Today’s question: how do you go about making decisions for someone else when you have been given the power — and responsibility — to do so?

For centuries the American common law (and its English predecessor) focused on the “best interest” of someone who was no longer able to make their own decisions. It was not until relatively recently that the concept of “substituted judgment” began to seep into legal discussions. Today the latter notion drives health care decision-making in Arizona. That is also true in most (perhaps all) of the other states in the U.S. It may also be true in other countries, but that is beyond our scope today. In Arizona, at least, it is clear: “substituted judgment” is the legal standard for health care decisions.

But what does that mean? One early description suggested that a person making decisions for someone else should try “to reach the decision that the incapacitated person would make if he or she were able to choose.” That means that the decision-maker should try to substitute the patient’s decision for his or her own, not the other way around. In other words, the guardian/agent/surrogate should first try to figure out what the patient/principal would want in the circumstances.

Let’s simplify some of the language, just to keep things from bogging down in legalisms. Let’s use “principal” for the person signing a power of attorney, or subject to a guardianship, or (however they got there) presently incapable of making decisions. The person making the decision, signing the hospital’s forms, choosing a facility, or whatever — we’ll call him or her the “surrogate”.

So now you’re the surrogate, and you’re trying to figure out what you should consider when making your decisions. Here’s a list (probably not comprehensive — look at the comments to see if anyone has suggested other good ideas) of things you might look to:

  • Did the principal sign any documents? A living will, for instance, might give some insight into the principal’s wishes. There are plenty of other documents that might be useful, though — from worksheets filled out at a seminar on advance directives to letters to family members to descriptions of other patient’s circumstances.
  • Did you have any conversations with your principal? Maybe you talked about other patients in the news, and how your principal felt about their stories. Be careful here — we remember one client who adamantly said she didn’t want to “go through what Terri Schiavo did.” It wasn’t until we followed up with the client that we figured out that she meant that she thought it was terrible that the legal system allowed Ms. Schiavo to die. We had assumed that she meant she wouldn’t have wanted to be kept alive, but that was the exact opposite of her meaning.
  • Did anyone else have conversations with your principal? Ask family, friends, co-workers and others who might have discussed health care issues with the principal while they were still capable of forming a decision.
  • Ask your principal. Is he or she able to talk at all? Then ask for direction. That doesn’t mean you have to follow whatever a now-demented patient says he or she wants — the principal might simply respond affirmatively to almost every question, making the answer depend on how you ask. But just because you’ve been given responsibility for the decision it does not follow that your principal’s opinion is no longer relevant.
  • Consider your principal’s life history. Was he or she particularly religious, or irreligious? Do you know what family members would prefer (and whether your principal would be more likely to agree with or oppose the family)? Did other family members or acquaintances go through similar circumstances, and is your principal’s response helpful to you while making this decision?
  • Talk to the medical team. What seems like a major decision might not seem so significant after you’ve discussed the risks and burdens associated with a given procedure (or decision to forego a procedure).

Arizona law is clear on what happens next. If you can’t figure out what your principal would want, then you move from applying “substituted judgment” principles to determining the “best interests” of your principal. But that doesn’t necessarily mean that you have to approve treatment.

  • Weigh the “burdens” of treatment against the benefits. Is a proposed operation painful, dangerous, or uncertain? Or might it alleviate pain, make your principal more comfortable, or increase the odds of recovery?
  • Strive for consensus. You are supposed to be figuring out what your principal would want, but the input of family, friends and the medical community is worth considering in an attempt to avoid infighting, undercutting and acrimony. Your principal’s care might not be best-served by having a difficult situation made more tense.
  • As a last resort, consider submitting difficult choices to the courts for resolution. That gives everyone a chance to air their positions in a formal setting, and focuses the questions on the principal’s wishes — and care. But it is time-consuming and expensive, and should not be invoked unless there is real difficulty in making the correct decision.

It is a challenge to make health care decisions for someone else. It is also a terrific gift to the principal to accept the responsibility and discharge it carefully and well. Another day we’ll write about how you can make that job easier when you’re the principal rather than the surrogate. In the meantime, take the surrogate’s job seriously, and do your best to substitute your principal’s decisions for those you might make for yourself.

 

Court Ruling on Special Needs Trust Does Not Resolve Medicaid Eligibility

APRIL 22, 2013 VOLUME 20 NUMBER 16
This week we bring you a story that is simultaneously simple yet profound. It involves an arcane corner of law — the intersection of trust administration and Medicaid eligibility. Its simplicity is obvious: it results in a court determination that Medicaid eligibility is determined by the state Medicaid agency and not (at least not in the first instance) by courts. Its profundity is a little less obvious.

“A.N.” is a seventeen-year-old girl, living in New Jersey. She suffers from quadriplegic cerebral palsy, and she requires full-time total care. She gets most of that care from her mother and her maternal grandmother. She is the beneficiary of a special needs trust, established in 2000 with the proceeds from a personal injury lawsuit. Her father is employed, and she is therefore covered under his employer’s health insurance plan. Although the trust was intended to allow her to qualify for New Jersey’s Medicaid plan, she has never applied and has not yet received any coverage under Medicaid.

Her mother owned the home where A.N. lives, but she got behind in making payments on the mortgage. At some point the house was about to be foreclosed, and both parents asked the trustee of the special needs trust to begin making mortgage payments. The trustee did, but asked that the home simply be transferred into the trust’s name — there was little equity, and it appeared to be in A.N.’s best interests to make sure that foreclosure would not be a problem in the future.

It also seemed important to get specific authorization to pay A.N.’s mother and grandmother for taking care of her. Normally, that is the responsibility of a parent — but A.N. received her personal injury settlement (in part) precisely because her care is much more extensive than the care required for other minor children, and her mother is unable to work outside the home to support her — and could never make enough income to cover the cost of the care she is already providing.

Thus far the story is familiar. Though we know nothing much about New Jersey cases, we have heard versions of this story many times. Parents faced with extraordinary caretaking requirements for profoundly injured children, large personal injury settlements that could be used to help cover the high costs of care, houses that lost value during the recent downturn in the real estate market, and special needs trusts intended to maintain eligibility for Medicaid and Supplemental Security Income benefits are all too common in our practice. The only thing unusual in A.N.’s story is that Medicaid is not currently in place — but even that does not change the fundamental questions raised by her case.

This is the dilemma faced by so many trustees and families: should A.N.’s trust purchase her mother’s home, and reduce the cost of living there (because there would not be a mortgage for the mother to pay)? If so, should A.N.’s mother be required to pay rent, either for herself, or for A.N., or for any other children or adults who live in the house? And should A.N.’s mother and grandmother be paid to care for her, even though the law imposes a general responsibility on parents to provide care for their minor children? Finally, what effect would any of those decisions have on A.N.’s eligibility for Medicaid, and who gets to decide that effect?

Because the questions are difficult and the dollar amounts significant, the trustee of A.N.’s trust properly asked the court to make the final decision. The court, after all, is responsible for ultimate oversight of trusts, and this trust was already receiving the court’s attention (it had been set up by court order, after all). The court, in turn, appointed an attorney to represent A.N.’s interest; she argued that buying the house, foregoing rent and paying A.N.’s mother were all in A.N.’s best interests. After hearing the evidence and arguments, the court agreed.

The trustee had given notice of the pending court proceeding to the state Medicaid agency. While the court was considering the final language of its order approving the transactions, the Medicaid agency weighed in with its own comment. In effect, it told the court: “go ahead and decide that it’s in the child’s best interests if you like. But don’t think you can make us later agree that there will be no effect on Medicaid eligibility.”

The Medicaid agency pointed to a section of federal law (arguably not applicable to A.N.’s trust or her prospective future eligibility) that requires that trust distributions be for the “sole benefit” of the beneficiary. In this case, said New Jersey’s Medicaid agency, the court might well determine that the distributions are in A.N.’s best interests, but they benefit A.N.’s mother and grandmother, too — and they might run afoul of the “sole benefit” requirement. But we don’t have to decide that right now, said the Medicaid agency. We’ll wait until someone applies for Medicaid and let you know what we think then.

Not wanting to leave the issue dangling, the court specifically ordered that the proposed payments were for A.N.’s sole benefit. Furthermore, ruled the court, the Medicaid agency could not later object to the payments if anyone made an application for coverage for A.N. The Medicaid agency, not wanting to be bound by the court’s order, formally appeared in the case for the first time just to appeal that result.

The Appellate Division of the New Jersey Superior Court (the intermediate appellate level in New Jersey) agreed with Medicaid. Fine for the trial court to give the trustee directions, said the appellate judges. Fine to decide the payments are in A.N.’s best interests. But you don’t get to decide Medicaid eligibility questions. The agency makes those determinations in the first instance, and if someone appeals, then and only then can the courts get involved. In the Matter of A.N., April 16, 2013.

So what does that mean for Arizonans, for trustees of special needs trusts and for families? A number of lessons can be gleaned from the holding:

  • State Medicaid agencies are not necessarily bound by court interpretations of trust rules, even if they have advance notice of the pending court resolution. The Medicaid meaning of a phrase like “sole benefit” — and, for that matter, its applicability — is first a question for the agency.
  • What is best for a trust beneficiary might not also be the most effective for Medicaid purposes. It’s hard to see how allowing A.N.’s mother to lose her house could ever be in A.N.’s best interests — or even how it could be tolerable. But it doesn’t follow that Medicaid eligibility would be easy to resolve.
  • Medicaid eligibility is typically more restrictive than private insurance. It’s a very good thing for A.N. that her father continues to be covered by his employer’s policy. Time and again we see parents who are locked in to a current job situation precisely because of insurance coverage like A.N.’s father’s.
  • Though unspoken in the New Jersey appellate decision, the effect of the Affordable Care Act (“Obamacare” to both supporters and opponents) will be profound in some special needs trust cases. If A.N.’s trust can purchase insurance equivalent to that provided through her father’s employer, the entire family’s options (and the court’s ability to supervise the trust effectively) will be enhanced. We do not yet know whether that possibility will be completely or even partially realized.

Would the same procedural result be reached by Arizona courts in similar facts? We do not know for certain, but it seems likely that it would. But we are confident that the profound questions — about how to balance parental responsibility for food, housing and care with the availability of significant trust assets in similar circumstances — will continue to challenge us in the administration of special needs trusts.

 

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