by Robert M. Gibson, Ph.D., J.D., Rebecca Ferrini, MD, CMD, MPH

Ms. A has no friends and family to speak for her, had advanced dementia and is bedbound. She is unable to speak, but can nod.  Who signs her into your facility? What is her Code Status?

Ms. B has dementia and a conservator, her sister who lives out of state.  Who signs her in? Who manages her money? Who signs consent forms for psychotropic medications?

Mr. X signed himself into the facility a few years ago, but he is declined a lot now. You want to start him on an SSRI but he really cannot understand what you are saying. Who can sign for him?

Did you find these questions easy?  According to an informal poll taken at the CALTCM annual meeting, those who find these questions straightforward are a minority. In fact confusion and misperceptions about surrogate decision making is common.  Many physicians do not understand the laws around decision making and their roles and responsibilities.

What should we do when we have residents with impaired or no decision making capacity in long term care?  Whose job is it to figure out who can decide what on their behalf?  There is an important role for the clinician in determination of capacity to make decision as well as surrogate decision maker and California law (probate code section 1800.3) requires that the “least restrictive alternative” must be employed.

What is the least restrictive decision making option?

The least restrictive decision maker is a resident making their own decisions and is the preferred method if possible.  While there may sometimes be a tendency to turn to the family member who accompanied the resident, or to presume a lack of capacity, capacity is assumed unless a clinical assessment proves otherwise.

How do I assess Decision Making?

The clinical assessment should be targeted to the particular decision to be made and done at the time of the decision, and the starting point should be the presumption that the person has capacity.  Global or static assessments, e.g., stating the resident lacks decision-making capacity on the facesheet, and three months later acting on this with no further assessment would present possible violations of the resident’s rights and autonomy.   Capacity assessment includes elements of UCARE (see reference).

Simply stating the resident” lacks capacity” does not address the most common situation where the resident may have capacity for some decisions, but perhaps not for others.  It also does not address the possibility of variable capacity.  For example, the resident may have capacity early in the day, but as they fatigue, they lose capacity. They may be able to make a decision about something they feel strongly about and had considered prior to their illness (DNR), but not be able to make a decision about the risks and benefits of Prozac.   It is also fairly common that residents enter a facility with impaired decision-making, possibly due to an acute medical event, and they may regain capacity as they recover.  Thus, static assessments again present a risk of violating the resident’s autonomy.

What if the resident needs help with decisions?

The next step in the continuum of least to most restrictive decision making is using a surrogate selected by the resident to help and support the resident in his or her decision making.  As a resident exhibits increasing impairment, the most common and best solution is, voluntary acceptance of formal or informal assistance.  This may be the situation where the resident is accompanied by a family member or friend who can help them understand, ask questions, provide information and ultimately, to help them decide.  In this situation, though the resident asks for help, they remain the decision-maker.

Mrs. Polk arrives at your facility with her son.  She presents with signs of early dementia, but generally intact decision-making ability.  She also asks that her son be present and to help her with her decisions and discussions about care.

A more formal mechanism for voluntary acceptance of assistance would be the use of a Durable Power of Attorney for Health Care (DPAHC) where the resident would have the option of appointing an agent, to take effect either when they lose capacity, or immediately.

Choosing and using a surrogate

As capacity worsens and you move further along the continuum, you may no longer be able to include the resident in decisions and rely solely on a surrogate. (Cobbs v. Grant; Barber v. Superior Court).  In these circumstances, after the physician determines a lack of decision-making capacity, the physician and clinical team may need to identify a family member or other who can represent the resident’s wishes.  This would apply if there is no DPAHC or other legally determined decision-maker, e.g., a conservator.  Often it is easy to choose as there is only one person willing and able, but there can be problems if the person who is willing is impaired themselves (e.g. elderly spouse) or if there is disagreement in the social network of the individual about who is the best.   In California, there is no mandated hierarchy regarding who may serve, but the person chosen should be that person best able to exercise “substituted judgment,” i.e., doing what the person would have wanted based on knowledge of their past preferences and wishes, or absent anyone with this understanding of the resident’s wishes, someone who can act in their best interests.

Mr. Pierce does not appear to understand why he is at your facility, or what medical issues he has.  You identify a significant cognitive impairment that renders him unable to provide informed consent.  He is estranged from his wife and they have been separated for many years.  During that time, he had been living with his son until his son could no longer take care of him.

Here, the son is identified as the surrogate decision-maker.

What if there is nobody who is willing or able to serve as surrogate?

In some cases, we are confronted with situations where we have a clearly incapacitated resident, who is unable to provide informed consent, and there is no other potential representative.  This would be the “unbefriended” resident.

Mrs. Filmore arrives at your facility lacking decision-making capacity and with no known family or friends.

In California, in this sort of situation, we have the Health and Safety Code section 1418.8 that allows the interdisciplinary team (IDT) in a SNF to provide informed consent on behalf of an unbefriended resident.  This statute reflects the position of Probate Code section 4650(c) that “in the absence of controversy, a court is normally not the proper forum in which to make health care decisions, including decisions regarding life-sustaining treatment.” 

HSC 1418.8 provides a structure, outlining the composition of the IDT, and presenting significant requirements for review and documentation of decisions made for the unbefriended resident.  These include:

• A review of the physician's assessment of the resident's condition.
• The reason for the proposed use of the medical intervention.
• A discussion of the desires of the patient, where known.
• The type of medical intervention to be used in the resident's care, including its probable frequency and duration.
• The probable impact on the resident's condition, with and without the use of the medical intervention.
• Reasonable alternative medical interventions considered or utilized and reasons for their discontinuance or inappropriateness.  

HSC 1418.8 also requires, “where practicable,” the inclusion of a patient representative.  This may include a family member or friend of the resident who is unable to take full responsibility for the health care decisions of the resident, but who has agreed to serve on the interdisciplinary team to provide insight into the resident’s likely wishes. 

Finally, the interdisciplinary team must periodically evaluate the use of the prescribed medical intervention.  This will be done at least quarterly or upon a significant change in the resident's medical condition.

While this is currently under legal attack by CANHR and other advocates in court (CANHR v. Chapman), assuming its continued availability, 1418.8 can provide a less restrictive mechanism to provide informed consent for unbefriended residents.

CONSERVATORSHIPS

While conservatorship might be an option, absent an estate to pay for this service, or the presence of a mental illness that renders the person incapable of providing for food, shelter or clothing (termed “grave disability”), these may not be an option.  If your facility is proving food, shelter and clothing and the resident is not trying to leave, some assert that LPS (mental health) conservatorship would be inappropriate (Conservatorship of Davis).  It is also arguable that the blanket removal of rights by conservatorship is not the “least restrictive alternative.”

Other options available would include a petition for a single medical procedure under probate code section 3201, though this would involve significant delay and resources not available in most LTC facilities, or use of health and safety code section 1418.8.

As noted, conservatorship is a means of providing a decision-maker for an incapacitated resident and adds to the clinical determination of capacity another element—on conservatorship, an individual is rendered “incompetent” to make their own decisions in areas covered by the conservatorship.  The options noted above, probate conservatorship and LPS conservatorship may be employed, though if present, staff should be cautioned to carefully review the powers granted, as well as any possible termination or combination of decision-making options.

Many practitioners do not understand the differences between the various kinds of conservatorships and what powers are granted or not granted under each.  A person may have a conservator who controls ONLY finances and has no jurisdiction over medical decision making or the ability to sign a person into a facility. On the other hand, some conservatorships may cover only psychiatric medications and placements and not medical rights.  In these situations, a resident may refuse their treatment for diabetes or decide their own code status, but not have the right to choose their placement or refuse the IM psychiatric medications.  An advance directive created BEFORE a conservatorship over-rides the conservatorship for medical decision-making.  In some cases, the conservator can decide on code status, but in other cases, these issues must be taken to court and decided by a judge.  Some are permanent and others need to be renewed. The only way to know what rights a person has or dos not have is to read the conservatorship papers very carefully.

In one case, a person had an LPS conservatorship of the person, and a probate conservatorship of the estate which were different individuals.  The worry in this case is that staff are confused. Staff might see the “conservatorship” and disclose information and request informed consent from the probate conservator – of the estate.  This could result in inappropriate disclosure of protected medical information, and even an invalid consent if the probate conservator was also not clear about their own powers and consented to a medical intervention.  Staff would need to examine all of the paperwork, and make the fairly complicated assessment that the LPS would be called for medical issues and consent, and the probate only for financial issues. These cases highlight the need to have someone on the team read and understand the information and clearly specify to staff who they call for what.

The poster presentation was interactive providing participants with actual conservatorship documents and cases and asking them to decide what to do.  As seen in the poster and as detailed her, decision-making in LTC is quite complex, and requires facilities to ensure that staff are supported in assessing decision-making capacity, documentation of relevant information, review of decision-making documents, understanding of and ability to apply sometimes confusing or overlapping decision-making mechanisms, and the application of principles such as the “least restrictive alternative” in doing so.

Barber v. Superior Court, 147 Cal.App.3d 1006 (1983)

Cobbs v. Grant, 8 Cal.3d229, 244 (1972)

Health and Safety Code Section 1418.8

Probate Code Section 3200 et seq.

Gibson, RM, Boyd, JG, Medical Decision-Making in California Long-term Care Facilities: Health & Safety Code Section 1418.8, a Mandated Alternative to Conservatorship.  Trusts and Estates Quarterly, Volume 19, Issue 1(2013), a publication of the California State Bar Trusts and Estates Section.  http://www.pltcweb.org/uploads/documents/Gibson_&_Boyd,_2013.pdf