Among the many difficult decisions guardians make for their wards are end-of-life decisions.
Guardians often must make a judgment call about their ward’s life, especially if their incapacitated ward is in a hospital or nursing home. If their ward’s preferences and wishes about end-of-life treatment are unknown, the guardian must act in their ward’s “best interests”.
In New York, assisted suicide is not an option. Period. Not for anyone. Not for guardians. But that doesn’t mean New Yorkers can’t refuse medical treatment and die on their own terms. It also doesn’t mean that guardians can’t refuse medical treatment on behalf of their wards. To refuse life-sustaining treatment, however, guardians will need to have the legal power to do so in the Order & Judgment appointing them guardian.
So when a guardian must start making end-of-life decisions for their ward, what do they do? What’s the first step? How do guardians make sure the decisions they make are ethical, legal, and authorized?
What follows is a system for Mental Hygiene Law article 81 guardians in New York to use when making end-of-life decisions for their ward in a hospital or nursing home setting. Remember, every case is different, with unique facts and circumstances. This guide is for informational and educational purposes only. It is not legal advice, and certainly not medical advice.
Step 1: Read the Order & Judgment appointing the guardian
This is the most important step. The Order & Judgment appointing the guardian defines the guardian’s powers, including powers regarding end-of-life decisions. For example, the sample form Order & Judgment provided by the New York County Supreme Court includes a typical provision in many Orders and Judgments, which reads as follows:
[The guardian may] [c]consent to or refuse generally accepted routine or major medical or dental treatment (including the power to consent to an “Order Not to Resuscitate,” as a surrogate, pursuant to Public Health Law §2965 [a][I]), provided that treatment decisions are made consistent with the findings of MHL § 81.15 and in accordance with the standards set forth in MHL § 81.22 (a)(8).
This clause means the guardian can enter an “Order Not to Resuscitate”, or “DNI Order” (meaning don’t perform CPR) in the ward’s medical record without going to back to Court. In other words, the guardian can consent to withhold CPR as long as their ward never expressed a preference to the contrary, and as long as it’s in their ward’s best interest.
In addition, the typical Order and Judgment includes a power that reads:
ORDERED AND ADJUDGED that the personal needs guardian appointed herein is hereby designated as the incapacitated person’s surrogate for decisions in hospitals as defined by subdivision eighteen of Public Health Law §2994-a (said definition includes nursing homes), subject to Article 29-CC of the Public Health Law, and in all other circumstances, to consent to or refuse generally accepted routine or major medical or dental treatment, subject to the decision-making standard in subdivision four of Public Health Law §2994-d …
For purposes of end-of-life decision making powers, the provisions of Public Health Law §2994-d(3)(a)(i) provide that the guardian, having the same powers as a health care “surrogate”, is expressly authorized by statute to make any and all health care decisions on their ward’s behalf that their ward could have made on their own if they had capacity. This includes end-of-life decisions.
However, the guardian’s authority is “[s]ubject to the standards and limitations” of Public Health Law Article 29-CC, the Family Health Care Decisions Act (often abbreviated as “FHCDA” and pronounced “Fuh-Hic-Duh”).
Pursuant to Public Health Law §2994-d(3)(a)(ii), nothing in FHCDA “shall obligate health care providers to seek the consent of” the guardian if, with respect to a decision to withdraw or withhold life-sustaining treatment, an adult patient expressed their preferences “either orally during hospitalization in the presence of two witnesses eighteen years of age or older, at least one of whom is a health or social services practitioner affiliated with the hospital, or in writing.”
The statute provides the ward with the authority to override their guardian’s instructions. However, the guardian generally must be notified of the ward’s governing wishes. Public Health Law §2994-d(3)(a)(ii) requires the attending physician or attending nurse practitioner to make “diligent efforts” to notify the guardian, and if unable to do so, document the unsuccessful efforts made to notify the guardian.
What is most striking about the two above powers as it relates to the guardian’s authority is that they speak only to DNR Orders. They say nothing about withholding other forms of end-of-life treatment, such as intubation and mechanical ventilation, artificially administered fluids and nutrition, and other forms of end-of-life treatment.
Many Orders & Judgments contain similar provisions to those above, which limit the guardian’s powers to withholding CPR only, forcing the guardian to return to Court for authority to enter a “Do Not Intubate Order”, or “DNI Order”, or make other end-of-life decisions. These sample provisions say nothing about such treatment.
Moreover, Orders and Judgments almost never speak to non-hospital DNR Orders or other forms of life-sustaining treatment in a non-hospital/non-nursing home setting.
Because of the limits placed in the sample Order & Judgment, and because the nature of the decision is so serious, it often makes sense for the guardian to make an application to the Court for approval to withhold not only CPR, but intubation, tube feeding, and artificial hydration. I discuss the Court application in Step 3. But before making the application, the guardian should be sure that withholding life-sustaining treatment is in their ward’s best interests.
Step 2: Talking to the ward’s medical caregivers
A DNR Order is a writing in the ward’s medical record telling medical professionals not to perform CPR on the ward if their heart stops beating. CPR can crush the ward’s ribs and puncture their lungs, causing great pain. The DNI Order prevents medical staff from placing a tube down the ward’s throat to assist with breathing, which often leads to very unpleasant tracheotomy surgery. Whether such medical orders or the withholding of other forms of life-sustaining treatment are appropriate depends on the facts in each case.
If a ward ever expressed an opinion about end-of-life decisions before losing capacity, their wishes should be followed. If the ward’s wishes are unknown, I generally advise guardians to consult with their ward’s attending physicians, nurses, and social workers about this decision.
Step 3: Make an application with the Court to get the Judge’s blessing
As explained earlier, even if the Order & Judgment allows the guardian to enter a DNR Order in their ward’s medical record, it’s generally best practice to have a Judge make a separate Court Order authorizing the guardian to enter not only a DNR Order, but to withhold other life-sustaining treatment, such as intubation, tube feeding, and artificial hydration.
To make a successful application the guardian will want to:
- Get affidavits from the medical professionals caring for their ward, explaining why DNR and DNI Orders, or other forms of life-sustaining treatment, are appropriate.
- Make their own affidavit as well.
- The guardian or their counsel should attach a proposed Order to their application, which will permit the guardian to execute a proposed MOLST. The MOLST should be filled out by the guardian, but not signed. The guardian is showing the Court what they would like to enter.
- The guardian should fill out the MOLST in consultation with an appropriate medical professional familiar with their ward’s care.
- The guardian or their counsel will need to figure out the Court’s procedural rules for making the application. Usually such applications are made by Order to Show Cause.
Guardians must be very careful, and thorough, when faced with the need to make end-of-life decisions for their wards. They will need to understand the scope of their authority, their ward’s wishes, and the various forms of life-sustaining treatment.