New Hampshire bill might lead to dehydration deaths for people with disabilities.

The following letter was sent by Diane Coleman, from the disability rights group, Not Dead Yet, to New Hampshire legislators opposing New Hampshire Senate Bill SB 170, that will redefine hydration and nutrition in state law. 

Diane Coleman wrote:

I am writing to you on behalf of Not Dead Yet, a national disability rights group with members in New Hampshire. Among other issues, our organization works to ensure that the law of “informed consent” governs the implementation of the right to refuse unwanted medical treatment.

The purpose of this letter is to express opposition to SB 170, “An Act relative to advance directives pertaining to life-sustaining treatment.” In our view, SB 170 undermines “informed consent” with respect to the provision of tube feeding and/or intravenous fluids.

Current New Hampshire law protects the general public, including but not limited to people with disabilities, by separating the choice to receive or refuse various forms of life-sustaining treatment from the choice to receive or refuse tube feeding and/or intravenous fluids. This distinction is important for at least four reasons.  

First, everyone needs food and fluids to live, but many non-terminal health conditions related to swallowing prevent safe oral ingestion.  

Second, people who need tube feeding on a long-term basis are disabled (such as by developmental disability, neuromuscular disability or brain injury), and protection of this group is subject to a variety of laws to prevent discrimination.  

Third, many people with an uncertain prognosis may depend on tube feeding and intravenous fluids temporarily and then recover, but removing food and fluids at that stage cuts off the potential for recovery and creates a self-fulfilling prophesy resulting in death.  

Finally, many people need assistance from another person to eat orally (e.g. people with dementia, cerebral palsy, quadriplegia), yet there may be insufficient paid staff to feed people in some settings.  In fact, in nursing facilities, many people are placed on tube feeding for this reason alone. Each of these factors argues in favor of the separate treatment that current New Hampshire law gives to “medically administered nutrition and hydration.”

SB 170 redefines “life-sustaining treatment” to include “medically administered nutrition and hydration” and removes any specific reference to “medically administered nutrition and hydration” from the New Hampshire form for the Durable Power of Attorney for Health Care. While the form includes a place where “additional instructions” may be inserted, nothing suggests topics or issues that one might wish to address there. The form will presumably be presented to patients in various contexts in accordance with federal law, but patients will be “on their own” if they want to go beyond just checking the box for or against “life-sustaining treatment” and try to fill in the blanks under “additional instructions”.

In her March 5th testimony, the chief sponsor of SB 170, Senator Peggy Gilmour, attempted to justify the proposed change by stating, “This separate section for Medically Administered Nutrition & Hydration is described as confusing by those completing the NH Advance Directive and among health professionals/others who help guide people in the advance directive process.” This purported “confusion” is a very thin justification, and raises questions about what underlying issues led to this bill. If health care professionals and others who guide people in the advance directive process have trouble explaining tube feeding, a relatively simple treatment that’s been around for over 100 years, how are they managing to talk about ventilators and dialysis? The current New Hampshire form itself explains, “I realize that situations could arise in which the only way to allow me to die would be to not start or to discontinue medically administered nutrition and hydration.” Perhaps the real issue is that professionals are having trouble convincing people to choose to forego food and fluids by tube if that is “the only way to allow me to die”? In any case, no evidence was offered that people are harmed by the current law, which requires individuals to make a simple choice by checkmark.

While SB 170 allows individuals to write in a specific provision relating to food and fluids by tube, it reduces the information provided to the individual, undermines informed consent, and actually shifts the burden to the individual to know and articulate their wishes.  Unless the individual is unusually knowledgeable, food and fluids by tube will be swept up in the all-or-nothing, yay-or-nay check box that applies to other treatments that fall under the increasingly pejorative term “life support.”

For the reasons stated above, we urge you to reject SB 170.

Sincerely,
Diane Coleman
Not Dead Yet