SILC White Paper
Comments Upon H. 274 and S. 103: An Act Relating to Patient Choice and Control at End of Life
The Statewide Independent Living Council (SILC), in accordance with its mission, hereby comments upon and expresses concerns relevant to H. 274 and S. 103 - patient choice at end-of-life. The SILC makes clear that it is not taking a position either in support of or in opposition to the pertinent legislation.
The objective of the SILC is to serve as an educational and informational source. It is hoped that the following points are considered carefully and thoughtfully by those concerned.
- Education of the public – particularly individuals with disabilities - as to available options and choices is critical to truly informed choice.
- Vigilance should be exercised when vulnerable populations are involved. It is imperative that end-of-life decisions are truly those of the individual directly affected, as has been largely addressed by the bill.
Lack of affordability should never serve as a barrier to an individual being offered a range of adequate and appropriate health care options.
- Existence of PC@EOL law might unfairly heighten pressure – either from within or from others - on the individual to choose to end his/her life because of feelings of guilt or of being a “burden.”
- There exists advance directives law(s) in the State of Vermont. Such laws allow for an individual to refuse active medical treatment and for a natural death. This must be distinguished from active termination of life.
Consideration must be given to the fact that death is final. A terminal diagnosis and prognosis involve experience and reference to existing literature, but may be either inaccurate or imprecise. Adding a sentence to the bill making it requisite that both the physician and consultant state this, both verbally and in writing, will increase and individual’s ability to exercise informed choice.
- Consideration must be afforded to the fact that it is not possible, by virtue of their medical condition, for some mentally competent individuals facing end-of-life decisions to “self-administer” medication. To preclude discriminatory application, such individuals must have equal access to the bill’s provisions as those individuals capable of self-administration.