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VCIL Position Paper on H. 44

The Vermont Center for Independent Living opposes H. 44. We support the Vermont Medical Society’s position that legislative initiatives to either prohibit or legalize physician-assisted suicide (PAS) are not the solution to improving end of life care. We believe that the focus on PAS legislation is diverting public and policy makers’ attention from a broader, more constructive focus on improving end of life care and pain management services in Vermont and the nation. We recognize and appreciate that the sponsors of the bill seek to address critical issues of personal choice and social responsibility in end of life care, but see many dangers in the proposed legislation.

The Supreme Court in Alaska, a Task Force in New York, and citizens and policy makers in Maine, California, and Hawaii concluded that passing this legislation at this time expands personal choices for a few while putting a far greater number of vulnerable Americans at risk. Disability Rights attorneys and advocates for the uninsured and other minority groups and vulnerable populations have highlighted similar concerns. Laws do not operate in a vacuum.

Until our society is better at supporting and accepting individuals with disabilities and offers greater protections and equal access to quality pain management services and hospice to all who need them regardless of income and background, many individuals will experience lethal medication not as one choice but as the only alternative to pain, isolation, being a burden on families, ending life alone or somewhere they do not want to be or receiving unwanted and intrusive medical care. Indeed this bill may, contrary to intent, countermand individual rights, rather than expand them.

Our concerns include:

  • The bill requires that individuals be informed of alternatives but it does not require or actively support improved access to existing quality palliative care and hospice services.
  • It expands physician’s role without addressing the significant gaps in physician and public education regarding best practices in pain management strategies and end of life care. It does not address whether physicians are always the most qualified and capable resources for providing responsive and skilled end of life care or counsel.
  • In Oregon and in the Netherlands, reasons given for requesting lethal medication are less because of pain or significant discomfort and more often to avoid “loss of dignity” or being a burden on others. Fear of incontinence, disability, or of being a burden on others are personal concerns with social remedies. They should not be a reason for physician assistance in ending life. Intentionally or not, legislating such a response actually contributes to disability discrimination and stigma and gives physicians a role in ending life that they were never intended to have.
  • The bill is presented as both an individual rights bill and a response to end of life pain. The competency requirements and physical requirements to self-administer medications means that this bill excludes some individuals with disabilities. Hospice and palliative care experts continue to improve approaches to pain management and care at end of life that are easier to oversee, less open to misuse and do not discriminate. Social and legislative proposals to address care and pain management at the end of life should offer equal opportunities and benefits to all and certainly should not ignore the legitimate rights and pain concerns of individuals with disabilities.
  • The bill does nothing to address pain management throughout the lifespan, a major problem for many individuals with disabilities and their families.
  • The six month eligibility threshold used in this bill and in Oregon is generally not viewed as clinically valid: Many individuals given this prognosis frequently live longer and even recover with appropriate treatment.
  • Patient choice and autonomy is often a false promise in today’s health care system. This bill does not provide necessary safeguards and support for autonomy such as those offered by effective hospice and health ombudsman programs.
  • The proposed Vermont legislation, like Oregon’s rules, does a better job protecting physicians from liability than it does protecting vulnerable individuals from harm. The “good faith” protection provided to doctors in this bill is very broad and difficult to impossible to prove or disprove.
  • The Vermont bill is modeled on Oregon’s practices. Oregon’s data collection and oversight practices include significant omissions and raise concerns regarding the information that is not collected or made available to policy makers or the public. The press has reported troubling cases, which were not included in the public record. Examples of “doctor shopping”, the medication failing, coercion, and use with those who do not meet the eligibility criteria have all been reported. It is hard to know how often this might be happening because of limitations in the public record.