March 6, 2015
The National Council on Independent Living (NCIL) applauds the IOM for taking on such an important endeavor, and we strongly support the recommendations that end- of-life care be compassionate, affordable, sustainable, and of the best quality possible. We also support the IOM’s efforts to ensure that end-of-life care be person- centered. However, as an organization representing thousands of individuals with disabilities and organizations serving those individuals, NCIL has grave concerns with the potential implications of the implementation of several recommendations in this report, including #2 (Clinician-Patient Communication and Advance Care Planning), #4 (Policies and Payment Systems), and #5 (Public Education and Engagement).
It is important to note that disability is a large component of many end-of-life discussions. Whether individuals are having end-of-life conversations due to aging, chronic conditions, or terminal illness, disability often accompanies these processes, resulting in functional losses that become pivotal in the decision-making process.
Recommendation #2 and #4:
Of particular concern is the recommendation that “frequent clinician-patient conversations about end-of-life care values, goals, and preferences are necessary to avoid unwanted treatment”, and equally concerning is the recommendation that these conversations be incentivized. A significant fear on behalf of the disability community is that incentivizing these conversations could in turn incentivize doctors to base conversations and recommendations on cost-cutting measures. Because of an already strong disability bias in medical care, an increased emphasis on reducing the utilization of “unnecessary medical services” will run a real risk of deterring patients from utilizing services and supports that may have the potential to improve the individual’s quality of life.
For instance, providing treatment and supports for an individual with a terminal illness can cost hundreds of thousands of dollars, while assisted suicide drugs cost only several hundred. There have been cases in Oregon where individuals have been denied life-prolonging treatment and offered assisted suicide medication instead. When assisted suicide is encouraged by clinicians, or when it is the only option covered by a healthcare company, many patients no longer have a ‘choice’. And while this may seem like an extreme cost-cutting measure, there is evidence of similar examples in Washington and Vermont, the two other states where assisted suicide is legal. With many more states working on assisted suicide legislation in 2015, this fear is real and justified.
NCIL appreciates the importance of engaging with and educating the public, however the disability community has been noticeably absent from previous conversations. Because disability is such a relevant component of end-of-life discussions, people with disabilities have an incredible amount of knowledge and insight regarding the
functional losses that often accompany the aging process, chronic conditions, and/or
NCIL appreciates the importance of engaging with and educating the public, however the disability community has been noticeably absent from previous conversations. Because disability is such a relevant component of end-of-life discussions, people with disabilities have an incredible amount of knowledge and insight regarding the functional losses that often accompany the aging process, chronic conditions, and/or terminal illness. People with disabilities are experts in maintaining quality of life and maximizing functioning, and would be able to contribute invaluable information to these discussions.
Again, thank you for this report. We strongly hope that you will take NCIL’s recommendations into consideration.