The New York Department of Health recently requested public input from health care providers and patients on how to make advance care planning forms more understandable and easy to use. The Department provided a response template with questions focused on people’s experiences with three forms: the health care proxy, out-of-hospital do not resuscitate order (DNR) and medical orders for life sustaining treatment (MOLST).
As I prepared to respond to this request for comment, I happened to describe it to someone I know, a woman in her 50’s who had a hysterectomy a few years ago. She said that she had a DNR. This surprised me in light of other comments she has made, so I asked her if she didn’t want CPR. She said that she would want CPR, and that a relative has had CPR three times due to heart attacks, all successful. She said that a social worker at the hospital told her that the DNR was in case she was brain dead, but did not explain that it meant she would not receive CPR in case of a heart attack. She also said that many of her relatives have had basic CPR training. This is a real world story from Rochester, New York. Although it does not involve a non-hospital DNR, a subject of this request for information, it is certainly a relevant cautionary tale.
NDY was most interested in providing input on certain public policy issues related to advance care planning and the three forms because:
Errors in completion of Health Care Proxy, MOLST, and nonhospital DNR forms are one of a number of factors leading to equally important errors in interpretation of these forms by medical personnel. Errors of interpretation are of great concern because they can result in treatment being provided or withheld in a manner inconsistent with the individual’s wishes. The most significant and devastating type of error occurs in the case of life-sustaining treatment, when nonconsensual withholding of treatment is likely to result in involuntary death.
Extensive medical research has been conducted on errors in interpretation of advance care planning documents at the Institute on Healthcare Directives (https://institutehcd.com/). The TRIAD Research Studies (The Realistic Interpretation of Advance Directives) are available online and can assist in informing advance care planning and policy making efforts. (See https://institutehcd.com/triad-advance-directives/.)
Here are two disability rights highlights from NDY’s public comment:
One area of concern in advance care planning is how provider, patient and family education has demonstrated significant bias against living with disabilities. Most people, including health care providers, have little training or knowledge in the practical aspects of managing life with a disability. Too often, disability is falsely portrayed or implied to be a fate worse than death, and advance care planning is correspondingly presented as a way to avoid life with disability. Well informed and experienced people with disabilities are needed at all levels of policy making and training to counter this disability bias, also known as ableism. Disability advocacy and independent living organizations can assist in training and policy making to address this problem.
The MOLST instructions tell providers to get a MOLST form for anyone who “Resides in a long term care facility or requires long term care services” – which is nothing short of outrageously wrong and must be removed. There are countless people in long term care facilities who are no where near the “end of life” but are stuck there only because they can’t get the home and community based services and accessible, affordable housing they need to live in freedom. These individuals need protection from a society that is far too ready to throw them away. Others receive long term care at home and are also in no way appropriate for a MOLST form. The NY form has no doubt caused some long term care facilities to mistakenly believe that they should have a MOLST form for every resident, and some home care providers to make a similar mistake. This is not consistent with the POLST Paradigm professional guidance (see http://polst.org/professionals-page/?pro=1).
If you want to read the whole NDY public comment, please go here.