Not Dead Yet
Response to Advance Care Planning Request for Information
November 15, 2018
The following responses pertain to the indicated numbered questions in the New York State Department of Health Advance Care Planning Use Questionnaire
1) Please provide your contact information, including the name of your organization (if applicable), name of contact person, title, phone number, and e-mail address.
Not Dead Yet
Diane Coleman, JD, MBA
President/CEO
Phone: 708-420-0539
Email: dcoleman@notdeadyet.org
Website: www.notdeadyet.org
Questions for Healthcare Providers Only
Questions 2 – 7 omitted.
Although Not Dead Yet is not a healthcare provider, we would like to respond to Questions 8 and 9.
- 8) What are the most common errors made in completion of the Health Care Proxy, MOLST, and nonhospital DNR?
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. It also suggests that the non-hospital DNR form should include a basic statement defining DNRs so that staff who may be tasked to explain these forms can do so correctly. DOH should also consider limiting who can explain these forms to qualified medical staff such as doctors and physician assistants, and exclude social workers and others who lack medical training.
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/.)
For example, below are quotes from the TRIAD VI study concerning Physician Orders on Life Sustaining Treatment (POLST), which New York terms Medical Orders on Life Sustaining Treatment (MOLST):
Although these are physician medical orders, 70% are often completed by nonphysicians but are activated by a physician’s signature. . . .
The POLST form follows a treatment hierarchy, starting with resuscitation if the patient has had cardiac arrest (orders for cardiopulmonary resuscitation [CPR] or DNR, Box A of the POLST form) and followed by care when not in cardiac arrest (Box B, comfort care, limited care, or full treatment). These selections on the POLST form represent the focus of the present study. . . .
Reporting on the agreement between POLST documents and treatment by emergency services in Oregon, Richardson et al (2014) reported that 84% of those who wanted CPR were resuscitated and 78% of those with DNR did not receive resuscitation. Their data suggest rates of discordant treatment of between 16% and 22% for overtreatment and undertreatment. …
… [T]he present study sought to evaluate physician understanding of POLST, as a stand-alone document and in the context of clinical scenarios . . .. This was an Internet survey-based … study … of members of the Pennsylvania Chapter of the American College of Emergency Physicians …
When shown only a POLST document denoting DNR/full treatment, 59% selected DNR, 14% selected full code, and 27% were unsure of the code status…. Approximately half of the respondents construed DNR as comfort care/end-of-life care.
… This supports our mounting concern because some of these studies clearly indicate that not all treatment was consistent with intent of the POLST form. Further, these studies do not ensure informed consent on the part of the patient because this has yet to be determined by any published study.
The TRIAD studies and other research cited in these studies should be consulted in connection with the current DOH effort.
- 9) Do you or your organization offer advance care planning education for patients, public, and/or health care providers? If so, would you be interested in having a contact for you or your organization listed on a NYS Department of Health Advance Care Planning website?
Health care provider education has tended to emphasize errors of overtreatment and has tended to neglect errors of undertreatment. The same is true of consumer education with respect to materials and public presentations concerning advance directives. There are many reasons for this. Before the patient’s or surrogate’s right to refuse treatment was firmly established in law and policy during the 1980’s, leading up to the U.S. Supreme Court decision in the Cruzan case, there was a presumption in favor of aggressive treatment at all times. There was a corresponding financial incentive in the fee-for-service insurance system. Advance care planning arose in that context, addressing the issue of overtreatment. It’s no wonder that having an advance directive historically carried a presumption of treatment refusal, leading to the errors of interpretation toward undertreatment documented in the TRIAD studies. As managed care approaches have grown to dominate health care, financial incentives have shifted. In many cases, less treatment means more profit. Careful training and oversight are now more critical than ever before.
An example of this issue is available on the Department of Health Advance Care Planning webite: https://www.health.ny.gov/professionals/patients/health_care_proxy/. The opening sentence is, “Choosing a healthcare proxy helps to ensure you receive the care you want at the end of life.” But most of the situations listed by DOH in which a proxy may be needed or helpful do not involve “end of life.” The opening sentence creates an “end of life” bias that is not consistent with the scenarios presented.
Another 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. Not Dead Yet and other disability advocacy and independent living organizations can assist in training and policy making to address this problem.
Questions for All Respondents
The questions below are primarily drafted for individual respondents rather than individual/patient advocacy organizations. Responses below pertain to questions underscored in bold.
- 10) If you have discussed end-of-life wishes and advance care planning with family members, friends, and/or your health care provider, how easy or difficult was it to begin the conversation? What changes would make these forms easier for patients.
In Not Dead Yet’s view, the most useful form is the health care proxy. The purpose of this form is easy to explain. A proxy may be needed if the individual is unconscious or otherwise unable to make and communicate health care decisions. It would be helpful to include in the explanation or instructions the default list of surrogates provided by New York statute in the event that the individual has not designated a proxy. Additional specific comments and recommendations concerning the forms are provided below.
- 11) Are the current advance care planning forms (MOLST, Health Care Proxy, DNR) easy to understand? Please explain.
As the TRIAD studies cited above demonstrate, about half of health care providers don’t understand MOLST and DNRs. Given health care providers’ inadequate understanding of the forms, there is ample reason for concern about patient understanding and the ability of providers to respond accurately to patient questions. It is even more concerning that staff members who lack medical training are frequently assigned the role of explaining these forms to patients.
- 12) Not applicable/omitted.
- 13) What types of material or educational tools would be useful to you in having the conversation around advance care planning?
Not Dead Yet worked with Respecting Choices, a nationally prominent advance care planning program based in Wisconsin, to revise patient information documents on feeding tubes and breathing devices. Our efforts included disability advocates who use these technologies, as well as rehabilitation physicians and advance care planning professionals. Our objective was to reduce bias and improve the balance of options presented in the materials. The results of this collaboration are linked from the following announcement: http://notdeadyet.org/2016/12/not-dead-yet-and-respecting-choices-announce-successful-collaboration.html
Similar efforts to improve the objectivity and balance in New York’s advance care planning efforts and materials must actively involve people with disabilities who have knowledge and experience in independent living.
- 14) Not applicable/omitted.
- 15) Is there any language or other changes you would like to see to the Health Care Proxy? Please explain.
Page 2 of the Proxy form, point 7, ends with the statement, “Your agent cannot be sued for health care decisions made in good faith.” Most people don’t know that “good faith” is hard to disprove. It would be helpful to add something like, “Good faith is usually presumed and a lack of good faith is hard to prove. This is one reason to select a proxy you trust.”
On page 4, the first question and answer includes the following statement about the types of situations and decisions that a person should discuss with their agent:
. . . you should have a discussion with the person about what types of treatments you would or would not want under different types of circumstances, such as:
- whether you would want life support initiated/continued/removed if you are in a permanent coma;
- whether you would want treatments initiated/continued/removed if you have a terminal illness;
- whether you would want artificial nutrition and hydration initiated/withheld or continued or withdrawn and under what types of circumstances.
The wording of these circumstances omits important information and is biased against treatment. For example, regarding “permanent coma,” current American Academy of Neurology Guidelines (See https://www.aan.com/Guidelines/home/GetGuidelineContent/929) do not use this terminology and speak about the importance of the passage of time in assessing the potential for recovery. Medical professionals do not consistently apply these professional Guidelines, so patients need to be informed. This bullet point should be revised to say something like, “whether you would want life support initiated/continued/removed if you are determined to be unresponsive and unlikely to regain consciousness after an appropriate waiting period.”
Regarding the circumstance of “terminal illness” in the second bullet, the term is not defined. While some people think it means having a six month prognosis, most people think it means any condition that is expected to kill them sooner or later. People often live with “terminal” illnesses for many years. The definition should be made clear.
The form instructions on page 6 for item 4 also continue the vague and biased messaging which encourages hasty and uninformed decisions in the context of terminal illness, brain injury, disorders of consciousness and dementia:
If you wish to make more specific instructions, you could say:
If I become terminally ill, I do/don’t want to receive the following types of treatments….
If I am in a coma or have little conscious understanding, with no hope of recovery, then I do/don’t want the following types of treatments:….
If I have brain damage or a brain disease that makes me unable to recognize people or speak and there is no hope that my condition will improve, I do/don’t want the following types of treatments:….
The last bullet refers to not being able to speak without mentioning communicating using speech devices or even simple handwriting. The “do/don’t” phrasing does not correct the fundamental bias against treatment in the overall phrasing. This component of the item 4 instructions should be removed in its entirety.
- 16) Not applicable/omitted.
- 17) Is there any language or other changes you would like to see to the MOLST? Please explain.
The New York MOLST form urgently needs revision because the current language creates two significant risks:
- The risk that the form will be treated as mandatory when it must be voluntary; and
- The risk that MOLST forms will be created for people who are not appropriate for this type of medical order.
The national POLST Paradigm guidance for professionals clearly states that POLST must be “Voluntary. Like all health care decisions, POLST form orders should never be required or mandated.” (See http://polst.org/professionals-page/?pro=1) The following is the current language of the NY MOLST form that creates a risk that the form may not be treated as voluntary:
This is a medical order form that tells others the patient’s wishes for life sustaining treatment. A health care professional must complete or change the MOLST form, based on the patient’s current medical condition, values, wishes and MOLST Instructions. . . . All health care professionals must follow these medical orders as the patient moves from one location to another, unless a physician examines the patient, reviews the orders and changes them. (Emphasis added.)
Although the underscored clause may only be meant to identify who signs the form, the words “must complete” could easily be misconstrued. It would be clearer to say, “Only a health care professional can complete or change the MOLST form, which must be based on the patient’s . . ..” In addition, the final sentence of that paragraph omits reference to the patient’s wishes or surrogate’s decision and may be misconstrued to allow the doctor to change the form based only on the professional’s view of the patient’s condition. The requirement should be stated as, “All health care professionals must follow these medical orders as the patient moves from one location to another, unless a physician examines the patient, assesses any changes in the patient’s wishes, reviews the orders and changes them accordingly.”
The following is the current language of the NY MOLST form that creates a risk that the form may be created for people who are not appropriate for this type of medical order:
MOLST is generally for patients with serious health conditions. The patient or other decision maker should work with the physician and consider asking the physician to fill out a MOLST form if the patient:
- Wants to avoid or receive any or all life sustaining treatment.
- Resides in a long term care facility or requires long term care services.
- Might die within the next year.
First, the opening sentence is too broadly stated: “MOLST is generally for patients with serious health conditions.” Many disabled people would be viewed as having “serious health conditions” but are in no way appropriate for MOLST. Each of the bulleted conditions is presented as alone sufficient to warrant having a MOLST form, and all three are problematic.
“Wants to avoid or receive any or all life sustaining treatment.” – MOLST offers either/or, yes/no choices, which do not take the circumstances into account. It doesn’t matter if emergency personnel took 3 minutes or 30 to arrive in response to a 911 call. It doesn’t matter whether the person choked on food or fell and hit their head or collapsed from an unknown cause. MOLST treats all circumstances the same. It’s also important to know that providers are often confused by MOLST forms, as the TRIAD studies found. An argument could plausibly be made that the only people who should have a MOLST form are those who have firmly decided that they will take the next available exit from life.
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).
The third bullet, “Might die within the next year”, is obviously meant to refer to the idea that the person’s physician would not be surprised if they died of their health condition within a year. It should say that. As currently worded, it could refer to everyone, since anyone could die within a year of a variety of causes.
Section E on the MOLST form includes choices about Intubation and Mechanical Ventilation, but the 3rd option is not consistent with typical medical practice. It states, “Intubation and long term mechanical ventilation, if needed Place a tube down the patient’s throat and connect to a breathing machine as long as it is medically needed.” It is not clear what “long term” means, but for long term invasive ventilation (e.g. more than 2 – 3 weeks), it is typical for a physician to perform a tracheostomy to increase the patient’s comfort compared to a tube down the throat. This should be clarified on the form.
- 18) What do you believe are some of the reasons why more people are not having the conversation on advance care planning?
It’s possible that some people have the same impression that health care providers often have, that advance care planning is primarily about refusing life sustaining treatment in advance, and maybe they don’t feel ready to do that. And maybe they’re also not entirely comfortable with the potential financial motivations of managed care organizations and other insurers.