God’s Will Scale

The One Slide: End of Life Questions
The One Slide: End of Life Questions (Photo credit: stevegarfield)

It’s official: they have a research scale for everything, including God’s Will. In dealing with my elderly father’s illness and end-of-life (EOL) decision-making/interface with the health care system, I kept remembering research I’d read about religiosity and EOL choices. Higher religiosity is associated with preference for life-prolonging medical treatments. This may seem counterintuitive at first, but perhaps people with higher religiosity are less likely to doubt the limits of medical science and our health care system. Researchers developed the Gods’ Will Scale to measure degree of religiosity (Winter, et al, 2009, Preferences for life-prolonging medical treatments and deference to the Will of God, J. Relig Health. 48: 418-430) The New York Times today has an interesting Opinion piece related to this topic: Why Do Americans Balk at Euthanasia Laws?  Contributors to this article point to the fact that the US population scores much higher on religiosity scales than do our peer nations. I should mention again that my father is a retired Presbyterian minister living in the conservative and highly religious state of Virginia.

I praise God and every other possible Higher Being that I live in a relatively enlightened state—that state being Washington State, which joined Oregon in the Death with Dignity Act. We also have a relatively active and from what I hear effective POLST Paradigm program: Physician Orders for Life-Sustaining Treatment Paradigm. POLST Paradigm program is designed to improve the quality of care people receive at the end of life. As they describe the program “It is based on effective communication of patient wishes, documentation of medical orders on a brightly colored form and a promise by health care professionals to honor these wishes.” From what I understand, POLST was started in response to complaints from patients that their EOL wishes as declared on Living Wills/Advance Directives were not being honored within the health care system. There have been cases of patients tattooing “DNR” (Do Not Resuscitate) on their chests in an attempt to have their wishes honored. Supposedly this works as long as rescue personnel bother to read their tattoo.

On the POLST website they describe patient-centered end-of-life care as, “Effective communication between the patient or legally designated decision-maker and health care professionals ensures decisions are sound and based on the patient’s understanding their medical condition, their prognosis, the benefits and burdens of the life-sustaining treatment and their personal goals for care.”

All people over the age of 18 are advised to have a Living Will/Advance Directives. In addition, people with a life-limiting illness should have a POLST. In Washington State POLST forms can be signed by physicians, nurse practitioners or physician assistants–that, of course, varies state to state according to their scope of practice regulations. Virginia has not yet adopted the POLST Paradigm.

In my opinion, my father has not received patient-centered end-of-life care. Instead, he received costly life-sustaining medical treatment and remains hospitalized in ICU. But at the same time, he is up and walking with help, complaining about the hospital food, and ready to get back to his work of taking communion to people in nursing homes. So, maybe it’s God’s will?

April Fool

April 16th is the fifth annual National Healthcare Decisions Day (NHDD). According to their website, the mission of NHDD is “to inspire, educate & empower the public & providers about the importance of advance care planning. National Healthcare Decisions Day is an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be.” Nathan Kottkamp, a lawyer who specializes in health care law is the founder and chair of NHDD. In an interview on AARP News, Mr. Kottkamp reports that he launched NHDD in Virginia in 2006 and expanded it nationally in 2008. He chose April 16th, the day after “tax day” because of Ben Franklin’s aphorism “Nothing can be said to be certain except death and taxes.”

Advance medical directives including living wills and health care proxy/agent/power of attorney (who a person wants to make health care decisions for them in case they are incapacitated), are important legal documents recognized (in differing degrees) in all 50 states. At least in theory, having an advance medical directive helps patients have more say in how they die—whether, like the emergency department physician Boris Veysman they want “Shock me, tube me, line me” (Health Affairs, Feb 2010, vol 29(2): 324-326), or like other people they do not want medical procedures that artificially prolong the dying process. And designating a health care proxy—again in theory—helps to avoid unnecessary confusion in health care communication, especially in emergency situations.

I applaud the work of Nathan Kottkamp and others like him to bring greater awareness to the general public about end of life decision making. But as I am currently experiencing, the health care system is not cooperating with sane implementation of the Advance Medical Directives.

Five blocks northeast of Nathan Kottkamp’s law office in Richmond, Virginia is the main hospital of the Virginia Commonwealth University (VCU) health System. My elderly father is now a patient there, after experiencing confusion and shortness of breath at home (from congestive heart failure) and calling the ambulance to take him to see his cardiologist at VCU. Less than two years ago I was with my father in the VCU hospital admission’s office when he was being admitted for possible cardiac surgery. My father had the original copy of his Virginia Advance Medical Directive/Living Will/Appointment of Health Care Agent. My father and I had gone over specific medical procedures—such as resuscitation, mechanical ventilation, and ‘tube’ feeding—with his wonderfully patient and competent primary care physician (who praised my father for having this important conversation and for doing his Living Will).  My father came to VCU hospital fully prepared. His Medical Directive five page document was witnessed/signed by two of the VCU Health Systems hospital admission’s office officials. They made photocopies to give to me and promised the legal document was now part of my father’s hospital medical record. My father named me as his health care agent.

Imagine my surprise yesterday when I was notified by my father’s neighbor that my father had been whisked away to VCU emergency department. But I was even more surprised when I called/talked with a clerk at the VCU ED and was told that to protect patient privacy the nurses/medical staff couldn’t tell me anything about my father—that she wasn’t even supposed to tell me if he was there or not. It did no good when I informed her I was his health care proxy—she said they had no proof of that. He was admitted to the cardiac floor and I was finally able to talk with his nurse (using a special secret HIPAA/patient privacy code—really? The lawyers interpreting HIPAA for hospitals are getting quite creative). She informed me that they had no record of my father’s Medical Directive so he was “full code.” When I told her I had a photocopy of the Medical Directive in front of me and that it was signed by their hospital admission’s department personnel she said, “That doesn’t matter. We get rid of all of that in the medical record and start all over again.” She said that my father should have brought a copy of his Medical Directive to the hospital with him—it was his fault he didn’t have it. I kept expecting her to exclaim “April Fools!” but she didn’t.

So, on April Fools’ Day, I’d like to amend Ben Franklin’s aphorism to proclaim: In this world there is nothing certain except death and taxes and the fact that our US health care system is one crazy-making system…..

(If you haven’t seen/read Atul Gawande’s terrific New Yorker Essay 8-2-10 on end of life decision making ,“Letting Go, What Should Medicine Do When It Can’t Save Your Life?” I highly recommend it. Also see the recent NYT Op-ed piece 3-30-12 “Taking Responsibility for Death” by Susan Jacoby).

The state of the state regulation of health professions

The Seal of Washington, Washington's state seal.
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Washington State is among the best states for nurse practitioner scope of practice. I knew this, of course, and it is one of the reasons I moved here 16 years ago. Therefore, I assumed that Washington State had to be that much better than Virginia when it came to the regulatory system for health professions. However, according to the results of the 2007 Performance Audit Report, Department of Health, Health Professions Quality Assurance Report by Brian Sonntag, Washington State Auditor, this is not the case. Governor Christine Gregoire requested this audit, largely as a result of media coverage of sexual abuse of patients by Washington state licensed health care providers. In 2005/2006 The Seattle Times published a investigative reporting series by Mike Berens called “License to Harm,” and in it he concluded that Washington State had a deficient health regulatory system that fostered abuse through weak and inefficient regulation.

One of the main problems as pointed out in the Performance Audit Report is the confusing government structure for Washington State health professions regulation. Whereas most all other states in the US have independent agencies regulating health professions, Washington State has an umbrella structure. Within the Department of Health there is Health Professions Quality Assurance (HPQA), which directly oversees 23 professions, but also provides support to 16 other boards and commissions. These boards and commissions are authorized by law to adopt their own rules and standards. Although HPQA is responsible for overseeing credentialing and discipline of health care professionals, it does not have responsibility or authority to direct boards and commissions in matters relating to case resolution and disciplinary actions. The report states that this divided governance structure does not provide for clear lines of performance management and accountability with regard to operations of the boards and commissions. In addition, it results in significant inconsistencies in disciplinary practices across professions.

Another interesting fact mentioned in the Audit Report is that since 2005, HPQA has taken steps to address public demand for more severe sanctions against health care providers. They do not specify how they have addressed this public demand for more severe sanctions, except by highlighting Governor Gregoire’s mandate to promptly investigate—without—exception—all allegations of sexual misconduct by all health professionals. They note that between 1995 and 2006, there was an 83% increase in the number of all complaints filed against health care providers in Washington State. The authors of the report recommended ways to increase public awareness about their right to file complaints against health care providers; however, the written response of HPQA to this recommendation was that they didn’t want to do this since they were inadequately staffed to handle the increased number of complaints.

So, in the past four years since this audit was done and recommended changes given to the Department of Health, the Governor and the State Legislature, what progress has been made? Since there was no follow-up report available on the HPQA website, I decided to call and e-mail them to find some answers to my questions. I’m happy to report that I got further with this line of inquiry than I did with comparable government personnel in Virginia. I spoke with Steve Hodgson in the Assistant Secretary’s Office of HPQA. He told me he had forwarded on my list of questions to Kristi Weeks, Director, Office of Legal Services, HSQA, and that they would get back with me with the answers by the end of the week this past week. In response to my ‘easy’ question, “What’s the difference between a board and a commission within HPQA?” he said that it boiled down to a difference of payment structure. That the board members of the four health professions’ boards (medicine, nursing, dentistry and chiropractic) receive $250/day in compensation for their board duties, whereas all commission members only get $50/day.

Here are some updates. There have been no changes in the umbrella/divided government structure of the health professions regulatory system in Washington State. In May 2006, the Secretary of Health adopted Uniform Sanctioning Guidelines as a tool for all of the boards and commissions to consistently impose similar sanctions for similar violations. The various health regulatory boards and commissions were not mandated to adopt these guidelines, and voluntarily adopted them at different times. As of this year, all boards and commissions have adopted them. However, as the results of the 2007 audit found, interpretation and implementation of such guidelines varies widely by professional group commission/board. All of the boards and commissions are now annually reporting performance measures to the HPQA. A planned follow-up audit of the health regulatory system in 2010 was canned due to lack of funds. However, Kristi Weeks writes, “The Legislature has mandated a report by December 15, 2013 that will evaluate, among other things, medical and nursing’s regulatory activities, including timelines, consistency of decision making, and performance levels in comparison to other disciplining authorities.” She did write that this is all subject to public disclosure and said I should feel free to share it.

A lingering question: Assuming the 2010 health regulatory system audit had been funded, what, if anything, would have been different in the cases of Kim Hiatt and the other Children’s hospital nurses recently charged by the Nursing Commission for misconduct?

Virginia Board of Nursing Wrap-up

In my previous blog post (Ir)regulation of the Health Professions, I briefly told the story of my run-in with the Virginia Health Regulatory Board, and how I was investigated by them for nine months. They (I think—I still have no written proof) then closed my case due to insufficient evidence. An independent state audit of the Virginia Health Regulatory Boards around the time of my encounter with them revealed that it took the Board of Medicine on average over two and a half years to conclude cases, and the Board of Nursing took over a year. In almost all cases, including ones involving serious violations, the Board of Medicine allowed physicians to continue practicing pending the outcome of the investigation. In contrast, the Board of Nursing usually ordered the nurse to not practice pending their final decision at the conclusion of the investigation. The Board of Nursing was the only health regulatory board to summarily suspend the license of nurses prior to the conclusion of the investigation. In the Virginia audit report, the authors pointed out that such long time delays in processing investigations posed a serious threat to public safety. They also stated that long delays in case processing placed an unfair burden on respondents (providers accused of wrong-doing).


Not having access to any written reports on my own case—including not knowing what I was accused of doing in the first place, I can only go by the notes I took during my meeting with the Attorney General at the time. From what I can gather, the Boards of Medicine and Nursing were disputing scope of practice standards for nurse practitioners and I was a likely test case. I remember testifying at a special hearing of the Virginia legislature about nurse practitioner scope of practice and why reforms in state laws were necessary for the provision of safety net services. Virginia remains one of the worst states in terms of nurse practitioner scope of practice. I don’t plan to practice there anytime soon, but I do hope they get their (nurse practice) act together. I know they are working on it.

Ir(regulation) of the Health Professions

The state seal of Virginia.
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This is a cautionary tale about what I have experienced in dealing with the Virginia Department of Health’s Board of Nursing over my own nursing license—and the records they have of my case. It highlights what I believe to be second victim issues stemming from the unfair abuse of power of such health regulatory boards. It is my personal story, based on my own experience. In addition, it is based on research I have conducted, including interviews and an extensive review of public records relating to my own case. From what I know of the Washington State Department of Health’s Health Professions Regulatory Boards, there are similar—if not worse—issues, some of which have come into play in the recent high-profile cases of nurses at Seattle Children’s Hospital.  That will be a topic of a follow-up post once I have gathered more information on Washington State.

First, here is some necessary background for people who aren’t familiar with health professions regulation. Each state regulates health professionals licensed to practice in their specific state. The main purpose of health regulatory boards is to ensure safe and competent delivery of health care services. Each health care profession or division is charged with regulating its ‘own kind.’ The health regulatory boards are included in each state’s department of health and are governed by state laws. As in all other states’ rights issues, there is variability in quality and oversight of the health regulatory boards, as well as considerable variation within a state in terms of the different divisions. Thus, the common perception that Boards of Nursing are more likely than Boards of Medicine to be overly strict is backed by independent audits.

In my home state (Commonwealth) of Virginia, a Joint Legislative Audit of the health regulatory boards in 1999 found that “The Board of Medicine does not adequately protect the public from substandard care by physicians. It rarely sanctions physicians for standard of care violations.” The Board of Nursing was twice as likely as the Board of Medicine to suspend licenses or impose other extreme sanctions for the similar practice violations.

This is the highly condensed version of my initial saga with the Virginia Health Regulatory Board. As soon as I graduated/got my nurse practitioner license in the Spring of 1986, I ran the Cross-Over Health Clinic at the Richmond Street Center. This was a multi-service center for Richmond’s burgeoning homeless adult population. I was the sole health care provider, with physician back up by telephone. Several volunteer physicians would also have Saturday morning clinic hours for our more medically complex patients. I had written and co-signed practice protocols in place, which were required for nurse practitioners in Virginia at the time (and still are). By the end of our first year, I had seen over 1,600 patients for 4,000 clinic visits. The clinic’s entire yearly budget–including medications– was $30,000.

In early October 1987, I received a surprise visit by an downtrodden-looking field investigator from the Health Regulatory Board. He said they had received complaints from Richmond physicians about my practice, and specifically about the scope of my practice as a nurse practitioner. At the time there were no other nurse-managed clinics in Virginia, and I soon found out why. Powerful physician groups did not want them. This began an almost nine-month saga of informal hearings with the State Attorney General’s office, times of our clinic being closed by the Regulatory Board, and long stretches of wondering if my license (and livelihood) would be revoked. At the beginning of the investigation I had a six-month old son and my clinic job was my family’s only source of income. To state that this time of being investigated by the Health Regulatory Board was stressful is an understatement. I lost so much weight my doctor advised me to stop breast-feeding my son. My marriage disintegrated. I became disillusioned about nursing in general and took pre-med courses and applied to med school. I became homeless. I seriously contemplated suicide. More than a few times.

But here’s the irony. I’ve gotten past all of that. My son survived early weaning and is in graduate school. I own my home and have a reasonably stable job. I have a happy and rewarding long term relationship. I now like and even love nursing. I have almost completed a book about that time of my life. In researching that specific part of my story I realized I never had any closure on it—as in I never received any documentation about the outcome of their investigation. I knew it had ended, as had my marriage, as had my job. But I had no proof, and I was curious to find the documentation of the investigation into my practice.

So in January of this year I sent an e-mail inquiry to Jay P. Douglas, RN, MSM, CSAC (that means, I believe, that she is a certified substance abuse counselor and a nurse midwife), who is the current Executive Director of the Virginia Board of Nursing. I briefly explained who I was, that I was writing a book and wanted to get copies of the records/documentation of the investigation of my nursing license. I didn’t hear back from her, so after a month I called her office. It was lunchtime, but the woman who answered the phone happened to know about my case, as she had typed up my reports back in 1988 (really—strange things like this have happened to me with this book project.) She said she didn’t see why I couldn’t have copies of my own report, but that she’d have to defer that decision to Jay P. Douglas. She told me that Frank M. Cody was the Assistant Attorney General who had investigated my case, and that they had closed the case in May 1988 without a hearing, for insufficient evidence. She added that they now try to hire more qualified field investigators than what I’d had—that back then they hired former food and/or rat control inspectors.

I got a letter dated 2-4-11 from Jay P. Douglas stating, “Please be aware that according to section 54.1.2400.2 of the Code, any reports, information, or records received and maintained by any health regulatory board in connection with possible disciplinary proceedings, including any material received or developed by a board during an investigation or proceeding, shall be strictly confidential. A board may only disclose such confidential information pursuant to an order of a court or competent jurisdiction for good cause arising from extraordinary circumstances being shown. Therefore, I am unable to comply with your request.”

In a follow-up telephone conversation I had with her (very civil conversation by the way), Ms. Douglas said that she had sought advise on this from the Virginia Attorney General’s Office. I pointed out that I wasn’t asking to know individual identifiers of who said what about my practice, but then she said that since I wasn’t a Virginia State resident now, she couldn’t release any information. So as of this writing I still have no written documentation that my case was ever resolved, much less what the ‘case’ really involved to begin with. It makes me wonder what they have to hide. It makes me wonder who regulates the health regulatory boards in our country.

Complications/ September 28, 2010

Yesterday I started reading Atul Gawande‘s book Complications: A Surgeon’s Notes on an Imperfect Science. It is good and I briefly considered taking it with me to Virginia to read while I am caring for my Dad. The cover photograph is a bit disturbing to flash around in a hospital waiting room though. I decided to take something more soothing and distracting, so Dicken’s An Uncommercial Traveler is accompanying me instead. His chapter “Nurse’s Stories” has given me the idea to tell my father ghost stories when he’s in the hospital.
I have read all of Gawande’s recent New Yorker essay: “Letting go: what medicine should do when it can’t save your life” (available at Gawande’s website: http//gawande.com). His main point in this article is that US doctors–and US patients— just aren’t very good at “knowing when to stop” expensive treatments even when the benefits aren’t clear. What interested me the most was his reference to a study of Medicare patients with heart failure who I assume were randomized to either conventional or hospice care. The patents in hospice care lived on average 3 months longer than the conventional care patients (and I also assume with better quality of life). That study finding may come in handy this next week in discussions with my Dad and with his doctors. Gawande discusses how the tough ‘breakpoint discussions” (when to stop fighting for time/life) between patients and doctors aren’t done very often because the discussions take time and aren’t reimbursable/billable activities. I also think it is because doctors often view these discussions as failures because they are hard-wired for curing and not for caring. I am interested to find out how my Dad’s doctors handle this–and how my Dad and I will handle it. A difficult conversation or series of conversations. My Dad told me last night he’s getting tired more easily and he hopes the cardiac surgeon can fix that soon.