How the Internet Can Benefit Older Americans

On April 24, 2013, the FCC will host a free Senior Digital Literacy Day seminar, "How the Internet Can Benefit Older Americans."



Seniors, and those who work with and/or care for seniors, are invited to attend and learn about how Broadband (high speed Internet services) can benefit older Americans. Panelists, including representatives from the FCC, communications companies and non-profit organizations will focus on the many ways the Internet can benefit seniors, with emphasis on its safe and secure use. The seminar will include interactive demonstrations of electronic devices, such as cell phones, tablets, iPads, desktops and e-readers, and user-friendly computer programs that can benefit Seniors.



I was pleased to see the announcement for this seminar.  Substantially mounting evidence is demonstrating the benefits of both social media and patient decision aids.  But those who use the most health care and stand to benefit the most from these interventions are precisely the ones least likely to have the digital connectivity habits necessary to facilitate effective social media and patient decision aid usage.  Check out, for example, this chart from a recent Deloitte report.

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Scripps Mercy Changes Course and Agrees to Continue Treatment for Kesell Macias

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Challenges of Surrogate Decision Making

I am excited to be a part of an upcoming Geisinger Health System Conference, "On Another's Behalf: The Law, Ethics, and Challenges of Surrogate Decision Making" on April 10.



While not the focus of this conference, Geisinger is well-known for its ProvenCare program.  This program features three key elements: (1) a strict reliance on evidence-based standards in medicine, (2) a fixed-price financial mechanism to pay for certain procedures, and (3) patient engagement.  Geisinger is often mentioned as a "model" for healthcare reform.

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New Case - Kesell Macias v. Scripps Mercy Chula Vista

On Wednesday, Scripps Mercy Chula Vista Hospital informed the
family of Kesell Macias that they will remove him from life support
against their wishes.  The hospital released this statement: 

When we have a critically ill patient, we provide all the care and
services that are appropriate as ordered by the patient’s physicians. The best
interests of the patient guide our physicians and caregivers in these
circumstances. We recognize that these situations are always extremely
difficult and sad for the families involved.

When the patient’s condition indicates that a course of treatment
is medically ineffective, then the physician may determine that this treatment
should not be provided or should be discontinued. Under such circumstances
other effective care is continued.  For example, when life-saving care is
discontinued, we still provide comfort care and pain management.

One of the avenues available to the physician in these difficult
situations is to seek the counsel of the medical staff’s bioethics committee,
to which the physician can present the case for review.  The committee
serves in an advisory capacity and may help the providers explore various
options available to the patient.  The decision on the patient’s care is
ultimately made by the attending physician.”

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The Most Important Conversation: Tools and Techniques for Advance Health Care Planning

On Thursday, April 11, 2013 2:00 PM - 3:30 PM EDT, the ABA and the National Consumer Law Center are hosting a free online webinar:  "The Most Important Conversation: Tools and Techniques for Advance Health Care Planning."



A shift in focus has taken place in advance health care planning from a focus on forms and paperwork, to a focus on meaningful conversations about wishes, beliefs and values.  This webinar will discuss the focus on the care planning conversation and how to document the wishes using tools such as living wills, do not resuscitate orders, multi-state durable power of attorney for health care, and physicians orders for life sustaining care.  This session will discuss many online handbooks and tools available to empower the advance care planning process and to guide health care decision makers.  

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Pot or Not? Minnesota and the Legalization of Medical Marijuana

On Wednesday, April 10, 2013, from 5:30 p.m. to 7:30 p.m., the Minnesota State Bar Association's Food & Drug Law Section will be hosting a free CLE:  "Pot or Not? Minnesota and the Legalization of Medical Marijuana."

Medical marijuana, a controlled substance, is illegal under federal law in the United States.  Possession and distribution is illegal.  Medical marijuana is not approved by the FDA.  Yet, states like California started governing its use as far back as 1996.  Currently, eighteen states approve or regulate its use for medicinal purposes.  Other states, like Maryland, ban its use, but have other policies in place which seem to favor use.  FDA has approved investigational studies of medical marijuana. What is going on here?  Is this politics?  Bad law?  Where is Minnesota in all of this?

This program, sponsored by the MSBA Food, Drug, & Device Law Section and the William Mitchell Health Law Society, will address these questions and the pros and cons of medical marijuana legalization in Minnesota.  Presenters include a physician, a law professor, a criminal defense attorney and a Minnesota State Representative.  They will consider the legal and human aspects related to the use of medical marijuana. 

Program Topics:

• A constitutional review (Gonzalez v Raich) and federalism considerations (Jonathan Kahn, Ph.D., J.D.)


• Criminal defense issues related to the use of medical marijuana (Ryan Pacyga, J.D.)


• Treatment of patients in a state with medical marijuana (Louis Saeger, M.D.) and


• Current medical marijuana legalization attempts in Minnesota (Representative Phyllis Kahn Ph.D., M.P.A.)

Following their presentations, the speakers will participate in a panel discussion regarding of the implications of what medical marijuana legalization could mean for attorneys in Minnesota. Bring your questions!

Speakers:

Dr. Jonathan Kahn, Ph.D., J.D., Professor, Hamline University Law School

Dr. Louis Saeger, M.D., F.A.C.P.M., Interventional Pain Specialist, Midwest Spine Institute

Representative Phyllis Kahn, Ph.D., M.P.A., Minnesota Representative

Ryan Pacyga, Criminal Defense Attorney

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S.B. 675 Probably Not Bad for Texas

I did not expect myself to write in
defense of Texas Senate Bill 675.  But I
want to help provide some clarity in the renewed debate over amending the Texas Advance Directives Act.

Last week, on behalf of the Texas
Medical Association, Dr. Arlo Weltge testified before the Texas Senate Health
and Human Services Committee, against S.B. 675. 
One line in his written testimony caught my eye:  “As always, physicians remain liable for the
decisions they make that are outside of the standard of care. However, S.B. 675
would establish a new standard of care for a physician to provide unlimited
treatment even when unethical and immoral.”

This statement is just plain wrong on
two counts.  First, under Texas Health
& Safety Code section 166.046, physicians are NOT “liable for decisions
they make outside the standard of care.”  In the context of this S.B. 675, the only
review and check on the physician is her own institution’s ethics committee.  If the physician’s institutional committee
agrees with her treatment plan (e.g. to stop life-sustaining treatment over the
surrogate’s objections), then the physician is cloaked with civil, criminal,
and disciplinary immunity.  Consequently,
the physician cannot be sanctioned for breaching the standard of care.  Indeed,
it is precisely this utter lack of meaningful accountability that is the law’s
most serious shortcoming.  

Second, S.B. 675 would NOT “establish
a new standard of care.”  The standard of
care in most places in the United States (except Washington, Arizona, and
Virginia) is not statewide, but nationwide. 
And in the United States, the prevailing custom is to provide aggressive
ICU care when that is what patient’s surrogate requests.  I am not saying that is best or right.  But it
is what physicians do daily.  Rather than
establishing a “new” standard of care, S.B. 675 would cancel the “blank check”
that Section 166.046 now gives Texas physicians to violate the already existing
standard of care.

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Get $5000 for a Better Advance Care Planning Tool

Help develop new approaches to catalyze people toward making their wishes known.  The California Healthcare Foundation is sponsoring a contest to develop solutions that will promote awareness and create a compelling experience that leads to more people communicating their preferences by having a conversation, and completing an advance directive or POLST form.



Submissions should target non-activated people, and help take a person from pre-contemplation to contemplation, or contemplation to action. Submissions should not create additional advance care planning documents; existing forms and

documents can be used.



Proposed solutions may take a variety of forms—including but not limited to a website or mobile app, a physical product, a marketing campaign, or an art installation.  More information is here.

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Facebook Can Help You Die - Better

I will be giving two talks on Thursday in Amarillo, Texas, as part of the 2013 Creative Mind Lecture Series: 

• Facebook Can Help You Die - Better


• Averting Today’s Biggest Public Health Epidemics with Social Media

I developed these presentations from my late 2012 contribution to an American Journal of Bioethics symposium on surrogate decision making in the internet age.  

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Comparing British and American Approaches to Medical Futility

Elizabeth Dzeng has a nice article in today's Independent comparing British and American approaches to medical futility.  Here are two brief excerpts:



"Unlike the US, here in the UK the ultimate decision regarding resuscitation lies with the doctor. The UK General Medical Council stipulates that doctors are not obligated to provide treatments at the end of life, including resuscitation, that would not be clinically appropriate or of overall benefit. . . .  [P]atients may not demand treatments that physicians believe would be futile or would not result in a meaningful prolongation of life."



"I feel that the UK is at a crossroads in much the same way that the US was several decades ago. High profile court cases surrounding patient rights at the end of life catalyzed a set of changes, which led to America’s current system of aggressive treatments at all costs regardless of futility or clinical common sense. I encourage my British colleagues to looking across the pond to the US as a cautionary tale of how these decisions impact our ability to serve in the best interest of our patients."

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Awareness in the Vegetative State - 3 Presentations at University of Minnesota

On April 4 and 5, Adrian Owen from the Brain and Mind Institute at the University of Western Ontario will be making three presentations (also here) at the University of Minnesota.  

• The Search For Consciousness: Detecting Awareness in the Vegetative State

• Detecting Awareness in the Vegetative State: Ethical Challenges and Scientific Solutions

• When Thoughts Become Actions: Functional Neuroimaging in Disorders of Consciousness

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Shared Decision Making and Patient Decision Aids

My latest legal briefing for the The Journal of Clinical Ethics is out:  “Legal Briefing: Shared Decision Making and Patient Decision Aids."  It was a pleasure to write this with Melinda Hexum with whom I prepared the last legal briefing on POLST.  This is one of the most exciting, and soon-to-be revolutionary, developments in health law and bioethics.  



The citation is 24(1) J. Clinical Ethics 2013; 24(1): 70-80.  Here is the abstract:

This “Legal Briefing” column covers recent legal developments involving patient decision aids. This topic has been the subject of recent articles in JCE. It is included in the 2010 Patient Protection and Affordable Care Act. And it has received significant attention in the biomedical literature, including a new book, a thematic issue of Health Affairs, and a recent article in the New England Journal of Medicine. Moreover, physicians and health systems across the United States are increasingly integrating decision aids into their clinical practice. 

Both federal and state laws play a significant role in promoting this expanded use. On the other hand, concerns about liability could stymie development and implementation.

We categorize legal developments concerning patient decision aids into the following five sections:  1. Development of decision aids2.   Effectiveness of decision aids; 3. Federal regulation of decision aids; 4. State regulation of decision aids; 5. Legal concerns regarding decision aids

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Senate Hearing on Bill to Improve Texas Advance Directives Act

The Texas Senate Committee on Health and Human Services held hearings today on S.B. 303, which would improve the "futility" provisions in the Texas Advance Directives Act.  The video is available here.

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Appellate Argument in Carter v. Canada

Today and yesterday, the British Columbia Court of Appeals heard oral argument in Carter v. Canada.  (Vancouver Sun')  Last summer, the B.C. Supreme Court held the criminal prohibition of aid-in-dying to be unconstitutional.  




Here is a telling quote from Chief Justice Lance Finch:  "Life is more than a pulse or a heartbeat or some little electric activity up here [pointing to his grizzled, grey head]. . . . It’s surely the ability to engage in or appreciate the full range of human experience."

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H.R. 1173 - Medicare Coverage for Advance Care Planning

Representative Blumenauer has just introduced H.R. 1173, to amend the Social Security Act to provide for coverage of voluntary advance care planning consultation under Medicare and Medicaid.  Hopefully, his bill will move forward this time.  

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Medical Futility at the American Academy of Neurology Conference

Today is the start of the 2013 Annual Meeting of the American Academy of Neurology.  While there are, of course, ethics sessions on topics such a determination of brain death, there are two that specifically cover medical futility.



Ethical Dilemmas in the ICU

• Program Description:  Neurologists frequently encounter ethical dilemmas when caring for patients with critical brain damage. These clinical problems have also acquired enormous public exposure through the media. In this program, faculty will discuss crucial topics, such as withdrawal of life-sustaining measures and the challenges of communicating with families of severely ill neurologic patients, using practical presentations and interaction with the participants.

• Upon Completion:  Participants should be able to improve their understanding of the concept of futility of care; learn the reach and limits of prognostication in patients with critical brain injury; recognize the risk of creating a self-fulfilling prophecy when predicting a poor prognosis; and acquire new skills to communicate with families when discussing possible withholding or withdrawing of life-sustaining measures.

• Faculty:  Claude Hemphill, III, MD, FAAN, San Francisco (Withdrawal of Life Support: Self-fulfilling Prophecy); Eelco F. M. Wijdicks, MD, FAAN, Rochester, MN (The Family Conference)

Ethics, Clinical Practice, and Challenges in Neurogeriatric Care for the 21st Century

• Program Description:  Faculty will describe and discuss ethical issues related to providing care for the rapidly increasing number of geriatric patients afflicted with incapacitating neurologic disease. The vital role of the neurologist in providing ethically based care for patients with end-stage neurologic disease will be emphasized. Ethical issues related to the practical management of patients with dementia will be discussed. The patient-physician relationship, informed consent and determining decision-making capacity of patients with dementia will be discussed. Pros and cons of obtaining genetic testing for individuals at risk for developing dementia will be discussed. Medical futility as well as evidence-based guidelines appropriate for providing optimal palliative and end-of-life care for patients with end-stage neurologic disorders will be discussed.

• Upon Completion:  Participants should have an increased ability to solve medical-ethical dilemmas confronting the neurologist in providing comprehensive ethical care for geriatric patients with life-limiting neurologic disease; have an enhanced appreciation for obtaining informed consent, respecting patient autonomy, and determining medical decision-making capacity and competence, and the role of advance directives for the patient with dementia; be able to discuss ethical dimensions of diagnostic testing of asymptomatic individuals at risk for developing dementia; and have an enhanced knowledge of perceived medical futility, as well as the evidence base for providing optimal palliative and end-of-life care.

• Faculty:  James L. Bernat, MD, FAAN, Lebanon, NH (The Patient with Dementia: The Patient-Physician Relationship, Disclosing the Diagnosis, Consent, and Advance Directives); Eran P. Klein, MD, PhD, Portland, OR (Testing in Presymptomatic Individuals At-Risk for Neurological Disease); Lawrence J. Schneiderman, MD, La Jolla, CA (Medical Futility); Jerome E. Kurent, MD, MPH, FAAN, Charleston, SC (Ethical Clinical Decision Making: Neuropalliative and End-of-life Care for Patients with End-stage Neurological Disease)

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Free Webinar - Exploring the Nature and Meaning of Medical Futility – A Case Involving a Neurologically Devastated 2 Year Old

The Arizona Bioethics Network continues its webinar
series on March 28 with
"Exploring the Nature and Meaning of Medical Futility – A Case Involving a
Neurologically Devastated 2 Year Old" by Rebecca Volpe, Director of the Clinical Ethics Consultation Service at Penn State College of Medicine.



Here is the program description:  "This presentation will explore the nature and meaning of
futility.  We will address questions such as What is the relationship between
futility and worth? and Are healthcare providers obliged to deliver futile
treatment?  We will discuss futility within the context of a neurologically
devastated 2 y/o whose parents demand continued aggressive treatment despite
the medical teams concerns that such treatment is futile. This presentation is
intended for both pediatric and adult practitioners." 

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Medical Futility Remains Leading Case of Moral Distress among Nurses

Aggressive medical treatment at the end of life is already well documented as a major cause of moral distress among critical care nurses.  Bolstering this research, Annette Browning just published the results of a new survey in the March 2013 issue of the American Journal of Critical Care.    



On a 7-point Likert scale, the following all had intensity scores between 5 and 6:

• Follow family’s wishes to continue life support when not in patient’s best interest


• Follow physician’s orders for unnecessary tests


• Initiate life-saving actions when I think it prolongs death


• Prepare a terminally ill elderly patient receiving mechanical ventilation for surgery to have a mass removed


• Prepare an elderly severely demented patient who is a no code for placement of a gastrostomy tube

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VSED - Call for More Understanding and Discussion

Jim
DeMaine has a new
post on VSED at super blog
KevinMD.  DeMaine regularly blogs at End
of Life - thoughts from an MD.



DeMaine writes that "dying by VSED deserves more understanding and
discussion. . . .  VSED need not be the slippery slope toward euthanasia some might
think, but with the care outlined by ethicists and palliative care
experts like Quill and Byock, there is hope that many options will
be available to us at the end.  After all, it is our life, our body, and
we all have a time to die."



I completely agree, an have tried to clarify the ethical and legal status of VSED here.

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National Healthcare Decisions Day in Minnesota

National Healthcare Decisions Day is about one month away, on April 16, 2013.  Here in Minnesota, two NHDD events are co-sponsored by the William Mitchell College of Law and the Hamline University Health Law Institute.  



There will be two separate free ACP clinics:  (1) one at William Mitchell from 9 am to 7 pm, and (2) one at the MS Society from 1:30 to 7:00 pm. 

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Aintree Hosp. v. James - Appellate Court Permits Clinicians to Stop "Futile" Treatment

A British appellate court has ruled that doctors should be allowed to withhold life-sustaining treatment where it would be “futile” to continue it.  Aintree University Hospital NHS Foundation Trust v David James and Ors [2013] EWCA Civ 65.  I have posted a copy of the Opinion here.



BACKGROUND

As I wrote in December, musician David James suffered complications from cancer.  He was given six minutes of cardiopulmonary resuscitation (CPR) in August 2012 after a heart attack and ended up in a minimally conscious state, although he remained responsive to others.  The medical assessment concluded there was less than one per cent chance of Mr James being discharged from the unit.  



The Hospital applied to the Court of Protection for a declaration that, if James’ condition deteriorated, it need not offer him “futile and burdensome” treatment (cardiopulmonary resuscitation, renal replacement treatment, or invasive support for chronic low blood pressure).  The trust asked for a declaration that James lacked capacity to consent to or refuse treatment of any kind and that in the event of a clinical deterioration it would be in his best interests for certain invasive treatment to be withheld (including CPR).



TRIAL COURT



Mr. Justice Peter Jackson refused the hospital's declaration, stating:  “Although Mr. James’s condition is in many respects grim, I am not persuaded that treatment would be futile or overly burdensome or that there is no prospect of recovery.”  



Justice Jackson continued:  “Although the burdens of treatment are very great indeed, they have to be weighed against the benefits of a continued existence.”  He added that recovery did not mean a return to full health but the resumption of a quality of life that James himself would consider worthwhile.  David James died a few days later, on December 31, 2012. 





APPELLATE COURT

The appellate court ruled that the trial judge had adopted a “too narrow a view of futility."  The trial judge was “wrong to concentrate on the usefulness of the treatment in coping with the crisis and curing the disease… and not also to be concerned instead with whether the treatment was worthwhile in the interests of the general well-being.”



The appellate court further concluded that futility should be judged by whether it secures a therapeutic benefit to the patient. “The treatment must, standing alone or with other medical care, have the real prospect of curing or at least palliating the life threatening disease or illness."  



Under the Mental Capacity Act code of practice, it was “up to the doctor or healthcare professional providing treatment to assess whether the treatment is life-sustaining in each particular situation.”  “Here we were necessarily dealing with a situation where life was ebbing away. In the context, therefore, ‘no prospect of recovery’ means no prospect of recovering such a state of good health as will avert the looming prospect of death if the life-sustaining treatment is given.”

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Healthcare Consent Quality Collaborative

I have not yet had a chance to review all the content, but I wanted to let you know about a valuable new website by the Healthcare Consent Quality Collaborative.  It is collects and organizes Canadian legal and other authority on consent, especially as it pertains to end-of-life decisions.

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National Aging and Law Conference - Call for Proposals

The National Academy of Elder Law Attorneys and co-sponsors of the National Aging and Law Conference invite you to submit proposal(s) to share your knowledge, expertise, and experience at the 2013 National Aging and Law Institute, in Washington, DC from November 7-9, 2013. The theme, this year, is Client Advocacy in Caring Communities.



Do the elder law and aging rights communities have the advocacy skills to ensure our clients will age in a caring community? Making a caring community a reality for our clients is a formidable task at a time when health and long term care systems are out of reach for many, public benefits programs face budget cuts, and the population is aging rapidly. This Institute will provide you with the multidisciplinary skills and knowledge to ensure you can meet your clients’ and communities’ needs holistically.  



The programming will be divided into three tracks:

• Practice that Works -- a “How To” track to improve essential lawyering skills. Examples include hearing advocacy skills, lobbying, client interviewing and communication, evaluating opportunities for impact litigation, negotiation skills, creating elder friendly environments, galvanizing family support effectively and ethically, navigating the range of home and community-based supportive services; drafting documents to promote autonomy and prevent abuse; partnering for systemic change.


• Policy on the Cutting Edge.  Examples include perspectives from movers and shakers from inside the beltway; the status Medicare and Medicaid Innovations Center demonstrations and the CMS coordinated care initiative; the impact of health care exchanges and how they affect Medicare and Medicaid; managed long-term care trends across the states; the latest developments regarding the “improvement standard” and “observation status” under Medicare; Veterans benefits on the hot seat; the politics of Older Americans Act reauthorization.


• Making Caring Communities a Reality for Clients.  Examples include expanding housing options for clients; choosing and paying for the right community; reverse mortgage issues; fair housing and the LGBT community; accommodating special needs and community care options; driving and transportation challenges; combating elder abuse in communities; and ensuring person-centered care in long-term care settings; ensuring patient’s treatment wishes are known and respected across care settings.

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Tyler v. Genesis - Family Sues Maryland Facility for Stopping Life Support without Consent

The family of longtime Baltimore Orioles umpires attendant Ernie Tyler is suing a Baltimore nursing home, claiming that a doctor at the facility cut off life-sustaining care to Tyler without authorization.  (Baltimore Sun)


I have posted a copy of the Complaint here.  The lawsuit, filed Tuesday in Baltimore Circuit Court, alleges that a day after Tyler checked into Genesis ElderCare Long Green Center in February 2011, his attending physician, Kenneth Lindyberg, "terminated necessary medical care, including antibiotics, blood products, medical tests, and medications without Mr. Tyler's permission and without the knowledge or permission of his family."



"The records indicate that Mr. Tyler did not have an advanced directive, and that Dr. Lindyberg knew family members had the sole authority to make decisions about his care," Stefanuca said. "Yet he proceeded to make decisions without their consent."

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Taiwan Promotes Rejection of Futile Medical Treatment

Yesterday, the Taiwan Alliance for Healthcare Excellence teamed up with 19 health groups nationwide to promote rejection of futile medical treatment for terminally ill patients.  (Taiwan Today)



“Patients can only die peacefully when medical teams help family members let go in the face of death, rejecting further pointless treatment,” TAHE President Lien Jui-meng said.  Huang Sheng-jean, superintendent of National Taiwan University Hospital’s Jinshan branch, said futile medical care serves only to protract the process of dying. “It’s unethical and will not enhance the satisfaction of family members nor reduce medical malpractice suits.”  According to former Health Minister Yaung Chih-liang, out of annual National Health Insurance expenses of NT$500 billion (US$16.8 billion), NT$170 billion is used for futile care. He suggested that choosing palliative care would provide better treatment for patients and cut medical expenditures.  



A separate new story reports that "medical teams will hold two one-hour sessions with relatives when decisions need to be made about the final stage of life related to terminally ill patients. The more relatives and close family members come to understand the medical teams' explanations, the less likely medical disputes will occur."  Taiwan News (quoting Huang Sheng-jean).

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Legal Debate Over Doctor-Assisted Suicide

I am delighted to be a guest on the Diane Rehm show tomorrow.  



Description

• Montana’s House of Representatives passed a bill that could imprison doctors for assisting in suicide.  Legislation is pending in other states to make it legal.  A panel joins Diane to discuss the legal and political debate over end-of-life issues.

Guests

• Thaddeus Pope - director of the Health Law Institute and associate law professor at Hamline University School of Law.


• Dr. Joanne Lynn - geriatrician, hospice physician and director of the Altarum Institute Center on Elder Care and Advanced Illness.


• Dr. Krayton Kerns - doctor of veterinary medicine and Republican member of the Montana Legislature.


• Barbara Coombs Lee - president, Compassion & Choices, and chief petitioner of the 1997 Oregon Death with Dignity Act. She was a nurse and physician assistant before becoming a private attorney.

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Nurse Refuses to Perform CPR on Resident

This assisted living facility apparently has a policy that forbids staff from performing CPR on residents who stop breathing.  This really annoys this 911 dispatcher.

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Minnesota, like Michigan, to Require Futility Policy Transparency

Minnesota Senator Nienow has reintroduced a bill from last session that would require hospitals to disclose their medical futility policies when they might be applied to a minor.  Michigan has introduced similar legislation.  

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