AGs undertake EOL initiatives, education programs
Although Oklahoma Attorney General Drew Edmondson focused his year-long presidency of the National Association of Attorneys General (NAAG) on improving end-of-life care and urging his colleagues to take a more active role in protecting terminally ill patients, several of his colleagues are at the forefront of changing state policies and affecting provider and consumer behavior.
In his 100-page report, Improving End of Life Care: The Role of the Attorney General, Edmondson and the NAAG praised several states for their efforts to educate the public, change provider behavior, advise state agencies and lawmakers, build coalitions, and prosecute those who abuse dying patients or ignore their wishes.
What follows is the report’s description of some of the states’ best practices:
ARIZONA
The Arizona attorney general has focused on public awareness, education, and community programs promoting advance directives. After reviewing the law governing health and financial powers of attorney, the Arizona AG’s office created care planning documents that are printed in booklet form. These booklets help consumers prepare durable health care power of attorney, a living will, a pre-hospital medical directive or do-not-resuscitate order, a durable mental health care power of attorney, and a durable general power of attorney.
Consumers can plan their own health and financial futures with these documents, which are presented in an easy-to-read format, including instructions on how to create legally valid forms.
In addition to creating and distributing these forms, the Arizona attorney general holds community outreach and education seminars. This year the AG’s office has already held 16 seminars on life care planning, presented by the office’s Elder Affairs Program. The presentations are made available on the attorney general’s web site at www.ag.state.az.us, where consumers can download them.
CONNECTICUT
Attorney General Richard Blumenthal has promoted the concept of Physician-Assisted Living (PAL) in Connecticut, a joint effort between his office, the Hospice Institute for Education Training and Research, and the Connecticut Bar Association.
PAL is an instrument designed to help medical professionals communicate with their patients about their needs. The PAL initiative allows individuals to express a preference for hospice care before the onslaught of pain and depression. It employs a document similar to the living will and power of attorney for health care instruments, called the Notice for Desire of Hospice Care.
Interviews conducted by the institute with hospice families during the last six years show that PAL has contributed to fewer days lost from school and work, fewer emergency room visits, and less depression associated with hospice care.
HAWAII
The Kokua Mau (a Hawaiian phrase meaning "continuous care") project is a statewide campaign backed by a 260-member coalition of agencies, health care providers, and community groups. The project was born out of a 1998 Blue Ribbon Panel on Living and Dying with Dignity, convened by Hawaii’s governor. The panel concluded that Hawaiians lacked or were limited in the following:
- sufficient access to their own rich and varied spiritual and cultural resources;
- public and professional awareness about good end-of-life care;
- use of advance directives;
- use of hospice;
- adequate pain control.
The coalition was instrumental in the 2002 passage of a state law eliminating duplicate prescriptions for physicians when prescribing controlled substances for pain. This legislation was a collaborative effort between the Cancer Pain Initiative and Hawaii’s Drug Enforcement Agency.
State officials also are trying to raise awareness about end-of-life issues. Speakers were provided with curriculum materials and handouts regarding planning ahead, talking about preferences with others, controlling pain, and acknowledging and respecting cultural differences. Presentations were made in a variety of settings, including long-term care facilities, caregiver conferences and meetings, senior centers, legal aid forums, regular meetings of retirees, clubs, military units, and businesses.
In a program coordinated by St. Francis International Center of Healthcare Ethics in Honolulu, health care workers were trained in pain management at 12 long-term care facilities and began tracking pain as a vital sign.
The Uniform Health Care Decisions Act combined into one statute the stipulations of the living will and durable power of attorney for health care; provided for surrogate decision-making in the case of the "friendless" patient; mandated safeguards for patients; and established penalties for noncompliant health care providers.
The Advance Health Care Directive Act of 1999 required the Department of Motor Vehicles and the State Civil Identification Branch to ask all applicants to indicate whether they had an advance directive. In March 2003, 26% of all those renewing licenses indicated they had an advance directive.
MAINE
Maine laws give citizens the opportunity to express their wishes regarding the type of care they want to receive once they no longer have the capacity to make decisions. The laws are not limited to end-of-life care decisions and can include pain management or other medical care decisions. A format for the health care directive is provided in the state statute. In the absence of a written health care directive, the Maine statute permits surrogates to carry out the wishes of the individual that were expressed while competent.
In 2002, representatives from the Office of the Attorney General, the Department of Human Services, and the Bureau of Elder and Adult Services began reviewing deaths and cases of serious bodily harm where abuse and neglect of elderly and vulnerable adults are suspected, including cases where providers may have failed to provide reasonable and appropriate end-of-life care. The review will serve as a catalyst for system changes aimed at improving response to victims and preventing similar outcomes in the future.
Assistant attorneys general assigned to the medical boards assist in reviewing complaints regarding the appropriateness of end-of-life care to ensure competent care is rendered. This is part of the office’s policy of trying to make sure patients have access to appropriate, affordable medications.
The Maine attorney general has also been involved in litigation that would affect end-of-life care. The office’s Healthcare Crimes Unit actively investigates providers of MaineCare, the state’s Medicaid system, who abuse or neglect patients. The Healthcare Crimes Unit can initiate prosecutions when warranted. A recent case included an end-of-life care issue. At the conclusion of the investigation, a referral to the medical examiner’s office and the licensing board was made.
MARYLAND
In the area of pain and other symptom management, the Maryland Attorney General has worked to clarify legal issues. Health professionals and the public were notified that nursing homes have a regulatory obligation to provide medically appropriate pain management for terminally ill residents, and that Maryland’s Assisted Suicide Act does not apply to medically appropriate measures to relieve pain and other symptoms. Physician educators were enlisted in the development of a web-based training program for medical residents, including a statement from the Attorney General’s Office reassuring physicians that use of opioids for appropriate symptom relief will not result in prosecution.
The office also has helped draft legislation and has analyzed and defended current laws that protect the rights of individuals, including legislation that requires Medicaid applicants to give special attention to advance directives, do-not-resuscitate (DNR) laws regulating the practices of EMS workers, and laws exacting penalties for nursing homes that ignore DNR orders.
NEW MEXICO
In October 2002, the New Mexico Health Policy Commission completed a report on end-of-life health care issues in the state. The report, which was requested by the state legislature, involved a myriad of professionals, including two attorneys from the New Mexico Office of the Attorney General.
The report included a study of pain management in the state that raised several critical areas of concern:
- the need for more education about pain and pain management for both patients and health professionals;
- limited knowledge about the etiology of pain;
- limited knowledge of the actual risks and benefits of opioids in the treatment of pain and effective pain management by health professionals;
- lack of attention given to pain management in the curricula of the professional schools;
- the fact that licensure requires no competency in pain management;
- fear among health care providers that they make themselves vulnerable to discipline or legal action when they prescribe opioids and other narcotics for pain;
- the need for the creation of a State Advisory Council on Pain Management, which would be responsible for instituting statewide education efforts for both providers and patients.
OHIO
Building upon the office’s Senior Protection Initiative in May 2003, Attorney General Jim Petro created the Child and Elder Protection Section of the Ohio attorney general’s office in an effort to expand protections for Ohio’s most vulnerable citizens.
The new section, composed of presently existing units from the Corrections Litigation, Crime Victims, and Consumer Protection sections of the attorney general’s office, along with programs currently housed in the Ohio Bureau of Criminal Identification and Investigation, will assist local prosecutors in investigating and trying elder abuse cases, as well as Internet and computer crimes against the elderly.
The office also participates in a program that matches volunteer lawyers from the office with low-income senior citizens or people facing end-of-life issues who are in need of legal services in the area of preparation of wills, durable powers of attorney for health care, and general powers of attorney.
OKLAHOMA
Attorney General Drew Edmondson assigned an assistant attorney general to act as a liaison with the state coalition on end-of-life care for the past four years. This assistant has worked with the Oklahoma Association on Health Care Ethics and the Robert Wood Johnson Foundation-funded Alliance for Better Care of the Dying, in addition to making presentations to state agencies related to health care and to the public on end-of-life care.
As a result, the current governor and immediate past governor endorsed Palliative Care Week in Oklahoma and stood side by side with Edmondson to inform Oklahomans of the importance of advance health care directives.
Recently, the office’s Medicaid Fraud Control Unit prosecuted a nurse for felony caretaker abuse and misdemeanor verbal abuse by a caretaker. The nurse worked the evening shift at a nursing home. One of the patients complained about treatment from the nurse several times. The person holding power of attorney for the patient placed a video camera and monitor in the patient’s room and advised the nursing home administrator of his action. The administrator, likewise, notified the staff of the camera recording events in the patient’s room. Amazingly, the nurse continued to treat the patient in an abusive manner. In addition, an investigation revealed that the nurse had failed to administer pain medication on several occasions during her shifts.
The nurse waived a preliminary hearing and entered a guilty plea and received a five-year deferred sentence. A condition of her probation is to refrain from employment as a caretaker for the elderly. Her nursing license also was suspended.
Although Oklahoma Attorney General Drew Edmondson focused his year-long presidency of the National Association of Attorneys General on improving end-of-life care and urging his colleagues to take a more active role in protecting terminally ill patients, several of his colleagues are at the forefront of changing state policies and affecting provider and consumer behavior.
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