100-page report outlines barriers to quality care and highlights AG’s role
More patients die in institutions than at home among family and friends. Too many patients die in pain, and not enough of them experience peace and comfort in their final days. An untold number of people put their final wishes in writing, only to have them ignored.
To those who seek to improve the quality of care at the end of life, these realities are tragedies, the weight of which is measured by suffering and prolonged grief. While the humanity of the situation is not lost on Oklahoma Attorney General Drew Edmondson, it is the pragmatism of a lawyer’s mindset that leads him to look at the issue more practically.
Failure to control pain or to provide health care in accordance with a patient’s wishes is a matter of consumer protection, according to Edmondson. He says he hopes the 49 other attorneys general in the United States will see matters the same way. To persuade them, Edmondson, the outgoing president of the National Association of Attorneys General (NAAG), released a 100-page report titled Improving End of Life Care: The Role of the Attorney General. The report cites the testimony of experts and outlines the barriers to good end-of-life care. It offers glimpses into the lives of those who have watched a loved one suffer needlessly and delineates a state attorney general’s role in making sure the dying are protected.
"I saw [improving end-of-life care] as a consumer protection issue after hearing the statistics," Edmondson says. "More people would prefer to die at home, yet more people will die in hospitals and nursing homes, and without pain control, many will suffer," Edmondson says. "I also freely admit that I was influenced by my wife, who is a social worker."
Linda Edmondson, a social worker specializing in end-of-life care, and others helped gather research, anecdotes, and other data during the year-long process. What they came up with provided a snapshot of both the good and the bad of dying in America. Edmondson used his term as president of the NAAG to focus on the legal issues surrounding end-of-life care and what attorneys general can do to ensure state and federal policies meet the needs of patients and their families.
"When asked about their expectations for end-of-life care, most people share the same concerns," Edmondson says. "We want to be free from pain, we want to be at home with family and friends, and we want our health care wishes known and honored. Despite these expectations, many Americans die in pain, isolated in some type of care facility, while their family fights to have their advance health care directives honored. I wanted to explore what state attorneys general could do to help stop this trend."
The National Hospice and Palliative Care Organization (NHPCO) in Alexandria, VA, is an enthusiastic supporter of Edmondson’s efforts. "Attorneys general are in a unique position to bring parties together," says John Keyserling, vice president of public policy at NHPCO. Keyserling and other hospice leaders hope Edmondson’s report and his work as NAAG president will lead to better communication between state leaders and hospice leaders. From these improved communications, law enforcement, physicians, elder care facilities, and others can emerge with a common expectation of quality end-of-life care.
The most evident conflict among the parties to the issue is between law enforcement officers trying to stem the misuse of opioid drugs and physicians who prescribe these drugs to manage patient pain. Fear of legal action has prompted many physicians to cut back on prescribing opioids. "When Asa Hutchinson [administrator of the federal Drug Enforcement Agency] tells me that it is not the agency’s intention to target physicians who are managing patients’ pain, I believe him," says Edmondson. "Now, that needs to be told to the doctors and the local and state law enforcement."
Edmondson’s report is designed to serve as a resource for attorneys general as they work to improve care at the end of life in their own states. The report contains information gathered during Edmondson’s year-long tenure and details of what attorneys general are doing state by state to improve and promote end-of-life care. "This is one of the issues that has to be on their radar screens," Edmondson says of his colleagues.
Three conferences sought testimony
Edmondson’s initiative revolved around a series of three listening conferences designed to discuss issues ranging from pain management to medical standards and education. These conferences focused on three end-of-life care issues: pain management, advance care planning, and professional competence. Modeled after congressional hearings, Edmondson and his colleagues listened to testimony and asked questions of experts and consumers.
The first panel, "Will My Pain Be Managed?," addressed the legal barriers to effective pain management. The second, "Will My Wishes Be Known and Honored?", examined the legal barriers to effective communication and implementation of consumers’ expectations for end-of-life care. The third panel, "Will I Receive Competent Care?", considered the impact of state agencies on education and regulation of health care professionals in the effective provision of end-of-life care.
"I did not want this initiative to be just legal theory," Edmondson said. "This is real life for real people. The physical pain and emotional distress are real. The response from attorneys general has been impressive, and I believe we have taken significant steps in the right direction."
Some state legislatures and licensing boards are trying to encourage better pain management and address physician fears about being targeted for violating regulations governing prescription of narcotics. But there still is a "significant gap between policy and practice," he concluded.
Edmondson’s research revealed what end-of-life care advocates have been saying for years: Physicians, nurses, and other providers do not have enough training to adequately care for the dying. State leaders who want to improve end-of-life care should do the following:
- Make aging issues a higher priority and support initiatives that improve conditions for the aged.
- Help encourage policies that improve consumer knowledge of end-of-life options, such as advance-care planning, and that encourage their use.
- Set state targets for training providers in palliative care, and find funding for this training.
- Require hospitals and nursing homes to establish palliative care services.
- Rewrite laws to encourage greater flexibility in the care of dying patients.
Leaders also can support major statewide pilot projects and coalitions that coordinate health care services with the aim of improving end-of-life care.
Attorneys general can pursue many steps. For instance, they can:
- Issue opinion or advice letters clarifying end-of-life issues and distribute them widely.
- Make available simple guides on advance-care planning.
- Send liaisons to hospitals, nursing homes, and other such settings to discuss and clarify end-of-life issues.
- Post relevant end-of-life information for consumers, attorneys, and clinicians on their Web sites.
Attorneys general can even push legal action when appropriate. For example, cases can be pursued against a facility that knowingly disregards a dying person’s advance directive and even against physicians who fail to provide adequate pain management.
Lawmakers and attorneys general working together can write new legislation that helps doctors better tend to dying patients. "The attorney general ought to be seen as an ally of consumers who want their voices heard and of those caring for patients near the end of life," wrote Maryland Attorney General J. Joseph Curran and Maryland Assistant Attorney General Jack Schwartz in the report. "The visible engagement of the attorney general and his or her staff will itself help change the atmosphere for the better," they wrote.
Edmondson says an attorney general can take the following steps to promote high-quality end-of-life care:
- Render opinions that affect the behavior of law enforcement agencies, local judiciaries, and health care providers.
- Seek to bring parties together and promote a dialogue.
- Take on cases where consumers were harmed by poor care.
Curran and Schwartz echoed those very sentiments in the report. They listed the following as AGs’ responsibilities with regard to end-of-life care:
• Interpreting and explaining current law.
At best, the law provides a clear-cut explanation of how people are supposed to act. Often, however, laws can seem to be at odds with patient rights. An attorney general can serve as an authoritative interpreter of the relevant law. For example, an AG can issue an opinion or advice letter about a clinical issue that has been brought to the attention of the AG’s office and can make his or her opinion widely known within the state to affect the actions of other providers in similar situations.
AGs also can help consumers understand how to do advance care planning by distributing plain-language literature that explains the process and includes specific information about designating a proxy or declaring one’s treatment preferences, the Maryland attorneys wrote.
• Giving advice to state agencies.
AGs have a responsibility to not only give technically sound legal advice to policy-making agencies; they also have a responsibility to put both the law and its impact on those affected in a context that can be understood by agencies that must carry out policies based on the law. "Good lawyers do more than give clients technically sound legal advice," Curran and Schwartz wrote. A lawyer may refer not only to law but also to other considerations such as moral, economic, social, and political factors that may be relevant to the client’s situation.
They used the following example: The agency that licenses and inspects nursing homes can significantly affect the quality of end-of-life care for nursing home residents. The regulations that the agency enforces ought to be applied with sensitivity to the special circumstances of dying patients. For instance, the attorney general can advise that a regulation calling for certain minimal nutritional levels, which makes sense when applied to the nursing home population in general, need not be construed to mandate the use of feeding tubes in dying patients, for whom such intrusive efforts achieve no benefit.
• Enforcing criminal law.
An attorney general should promote the idea that legitimate law enforcement goals should be pursued without adversely affecting the provision of quality end-of-life care. This can be done through enforcement of criminal laws or by advising other law enforcement agencies. For example, systems for monitoring narcotic prescriptions should be assessed to determine whether they are having an adverse impact on legitimate physicians by causing them to refrain from prescribing opioids out of fear of prosecution.
According to Curran and Schwartz, the attorney general should convene pain management experts, police, prosecutors, and a medical examiner for a screening tracking system. The attorney general and palliative care experts could present a case that would prompt a homicide investigation, when there is, in fact, a legitimate use of narcotics. "It is facile, and often incorrect, to suspect wrongdoing based solely on the level of morphine or similar drug in a patient’s bloodstream after death, and a high-profile investigation can have a destructively chilling effect on physicians generally," they wrote. "An attorney general could ensure an expert review of the facts before matters are made public."
• Engaging in legislative advocacy.
While attorneys general do not set the legislative agenda, they can serve as advocates for legislation that would improve end-of-life care. Their perceived expertise in the matter may also cause them to be sought after by lawmakers to help draft legislation. For example, if legislation is needed to ensure physicians’ orders for end-of-life care are honored in any care setting, attorneys general could help draft the appropriate legislation and advocate for it in the legislature. Also, states would benefit from an ongoing advisory body led by the attorney general to monitor trends in end-of-life care and recommend changes in law and practice.
So where do hospices fit in? Hospices must be active partners in an attorney general’s initiatives to improve end-of-life care and the protection of terminally ill consumers, Edmondson says. Attorneys general should convene stakeholders in the movement to improve end-of-life care, including hospitals, hospices, physicians, nurses, and law enforcement, he says. Aside from ironing out differences, these groups should hammer out a plan for educating their constituents and the public.
Failure to control pain or to provide health care in accordance with a patients wishes is a matter of consumer protection, according to Oklahoma Attorney General Drew Edmondson. He says he hopes the 49 other attorneys general in the United States will see matters the same way.
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