CA taking steps to improve access, care
Law change shows concern for end-of-life care
Like most states, California does not stand out as a champion of end-of-life care. Public policy, health care traditions, and social attitudes have prevented the state’s terminally ill patients from gaining access to palliative care and end-of-life care as a whole.
Last Acts, a coalition supported by the Robert Wood Johnson Foundation that seeks to improve end-of-life care, gave California average to poor marks in its recent state-by-state assessment of end-of-life care. It noted that hospice care is not widely used in the state.
"Even though hospice is considered the gold standard’ of end-of-life care, only 24% of people over 65 who died in the state used hospice in the last year of life," the study said. "Moreover, the median length of stay in hospice care in the state was 24 days, which is well below the 60 days considered necessary for the maximum benefit from the program."
Citing its poor use of hospice and short length of service, Last Acts gave California a grade of D.
In January, however, new legislation took effect signaling state lawmakers’ willingness to consider removing barriers that prevent good end-of-life care. It used to be that hospices were allowed to care for patients in their homes and other facilities in which terminally ill patients reside. That included residential care facilities for the elderly (RCFEs), sometimes referred to as board-and-care homes.
For years, California’s Department of Social Services said it was fine for hospices to care for dying patients at home or in RCFEs. But the agency interpreted California law to mean dying patients could not transfer their hospice benefit from one venue to another.
That meant patients whose condition required more care than caregivers and hospice workers could provide at home were forced to pick from two unpalatable options: voluntarily give up their hospice benefit until they become established residents of an RCFE, resulting in a disruption of hospice service, or remain at home where they could not be cared for adequately.
"I don’t think that was the intention of the law when it was adopted years ago," says Judy Citko, JD, executive director of the California Coalition for Compassionate Care in Sacramento. "This was cleanup legislation."
"This guarantees there will be no disruption of services," says Margaret Clausen, executive director of the California Hospice and Palliative Care Association in Sacramento, which lobbied for the change in the law. "Patients do not have to choose or go through the rigamarole of giving up their hospice benefit to get into an RCFE and then re-establish their hospice benefit."
In one respect, the change in California law represents a minor move, the closure of a loophole that led to a misinterpretation of prior legislation. But it also indicates the state’s willingness to improve end-of-life care by recognizing barriers to hospice care and good end-of-life care.
As other end-of-life advocates seek to improve care in their own states, identifying policies and laws that stand between dying patients and hospice care is one place to start. According to Last Acts, state advance directive policies and pain management policies are responsible for many of the access problems dying patients face.
State advance directive policies
According to Last Acts, some states’ laws include confusing language or create bureaucratic hurdles that make it difficult for people to express their preferences or to designate appropriate surrogate decision-makers. This often translates into late referrals to hospices, or no referrals altogether.
Despite federal legislation that encourages the use of advance directives, barriers still remain. "Advance directive" is a general term used to describe two types of documents: living wills and medical powers of attorney. Both are written instructions for care in the event that a person is not able to express his or her medical wishes. According to Last Acts, 47 states and the District of Columbia have laws authorizing living wills. Only Massachusetts, Michigan and New York do not.
Advance-directive policies are determined at the state level, but Congress enacted the Patient Self-Determination Act in 1991, which requires all health care facilities receiving Medicare or Medicaid reimbursement to inform patients of their right to make choices about the treatment they receive and to prepare advance directives.
In addition, most health care facilities, including nursing homes and rehabilitation centers, are required to have a "Do Not Resuscitate" order policy in place if they wish to be accredited by the Joint Commission on Accreditation of Healthcare Organizations.
With the success of its lobbying efforts to get the RCFE law changed, the California hospice association has set its sights on amending a law that requires RCFE workers to call 911 when a patient is dying, regardless of whether the patient is cared for by hospice or if the patient has an advance directive stating the desire not to be resuscitated.
In many states, calling 911 for terminally ill patients residing in nursing homes or residential facilities is a common if not required practice. In turn, emergency medical technicians are obligated to attempt resuscitation.
"This is not consistent with the hospice philosophy," says Clausen.
To protect patients from unwanted resuscitation efforts, many states have authorized "non-hospital" (or out-of-hospital) DNR orders. These are orders signed by a physician that can be presented to emergency medical personnel. That allows them not to begin resuscitation.
According to Last Acts, 44 states and the District of Columbia have authorized the use of non-hospital DNR orders.
Still, most people do not complete advance directives or DNR orders. A study published in 2002 estimated the overall prevalence of advance directives to be 15 to 20% in the general population.1 A 2002 study of nursing home residents found that only 20% of them had living wills, and 48% had DNR orders.2
In the struggle to ensure hospice patients’ wishes are honored, California hospice advocates are trying to persuade lawmakers to include additional language in the RCFE legislation that would allow RCFE staff not to call 911 when a hospice patient takes a turn for the worse.
The proposed legislation would require that the following conditions be met:
- The RCFE resident is receiving hospice service from a licensed hospice agency.
- The resident has completed an advance directive requesting that resuscitative measures be forgone.
- The RCFE has documentation showing that staff have been trained regarding the expected course of the resident’s illness and the symptoms of impending death.
All states have laws addressing the use of controlled substances. While some policies are effective, others create barriers to good pain management. Hospices are well aware of the difficulties of getting physicians to prescribe adequate pain medication.
A state’s policy can influence a physician’s knowledge about pain management, his or her ability to prescribe adequate doses of pain medication, and the level of fear regarding sanctions associated with the appearance of overprescribing drugs. All states have laws addressing controlled substances, such as opioids, which are primarily aimed at decreasing the chance that these drugs will be misused.
Certain laws, for example, allow a physician to be sanctioned based on the number of doses in a prescription or the length of the prescription. However, both standards have no clinical basis and do not take into account the higher doses that some patients may need.
In July 2000, the American Bar Association recognized the numerous legal barriers to good pain management and adopted a resolution urging state, federal and territorial governments to remove legal barriers to high-quality pain and symptom management and to support the right of all patients to receive effective pain and symptom evaluation, management and ongoing monitoring, as part of basic medical care.
In 1998, California found itself at the center of the pain management debate. The sanctioning of a physician for poor pain management has led other physicians to recognize the importance of prescribing adequate pain medication.
California’s changes in this area can be traced to 88-year-old William Bergman, who was terminally ill with lung cancer when he was admitted to Eden Medical Center in northern California. The elderly man complained of intolerable pain. On a pain scale of 1 to 10, nurses noted on his chart that Bergman reported the intensity of his pain as a 10. Bergman remained in the hospital for five days under the care of an internist who did little to address the dying patient’s pain. He was later sent home with inadequate medication. Although Bergman was able to receive more aggressive pain treatment from another physicians after his hospital discharge, he died at home soon after.
Bergman’s family filed suit against the internist, claiming elder abuse and negligence on the part of the physician for allowing the man to suffer in the days leading to his death. A San Francisco jury awarded $1.5 million to Bergman’s family, agreeing with the plaintiff that Wing Chin, MD, failed to address the patient’s pain adequately.
Bergman’s case inspired the California legislature to pass Assembly Bill 487, signed into law Oct. 4, 2001. The new law requires that physicians who fail to prescribe, administer, or dispense adequate pain medication be charged with unprofessional conduct and be investigated by the California Medical Board’s Division of Licensing. Physicians found guilty of undertreating pain must complete a pain-management education program.
References
1. Schwartz CE, Wheeler HB, Hammes B, et al. Early intervention in planning end-of-life care with ambulatory geriatric patients. Arch Intern Med 2002; 162:1611-1618.
2. Degenholtz HD, Arnold RA, Meisel A, Lave JR. Persistence of racial disparities in advance care plan documents among nursing home residents. J Am Geriatr Soc 2002; 50:378-381.
Like most states, California does not stand out as a champion of end-of-life care. Public policy, health care traditions, and social attitudes have prevented the states terminally ill patients from gaining access to palliative care and end-of-life care as a whole.
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