HCFA to hospitals: Tell patients about pain management options
Government backs new rights
In the cacophony that is the health care debate, the voices of those who advocate better care for the dying seem to be rising above the politics and rhetoric. Case in point: A new federal ruling requires that all patients must receive complete information about their right to adequate pain treatment.
In recent months, federal lawmakers have debated what is commonly called the patient’s bill of rights — a laundry list of reforms aimed at giving managed care consumers greater choice and holding HMOs more accountable for the care they provide. But end-of-life advocates quietly struck a victory for patients’ rights in July when the Health Care Financing Administration (HCFA) ruled that providers give patients information about their rights to adequate pain treatment as part of its conditions of participation (CoP).
The ruling, which introduces new patient’s rights conditions of participation, appears in the Federal Register (1999; 64:36,069-36,089), and became effective Aug. 2. As a whole, the regulation describes the conditions of participation that hospitals must follow in order to participate in both Medicare and Medicaid programs.
The CoP sets forth these six standards that HCFA says will ensure minimum protections of each patient’s rights:
• The right to notification of patients’ rights.
• The exercise of their rights in regards to care.
• The right to privacy and safety.
• The right to keep records confidential.
• Freedom from the use of restraints unless clinically necessary.
• Freedom from seclusion and restraints in behavior management unless clinically necessary.
When the interim final rule was published earlier this year, end-of-life care and patients’ rights advocates argued that the rule needed to emphasize full patient participation in his or her care. Furthermore, those who submitted comments to the rule suggested the rule require patients to sign-off on treatment and that providers should acknowledge the patient’s right to refuse treatment.
HCFA agreed with those who pushed for greater patient care information. "The requirement supports this emphasis and implicitly includes the commenter’s concerns that a patient be able to refuse a certain treatment or participate in experimental research," HCFA officials wrote in the Federal Register. "However, in light of this comment, we decided to introduce a higher degree of specificity in the final rule.
"First, we noted that the patient’s representative can also exercise the right to make informed decisions on the patient’s behalf. Second, we introduced [a] more detailed description of what the patient’s right to make informed decision entails. The patient has the right to be informed of his or her health status, to be involved in care planning and treatment (this includes pain management, as this aspect of treatment planning is often not discussed with patients), and to be able to request and refuse treatment."
In addition, HCFA also proposed to include a patient’s right to formulate advance directives and require hospital staff and practitioners to comply with them. Those who commented suggest that HCFA go further by requiring hospital providers to communicate and help provide access to palliative care for the terminally ill. However, HCFA disagreed that changes in the advance directive language was necessary and that by simply requiring compliance with advance directive requirements would facilitate increased communication regarding end-of-life decisions, pain management, and other palliative care.
HCFA’s inclusion of pain management information as part of its CoPs comes amid growing criticism by end-of-life advocates that health care providers show little concern regarding the pain management needs of the dying, including offering little provider education on the topic in medical and nursing schools.
"It’s a landmark ruling," says Barbara Coombs Lee, RN, JD, executive director of the Portland, OR-based Compassion in Dying Federation, a pain management advocacy group. "We say this because it’s a unique interpretation of the Patient Self Determination Act, which was traditionally thought to apply only to advance directives."
In 1990, Congress passed the Patient Self Determination Act (PSDA), which required a patient be notified of his or her rights under state law. The "under state law" provision is significant. Originally, Compassion in Dying set out to get the federal government to force California providers comply with PSDA, which required notification or rights under the states’ California Pain Patient’s Bill of Rights. States without a similar law in their books could not require pain management notification.
In California, advocates for the dying criticized medical providers for allowing patients to needlessly suffer in pain and asked HCFA to investigate their claims that providers were failing to comply with the PSDA.
Last December, Compassion in Dying Federation, along with Americans for Better Care of the Dying, the American Academy of Pain Management, American Pain Foundation, Medicare Rights Center, and Choice in Dying, sent a letter to HCFA outlining their concerns. They argued that the PSDA, which had until now, been used to require that providers inform patients of their rights to have a say in their care through advance directives, could be expanded to include pain management.
"No one had ever considered its scope to be larger than just requiring advance directives," said Kathryn Tucker, JD, director of legal affairs for Compassion in Dying Federation. "We proposed the PSDA be used to require pain management."
What started out as a state-specific interpretation of a federal law has found its way into federal hospital CoPs, which govern all facilities that participate in Medicare and Medicaid programs.
Hospice impact
While the CoPs apply to hospitals, the ruling is significant for hospices that benefit from palliative care information given to patients early in the health care continuum.
This could help boost length of stays by giving more terminally ill patients the choice of choosing hospice over continued, but futile, curative efforts. Declining length of stay has been a worsening problem for hospices. Overall lengths of stay are down, with patients admitted to hospice with only days to live. The net effect is the patient is unable to benefit from all the services hospice offers, and has likely suffered needlessly without the palliative care offered by hospices. For the hospice, admission at such a late stage in the dying process is costly. Admission, with the emphasis on assessment and care planning, and care of the patient in the final days are the two most expensive episodes of hospice care. For many hospices, these two episodes overlap, making it difficult to keep up with the cost using Medicare per diem payments.
"Will it enhance referrals? I don’t know what the effect will be," says Karen Woods, executive director of the Hospice Association of America in Washington, DC. "There’s certainly nothing bad about the ruling. My guess is that it will not have a direct impact, but will have a second-tier affect. When you look at care in hospitals, certainly there should be more referrals."
But Woods tempered her optimism by saying that how much the CoP will positively affect hospices will depend on how aggressively, HCFA intends to enforce this CoP.
Who’s the enforcer?
The pain management requirement in the Patient’s Rights CoP is only a tiny part of the entire picture. Certainly, states with similar laws as California have more legal teeth. But for those who don’t and whose providers are subject only the rules of Medicare and Medicaid, there is the possibility that HCFA’s intentions could get lost among the more significant requirements of the Patient’s Rights CoP.
Woods says HCFA needs to require documentation of pain management information being given to patients and patient involvement in treatment planning. HCFA also needs to decide who will enforce this requirement and agree on a plan to monitor providers.
At the very least, the ruling emphasizes what hospices have already known. It reinforces aspects of hospice care that have make hospice uniquely qualified to carry out the philosophy and treatment HCFA requires of its participating hospitals. Most notable of these are the hospice characteristics of including the patient and family in deciding how their hospice care will be carried out, and its emphasis on palliative care.
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