End-of-life care: New threat of under-treatment for pain

Terri Maxwell, PhD, APRN
Terri Maxwell, PhD, APRN

Amid growing media attention and, active discussions surrounding new recommendations made by the Centers for Disease Control and Prevention and Prevention, which strongly advise against the use of opioids for the routine management of chronic pain – providers in end-of-life care call for special attention to the exception-to-rule for cancer patients under active treatment, patients receiving palliative care, and those in hospice care.

While these policy proposals could help to restrain the sweeping misuse and diversion of opioids, they must be tempered by the need to ensure safe and effective analgesia for those with pain associated with serious medical illness. It can't be emphasized enough that hospice and palliative care providers are experts in pain management and have been safely prescribing opioids for many years.

Among the groups opposing the new guidelines is the American Cancer Society's Cancer Action Network, which has asked the CDC to withdraw the guidelines, stating that they were based on “limited” and “low quality” evidence. Other organizations that have expressed concern about the guidelines include the American Medical Association, the American Academy of Pain Management, the Oncology Nursing Society, the Interstitial Cystitis Association and the U.S. Pain Foundation.

It is incumbent upon hospice and palliative care providers to remain attentive to the chilling effect the CDC guidelines could have, and ensure that these proposed policies, along with other new state regulations, don't limit access to opioids for the large – and growing – population of patients with significant chronic pain during serious illness and end-of-life. The danger is that such strict policies can lead to the under-treatment of disabling pain even for those at the end of life, rather than protecting both patients and providers.

Areas at risk

Access to opioids are already limited in many urban and rural areas because many pharmacies are unwilling to stock narcotics, especially at high doses. Furthermore, physicians are under increasing scrutiny for prescribing opioids and may be especially concerned about prescribing at doses higher than the guidelines recommend, which are low for many patients with cancer and those at the end-of-life. Or, physicians will prescribe non-opioids such as non-steroidal anti-inflammatory medications that may not be as effective and place older patients at risk for possible serious side effects.

Hospice nurses are increasingly encountering patients and family members who have absorbed negative messages about opioids and are worried about a loved one becoming addicted or experiencing other adverse consequences when offered medications to ease pain at the end-of- life – despite the lack of evidence backing up these concerns. These concerns inevitably lead to under-dosing the patient, resulting in unmanaged pain and other symptoms at the end of life.

Dosage and scheduling medications are other areas of concern. In keeping with palliative prescribing practices, the CDC suggests starting with short-acting agents but once stabilized, cancer and palliative chronic pain patients benefit from being switched to long-acting opioids. Long-acting formulations that require only twice-a-day dosing are more convenient, provide a better and steadier state of medication, and reduce the need to focus on taking medication every three to four hours. The CDC guideline also makes daily maximum dosage recommendations that are unrealistic for many patients with cancer or requiring palliative care. In many cases, achieving a level of comfort for these patients requires doses that exceed the recommended CDC dose of no more than 90 mg of morphine equivalents per day. With careful assessment and titration, concerns about overdose in the palliative population are vastly overstated in the CDC guidelines.

There are also concerns about drug diversion – the transfer of any legally prescribed controlled substance from the individual for whom it was prescribed to another person for any illicit use. Hospices increasingly recognize the potential for drug diversion and are actively taking steps to prevent it from occurring. The HB 366 Hospice Opioid Diversion bill, signed into law in 2014, helps reduce this risk by enhancing existing hospice program policies and raising the industry standard to prevent opiate diversion in at-home hospice settings. Furthermore, hospices are also using of Standard Agreements and lock boxes, and ensuring proper drug disposal to further reduce the chance of drug diversion.

Other areas need vigilance

Other areas where hospice and palliative care providers should remain vigilant include overdose reversal and drug monitoring.

The CDC recommends placing naloxone, which blocks or reverses the effects of opioid medication, in the home to help prevent an overdose, especially in patients taking high doses of opioids. However, when taken as directed, opioids don't pose a risk for respiratory depression or overdose. Patients who have been prescribed opioids for weeks or months become tolerant to the respiratory depressant effects of these medications. The potential issue is that, for those with severe chronic pain, administering naloxone would result in a pain crisis.

While drug-monitoring programs are important to combat “doctor shopping” among opioid abusers, requiring hospices to enter information into drug-monitoring databases would be onerous. What's more, patients with substance abuse disorders deserve good pain management at the end of life as much as other patients do. Also, urine drug testing should not be required for those receiving opioids for cancer or palliative care, except in very rare circumstances. There is a lack of evidence demonstrating that addiction and abuse occurs in this patient population. 

The CDC is not alone in issuing guidelines, with policies related to pain management and opioid prescribing posing inconsistencies, both within and across states.  For end-of-life care, these discrepancies create substantial challenges for both providers and patients when it comes to understanding their options for care and rights and responsibilities related to that care.

Hospice clinicians need to take proactive steps to ensure timely access to opioids by working closely with hospice pharmacy providers and to combat the resurgence of opiophobia affecting patients and prescribers through education. At the same time, they should focus less on the risk associated with opioid use, and more on the evidence showing that relieving pain actually helps to prolong survival.

Terri Maxwell, Ph.D., APRN, vice president of Clinical Education at Enclara Pharmacia, oversees and contributes to the development of resources to assist hospice partners in providing evidence-based symptom management and palliative care to their patients.


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