End-of-Life Care and the Opioid Crisis: Potential Implications and Unintended Consequences

This insight has been republished with permission from The Medical Care Blog.

By Elizabeth Fehlberg, Ila Broyles, Dorothy Wu, and Michael Halpern

Reactions to the opioid crisis are affecting patients in need of hospice and end-of-life care in the United States. Hospice providers have been largely exempt from the increasing regulation of opioid and narcotic prescriptions, as most recent laws and regulations affecting opioid prescribing specifically exempt individuals receiving cancer treatment, palliative care, or those nearing their end-of-life. However, the current regulatory climate and public fear that surrounds opioids could restrict the ability of hospices to provide palliative care at the end-of-life – and some hospices and their patients have begun to experience the spillover effects and unintended consequences.

Hospice care is for patients that have a life-limiting illness with a prognosis of six months or less. Unlike other clinical settings, hospice care is unique in that the focus is on providing comfort to the patient, rather than curative treatment. Opioids are commonly used in the hospice setting and end-of-life care for pain management. An analysis of publicly available hospice data by RTI International found that upon admission, approximately one-third of hospice patients have or receive a prescription for opioids; after admission, this number is likely to increase as the patient nears death. To maintain the therapeutic relationship while ensuring responsible pain management practices, hospice and other palliative care providers must balance the comfort they provide to their patients during their end-of-life with the appropriateness of their opioid prescriptions.

In response to the current opioid crisis in the United States, policymakers have enacted regulations to restrict opioid prescribing in an effort to prevent opioid abuse. Federal legislation has been introduced to limit initial opioid prescriptions to seven days. As of April 2018, at least 28 states have also responded to the opioid epidemic by implementing policies related to opioid prescription limits, such as limiting the duration of the initial opioid prescription or setting dosage limits. Both federal and state policies exclude the treatment of cancer, palliative care, and hospice care from these restrictions. Nevertheless, reactions to the opioid crisis are still inadvertently affecting hospice and end-of-life care. Below, we discuss two main effects: access to pain management and hospice’s delivery of end-of-life care.

Effects on Access to Pain Management

Pain management is one of the key tenets of palliative and hospice care. Many patients facing the terminal phase of their illness may seek hospice care to avoid pain and other burdensome symptoms at death. Hospice and palliative providers’ ability to manage their patients’ pain could be limited by the policy reactions to the opioid crisis in several ways.

1. Policies limiting the production of opioids are leading to opioid shortages, especially in the inpatient setting, for palliative and hospice clinicians. In 2017 and 2018, federal officials limited the manufacturing of opioids [PDF] due to concerns about oversupply. Around the same time, recurrent natural disasters (e.g., Hurricane Maria) resulted in frequent shutdowns of opioid production. The combined effects of these events led to limited amounts of certain opioid formulations available, especially pain medications such as morphine and hydromorphone, and thus some hospices find it increasingly challenging to find medications for their end-of-life patients.
2. Local policies intended to curb illicit opioid use, such as pharmacy dispensing limits or insurance requirements for prior authorization, can also affect end-of-life patients’ access to their pain medications. For example, the prescription dispensing limits set by pharmacies may result in patients not being able to retrieve their month’s, or even week’s, worth of pain medication in a single trip to the community pharmacy. For patients who have not elected hospice and receive coverage for drugs through Medicare Part D or other insurance, prior authorization could limit the timely dispensing of opioids at the end-of-life. The burden of multiple trips to the pharmacy or delayed access to opioids could result in needless suffering for patients and their caregivers in their last days of life. Although many policies may state that hospice patients are exempt, the identification of such patients may be imperfect and not all dying patients elect hospice, leading to a delicate situation for pharmacies or insurance companies.
3. Hospice patients with a history of addiction are particularly vulnerable amidst these policies. Hospice providers regularly treat patients who have a history of addiction, and the proportion of patients in hospice with a history of opioid addiction has likely risen in recent years. Providers must meticulously weigh the risks and benefits of opioid treatment in this patient population. The risk of addiction, and its consequences, can be acceptable for patients who are dying. Yet patients in addiction recovery may be reluctant to accept opioids to manage their pain.
4. As access to opioids becomes increasingly restrictive, and as hospices are kept largely exempt from such restrictions, patients may seek out hospice care prior to their last stages of illness. Anecdotal reports from hospice providers suggest that non-terminal patients with chronic pain are seeking care from hospices to obtain access to opioids, despite the requirement that they forego curative care. Such patients are making decisions that pain management outweighs other potential treatment outcomes. Hospice providers face difficult decisions when prognosis is unclear and appropriate use for such drugs is uncertain.

Effects on End-of-Life Care in Hospices

The opioid crisis and policy reactions to the crisis may also be affecting hospices’ delivery of end-of-life care. As hospice care is overwhelmingly provided in residential homes where patients are surrounded by family, strategies to prevent illicit drug use and drug diversion in hospice may cause friction in the relationships among providers, patients, and their families and caregivers.

Drug diversion, which occurs when legally prescribed drugs are diverted to another person for illicit use, is a growing concern. Hospice providers may be changing their prescribing practices due to concerns that a caregiver, family member, or neighbor may be taking the hospice patient’s drugs. Some hospice providers may prescribe more methadone rather than other opioids because methadone is less commonly used for illicit purposes. Others may be taking a universal precaution approach by requiring patients and their families to sign pain management agreements, which may include use of a lock box, counting pills to closely monitor the patient’s opioid use, daily drug deliveries, or potential discharge of the patient for cause.

However, a critical feature of hospice care is to support the patient and their family during the difficult end-of-life process. This is an incredibly sensitive time, and a positive relationship is vital to provide patients and their families the emotional and spiritual support that they need. As one family member of a recently deceased hospice patient commented:

“Looking back, I know that they were just following protocol, but I had a couple conversations with the nurse about my husband’s pain meds that, at the time, felt kind of accusatory or aggressive to me. It was a chaotic and emotional time and it was just hard for me to follow what they were trying to get at. […] I was more concerned about getting his pain medicine and making sure he was comfortable than I was about signing a piece of paper saying I’d dispose of any extra.”

The proliferation of drug diversion policies has the potential to lead patients and their families to feel as if providers do not trust them regarding opioid use. Such policies may put hospice providers in the challenging situation of prioritizing policing families over providing emotional, spiritual, and physical support.

However, a positive outcome likely accompanied these unintended consequences. The opioid crisis may have led to some hospice providers becoming more thoughtful regarding their opioid prescriptions. For instance, providers may be altering the number of pills prescribed at a time, the strength of the opioid prescribed, and the type of opioid prescribed. Additionally, providers often hold conversations with their patients regarding opioid use and drug diversion prevention. These conversations, if done professionally and compassionately, may serve as opportunities for providers to tactfully address any patient and family concerns or misinformation surrounding opioid usage.

Although hospices have been exempt – on paper – from the recent slew of opioid prescription limits and policies, the regulatory climate and the variation in state and local policies may make it challenging for hospice providers to determine how to best respond to the opioid crisis. To better support hospice providers, explicit guidance surrounding the “appropriateness” and “misuse” of opioids in end-of-life care should be explored because these terms may require different, explicit definitions among dying patients.

Additional education and training for hospice providers could improve care. For example, end-of-life providers could be trained on how to identify issues of opioid abuse among individuals in the patient home environment, or how to institute drug diversion prevention measures without risking their therapeutic relationship with patients and families.

Furthermore, to decrease referrals to hospice care for patients with non-terminal conditions or who are not near end-of-life, policymakers seeking to limit abuse should allow for specific, more accessible avenues for patients with pain to access palliative care. These measures will ensure patients are not left to suffer needlessly as policymakers and providers tackle the threat of opioid abuse and misuse in the population at large.

Dorothy Wu graduated from Duke University with her B.A. in Public Policy and Global Health in 2017, and is currently part of the End-of-Life, Palliative, and Hospice Care research program at RTI. Ms. Wu’s work currently focuses on quality measure development, maintenance, and implementation in the hospice care setting; her research areas of interest also include health disparities, the opioid crisis, and gun violence prevention.