The dramatic increases of opioid use and misuse in the past 15 years have resulted in a focus on the responsible and judicious use of opioids. In this Ethics Rounds, the commentators analyze the case of a 16-year-old girl with lymphoma and opioid misuse whose caregiver may have diverted her opioids. She is now at the end of life and prefers to die at home. The commentators, oncologists, palliative care providers, ethicists, and a medical student agree that supporting the patient’s goals and practicing good opioid stewardship are not incompatible. They identify additional information that would be required to analyze the case more fully such as the nature of the evidence for misuse and diversion and whether bias inadvertently contributed to these concerns. They agree that multimodal analgesia, including but not limited to opioids, is important. Safeguards could include a contract, directly observed therapy, and/or urine drug screens. Supervision or removal of a caregiver diverting medication or admission of the patient misusing medications would be alternatives if the initial plan was unsuccessful. Such patient-centered care requires well-developed substance misuse treatment, pain management, and home hospice that are adequately reimbursed.
For many years, pain was a largely unrecognized and undertreated phenomenon that resulted in the underuse of opioids and other analgesics, ultimately resulting in the 2001 Joint Commission standards for health care organizations to improve the care of patients with pain. Essentially at this time, the “fifth vital sign” of assessing for pain was introduced into medical practice. Unfortunately, over the subsequent 15 years, several factors contributed to dramatic increases of opioid use and misuse in the United States. Beginning in 2016, the Joint Commission began to revise pain assessment and management standards with a focus on the responsible and judicious use of opioids; many states have developed collaborative prescription drug monitoring programs for controlled substances as well as instituting restrictions on provider prescribing unless a specific patient carve-out exists (postoperative or end-of-life opioid use, etc). The pendulum has swung to emphasize the risk of addiction (which scares some patients and providers away from using an opioid when one would be appropriate) and the practice of “opioid stewardship” is emphasized. In this Ethics Rounds, we analyze a case that raises issues about the responsible use of opioids in an adolescent with a previous history of potential misuse and/or diversion who is now approaching the end of life and prefers to die at home.
Jane, a 16-year-old girl with progressive, incurable lymphoma, is experiencing increasing pain in the setting of advancing disease. During the previous 3 years, Jane’s cancer diagnosis has been complicated by chronic pain and concerns about Jane’s addictive behaviors and her caregiver’s possible diversion. At times, Jane’s physical assessments have not aligned with her rapid use of opioids, and multiple times she has expressed a preference to use medications to help her sleep through chemotherapy admissions. Her caregiver, who is in poor physical health and experiences chronic pain, frequently reports losing controlled substances but no other medications. In addition, her caregiver has returned opioid lockboxes damaged and did not return one box and reported it stolen. Additional psychosocial and home-life concerns, for which Jane and her family are followed closely by the psychology and social work teams, include financial instability and frequent missed appointments.
Jane experiences significant progression on recent scans, with her disease burden correlating with her reported locations of discomfort. Jane’s cancer is now incurable. Her oncologists consult the palliative care team to assist with symptom management and care coordination, including potential community hospice referral. Jane understands that she is dying and expresses that her preferred location of death is home. The palliative care team recommends a scheduled regimen of oral or transdermal opioids or a trial of patient-controlled analgesia in a lockbox. Jane’s primary oncology and pain team clinicians express concerns about this recommendation because of Jane’s previous opioid misuse and possible diversion by her caregiver earlier in therapy.
Given disagreements regarding the optimal way to advocate for Jane’s end-of-life goals while ensuring responsible opioid prescribing practices, the palliative care team requests an ethics consultation. In the setting of Jane’s addictive behaviors, her family’s risk for opioid diversion, and her progressive, incurable illness trajectory, how can her end-of-life wishes be honored, optimizing pain management to minimize suffering while facilitating conscientious opioid stewardship?
Dr Friedrichsdorf Comments
What a challenging and difficult case. The question at hand is whether it is possible to provide excellent treatment of pain and distressing symptoms for this adolescent at home during her end-of-life period, considering responsible opioid stewardship and her complicated clinical and social circumstances? The crystal-clear answer is: It depends!
Her pain pathophysiology might be explained by mixed acute somatic pain, neuropathic pain, total pain, or chronic pain. Obviously, this mixed complex pain cannot be successfully treated with pharmacology alone but rather requires multimodal analgesia.1 Based on the individual patient, this suggests combining multiple analgesic agents (such as basic analgesia, opioids, adjuvant analgesia), regional anesthesia, rehabilitation, spiritual care, family support, and psychological and integrative (previously called “nonpharmacological”) therapies that act synergistically for more effective pain control with fewer side effects than a single analgesic or modality.1–3 Yet, most pediatric patients with complex pain do not have access to effective safe alternatives to opioids that are covered by their health insurance in the United States.
Her clinical case is significantly complicated by an unfortunate adverse social situation, health disparity, poverty, and a possible substance use disorder or opioid use disorder, which ideally should have been assessed and treated by an adolescent substance use disorder specialist 3 years ago, when suspicion was raised by the primary team. Of note, the vast majority of adolescents who misuse opioids do so because of their unrelieved pain, followed by untreated mental health disorders.4–7 This correlates with lack of access in our country to (1) designated full-time interdisciplinary inpatient pain services at most children’s hospitals, (2) pediatric outpatient pain clinics providing integrative rehabilitative treatments by trained pediatric pain clinicians, including psychologists and physical therapists, (3) mental health services, and (4) substance misuse (“addiction”) treatment programs.
For children with serious illness and complex pain, administering pharmacology alone will usually be inadequate.8 In this unfortunate 16-year-old adolescent, although relying on an opioid alone will almost certain fail to provide excellent analgesia without integrating other multimodal analgesia therapies, an opioid will most likely remain an important part of her advanced treatment of pain and dyspnea.
To keep this patient at home, a written treatment contract is recommended. Acknowledging the possible history of opioid diversion, it might be useful to evaluate whether this diversion was undertaken by the patient or by another member of the household. We had experienced several cases of the latter, which made it possible in some cases to remove this person from unsupervised visitations during the end-of life period.
In the clinical scenario of advanced cancer of an adolescent with complex pain, the opioid of choice is usually the multimechanistic analgesic methadone. One might consider switching all her opioids to oral methadone (which can be administered subcutaneously or intravenously during the end-of life period if oral intake is not possible). The methadone dose can be administered daily by the hospice team and carefully titrated to effect. In the spirit of “trust, but verify,” regular urine drug screens may be needed to rule out other illicit drugs, including use of other opioids. Because the opioid alone will not be an effective analgesic, the patient and her family would need to agree to regularly integrate multimodal therapies, including adjuvant analgesia and mind–body techniques (eg, hypnosis, abdominal breathing, biofeedback, progressive muscle relaxation, etc) and psychology. Otherwise there might be the misconception of “the higher the pain number, the more opioid we need to administer” of the family’s side, which would be an impossible setup for the clinical team.
If the patient and her family agree to such a written treatment contract, with clear consequences of transferring her to an inpatient unit if the contract gets broken, a home hospice plan can be successfully implemented, in my experience. In addition to a solid well-staffed home hospice team, it will be important to continue access to trusted clinicians, such as social work, chaplain, psychology, and so on.
Pediatric Palliative Home Care is associated with children and adolescents who are more likely to have fun and to experience events that added meaning to their life.9 Advanced pediatric palliative care includes the interdisciplinary treatment of pain and distressing symptoms by using multimodal therapies and as such supports the notion of “to live as long as possible, as well as possible.”
Drs Sawyer and Rosenberg Comment
Balancing conflicting responsibilities is a common, and commonly challenging, element of pediatric care. Ethics consultants can help weigh the relative importance of medical teams’ responsibilities, such as the balance of pain management and opioid stewardship. A key distinction in Jane’s case is that these priorities are weighted differently at the end of life. With this consideration, it may help to deliberately articulate our goals and duties as Jane’s medical team. For the purposes of this case, we will assume that Jane and her family agree with these goals. In order of priority, we believe the goals for Jane’s end-of-life care should be:
Ensure Jane does not experience preventable, treatable pain during her dying process.
Support Jane’s wish to die at home.
Support Jane’s family as they grieve her impending death, encouraging healthy coping strategies, and avoid contributing to dangerous coping strategies.
Practice optimal opioid stewardship.
If Jane was not close to the end of her life, our goals might be different. We might be more tolerant of mild to moderate pain in exchange for supporting Jane without opioids. Jane’s coping and long-term wellbeing would be more immediately related to her caregiver’s coping, and our prioritization of healthy coping strategies and opioid stewardship would increase. However, at the end of life, a nebulous sense of “opioid stewardship” should not prevent the team from providing Jane a comfortable death at home unless these concerns prove to be concrete, current, and affecting the higher priority goals.
Although these clarified end-of-life goals may help direct the medical team (we should not withhold appropriate opioids out of concern for opioid diversion), they do not ameliorate the team’s legitimate concerns (how do we minimize the potential for opioid misuse?). To address the latter, we must first flesh out more details. Good ethics require good facts, and ethics consultants must diligently explore the history and validity of the team’s concerns. Initial questions might include, Is the suspicion of addiction and diversion founded on the personal experience of the individual calling the ethics consult or reports from others? What “addictive behaviors” did Jane or her family display previously, and have these been present recently? What is the likelihood that Jane’s behaviors were due to undertreated pain, tolerance, or opioid-induced hyperalgesia? Does Jane have other symptoms or issues that she uses her pain medication to cope with, such as insomnia or depression, and how can these be addressed specifically? Did the team express their concerns about missing appointments and damaged patient-controlled analgesia lockboxes with Jane’s family in the past? What was their response? Have they been receptive to instituting structured boundaries this time? Has Jane’s caregiver been evaluated for substance misuse by their own medical provider? How might unconscious biases such as racism, classism, or ableism be influencing the medical team’s perception of Jane and her family? These questions are not intended to second-guess the clinical team but to determine where exactly the problem lies and how serious it is. They will equip all parties with the information necessary to fuel creative solutions.
First, the medical team may need to confront outdated or biased impressions that do not accurately reflect Jane’s risk of opioid misuse or her caregiver’s risk of diversion. Even in a group of well-meaning and diligent practitioners, one person’s legitimate wondering can become a persistent reputation. In our experience, this possibility is compounded when there is a sense of “otherness” between medical providers and family members, often created by differences in coping strategies, race or ethnicity, socioeconomic status, and perception of physical ability. The shadowy descriptions of concerning behavior and psychosocial difficulties provided in the case summary must be illuminated to minimize the impact of unconscious biases.
Thereafter, the medical team can create a care plan that supports the goals listed above while remaining “as shrewd as snakes and as innocent as doves” (Matthew 10:16 New International Version). In other words, we must give Jane and her family the quality end-of-life care they need, while monitoring carefully for concerns that compromise our ability to provide that care. Palliative care and pain medicine team members will provide valuable insights into alternative opioids (eg, methadone) and complementary therapies (eg, acupuncture, aromatherapy, self-hypnosis) for effective symptom management. If the team and ethics consultants’ questions indicate that there is not current evidence of opioid diversion or misuse and it is safe to trial opioids at home, prescribers should be judicious about the amount and formulation of opioids they prescribe. Safety precautions such as medication logs and frequent home nursing visits should be agreed on with Jane and her family at the outset, and resources provided to help them succeed in fulfilling these obligations.
However, a different plan must be pursued if there are signs of misuse or diversion, in the initial information gathered or if the situation changes. Over time, if it becomes apparent that Jane’s caregivers are not able to safely meet her needs and cope with their grief, this may impinge on the team’s ability to fulfill her goal of dying at home. In that case, Jane should be admitted to the hospital or hospice when it appears pain medication dosing needs to be escalated. Depending on the seriousness of the concern for diversion or misuse, Jane may have to decide if she would prefer to be at home with potentially suboptimal nonopioid pain management or in the hospital or hospice with a full complement of pain management medications available.
This approach is consistent with the prioritization of our goals in caring for Jane and her family at the end of her life. The decision to offer home opioids must be made thoughtfully, while minimizing potential biases. Throughout, clear expectations should be consistently enforced by Jane’s care team, and genuine support should be provided to maximize Jane and her family’s chance of fulfilling her end-of-life goals.
Mr Brenner and Drs Johnson and Kaye Comment
Jane’s illness trajectory is complicated by multiple factors external to her control: her cancer-related symptoms, her socioeconomic situation, and the risk for potential diversion of her opioid analgesics. Despite advances in therapeutic options and improved access to palliative care resources and services over the past decade,10 pain remains a significant problem for children and adolescents with refractory cancer at the end of life.11 In particular, evidence suggests that breakthrough pain is often underrated, undertreated, and poorly understood in the pediatric population.12 Further data show that children with advanced cancer from low-income families experience increased levels of pain, higher symptom burden, and worse quality of life compared with children from higher-income families.13 Given these data, it is plausible that Jane’s suffering may increase as her disease progresses and that her symptoms may be inadequately alleviated by her current regimen.
Although Jane is a minor, she has decisional capacity and autonomy in directing her treatment plan; in this context, clinicians on her care team should continue to respect her concerns and goals, including her rating of pain and her desire for pain relief. In parallel, Jane’s clinicians have a responsibility to propose and implement a care plan that optimizes her relief from suffering while recognizing the sociocultural hazards that threaten her treatment plan and overall wellbeing. Providing effective pain management for Jane, and for all patients, should be prioritized despite her family’s potential to divert and/or misuse her medications. Ethically, Jane deserves the opportunity to die in dignity without pain, and she should not be penalized for the theoretical risks incurred by her or her family’s presumed addiction.
Reducing the risk of diversion and misuse by one of Jane’s caregivers is inextricably linked to improving her comfort at the end of life. For the family member(s) suffering from chronic pain and financial hardship, these are likely exacerbated by the stressors inherent to Jane’s progressive illness. As such, optimizing Jane’s pain necessitates attention to her family’s wellbeing, with the goal of mitigating certain risks for diversion as much as possible. One way to accomplish this holistic approach may be to elevate the roles of social work and psychology as vitally important for both Jane and her caregivers, on par with the prescribing physician. For example, Jane’s pain management might include the following steps: (1) identification of local interdisciplinary clinicians to manage her caregiver’s chronic pain through a holistic approach and formal patient-provider contract for safe use of prescribed therapeutics, (2) referral to community-based addiction resources and psychosocial services, and (3) connection with local organizations to offer fiscal support. Although these resources do not obviate the risk of opioid diversion or misuse, they potentially lessen the barriers to implementation of appropriate pain management for Jane. Therefore, we advocate for the prescribing clinical teams to assume responsibility for optimizing these external variables as part of Jane’s end-of-life management.
After maximizing psychosocial supports to the best of the team’s ability, the next step is to create a plan that provides fully effective pain control while also striving to minimize diversion or misuse. In this complex scenario, we agree that use of an opioid infusion via patient-controlled analgesia, with the opioid reservoir secured behind a lockbox, is a reasonable option for ensuring adequate relief of suffering in the home setting while reducing the potential for diversion or misuse. Frequent touchpoints with the community-based hospice team can also provide accountability and an additional layer of support for Jane and her family, while providing reassurance for the prescribing team.
Finally, in this scenario, Jane understands her prognosis and verbalizes her preferences related to pain management and location of death. However, we do not know the extent to which Jane and her family have received education about their options for the end of life. Moreover, enrollment in a community-based hospice, which is known to be a valuable strategy for minimizing suffering at the end of life, may also help to facilitate Jane’s goals.9,14,15 As such, we advocate for involvement of the palliative care team to help facilitate hospice resources and services to Jane and her family at the end of life, as part of the holistic approach to lessen her suffering, offer community-based respite to her caregivers, and ensure access to bereavement support after her death.
Outcome of the Case
Jane was hospitalized to receive palliative chemotherapy in an effort to decrease her symptom burden. She initially expressed a desire to return home for end of life; however, as Jane’s cancer progressed, she became increasingly worried about her ability to achieve comfort in the community. Jane’s primary oncology team, in collaboration with the pain and palliative care teams, met with Jane and her family across serial visits to explore their preferences and goals. Through a process of shared decision-making, the interdisciplinary team partnered with Jane and her family to discuss options through the lens of their mutual goals. Given extenuating psychosocial circumstances, Jane’s family felt unable to monitor and manage her opioids in the outpatient setting, and Jane disclosed that she felt safer remaining in the hospital for end-of-life care. Comfort became Jane’s primary goal, and the pain and palliative care teams collaborated to optimize provision of both opioid and nonopioid adjuvants. During episodes of opioid escalation, interventions including steroids, nerve block, and lidocaine infusion were provided in synergy with titration of methadone to achieve comfort. As Jane approached the end of her life, her symptom management was transitioned fully to the palliative care team, with provision of opioid infusion to ensure comfort. Jane died peacefully in the hospital with her family at her bedside.
Dr Antommaria Comments
All commentators remain committed to managing Jane’s pain while being mindful of their fiduciary responsibility to practice responsible opioid stewardship. Although different approaches are suggested to honor Jane’s expressed wishes to die at home, all commentators articulate various ways the medical team might seek to provide pain control in a responsible manner. The authors suggest various wrap-around services to support Jane in this family during this difficult time. If concerns for diversion or misuse persist, alternatives include remaining at home with alternative pain strategies, admission to a home hospice, or a return to the full inpatient setting. Being able to offer such patient-centered care requires well-developed systems of care and adequate reimbursement to support them.
Drs Johnson, Kaye, and Mr Brenner conceptualized, designed, and edited the case; Drs Johnson, Kaye, Sawyer, Rosenberg, Friedrichsdorf, and Mr Brenner conceptualized, wrote, and revised case commentaries; Drs Johnson and Antommaria drafted the abstract and conclusion and provided critical edits to the manuscript; and all authors approved the manuscript and agree to be accountable for the ethics rounds submission.
FUNDING: Supported in part by Cancer Center Core Grant CA21756 from the National Institutes of Health. Funded by the National Institutes of Health (NIH).
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.