This is exactly how we felt when we read the AAHPM Quarterly Winter 2020 Let’s Think About It Again.1 (member paywall)

Should a patient be offered chemotherapy if he does not receive appropriate care for his ongoing SUD? 

If this question does not immediately cause you to feel intense discomfort, we suggest you pause and consider why this might be. We think even asking the question this way is harmful, as it presents as a reasonable option denying a middle aged patient with a highly treatable cancer standard medical care, due to having opioid use disorder (OUD) as a comorbidity.  

Fundamentally, the question is about  who we think is deserving and able to receive cancer treatment. 

Keep in mind here - this is a discussion about untreated small cell lung cancer, one of the most highly aggressive yet chemotherapy-responsive solid tumors we encounter. Without chemotherapy, this patient will almost certainly die in 1-2 months. While extensive stage small cell lung cancer is not curable, with treatment, there is a reasonable chance he could live a year, and with newer therapies some patients are now living substantially longer. His ongoing heroin use is undoubtedly a source of significant suffering for the patient, and is a comorbidity which will complicate his care, require intense help, and may possibly shorten his life, but asking if we should even bother to treat this patient’s cancer is asking whether we think his life has value.

Ie, is dying in 2 months from untreated cancer alongside suboptimally treated OUD an acceptable alternative to dying in 1 year from properly treated cancer alongside suboptimally treated OUD (for a patient who wants cancer treatment)? 

We want to know, where is the debate here, unless you don’t believe people who inject drugs are worthy of life-prolonging treatments? 

This is why we think even asking the question this way is harmful to our patients and community, as it devalues the life of patients who live with a highly misunderstood and stigmatized disease (opioid use disorder). 

Additionally, the framing of the question as should he be offered chemotherapy “if he does not receive appropriate care” for his ongoing SUD suggests that we should all have a debate about whether we should make markedly life-prolonging therapies contingent on ‘compliance’ with SUD treatment. This is sort of akin to denying someone, say, oral surgery for tongue cancer because they still smoke. So, sure, that patient’s health will be better if they stop smoking, and their ongoing smoking may yet kill them, but also maybe it won’t, and denying that patient a treatment (surgery) which will likely markedly prolong their life just because we don’t like the fact that another comorbidity is ‘uncontrolled’ is madness. We’d all urge that patient to stop smoking, offer them resources, keep the conversation going, while simultaneously giving them standard medical care. 

We would certainly not pin their ability to get life-prolonging treatment on their ‘obedience’ to a treatment plan for their tobacco addiction, either. It’s only because addiction is so misunderstood and patients who use drugs are so stigmatized that we think this is an ok debate to even have. 

In this context we submitted a letter to the editors of the AAHPM Quarterly asking for them to retract this discussion and to try to make amends for the harm we believe it causes our patients and community. (Of note, we really appreciate and are grateful for the perspective of the author advocating for giving chemotherapy for this patient while doing what you could do to help him with his SUD, but also thought the larger framing of the discussion was overall harmful and felt a retraction was best.) We are very disappointed they did not retract the article, and so we thought we would talk to our broader community about how we think about our patients who have SUD.

Let’s start by taking a different approach to this story.  

Acknowledge people with SUD consistently experience barriers to appropriate care because of persistent healthcare stigma and inadequate understanding of addiction. Care of this population demands a close examination of our stereotypes of people who use drugs and become more aware of implicit and explicit biases.2

Imagine if we did that--imagine what sort of debate and discussion we as a community could be having about our very ill patients who suffer from SUD alongside other serious illnesses? 

Just think about this very case - we could debate:

• What *are* the best ways to support his safety while he gets chemo and lives with an active SUD?
• If he also had severe pain from the cancer - is there a role for strong opioid agonists to treat that pain given his active SUD?
• What is the role for palliative specialists in his care, vs addiction specialists and others?
• What are the knowledge and skills palliative specialists should have to help patients in this situation?And many more questions.

All of these questions are rooted in a perspective that views this patient’s life as precious and assumes that we health care professionals can and will lean into these most difficult of clinical scenarios with compassion and skill, and not give up on patients like the man in this case because there is challenge and risk.

There is more we can say, but we recommend that all of us in the palliative care community be prepared to promote evidence-based SUD care for patients with serious illness. Here are some basics:

1. Treat addiction as a chronic disease and give it equal attention to other serious illnesses. A heroin overdose signals a period of increased disease activity requiring more robust healthcare support. Overdose is a significant exacerbation of disease and an opportunity for engaging the patient in life-saving treatment.  People with SUD should be regularly offering life-saving therapies like buprenorphine or methadone for OUD.4

2. Engage in a goals and values discussion, including goals about substance use.“Not taking Suboxone and managing his heroin use on his own” is not a discussion. As PC clinicians, we must regularly probe further to understand the rationale behind patients’ decisions and help people grapple with ambivalence. In other disease states, when patients make decisions that we feel are not in their best interest, we explore these decisions in a non-judgmental fashion. We use communication techniques such as motivational interviewing and open-ended questions to stimulate a discussion that challenges the status quo and minimizes harm.5

3. Shared decision-making in a patient with SUD needs to incorporate discussing the benefits and tradeoffs of decisions and to provide information to help patients make choices that align with their goals. The patient’s interest in pursuing chemotherapy suggests an interest in life-prolonging treatment, which should not be undermined by a one-time decision not to engage in SUD treatment. Patients with SUD often require multiple engagements with different treatments before achieving remission.6  We should never give up on patients with severe SUD, there is always hope, and there are always ways we can help them be suffer less, lead better lives, and be safer even if they continue to use harmful drugs or alcohol!

4. Attend to psychological trauma and provide trauma-informed care that recognizes that medical care (including a diagnosis of life-threatening illness and pursuing substance use disorder treatment) may be anxiety-producing, resulting in avoidance of medical care. 7,8 Identifying potential barriers to treatment and sources of suffering is core to providing both trauma-informed care and palliative care. As PC clinicians, we must respond with empathy and cultivate a safe environment. For addiction treatment at the first oncology visit, declining medication may not reflect long-term choices, and treatment should be reviewed at each encounter and integrated into standard practice.9 Similarly, before confiscating the patient’s access to chemotherapy and deepening SUD disparities, a thorough differential for declining the Suboxone is needed. Did the patient have a prior experience with Suboxone for OUD, is Suboxone too expensive, would he instead engage in methadone maintenance treatment, is he worried Suboxone would not adequately treat underlying pain, etc.?  Integrated treatment models that combine medication addiction treatment and life-saving treatment (see endocarditis literature!) have shown promising results.

5. Do not miss the opportunity for a discussion of harm reduction. 10 An opioid overdose represents a critical time to revisit goals and values. We should seek to understand what led to the overdose and consider preventing an overdose in the future such as offering naloxone, assessing current use and injection practices, and recommending never-use-alone resources. The National Harm Reduction Coalition website contains excellent information.11

In summary, while undoubtedly this patient’s ongoing heroin use will complicate his care, allowing him to die rapidly of his treatable (albeit not curable) cancer constitutes far more significant harm to him. As a field, rather than focus on whether people with SUD should receive care, we must examine existing policies, clinical practices, and stigma that create barriers for patients who use drugs to engage in treatment. Providing care to individuals with SUD and serious illness can be challenging, but it can also be some of the most rewarding professional work we do.

Katie Fitzgerald Jones MSN, APN (@kfjonespallnp) -- Hospice & Palliative Care Nurse Practitioner at VA Boston Healthcare System and Nursing Ph.D. student at Boston College.

Janet Ho, MPH, MD -- Palliative and Addiction Medicine Physician University of California San Francisco

Zachary Sager (@ZacharySagerMD), MD -- Psychiatrist and Hospice & Palliative Medicine Physician VA Boston Healthcare System

Drew Rosielle (@drosielle), MD -- Palliative Medicine physician at the University of Minnesota Medical School/M Health Fairview

Jessica Merlin (@JessicaMerlinMD), MD, Ph.D., MBA -- Addiction Medicine, Infectious Disease, and Palliative Medicine Physician University of Pittsburgh School of Medicine. 

1. Let's Think about it Again. http://aahpm.org/quarterly/winter-2-lets-think-about-it-again. (Sorry, this is behind a paywall at AAHPM for members only.)

2. Botticelli MP, Koh HK. Changing the Language of Addiction. JAMA. 2016;316(13):1361-1362.

3. Ferrell BR, Twaddle ML, Melnick A, Meier DE. National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition. J Palliat Med. 2018.

4. Larochelle MR, Bernstein R, Bernson D, et al. Touchpoints – Opportunities to predict and prevent opioid overdose: A cohort study. Drug and Alcohol Dependence. 2019;204:107537.

5. Shared Decision Making Tools. Substance Abuse and Mental Health Service Association Web site. https://www.samhsa.gov/brss-tacs/recovery-support-tools/shared-decision-making 

6. Snow RL, Simon RE, Jack HE, Oller D, Kehoe L, Wakeman SE. Patient experiences with a transitional, low-threshold clinic for the treatment of substance use disorder: A qualitative study of a bridge clinic. Journal of Substance Abuse Treatment. 2019;107:1-7.

7. Tripp JC, Jones JL, Back SE, Norman SB. Dealing With Complexity and Comorbidity: Comorbid PTSD and Substance Use Disorders. Current Treatment Options in Psychiatry. 2019;6(3):188-197.

8. Sager ZS, Wachen JS, Naik AD, Moye J. Post-Traumatic Stress Disorder Symptoms from Multiple Stressors Predict Chronic Pain in Cancer Survivors. Journal of Palliative Medicine. 2020.

9. Lagisetty P, Klasa K, Bush C, Heisler M, Chopra V, Bohnert A. Primary care models for treating opioid use disorders: What actually works? A systematic review. PLoS One. 2017;12(10):e0186315.

10. Hawk M, Coulter RWS, Egan JE, et al. Harm reduction principles for healthcare settings. Harm Reduct J. 2017;14(1):70.