Author, Case History
Kari L. Esbensen, MD, PhD, FACP
Assistant Professor of Medicine
Senior Faculty Fellow (Emory Center for Ethics)
Emory University School of Medicine
Atlanta, GA
Authors, Commentary
Kari L. Esbensen, MD, PhD, FACP
Eduardo Bruera, MD, FACP
Department Chair, Palliative, Rehabilitation, and Integrative Medicine
The University of Texas MD Anderson Cancer Center
Houston, TX
Lois Snyder Sulmasy, JD
Director
Center for Ethics and Professionalism
American College of Physicians
Philadelphia, PA
Editor
Lois Snyder Sulmasy, JD
Director
Center for Ethics and Professionalism
American College of Physicians
Philadelphia, Pennsylvania
Ethics case studies are developed by the American College of Physicians Ethics, Professionalism and Human Rights Committee and the ACP Center for Ethics and Professionalism. The series uses hypothetical examples to elaborate on controversial or subtle aspects of issues in the College's Ethics Manual or other College position statements. The current edition of the ACP Ethics Manual and additional case studies and College policy on ethics, professionalism, and human rights issues are available at https://www.acponline.org/clinical-information/ethics-and-professionalism or by contacting the Center for Ethics and Professionalism at 215/351-2839.
CASE HISTORY
Mrs. Pangborn is a 68-year-old patient with recent recurrence of breast cancer, currently receiving chemotherapy. She was admitted to the hospital after three days of worsening crampy abdominal pain, nausea, vomiting, inability to tolerate oral intake, and constipation. Prior to this, she had good functional status and still worked as Chief Financial Officer of a large non-profit organization. She now has acute kidney injury (AKI) and a likely complete malignant small bowel obstruction. Her advance directive names her two daughters as her medical decision-makers, but it does not include written treatment preferences. The hospitalist, Dr. Farley, briefly discussed code status with Mrs. Pangborn on admission; Mrs. Pangborn responded, “do everything you can,” so Dr. Farley entered a code status of full code.
Mrs. Pangborn experienced symptomatic improvement with placement of a nasogastric tube for decompression, appropriate antiemetics, and other medications, but she frequently refused opioid pain medications, saying “they make me too drowsy and not as alert as I like to be.” A general surgeon evaluated her and recommended surgical intervention.
Unfortunately, surgery was complicated by more extensive metastatic involvement than was seen on imaging and brief hypotension, requiring vasopressors. Consequently, the planned resection was abandoned, and a venting G-tube was placed for relief of her nausea and vomiting. After surgery, Mrs. Pangborn recovered quickly and was lucid and stable to return to the hospital floor, where she was placed on a patient-controlled analgesic (PCA) pump to ensure comfort. She used the PCA frequently for pain control for a day but then became confused and unable to operate the PCA; she was transitioned to nurse-administered analgesics. Her daughters, Kelly and Linda Pangborn, frequently at her side, asked Dr. Farley to decrease her pain medications, fearing that these were contributing to her progressive delirium. Dr. Farley was hesitant to do so, explaining that she did not want their mother to suffer unnecessarily, but agreed to decrease the pain medications slightly.
That evening, Mrs. Pangborn became septic and declined further. Dr. Farley discussed the patient’s broader goals of care with her daughters and recommended transitioning to comfort measures and/or hospice given her rapid decline and metastatic disease. Her distraught daughters asked if there was a possibility that she might regain decision-making capacity to help make such choices, noting that their mother, a widow, was fiercely independent, “a fighter,” and preferred to make her own decisions. They were still worried that the pain medications were making her confused and again requested that they be discontinued to help their mother regain improved cognition.
What next steps and conversations should Dr. Farley undertake in navigating Mrs. Pangborn’s care, particularly regarding palliative medications to treat her symptoms?
Commentary
Missed opportunities to help prepare patients for what is likely to come before acute crises and loss of decision-making capacity, unfortunately, are common (1). Here, Mrs. Pangborn completed an advance directive naming her daughters as surrogate decision-makers, but her physicians neglected to help her delineate her values and treatment preferences and educate her about how her goals of remaining alert and “in control” could be balanced with careful titration of opioids to achieve pain control without over-sedation. Numerous studies have shown that, for many patients, early symptom management and referral to palliative care improves cognitive and physical function and longevity, enabling patients to pursue their most important goals without the disabling and distracting effects of unrelieved pain and other symptoms (2,3). Additional opportunities were missed in the hospital, where her acute decline should have been anticipated: when she was first admitted (“do everything” should have been explored in more detail); pre-operatively (the possibility of complications should have been addressed to clarify her preferences); and during the initial post-op day (when Mrs. Pangborn was lucid, and her illness was known to be extensive and likely terminal).
Having these conversations is sometimes difficult, and clinicians may fear that such discussions could harm the patient (4). But avoiding hard conversations can lead to delays that cause significant, preventable harms to both the patient and their loved ones. Honest, empathetic, and transparent conversations with assurances of continued support, demonstrate the physician’s commitment to serving the good of the patient (beneficence) and respecting the patient’s autonomy by providing information needed to make informed choices (5). Adequate pain and other symptom control are an ethical obligation of physicians (5). Clinicians should seek appropriate support, if needed, to help them implement these duties in a timely manner.
Going forward, how can the medical team best care for Mrs. Pangborn, given her current lack of decision-making capacity due to delirium, ongoing pain, grave prognosis, and her daughters’ significant emotional and moral distress?
Ethics and palliative care
All physicians have a duty to develop core competencies of primary palliative care: symptom management; patient/family education about this; and communication skills necessary to ensure shared, informed decision-making tailored to the needs and values of the patient. Clinicians “should be guided by data on the benefits of early initiation of palliative care and should improve timelier appropriate referrals to hospice. Patients and families often do not know what hospice or palliative care is but say they want it when informed about this type of care”(6).
If available in her hospital, Dr. Farley could consult palliative care specialists to assist with symptom management and complex medical decision-making (6). Multidisciplinary palliative care teams can provide expert symptom management; assess psycho-social-spiritual needs; and facilitate difficult conversations to help navigate the course of care. Such teams have expertise in active listening and psycho-social-spiritual support; eliciting important knowledge regarding the patient’s values, goals, and preferences; and aligning care provided with this more robust understanding of what would best serve the particular patient’s overarching goals of care, especially when there are conflicting perceptions. Palliative care involvement can improve symptom control, quality of life, and end-of-life care; avoid unnecessary medical interventions and costs; transition patients to their desired care settings; and lessen stress and improve bereavement outcomes for loved ones, among other benefits (2,3,7).
In addition to enlisting specialist help, Dr. Farley should attempt to maintain open communication; elicit a better understanding of the “good” for her particular patient; and facilitate informed decision-making by educating the surrogate decision-makers about their mother’s medical condition, prognosis, and alternatives for treatment (5). She should attend to the emotional and/or moral distress of the patient’s loved ones and should remain cognizant of her own (and the medical team’s) potential moral distress, seeking support as needed.
Facilitating open communication and engaging in informed decision-making
Good communication skills can help establish rapport, demonstrate respect for the patient, earn trust, and build the foundation for informed decision-making (5). Whether conversations are held with the patient, surrogate decision-makers, or both, a crucial first step is to express empathy (“I can only imagine how hard this much be for you”). Conversations should provide opportunities for participants to share their understanding of the current situation, express hopes and fears, and ask questions (1). Clinicians should listen actively, without interrupting; ask clarifying questions to confirm understanding (“What I hear you saying is ___. Is that correct?”); support the range of emotions expressed (“You appear understandably frustrated/upset/worried, etc.”); and show concern and willingness to collaborate in designing a plan of care aligned with the patient’s own conception of what serves her best interests – her “good” – or the surrogate’s understanding of what would serve the good of the patient (3,5,8). Disagreement over clinical decisions arises when various parties (patients/loved ones/surrogates and clinicians) hold conflicting views of what best serves the patient’s ultimate and immediate good, which is multifaceted and not just biomedical (8).
The physician’s questions to a patient/surrogate should be open-ended and centered on gaining a clearer understanding of what is most important to the patient (“Tell us about your mother” (9). For example, inviting Kelly and Linda to share more about their mother can yield insights into her personhood – values and sense of meaning/purpose – as well as reveal treatment preferences she may have expressed. “A good surrogate can articulate the patient’s authentic values by describing the patient’s loves, beliefs, and fundamental moral commitments rather than just specific preferences. Surrogates, ideally formally designated, know the patient as a person even if they do not know his or her precise wishes” (9). Explicitly acknowledging the latter often eases some troubling emotions surrogate decision-makers experience by reminding them that they can help preserve their loved one’s authentic values and choose what is “best,” all-things-considered, by making decisions aligned with what they know is most important to the patient as person. Supporting informed decision-making entails clinicians taking this new-found knowledge into account, carefully considering how the available clinical options might best serve the patient’s good, and then illustrating how different options may serve or undermine what the surrogates have described as being most important to the patient. The surrogates still choose on behalf of the patient, but with clinician guidance that informs how to best serve the patient’s multifaceted good, beyond the limited biomedical understanding of benefits and burdens (8,9).
Although the discussion with her daughters provides some additional insight, unfortunately, it remains unclear whether Mrs. Pangborn refused pain medications earlier in order to align her care with a desire to maintain control, to enjoy unimpeded interpersonal relationships, to remain productive in her work or fulfill other commitments, because of religious beliefs regarding the redemptive value of suffering, or, as is quite common, due to an assumption that one must choose between adequate pain control or unimpaired cognition and cannot have both. Again, there were many missed chances to more fully understand her reasoning, or to explore her goals and values, when she could have explained them. Dr. Farley could have educated her (and her daughters) that carefully titrating opioids (or other therapies) that both control pain/other symptoms and preserve cognition is possible– perhaps even improved cognition, to the extent that unrelenting symptoms occupied Mrs. Pangborn’s attention or depleted her energy to pursue important goals. Early utilization of opioids and other analgesics – beginning in the outpatient setting – could have given her the opportunity for trials of various therapies and dosages to achieve both goals. This also may have dispelled misconceptions that so trouble her daughters now.
Fostering understanding and informed decision-making by surrogates
Promoting Mrs. Pangborn’s comfort and preserving whatever else was most important to her might not, in fact, be contradictory. Immediately post-op, when she was lucid and in control of her own analgesics through a PCA, she utilized opioids, perhaps reflecting a softening or reversal of her prior choices in the new context of worsening pain and debility. That she did so provides context within which Kelly and Linda can explore whether they should remain opposed to opioids in order to honor what they understood to be their mother’s prior choices (10).
Their request to discontinue opioids may reflect their perception that medications, rather than numerous other contributory factors, such as metastatic cancer, bowel obstruction, post-operative symptoms, renal failure, and sepsis, are the cause of their mother’s delirium. Kelly and Linda need both reassurance that all potentially reversible contributors to their mother’s decline will be addressed and education to understand that delirium occurs in the vast majority of patients nearing death. Delirium is related to changes in brain function due to failure of various organs (e.g., kidneys) to clear toxic metabolic byproducts, inflammation, and decreased brain perfusion, among other factors; opioid use alone—or, conversely, stopping opioids—is unlikely to significantly alter the course of events (11). In rare cases when opioids do contribute to neurotoxicity and delirium, opioid-rotation can be particularly helpful, especially when managed by palliative care experts. This allows clinicians and family to observe what role, if any, opioids are playing in a patient’s delirium without causing the patient to suffer unnecessarily from opioid dose-reduction or discontinuation (11).
Attending to the emotional and moral distress of loved ones and surrogate decision-makers
It is important to acknowledge Kelly and Linda’s distress, to reaffirm both the roles they are playing on her behalf (“You are doing a wonderful job advocating for your mom”) and their legitimate desire to honor their mother’s ways of dealing with challenges, and ultimately to respect their decision as surrogates. They described her as “fiercely independent,” preferring to make her own decisions, and their requests reflect her values. Additional factors may also motivate their request to limit opioids: fear of hastening death; distrust in the medical team or the medical profession overall; the desire for their mother to regain cognition so they can say goodbyes, “I love you,” or complete important end-of-life rituals; spiritual or religious beliefs about suffering; or experiencing anticipatory grief, guilt, or pressure from other family members, among others. They may also have more pragmatic concerns about “unfinished business,” especially since her impending death came more precipitously than anticipated. Or they may have seen or heard of instances where other loved ones or friends were over-medicated. Further exploration of what motivates the daughters’ request might reveal what communication and support is needed to bridge the gap between clinician and family perceptions of what would serve the patient’s best interests, given the current circumstances.
“The comprehensive, coordinated, and concentrated relief of both pain and suffering in terminally ill or incurably ill patients has always been a moral responsibility of physicians, regardless of specialty” (8). Meeting the needs of patients and their family members as the end-of-life nears requires that physicians take up the challenge of having difficult conversations with patients and family members/surrogates; actively listening to elicit their hopes and concerns; and sensitively engaging and educating to dispel any misconceptions in order to forge an appropriate plan for care for every Mrs. Pangborn.
References
- Lo B, Quill T, Tulsky J, for the American College of Physicians–American Society of Internal Medicine End-of-Life Consensus Panel. Discussing palliative care with patients. Ann Intern Med 1999;130-744–49. PMID: 10357694.
- Temel JS, Greer JA, Muzikansky A, et al. "Early palliative care for patients with metastatic non–small-cell lung cancer." New Engl J Med 2010;363:733–42. PMID: 20818875 DOI: 10.1056/NEJMoa1000678.
- Bauman JR, Temel JS. "The integration of early palliative care with oncology care: the time has come for a new tradition." J Natl Compr Canc Netw 2014;12:1763–71. PMID: 25505216 PMCID: PMC5728091 DOI: 10.6004/jnccn.2014.0177.
- American College of Physicians. Improving your end-of-life care. Patient Education And Caring End of Life Series. 2014. https://www.acponline.org/sites/default/files/documents/clinical_information/resources/end_of_life_care/end_care.pdf.
- Snyder Sulmasy L, for the American College of Physicians Ethics, Professionalism and Human Rights Committee. American College of Physicians Ethics Manual, seventh edition. Ann Intern Med 2019;170:S1–S32. PMID: 30641552 DOI: 10.7326/M18-2160.
- Kelley AS, Morrison SR. Palliative care for the seriously ill. New Engl J Med 2015;373:747–55. PMID: 6287850 PMCID: PMC4671283 DOI: 10.1056/NEJMra1404684.
- World Health Organization. Palliative care. 2020;August 5. https://www.who.int/news-room/fact-sheets/detail/palliative-care.
- Pellegrino ED. Emerging ethical issues in palliative care. JAMA 1998;279:1521–22. PMID: 9605885 DOI: 10.1001/jama.279.19.1521.
- Sulmasy DP, Snyder L. Substituted interests and best judgments: an integrated model of surrogate decision making. JAMA 2010;304:1946–47. PMID: 21045102 DOI: 10.1001/jama.2010.1595.
- American College of Physicians. Making medical decisions for a loved one at the end of life. Patient Education And Caring End of Life Series. 2014. https://www.acponline.org/sites/default/files/documents/clinical_information/resources/end_of_life_care/end_care.pdf.
- Casarett DJ, Inouye SK, for the American College of Physicians–American Society of Internal Medicine End-of-Life Consensus Panel. Diagnosis and management of delirium near the end of life. Ann Intern Med 2001;135:32–40. PMID: 11434730 DOI: 10.7326/0003-4819-135-1-200107030-00011.