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DMEJ

Duke Medical Ethics Journal

Easing the Journey: Pain Management and Palliative Perspectives in End-of-Life Care

By Michelle Hsiung
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End-of-life care is becoming an aspect of healthcare that repeatedly appears in conversations of medical ethics. In such discussions, a plethora of questions commonly emerge. How do we navigate the delicate balance between a patient’s autonomy and right to make decisions about their care, as well as the obligations of healthcare providers? What role does palliative care play in end-of-life decision-making, and how can it be refined to ensure patient comfort and dignity? What are the ethical considerations surrounding pain management and the use of opioids in end-of-life care, particularly in light of potential risks and benefits? One of the key components of end-of-life care, and specifically what will be focused on in this article, is pain and symptom management, which involves addressing the physical, emotional, and spiritual distress experienced by terminally-ill patients. 

 

There exists a common understanding that relief of pain is a fundamental obligation of medicine, with a well-established foundation in medical ethics. The alleviation of pain requires the physician to act for the good of the patient and to prevent the infliction of harm. As stated by the National Institute of Health, “effective pain relief, especially at the end of life, is a primary ethical obligation based upon the principles of beneficence, nonmaleficence, patient autonomy, and particularly the concept of double effect” [2]. However, there often stands various barriers to effective pain management. Pain is, by nature, a subjective phenomenon, and “its treatment is neither an absolute science nor without risks” [5]. The barriers to effective pain management mainly exist on three levels: at the level of the institution and regulation, at the level of the provider, and at the level of the patient/family. 

 

Within the medical community, there are numerous misconceptions that commonly circulate surrounding the use of opioids to treat pain, such as the idea that “opioids are highly addictive, that dependence or tolerance are forms of addiction, that respiratory depression is common with opioids, that opioids have a narrow therapeutic range, and that opioids are ineffective by mouth and cause too much nausea” [2]. The use of opioids is a commonly debated decision amongst clinicians when it comes to pain and symptom management in end-of-life care. Opioids are known to have both desirable and undesirable effects – they provide analgesia, but, at increased doses, can cause sedation and respiratory depression. The risk of respiratory depression is of greatest concern in patients with comorbid cardiac, pulmonary, kidney, or hepatic dysfunction, along with those prescribed other central nervous system depressant medications. Although there are inherent risks, most studies have found no concrete link between opioid usage and mortality in seriously ill populations. With the continuous use of opioids, sedation and respiratory depression are effects to which patients tend to quickly develop tolerance [3]. 

“Many healthcare professionals today still lack the knowledge needed to provide palliative care and deal effectively with end-of-life issues, meaning that hospitalized patients continue to have their needs unmet and ethical rights ignored.”

Pain assessment is critical to optimal pain management interventions. While pain is a highly subjective experience, its management necessitates objective standards of care. The WILDA approach to pain assessment, which focuses on words to describe pain, intensity, location, duration, and aggravating or alleviating factors, offers a concise template for assessment in patients with acute and chronic pain. Opioids, thus, should be prescribed based on the severity of pain, considering the functional and psychological significance of that severity. According to the National Institute of Health, opioids have also been found to be the safest and most effective pain medicine for moderate to severe pain in most patients. Aspects of basic opioid pharmacology, such as dosage, route of administration, rotation of drugs, and the avoidance of toxicity and complications, should be considered when initiating and maintaining therapy. It is when clinicians fail to pay attention to the basic rules that errors in opioid management often arise. With that said, though, the risks associated with the use of opioids should be best thought of in the same way clinicians weigh the risks and benefits of any intervention. 

 

Palliative care, a term often touched on when considering pain and symptom management, rests on the philosophy of achieving the best quality of life for patients with incurable, progressive illnesses. Historically, palliative care has most commonly been provided to cancer patients, although studies suggest that patients suffering from other chronic illnesses such as cardiovascular disease, respiratory disease, AIDS, and diabetes, often share many of the same symptoms experienced by those with cancer, including weakness, fatigue, pain, nausea, and weight loss. Chronic illness, the major cause of death and disability in the developed world today, is in fact the "modern epidemic.” Yet despite the establishment of hospices and home care, an astounding 53% of patients die in hospitals [4]. Each year, an estimated 56.8 million people, including 25.7 million in their last year of life, are in need of palliative care. Worldwide, only about 14% of people who need palliative care currently receive it [6]. 

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A big part of the problem is the unnecessarily restrictive regulations on morphine and other essential controlled palliative medications. For some patients, these medications are the only source of relief from intense suffering. It’s also important to note that even when palliative care services are provided to patients with chronic illness, it is given very late into the illness, usually after months or years of suffering. Ideally, palliative care should be integrated early into the care plan in the course of a serious illness, rather than being introduced as a last resort. This will hopefully decrease that number of chronically ill patients that reach their final stages of life without the proper physical, psychological, social, and spiritual support. Early delivery of palliative care would not only give patients the sense of relief that they deserve, but would also reduce unnecessary hospital admissions and the use of health services. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) conducted from 1989 to 1994 discovered poor quality of care at the end-of-life in many hospitals. The in-hospital deaths observed by SUPPORT were often characterized by uncontrolled pain, prolonged suffering, and caregiver hardship [4]. These negative findings brought to attention the need to improve care for the dying. Although substantial improvements have been made since then, many healthcare professionals today still lack the knowledge needed to provide palliative care and deal effectively with end-of-life issues, meaning that hospitalized patients continue to have their needs unmet and ethical rights ignored.

 

In addition, there is often a lack of agreement on how to recognize patients most likely to benefit from specialized palliative care. Specifically, a 2022 cohort study assessed whether palliative care consultations in the ICU prompted by clinical characteristics such as mortality or resource utilization (i.e. worsening organ dysfunction, severe acute neurologic condition, cardiac arrest, etc.) adequately reflect real palliative care needs. It was concluded that “clinical markers of prognosis and resource utilization have serious limitations as palliative care screening tools in [the] ICU, when compared to self-reported palliative care needs” [1]. Thus, new research is needed to find the most appropriate and effective triggers. 


In essence, tackling the complexities inherent in pain and symptom management in end-of-life care demands concerted efforts across disciplines. Through ongoing education, interdisciplinary collaboration, and a steadfast commitment to patient-centered care, the medical community can, as a whole, work towards honoring the ethical imperatives of end-of-life care in medicine.

Review Editor: Sophia Zhang
Design Editor: Shanzeh Sheikh
References
  1. Cascella, M., Laudani, A., Scarpati, G., & Piazza, O. (2024). Ethical issues in pain and palliation. Current Opinion in Anaesthesiology, 37(2), 199–204.     https://doi.org/10.1097/aco.0000000000001345

  2. Fine, R. L. (2007). Ethical and practical issues with opioids in life-limiting illness. Baylor University Medical Center Proceedings, 20(1), 5–12. https://doi.org/10.1080/08998280.2007.11928223

  3. Jackson, V. A., & Leiter, R. E. (2023, July 21). Ethical considerations in effective pain management at the end of life. UpToDate. https://medilib.ir/uptodate/show/2201

  4. Paulus, S. C. (2008, November 1). Palliative Care: An Ethical Obligation. Markkula Center for Applied Ethics at Santa Clara University. https://www.scu.edu/ethics/focus-areas/bioethics/resources/palliative-care-an-ethical-obligation/

  5. Weidner, N. J., & Plantz, D. M. (2014). Ethical considerations in the management of analgesia in terminally ill pediatric patients. Journal of Pain and Symptom Management, 48(5), 998–1003. https://doi.org/10.1016/j.jpainsymman.2013.12.233

  6. World Health Organization. (n.d.). Palliative care. https://www.who.int/news-room/fact-sheets/detail/palliative-care

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