INTRODUCTION — Many patients and families suffer from untreated pain at the end of life. Failure to treat pain effectively can result from a lack of clinician training in palliative care and the fear of violating ethical, moral, and legal tenets in the administration of pain medication to the dying patient. Clinicians often have an exaggerated perception of the risk of hastening death by treating pain with opioids. Furthermore, they are frequently unclear about the distinctions between pain management, sedation for intractable symptoms, physician-assisted dying (PAD), and euthanasia. Clinicians are faced with balancing these concerns with their legal duty and moral obligation to treat pain in the suffering patient. (See "Palliative sedation" and "Physician-assisted dying".)
Studies of patients in their last week of life reveal that up to 35 percent describe pain as severe or intolerable . Quill and Brody define the escalation of pain that is uncontrolled at the end of life as a “medical emergency” . Untreated pain can be devastating to the patient and family not only because of the suffering it produces but also because it interferes with the ability to complete many important tasks at the end of life. These tasks include, for example, getting legal affairs in order, grieving the loss of their life, making amends in strained relationships, and saying goodbye to loved ones.
Pain management at the end of life is the right of the patient and the duty of the clinician. The World Health Organization states that patients have a right to have their pain treated . This is supported by the Supreme Court ruling in Vacco v. Quill, which addressed the use of aggressive palliative care in the last days of life. Justice O’Connor stated in her concurring opinion that “…suffering patients have a constitutionally cognizable interest in obtaining relief from the suffering that they may experience in the last days of their lives” . (See "Legal aspects in palliative and end-of-life care in the United States".)
This topic review will focus on the ethical issues surrounding pain management in patients receiving end-of-life care. Other ethical issues that arise in patients receiving palliative care (eg, advance care planning, withholding and withdrawing of life-sustaining treatments, PAD), principles of pain management, and palliative sedation for control of refractory symptoms at the end of life are discussed elsewhere. (See "Advance care planning and advance directives" and "Ethical issues in palliative care" and "Kidney palliative care: Withdrawal of dialysis" and "Physician-assisted dying" and "Kidney palliative care: Principles, benefits, and core components", section on 'Pain' and "Palliative sedation" and "Palliative care for patients with advanced heart failure: Decision support and management of symptoms", section on 'Pain'.)
LEGAL CONSIDERATIONS — Many clinicians are unclear about how aggressive symptom management in palliative care differs from physician-assisted dying (PAD) and voluntary active euthanasia (VAE). Palliative care is a comprehensive approach to treating physical, spiritual, and psychological suffering in a patient at any stage of a serious illness, including at the end of life. While this may include prescribing pain medication that carries with it a very small risk of hastening death, any hastening of death is not the intention of the treating clinician. The use of medication intended to treat pain or relieve discomfort is legal in all states.
By contrast, PAD involves supplying a patient with the means, usually pharmacologic, to end their life when desired. In the United States, PAD is illegal in most states, with some exceptions (table 1). By contrast, VAE, which requires a clinician to physically administer a medication with the intent of causing death, is illegal in all states but is permitted in certain other countries (table 2). The legal status of PAD and VAE continues to evolve. (See "Physician-assisted dying".)
Most clinicians agree that patients should have their pain treated at the end of life, but many do not treat this pain for fear of the legal repercussions of possibly hastening death. The Court addressed the legality of aggressive palliative care explicitly in the Vacco v. Quill ruling. Justice O’Connor states, “The parties and the amici agree that in the States a patient who is suffering from a terminal illness and who is experiencing great pain has no legal barriers to obtaining medication, from qualified physicians, to alleviate suffering, even to the point of causing unconsciousness and hastening death” .
No legal barrier exists to treating pain; in fact, there is a legal risk to clinicians who do not effectively treat pain. In June 2001, a lawsuit was successfully prosecuted in California against a physician who inadequately treated a patient for pain. The jury decided that the doctor’s failure to treat the older man’s pain violated California’s elder abuse statute and awarded the family USD $1.5 million dollars.
PRINCIPLE OF DOUBLE EFFECT — Ethical consensus exists in the standard treatment of pain at the end of life . Religious groups have also addressed this issue. The Catechism of the Catholic Church states, “Even if death is thought imminent, the ordinary care owed to a sick person cannot be legitimately interrupted. The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable. Palliative care is a special form of disinterested charity. As such, it should be encouraged” .
Thus, the position of the Catholic Church and the Supreme Court is that aggressive treatment of pain at the end of life is legally and morally acceptable, even if death is hastened, provided the intention of the action (administering sedating medication) is to relieve pain and not to cause death. This is the principle of double effect (PDE), a concept that originated in the Catholic Church. This principle stipulates that the action taken (administering medication to relieve pain) is morally good or neutral, the intended outcome (relief of pain) is important enough to justify the unlikely but possible bad effect (death), efforts are undertaken to minimize risk of the bad effect, and the unintended effect is not the means to achieve the desired effect.
A classic example of PDE is the following: a clinician may find it morally unacceptable to directly abort a fetus, yet they may find it morally acceptable to remove a diseased uterus that may contain a fetus to save the life of a pregnant woman. The clinician does not intend to cause the death of the fetus, although it is expected. The key element of PDE is that the intentions of the actor are only good, even if the bad effect is foreseen . PDE is often invoked in writings about the treatment of pain at the end of life.
The bioethical PDE is important to patients and to the clinicians who care for these individuals. As Quill states, “To the extent that the principle allows patients, families, and clinicians to respond in an ethically and clinically responsible way to palliative care emergencies without violating the fundamental values of any of the participants, it (PDE) should be used and protected” .
MYTHS AND MISCONCEPTIONS ABOUT OPIOIDS — The principle of double effect (PDE) would only need to be invoked by the Supreme Court and the Catholic Church if the treatment of pain frequently carried with it a substantial risk of hastened death. In truth, opioids are unlikely to hasten death if used in an appropriate manner by a skilled clinician.
Opioids have multiple desirable and undesirable effects (see "Cancer pain management: General principles and risk management for patients receiving opioids" and "Prevention and management of side effects in patients receiving opioids for chronic pain"). Opioids provide analgesia but, at increased doses, may cause sedation and even respiratory depression. Respiratory depression does not occur in isolation but always in the context of sedation and mental clouding. These precursors to respiratory depression allow for a careful reversal of the opioid with naloxone (an opioid antagonist) if necessary.
The risk of respiratory depression is of greatest concern in patients with comorbid cardiac, pulmonary, kidney, or hepatic dysfunction, as well as in those also prescribed other central nervous system depressant medications [9,10]. Caution is also warranted in opioid-naïve patients . With continuous use of opioids, sedation and respiratory depression are effects to which patients quickly develop tolerance. Nevertheless, it is important not to gloss over this risk, which, while rare, is not nonexistent. (See "Prevention and management of side effects in patients receiving opioids for chronic pain", section on 'Sleep-disordered breathing'.)
There is a great deal of clinical experience using opioids in palliative care and hospice settings. One investigator reported on the clinical experience using opioids in hospice patients at the Sir Michael Sobell House in Great Britain . He found that respiratory depression was rarely seen in patients who required opioids for pain because pain was a powerful stimulus to the respiratory drive. He also pointed out a phenomenon widely recognized by clinicians in the field: “the correct use of morphine is more likely to prolong a patient’s life… because he is more rested and pain-free.”
The risks associated with the use of opioids are best thought of in the same way clinicians weigh the risks and benefits of any intervention. Let us consider, for example, a patient who requires a thoracentesis to alleviate dyspnea related to a pleural effusion. The patient has a risk of pneumothorax and possible death as a result of the procedure. This is a very uncommon adverse event when the procedure is done by a skilled clinician. The benefit of the procedure may be to greatly decrease the dyspnea caused by the pleural effusion. Clinicians would not avoid the thoracentesis because it carries with it a small risk of an adverse event when the benefits to relieve suffering are so great. They would, however, attempt to reduce the chance of these events as much as possible and inform the patient of these risks.
The same is true of the treatment of pain at the end of life. Treatment with opioids carries with it a very small but real chance of respiratory depression. This risk, however, does not outweigh the benefit of giving the drug. In fact, if the adverse event does occur, it is far easier to reverse than those associated with many other interventions.
Appropriate use of opioids to treat pain at the end of life would include the use of intermittent doses as needed for intermittent symptoms, and the careful titration of long-acting opioid preparations or continuous infusion of opioids for continuous pain or dyspnea. The relatively common practice of initiating opioid therapy with continuous infusion of opioids with a broad range of “as needed” doses for titration in opioid-naïve patients is discouraged.
PALLIATIVE SEDATION FOR INTRACTABLE PAIN — With aggressive palliative care, acceptable pain relief can be provided to 95 to 98 percent of patients at the end of life. Unfortunately, there is a minority of patients, 2 to 5 percent, in which adequate pain control cannot be achieved despite expert pain management. For these patients, palliative sedation may successfully alleviate severe, refractory pain.
Medications (typically short-acting benzodiazepines) are administered in increasingly higher doses to achieve maximum relief from physical symptoms, such as pain, that cannot be otherwise controlled.
The intent of palliative sedation is to relieve the burden of otherwise intolerable suffering for patients at the end of life and to do so in such a manner so as to preserve the moral sensibilities of the patient, the medical professionals involved in his or her care, and concerned family and friends. The decision to use sedation to relieve intolerable suffering at the end of life is legally and morally acceptable according to the principle of double effect (PDE), even if death is hastened. (See 'Principle of double effect' above.)
An in-depth discussion of palliative sedation is provided separately. (See "Palliative sedation".)
●The treatment of pain at the end of life is the right of the patient and a moral duty, as well as legal obligation, of the clinician caring for the suffering. (See 'Legal considerations' above.)
●Myths and misconceptions about the risks associated with the use of opioids abound in the literature and in clinical practice as well as in the lay public. The small risk of respiratory depression that opioids carry when used appropriately does not justify withholding their use in treatment of pain and other intractable symptoms at the end of life. (See 'Myths and misconceptions about opioids' above.)
●Aggressive treatment of pain at the end of life is legally and morally acceptable, even if death is hastened by treatment, provided the intention of the action (administering sedating medication) is to relieve pain and not to cause death. This concept is referred to as the principle of double effect (PDE) and is an important underlying treatment principle in end-of-life care. (See 'Principle of double effect' above.)
●For the minority of patients for whom adequate pain control cannot be achieved despite expert pain management, palliative sedation may successfully alleviate severe, refractory pain.