Palliative Treatment: Redefining Interventions To Treat Suffering Near the End of Life

Introduction

All patients deserve high quality treatment. Often, such treatment is primarily aimed at curing disease or prolonging life. The health care community now recognizes that we must also be attentive to the suffering that accompanies illness, and providers should consider therapies to alleviate suffering even while providing life-prolonging interventions.^1,2 At times, when a patient with advanced disease and his or her physician determine that cure or life prolongation is no longer a reasonable treatment goal, it is appropriate to forego interventions that may prolong life and focus solely on minimizing the patient's suffering.

The therapies we employ to minimize suffering are generally categorized under the umbrella of “palliative care.”^1,2 We believe that the characterization of such treatment as “care” bespeaks an undercurrent of trivializing the treatment of suffering. As described in detail in this article, we argue that when we employ evidence-based, goal-directed interventions to ameliorate suffering, what we are doing is more appropriately construed as “treatment” than as “care.” As such, we argue that we, the community of providers who treat suffering, should redefine palliative care as “palliative treatment” because this term connotes our use of scientifically based interventions that have been proven efficacious.

In this essay, we build on our previous statements ³ and propose a shift in our conception of the treatment of suffering. We further distinguish four forms of suffering that all require treatment when present: physical, existential, psychological, and spiritual. Finally, we argue that when palliative treatment modalities fail to diminish the patient's suffering to a bearable level, withholding or withdrawing life-prolonging interventions and allowing death to occur unimpeded may be a reasonable treatment option.

Treatment Versus Care

As we have argued previously, the current term “palliative care” should be replaced with the term “palliative treatment.” ³ Although some health care providers may use the terms “care” and “treatment” interchangeably, the vernacular use of these words, and the implications of these terms to patients and family members, is often quite different in our experience.

The word “care” implies that what is being done is good-natured and meant to help the patient; however, “care” is something that generally does not require specialized knowledge or experience. For example, a common dictionary definition of the word “care” is “to watch over; be responsible for.” ⁴ In contrast, the term “treatment” generally implies that such interventions are goal-directed, evidence-based, and require specialized knowledge and skill. A common dictionary definition of the word “treatment” is “the systematic effort to cure illness and relieve symptoms, as with medicines, surgery, etc.; therapy.” ⁴ For this reason, we argue that evidence-based, goal-directed interventions that ameliorate suffering should rightly be termed “treatment” rather than “care,” and therefore the term “palliative treatment” is more appropriate than the term “palliative care.”

Labeling evidence-based, goal-directed interventions that ameliorate suffering as treatment rather than as care represents an important conceptual shift and is not merely a semantic alteration. Because an intervention with proven benefit is generally referred to as a treatment, and because there is clear evidence that palliative measures are effective in reducing suffering,^1,2 these interventions qualify as treatments. Labeling evidence-based, goal-directed interventions that ameliorate suffering as treatment is important so that physicians and patients alike may view such treatment as important, effective, and based on good science.

In our experience, regarding such treatment as “care” has led many patients and providers to believe that they are “giving up” when they decide to forego life-prolonging interventions and instead focus solely on minimizing suffering. It is important to remember, however, that even while employing life-prolonging interventions, palliative treatment should be provided simultaneously to ensure that the patient's suffering is minimized.^1,2 Labeling these interventions as “treatment” serves to reinforce to physicians, patients, and family members that active treatment of suffering is available and critical in the care of all patients.

Further, when we present the option of either pursuing treatment or forgoing treatment and receiving only palliative care, it is easy to see why so many patients choose to continue treatment—the term “treatment” implies that there is still hope and that something active will be done. In contrast, the term “care” suggests that interventions employed are less active and do not present any meaningful hope. Because many people view any treatment as preferable to care, patients often choose treatment even in cases in which such interventions are known to increase morbidity and there is no evidence that they prolong life.

In contrast, palliative treatment without life-prolonging interventions is generally a more acceptable alternative than is palliative care. Because the term “treatment” demonstrates the evidence-based, goal-directed nature of our interventions, patients more clearly understand that when we redirect the goals of treatment we continue to use the best possible medical knowledge and expertise. Further, because treatments are goal-directed, it is clearer to patients how to maintain hope (e.g., when we employ treatments to diminish nausea, the patient can hope that nausea will be alleviated). When a patient is given the option of two goals of treatment: 1) life-prolonging treatment (with concurrent palliative treatment), or 2) palliative treatment (without life-prolonging interventions), he or she may choose to redirect the goals of treatment without feeling it means “giving up.”

At first blush, the terms “palliative” and “treatment” may appear to be in conflict; however, we argue that this coupling is appropriate. The term “palliative” means to lessen symptoms without effecting a cure, while some may interpret the term “treatment” to imply curative treatment or the complete elimination of symptoms. Such construal of the meaning of “treatment,” however, is not universal. For example, while the treatment of asthma through the use of inhaled steroids and beta-agonists can significantly improve a patient's symptoms, such treatment does not cure the patient's asthma, nor is it always effective in alleviating all of the symptoms. Nevertheless, such medications are appropriately referred to as treatment because they are evidence-based, goal-directed interventions. Because palliative treatment is also evidence-based and goal-directed, the term is appropriate regardless of our ability to fully eradicate all suffering.

Suffering

Palliative treatment is the treatment of suffering, it is therefore imperative that we recognize all forms of suffering in order to fully treat patients. The treatment of physical suffering has received more attention in the last decade. Indeed, The Joint Commission now requires that we assess pain in all patients, ⁵ and medical curricula generally include instruction of the treatment of pain, nausea, and other forms of physical suffering. Treatments for physical suffering are often, but not always, successful in eliminating these symptoms. ⁶

Other forms of suffering, however, often go unchecked (Table 1). Existential, psychological, and spiritual suffering are frequently less apparent to health care providers; however, these forms of suffering may actually be more burdensome for some patients.^7,8 Goal-directed treatment is facilitated by a multidisciplinary approach including psychologists, social workers, nurses, chaplains, and, in the case of children, child-life therapists. Treatment must be reassessed on an on-going basis and redirected as needed to obtain optimal results. While it is generally not possible to eradicate a dying patient's psychological, existential, and spiritual suffering, active treatment can significantly diminish such suffering. Patients and family members should understand that the treatment of suffering may not eliminate all symptoms; however, providers will approach treatment as they would any other form of treatment. That is, providers will use evidence-based, goal-directed interventions to minimize symptoms; will reassess the efficacy of their interventions on an ongoing basis and redirect therapies as indicated to provide maximal benefit; and will conduct research in such therapies to advance the field of palliative treatment and thereby improve therapeutic efficacy over time.

While psychological, existential, and spiritual suffering may be most easily recognized in adults, children and adolescents often experience these forms of suffering as well.^9,10 There are many examples of children expressing such suffering through poetry, prose, and visual art. Providers who treat children must be vigilant in assessing for, and treating, all forms of suffering in their patients. Further, because other members of a terminally ill child's family may also suffer greatly, the health care team has an obligation to offer palliative treatment to family members as well.

Death as a Therapeutic Option

Death is inevitable. Indeed, the lifetime death rate is necessarily one per person. Unfortunately, even with aggressive palliative treatment, suffering cannot always be alleviated. ⁶ Because the quality and quantity of suffering is necessarily subjective, there can be no third-party assessment of suffering. Only the individual can weigh the benefits and burdens of life. Some patients' suffering is so severe that they believe that the burdens of life outweigh the benefits. In such cases, we consider their suffering to be unbearable.

When a patient has unbearable suffering and all attempts at palliative treatment have failed to reduce the suffering to a level that is tolerable, the patient and his or her health care providers may together conclude that withholding or withdrawing life-prolonging interventions, thereby allowing death to occur unimpeded, is the only remaining option to relieve suffering. In such cases, death itself may be viewed as a therapeutic option because it is the “treatment of last resort” in the treatment of the patient's suffering.

During the dying process, many therapies may be applied to minimize suffering. For example, palliative sedation may be employed when all other therapies have failed to provide adequate symptom relief. ¹¹ Recent data suggests that when employed very close to the end of life, palliative sedation does not hasten death.^12,13 Unfortunately, however, even palliative sedation may relieve suffering in only 83% of patients, leaving some to suffer unbearably during the dying process. ¹⁴ For such patients, when no medical interventions provide relief of suffering, their suffering ends only upon their death.

Considering death itself as a treatment of last resort for uncontrollable suffering represents a natural progression in our conceptualization of death. Indeed, not long ago it was argued that physicians have a fundamental duty to preserve life and therefore should never remove a patient from a ventilator knowing that the patient will die once extubated. ¹⁵ We now understand that patients have a right to decline life-prolonging interventions, and that terminal extubation is, at times, consistent with the tenets of medicine.

We also now accept that there are some states that are worse than death. Indeed, recent legislation gives physicians the legal authority to limit or withdraw life-prolonging measures even over the objection of the patient or his or her representative. For example, the 1999 Advance Directives Act in Texas explicitly grants physicians the authority to withhold or withdraw life-prolonging interventions over the objection of the patient or family. ¹⁶ Similarly, California passed legislation in 2009 detailing steps that must be taken before the physician may withhold or withdraw life-prolonging interventions over the objection of the patient or agent. ¹⁷

Health care providers have come to accept that some clinical conditions and prognoses may reasonably lead one to conclude that further life-prolonging interventions are not indicated. If we focus on treating the patient, and developing appropriate goals of treatment through a shared decision-making process, some patients and their physicians will determine that the most appropriate goal of treatment is the alleviation of suffering. When the only means to achieving this goal is foregoing all life-prolonging measures and allowing death to occur unimpeded, and when upon the patient's death suffering ends, then death may be viewed as therapeutic because it succeeded in achieving the stated goal of treatment.

To be clear, the arguments put forward here are intended to focus solely on allowing death to occur unimpeded. While our arguments have implications for the debates regarding physician-assisted dying, voluntary active euthanasia, nonvoluntary active euthanasia, and involuntary active euthanasia, these other practices raise other significant ethical issues and are beyond the scope of this essay.

Conclusions

Expertly directed palliative care is really treatment, and it should be called what it is: palliative treatment. The goal of palliative treatment is to lessen all forms of sufferings: physical, existential, psychological, and spiritual. This shift in our conception of the treatment of suffering from “care” to “treatment” is necessary so that palliative treatment receives its proper recognition in our medical armamentarium. Finally, in rare cases when all treatment has failed to diminish suffering to a bearable level, the patient and health care providers determine that alleviating suffering is the primary goal of treatment, the patient's suffering is ended only upon death, and the patient believes that the burdens of suffering outweigh the benefits of life, then allowing death to occur unimpeded is a therapeutic option.