Physicians may fail to explain to patients when they are being switched from curative to palliative care and may be reluctant to discuss end-of-life options with patients. This can have detrimental effects on the patient’s quality of life and leave unnecessary debt for the surviving family. As a result of ineffective end-of-life planning, patients may endure wasteful and ineffective care, not make the best use of their remaining time, or fail to adequately wrap up their affairs in time.
During the 2019 Liver Meeting, the Blue Faery Liver Cancer Assoc team had the opportunity to discuss hepatocellular carcinoma (HCC) care approaches with many physicians, nurses, researchers, and patient advocates. Several physicians reported that they had not typically explained the difference between curative and palliative plans to their patients, and in many cases, had not discussed end-of-life planning. This approach may be very common with cases of advanced liver cancer and may have social and cultural roots.
For some clinicians, there may be significant reluctance to specifically articulate a dismal prognosis to terminal patients. In one case, a physician described his motivation in not discussing the topic as wanting to avoid alarming the patient or giving them a sense of hopelessness. This may indicate a lack of instruction about palliative care options during medical school and perhaps a lack of insight into the deficits that result from ineffective end-of-life planning. While the sentiment to protect a patient from alarm or despair may have benign roots, the lack of counseling about palliative options and lack of clarity as to prognosis can lead to ineffective end-of-life planning and worse patient outcomes.
A lack of effective and comprehensive end-of-life planning often results in unnecessary pain and discomfort, as well as unrealistic expectations that are detrimental to a patient’s quality of life. Patients who are kept on curative plans that have no significant likelihood of success often have a lower quality of life due to painful, expensive, and intrusive tests, as well as the effects of surgery, radiology, or drug regimens that can result in missed opportunities to be with family and friends and to enjoy what finite time they have left. These interventions may add nothing to the patient’s survival but may mean fewer opportunities to enjoy precious moments, pass on stories and insights, or have a sense of peace and closure. For example, sorafenib may cause diarrhea and hand-foot syndrome and often leaves the patient house-bound and less likely to participate in any activities. Time spent by a patient with terminal HCC dealing with diarrhea and painful hands and feet from futile treatment is a poor substitute for sharing time with friends or family.
Likewise, patients who are terminal but unaware of their prognosis may fail to wrap up their affairs and may not execute legal documentation, such as an advance directive. As a result, there may be confusion about their intentions and the patient or their family members may agree to expensive, painful, and disruptive medical interventions that are futile. When adult patients don’t leave clear care preferences in legally executable instructions, other adults—often their children—may disagree on what to do, resulting in worse quality of life for the patient.
In one case shared during the 2019 Liver Meeting, a patient was unaware that she was terminal and felt that she had “plenty of time” for drafting a will and settling debts, and therefore, instead left her family with a lengthy probate process, and large medical debts. Similarly, a terminal patient underwent expensive and intrusive emergency surgery because there was no advance directive and the clinical team defaulted to heroic measures. The post-operative pain and recovery time took away from the few remaining weeks the individual had left to share with family.
Futile curative care robs the patient and their family and friends of quality of life that palliative care may have afforded or enhanced. Physicians should make end-of-life planning and clear articulation of the options for palliative care part of their standard operating procedures for patients who are terminal. Care facilities should check that these patients understand whether they are on a curative or palliative care plan, what the differences are, and the necessity for drawing up an advance directive and will.