Multiple investigators have shown that a patient's preference for a treatment is more likely to be influence by the overall outcome for a particular procedure than the direct risks and benefits of the intervention itself.13,14
In particular, patients consider the overall burden of the treatment (including the estimated length of time in the hospital, how invasive the procedure is, and the need for additional testing before or after the procedure), the perceived benefit of the ideal outcome, and the likelihood of the ideal outcome when making decisions.14
Patients may consider some conditions, such as severe dementia, coma, or a persistent vegetative state, as worse than death.13
Advance directives and living wills, although one example of goal setting, typically focus on a patient's preference regarding specific treatments in a narrow range of specific circumstances and are seldom helpful outside of those clinical scenarios. They provide a patient the opportunity to opt out or refuse certain treatments in certain situations if they are unable to speak for themselves. The desirability of an intervention depends heavily on its outcome. To better understand this concept, consider the different likely outcomes for a given procedure: intubation in a patient with pneumonia versus a patient with respiratory failure secondary to cachexia from advanced cancer. The patient with pneumonia may reasonably expect to be extubated and return to his premorbid quality of life versus the cancer patient who is unlikely to survive extubation. If the consent discussion was limited to the benefits and risks of the intubation itself—“inserting a tube and allowing a machine to breathe for you”—many patients would likely consent. Discussion of the goals of care and the goals of the intervention help focus patients and physicians on the most realistic outcome from a procedure and limit the use of procedures with low potential to achieve the desired result.
Although a goals of care discussion script does not exist, there are several important topics to address with patients. Table suggests some sample questions to assist in defining goals of care. The questions included in the table may be useful for the interventionalist trying to gather information before making a recommendation about potential procedures. Identify the patient's anticipated outcome and address expectations in the preprocedure discussion. This is of particular importance if the patient's expectations are unlikely to be met by the specific intervention. Some studies have indicated that “what seriously ill patients really want from medical care is relief of suffering, help in minimizing the burden on families, closer relationships with family members, and a sense of control.”15
When considering the options, and prior to meeting with the patient and family, the physician may choose to consider the following: How can I help reduce the patient's suffering? How can I maximize their sense of control? How will this procedure impact the family (in terms of increased burden of care, financial strain, emotional stress)? Am I acting in the best interest of the patient? And ultimately, am I helping?
Framework for a Goals of Care Discussion
This thought exercise helps the physician explore the risks and benefits of a procedure from a patient-centered perspective and provides an outcome-focused recommendation for the patient. In learning about the patient's values, goals for life and health care, and his or her expectations for outcomes of the procedure, the physician may discover the answer to the initial question: Am I offering this procedure because I can or because I should?
To highlight some of the issues discussed in the body of the text, consider the following case examples.
Chief Complaint: Emily is a 48-year-old white woman with metastatic lung cancer (pleural and bone sites of involvement) who now presents to the office complaining of worsening shortness of breath. She is found to have a large left-sided pleural effusion.
History of Present Illness: Emily presented with metastatic disease and achieved a partial response with a planned six cycles of chemotherapy, including resolution of her pleural effusion. She has had stable disease for 4 months off therapy. She tolerated chemotherapy well and has remained active, working part time and taking care of her two teenager living at home. Her appetite is good and she has gained back the weight she lost prior to diagnosis.
Chief Complaint: Ethan is a 48-year-old white man with metastatic lung cancer who also presents with worsening shortness of breath and is found to have a new large pleural effusion.
History of Present Illness: Ethan's lung cancer was metastatic at the time of diagnosis (lung, liver, and bone involvement), and he has been on chemotherapy for the past 9 months. His disease progressed through first- and second-line chemotherapy, and he was subsequently started on an oral, selective epidermal growth factor receptor-tyrosine kinase inhibitor 4 weeks ago. Ethan's activity has been decreasing steadily due to fatigue and shortness of breath. He now spends most of his day either in bed or in his recliner by the television. He is losing weight, and his present weight is 80% of his premorbid weight. Ethan's teenage children have been helping him with activities of daily living for 3 weeks.
The management of a new pleural effusion, from a medical perspective, is relatively straightforward and logical: thoracentesis with fluid analysis to establish a diagnosis (i.e., malignant versus infectious or other cause) followed by appropriate management. If the effusion was determined to be malignant, therapeutic options would include fluid drainage by serial thoracentesis or a semipermanent drainage catheter, antitumor therapy, pleurodesis, or medical management only. To determine the most appropriate course of action, consider the medical options in the context of the patient's goals of care.
In both of our cases, a bedside diagnostic and therapeutic thoracentesis revealed an exudative effusion with cytology positive for adenocarcinoma. Further imaging by computed tomography scan demonstrated progression of the underlying malignancy.
Emily has now progressed on first-line chemotherapy but still has multiple potentially effective chemotherapy options for her underlying malignancy. Her primary goal is to live as long as possible and see her oldest son graduate from high school at the end of the year. She understands she has an incurable cancer and has been preparing with her family and loved ones for her eventual death. She has prepared her advance directive and financial documents and is actively involved in life-closure activities: spending time with loved ones, light travel, finishing a writing project she started in college.
Ethan's cancer has progressed without any prior response to antitumor therapy. His performance status has declined precipitously. His primary life goal is to live as long as possible and see his oldest son graduate from high school at the end of the year. He also understands he has an incurable cancer and has spent time preparing his family for his death but has not felt well enough in the past few months to make any concrete plans. He would like to finish his advance directives and his will, but he has been too weak. With further questioning, he acknowledges that it is most important to him that he maximize his time at home with his wife and children.
Both Emily and Ethan are faced with a similar physiological problem: dyspnea caused by a pleural effusion and underlying lung cancer. They have similar primarily life goals: to live as long as possible.
Emily's clinical situation favors additional systemic antitumor therapy, but she needs immediate palliation of her acute shortness of breath and would benefit from a therapeutic thoracentesis. She would then be a candidate for second-line chemotherapy that ideally would improve or stabilize her malignancy.
Ethan's poor performance status and progressive disease suggest that further antitumor therapy might cause more harm than benefit. His shortness of breath may improve with a therapeutic thoracentesis. Depending on the degree and duration of symptomatic benefit from the thoracentesis, he may be a candidate for a tunneled drainage catheter. A discussion about transitioning to palliative care or hospice to provide additional expertise in the management of physical and psychological symptoms would be of benefit and help him address his life goals, completing important documents and maximizing his time at home with this family.
Palliative care is an interdisciplinary medical specialty based on an approach to patient care focused on relieving suffering in any dimension: physical, psychological, existential, or spiritual. IR is an important adjunct for palliation of physical symptoms in patients with cancer. The decision-making process to determine which interventions are appropriate for a particular patient relies heavily on a goals of care discussion based on the particulars of a patient's own life and medical goals in the context of the stage of disease and prognosis. Patients are more concerned with procedural outcomes and the impact on their life rather than procedural details. Asking patients about their expectations for a procedure and then focusing the preprocedure consent discussion on the anticipated most likely outcomes of the intervention is most helpful for decision making. And finally, before recommending a procedure, consider its likelihood of relieving suffering, maximizing a patient's sense of control, minimizing negative impact on the family, and genuinely helping patients achieve their goals.