Communication and Palliative Care in a 64-Year-Old Man With Pancreatic Adenocarcinoma

CASE REPORT

Dr. Epstein: A 64-year-old man presented with signs and symptoms of obstructive jaundice. Shortly afterward, evaluations, including computed tomographic (CT) imaging of the abdomen (Figure 1), revealed a locally advanced, American Joint Committee on Cancer (AJCC) stage III, unresectable pancreatic adenocarcinoma. The patient was otherwise healthy and maintained an Eastern Cooperative Oncology Group (ECOG) performance status of 1. The patient's jaundice cleared after the placement of a biliary endoprosthesis, and symptoms such as pain, early satiety, and fatigue also improved with systemic chemotherapy consisting of gemcitabine and cisplatin.

Figure 1.

CT cross-section of the abdomen: locally advanced pancreatic mass.

Dr. Abou-Alfa: Dr. O'Reilly, is this response typical of multiagent chemotherapy for advanced pancreatic cancer?

Dr. O'Reilly: In a situation like this, systemic therapy is appropriate, as several meta-analyses, one from the pre-gemcitabine era¹ and one involving gemcitabine-containing studies,² demonstrate a doubling of overall survival in patients receiving chemotherapy for advanced exocrine pancreatic cancer compared with supportive care. Furthermore, quality of life indices improve while patients are undergoing treatment with gemcitabine-containing doublets, such as with capecitabine³ and cisplatin.⁴ Pooled and meta-analysis data support the use of a gemcitabine–platinum combination in individuals with an ECOG of 0 to 1, such as this patient. The multi-institutional, randomized, controlled trial of FOLFIRINOX vs. gemcitabine⁵ in patients with untreated metastatic pancreatic adenocarcinoma provided not only improved response rates, progression-free survival, and overall survival, but also an improved quality of life over gemcitabine for a longer time. The dual effects of living longer and feeling better are some of the cornerstones of palliative care in general, including that used in medical oncology.

Dr. Shamseddine: Would you please tell us about the patient's understanding of his illness when you met him, and what he was told about the diagnosis at the initial consultation?

Dr. Epstein: At the initial encounter, the patient was accompanied by his wife, with whom he had two children. He was a retired school teacher, had never smoked or used alcohol to excess, and had a paternal uncle with liver cancer and a maternal aunt with breast cancer. The patient explained that he had done some reading about pancreatic cancer and was interested in anticancer therapies with the best-known chance of efficacy, but he also wanted to maintain a good quality of life. When asked, he and his wife said that they preferred candid and honest details about his diagnosis and prognosis. This information proved very useful for us, as we were able to build on it by informing him that while his cancer was incurable, it was treatable, and given his good performance status and absence of comorbidities, there was substantial reason to believe that he could benefit from chemotherapy with prolongation of life and maximization of its quality. The fact that the cancer was incurable was understandably difficult information for the patient and his wife to hear, but he said the discussion empowered him to build a proper perspective on his illness and to plan for the future.

Dr. Al-Olayan: The patients we commonly see come from cultural backgrounds wherein they often do not want to learn about their medical problems. Rather, they defer to their physicians and families to discuss medical details and make decisions with the health care team. How are these sometimes seemingly conflicting tenets of autonomy and beneficence reconciled?

Dr. Epstein: Individual patient perspectives (cultural, religious, and personality, among others), should be factored into discussions about disease state and treatment options, at the initial consultation and at all follow-up visits thereafter, particularly those entailing progression of disease or therapy changes. We recognize that, in some cultures, it is customary for patients not to want to be aware of the diagnosis or be involved in the treatment care plan. These wishes should be respected, as long as the patient confirms that this is indeed his or her wish and not solely the perception or wish of family, proxies, or friends, who usually are trying to act in the best interests of the patient, but may not always be clear on the patient's perspective on the situation at hand. Physicians should be sure to inquire about personal preferences for receipt of information and involvement in care, perhaps optimally at the beginning of initial consultations. Research demonstrates that most patients and caregivers want to be involved in their own care. The majority of patients with metastatic cancer want information about their disease,⁶ and control is often desired over life-support decisions.⁷ One study showed that patients deferred to physician-based decisions significantly more often in the subset of situations in which a cancer had metastasized and for which there was no evidence for treatment benefit; however, the majority of the 10,939 decisions made by all 5,383 patients were either patient-controlled or shared between patient and physician.⁸ A different study examining the decisions of patients with advanced cancer to limit life-sustaining therapy revealed that the strongest predictor that patients will be involved in such decision making (and a desire for symptom-based care) was agreement with physician treatment recommendations.⁹ Collectively, these studies underscore the importance of recognizing that most patients desire details, even about advanced cancers, that they desire a role in many decisions about treatment, and that physician–patient alliance is crucial.

Dr. Abou-Alfa: Discussing the implications of these diagnoses is difficult. What are some ways that doctors can feel more comfortable and do a better job with these conversations?

Dr. Epstein: Step-wise techniques for difficult discussions, such as disclosure of prognosis or breaking bad news, have been developed and described in the literature. Communication skills are being taught more to medical oncologists and often entail such techniques.^10–12 One such tool carries the mnemonic SPIKES¹³: Prepare an appropriate setting for the discussion; query the patient's perception of the illness; invite a sharing of the medical information; describe your knowledge about the patient's case in a sensitive, easy-to-understand manner; empathize with the patient's reaction to the news; and finally, strategize/summarize what will be done for the patient in further evaluations, treatment, and support services (Table 1).

Table 1.

SPIKES model of breaking bad news^*

Component	Description/verbal examples
Setting	Analyze key medical information (before meeting).
	Invite key family and interdisciplinary medical team players (before meeting).
	Arrange proper physical setting (quiet, private room with adequate seating, tissues, and water).
	At meeting start, make introductions.
Patient perspective	“I have already reviewed all of the medical information, but please tell me what the doctors have already told you about what's going on.”
	“What is your understanding of the current medical situation?”
	“I know all the medical details, but tell me more about who you were before this illness, and how this has affected you and your loved ones.”
Information/Invitation	“When talking to patients, I tend to give a lot of details about this medical condition and check in frequently with you. Please interrupt me if you don't understand something, or if you feel I am speaking too much.”
	“Would it be OK if I shared the medical information with you?”
Knowledge	“I'm afraid I have some bad news.”
	“Unfortunately, the tests did not reveal what we hoped they would.”
	“Given what's happened medically and what your perspectives and goals are, I would recommend X …”
	Recognizing the difficult nature of receiving bad news, use silence after breaking the news, avoid medical jargon, speak clearly but sensitively.
Empathize/Explore emotions	“You seem very upset by the news.”
	“I can't imagine how difficult this news must be for you.”
	“Your reaction to news like this is completely natural.”
	“You've done such a good job of coping thus far with the situation.”
	“I wish things were different.”
	“No matter what happens, we are going to be here to support you and your family through this.”
	“We've just discussed a lot: Tell me more about what you are feeling right now.”
Strategize/Summarize	“What questions do you have?”
	Summarize the next steps and appointments.
	Reiterate availability of team to field additional questions and concerns.
	Ensure appropriate follow-up and delivery of contact information.

^*Adapted from Baile et al.¹³

Dr. Naghy: What does the group think about the commonly cited concerns that candid conversations will both rob patients of hope and take too much time?

Dr. Epstein: Naturally, doctors are concerned that with the disclosure of bad news, patients may lose hope and suffer negative emotional (and survival) outcomes. Data from research studies, including one by Smith et al¹⁴ and the multi-institutional U.S. Coping with Cancer study,¹⁵ indicate that to the contrary, patients do not lose hope, suffer psychologically, or die quicker with disclosure of bad news or end-of-life discussions. Rather, there is less distress, caregiver burden, and utilization of intensive and life-sustaining therapies before death. In a 2010 study, Dow et al¹⁶ showed that patients would choose not to discuss end-of-life care with their oncologists if given a choice, but if they had to discuss such issues, the majority wanted to discuss them with their primary doctor and/or oncologist. Regarding the notion of time management, we would all agree that busy schedules factor into our inclination to leave these difficult conversations for later, but the literature suggests that visits with unaddressed emotional disclosures to a patient actually take more time than those encounters where physicians respond to such patient concerns.¹⁷ The numerous additional factors contributing to the difficulty of conversing with patients who have advanced cancer (lack of widespread communication skills training in medical education, patient literacy deficiencies, language barriers, and the clinician's limitations in prognostication ability) behoove us all to recognize and practice sound communication skills daily.

Dr. O'Reilly: I agree with Dr. Epstein, and because of our interest in improving care delivery with advanced cancer patients through improved communication methods, we have participated in research collaborations with Dr. Angelo Volandes, whose group specializes in studies using educational visual media. Volandes et al¹⁸ have shown in dementia and cancer populations¹⁹ that these decision aids enhance patient education about available care, increase confidence in decision making, and are well received. In a randomized study (in review) of video vs. narrative information on cardiopulmonary resuscitation in 56 patients treated at our institution with progressive pancreatic and hepatobiliary cancers, the majority of the subjects at the conclusion of the testing commented on the study topic as necessary for discussion early and often in the cancer care trajectory.

Dr. Epstein: Having improved clinically with systemic chemotherapy but still having locally advanced disease, the patient underwent radiation treatment to the primary tumor, tolerating it well but later needing a red blood cell transfusion for radiation-induced gastritis and anemia. A few months later, cross-sectional imaging revealed a stable primary tumor, but small liver lesions suspicious for metastases. Systemic chemotherapy with gemcitabine and capecitabine was therefore reinitiated. Approximately 6 months later, the patient presented with signs and symptoms of carcinomatosis. Cross-sectional imaging confirmed the presence of new, large-volume ascites (Figure 2), as well as an incidental pulmonary embolus (Figure 3). Treatment dose low-molecular-weight heparin was begun, as were diuretics, which did not result in symptom improvement. Therapeutic paracenteses provided only fleeting relief, so placement of a tunneled abdominal drainage (Tenckhoff) catheter was planned. After a discussion of the implications of the progression of disease in imaging, the patient reiterated that he still would like to consider further anticancer therapies while continuing to focus on quality of life. Treatment with FOLFOX was initiated.²⁰

Figure 2.

CT cross-section of the abdomen: new, large-volume ascites.

Figure 3.

CT cross-section of the chest: right pulmonary artery filling defect consistent with pulmonary embolus.

Dr. Ang: Regarding the pulmonary embolus that developed in this patient, what is the current consensus on prophylactic anticoagulation in pancreatic cancer? And what is the quality of the data on the utility of semipermanent drainage catheters, such as Tenckhoff, for malignant ascites and venting gastrostomy tubes for gastric outlet or small bowel obstruction?

Dr. O'Reilly: While thrombosis is relatively common in exocrine pancreatic cancer²¹ and although thrombosis (particularly early events) is known to portend worse survival in these patients,²¹ despite numerous trials of prophylactic anticoagulation, prospective randomized investigations^22,23 have yet to demonstrate a survival benefit. Further research demonstrating a clear survival benefit is necessary before routine prophylactic anticoagulation can be recommended in exocrine pancreatic cancer.²⁴

Regarding the Tenckhoff catheter and other palliative procedures such as draining catheters or ports, diverting surgeries, shunting, and others, our group and others²⁵ have had anecdotal success and relatively low rates of such complications as bleeding, infection, or discomfort. However, there are no randomized, controlled trials (for malignant ascites or gastric outlet tract or small bowel obstruction) to suggest that these modalities are necessarily better for patient outcomes than other modalities, such as opiates, corticosteroids, or octreotide. Individual patient, institution, and malignancy factors should be considered in the management of each case. For instance, patients with advanced ovarian cancer often have multiple intestinal obstruction points, making a better case for diverting colostomy.²⁶

Dr. Epstein: After 2 cycles of FOLFOX, the patient's course was then complicated by hypotension after Tenckhoff catheter placement. The patient was found to have both bacteremia and ascites infection with Staphylococcus aureus. Per standard practice,²⁷ the mediport was removed, a peripherally inserted central venous catheter (PICC) was placed for continuation of antibiotics, and the patient was discharged home. On a return visit to the clinic shortly thereafter, the physicians discussed goals of care with the patient and family in the context of the increasingly complex medical situation. The patient indicated that he desired a transition to solely comfort-based care at home and specifically wanted to not have cardiopulmonary resuscitation or mechanical ventilation in the event of a cardiopulmonary arrest. Home hospice with intravenous fluids administration was facilitated, and a do-not-resuscitate order was implemented.

The patient was readmitted to the hospital later that month with increasing abdominal pain and poor oral intake. CT imaging of the abdomen demonstrated progression of intra-abdominal malignancy burden. Because of elevated serum creatinine, the low-molecular-weight heparin was stopped, and an inferior vena cava (IVC) filter was placed. Furthermore, blood cultures were polymicrobial, and therefore the PICC was removed. After a few days of pain control and antibiotics, a new PICC was placed, and he was discharged home with hospice services. The patient died at home 6 days later, approximately 15 months after diagnosis.

Dr. Lowery: In the context of the patient's progressive pancreatic cancer and his wishes for comfort-based care at home, what were the rationales for the interventions during the last hospitalization and discharge home, such as the IVC filter and the intravenous fluids?

Dr. O'Reilly: On numerous occasions, the patient clearly communicated the importance of a good quality of life, and in these circumstances, it is unfortunate that he spent several days in the hospital during the last weeks of life. However, it is possible that the interventions allowed him more time with friends and family in his last days, with all pharmacologic and clinical care oriented toward his comfort. Alternatively, it is possible that he would have experienced an outcome as good, or even better, with an immediate initiation of hospice services once he elected to forgo further chemotherapy. While many of our patients experience the palliative benefits of instruments such as ports and catheters, in hindsight, this patient certainly suffered from the complications of the medical technologies that we warn patients of, but hope not to see. Regarding intravenous fluids, it is well-known that they can lead to third spacing in advancing illnesses, causing swelling and even discomfort (especially in bedbound patients at the end of life). Because this issue remains a controversial one,^28–30 we try to discontinue fluids in these settings and continue them only in ambulatory patients who report improvement with them. One challenge that arises in the end-of-life care of cancer patients is maximizing the hospice insurance benefit without sacrificing the coverage of potentially beneficial treatments, such as palliative chemotherapy. Overall, this case illustrates both the potential for therapeutic success and complications from the palliative treatment of patients with incurable cancers.

Dr. Epstein: In conclusion, palliative care is a multifaceted discipline aiming to help patients and families live with the physical, psychological, and social stressors of any serious illness (curable or not). As demonstrated in this case, palliative care entails much more than hospice-based care at the end of life. Arguably, everything that was done for this patient, from stenting and chemotherapy to anticoagulation, catheterization, and antibiotics, was palliative. Furthermore, honest yet sensitive communication characterized by early and frequent conversations aided in providing high-quality patient-centered care. While palliative care and hospice resources vary institutionally and internationally, both are widely and increasingly regarded as integral to the optimal care of patients with serious illnesses, including those with cancer. In their seminal 2010 study, Temel et al³¹ showed a survival benefit in those patients with advanced lung cancer who were randomized to both palliative care and anticancer care compared to those who had anticancer care alone. Future palliative care research in the oncology setting investigates how best to integrate multidisciplinary services across various clinical environments into the personalized care of each individual.