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June 2009

“Not the Whole Truth”

The Schwartz Center Rounds is a series of multidisciplinary forums where caregivers discuss challenging emotional and social issues that arise in caring for patients.  Names and clinical details have been altered to protect confidentiality.

Presenters: Oncologist (Dr. O), Nurse Practitioner (Nurse P), Physician Ethicist (Dr. E)

Abstract

An oncologist chooses to delay sharing clinical findings with a patient so as not to interfere with important events in the patient’s life. The care team struggles with the ethics of the decision and the feelings of guilt that ensue. The audience explores the question: Is it ever ok to be less than forthcoming or do providers always have an obligation to provide absolute truth?

Clinical Summary

Mr. Z was a 47 year old man diagnosed with very aggressive non small cell lung carcinoma. He underwent several rounds of chemotherapy with disease recurrence, was treated with radiation, surgical resection and began a clinical trial on which his symptoms and progression were stabilized initially. Nine months into the clinical trial, although he remained asymptomatic, an abdominal CT showed new lesions indicating likely tumor progression. Mr. Z was switched to a new chemotherapeutic agent, survived a few additional months, developed rare complications from the multidrug treatment regimen and ultimately died from his disease.

Issues Raised

Patient-Caregiver Relationship
Mr. Z was a professional economist with a magnetic personality who connected easily with those around him. He formed close personal relationships with many of his caregivers and was well loved by the entire oncology team. Nurse P, an oncology nurse practitioner, and Dr. O met Mr. Z just prior to an urgent surgical resection. Nurse P met Mr. Z again several times post-operatively to discuss the clinical trial. Once Mr. Z enrolled in the trial, Nurse P and Dr. O saw him every three weeks for nearly a year and developed an excellent relationship built on mutual trust and compassion.

Communication
Early in the trial, Nurse P spoke to Mr. Z about how he made decisions and how he preferred to receive information. Although Mr. Z asked appropriated questions, initially focusing on statistical data and quantitative probabilities, he admitted to feeling very overwhelmed and anxious and admitted that he probably did not want that information. Dr. O told Mr. Z that he was not a number and that it was impossible to know if numbers would apply to him as an individual. Nurse P suggested that Mr. Z focus on recovering from surgery, getting through chemo and they agreed to not to discuss the numbers or prognosis until he completed chemotherapy. While Mr. Z was clear that he wanted to be an active participant in the clinical decision making, it was also clear that internet research and gathering data about his diagnosis overwhelmed him and heightened his anxiety.

Censoring information
About nine months into the trial, Mr. Z was feeling relatively strong. Nurse P was aware of and supported his plan to pursue a personal goal by running a marathon and raising money for cancer research. Immediately after the marathon he had planned a trip to Finland to reunite with family members. New lesions were discovered on Mr. Z’s abdominal scan shortly before the marathon date. Nurse P knew how important these events were to Mr. Z and was concerned that sharing the findings and the implications for prognosis would increase his underlying anxiety and interfere with his plans. Nurse P and the rest of the care team struggled with the decision about when to tell Mr. Z about the results. Mr. Z did not specifically ask about the results of the abdominal CT scan because he trusted his providers to let him know if something needed to be addressed. Although they realized that they were risking a breach of trust, the team chose to delay sharing these findings with Mr. Z until he returned from completing the marathon and long awaited trip.

When Mr. Z returned, a repeat abdominal CT scan confirmed new, enlarging lesions. Nurse P and Dr. O confessed that they had waited to share these findings with him. They didn’t discuss Mr. Z’s reaction to their decision to withhold the information during that visit; rather they focused on making immediate changes to his chemotherapeutic regimen. At the next visit Mr. Z acknowledged that he probably would have been too anxious to go through with his plans if he had known about the results.

An experienced oncologist in the audience shared that he almost never gives patients bad news in December (or before an important event in their lives), choosing to wait until after the holidays (or special event). Another audience member noted that there are times that a provider may know that a patient’s disease is progressing but it may not be the right time to tell the patient. A third physician in the audience suggested that clinicians should not look for information (via diagnostic testing) at a time when bad news would be unwelcome (e.g. before a family wedding). Dr. O noted that selective disclosure is something that he learned with experience: early in his career he tried to be very accurate in predicting and sharing average survival rates, now he almost never does that. A clergy member in the audience shared a biblical reference involving absolution for not always telling the whole truth.

Provider Guilt
Nurse P felt that she had lied to Mr. Z by withholding information. She related how that guilt stayed with her for years and how she frequently ruminated and wondered if she had done the right thing. One panelist noted that it appeared Nurse P had carried this guilt up until this opportunity to share her story at Schwartz Rounds.

The Ethics of withholding information
Dr. O stated that there are many tough ethical decisions in medicine and health care providers do not always know “if we have done the right thing.” According to Dr. E, the ethics expert, while colleagues might expect caregivers to follow the “rules” of presenting the full facts to patients all the time, within trusting relationships, there can be individualized rules. Dr. E further stated that “facts can drive us crazy,” and that “full facts all the time can be too much.” When the audience was polled, at least four other providers in the room raised their hands to show that they would have made the same decision.

It was noted that there are ethics involved in following the protocols for clinical trials as well, as inaccuracies can affect trial results and have implications for future patients. Dr. O shared that he is more likely to do what he thinks is right for an individual patient than to stick to the trial protocol, though of course he would report any protocol deviations. An audience member noted that sometimes providers may be “willing to do the something wrong for the right reason.” Nurse P offered that the team discussed the clinical trial implications extensively ahead of time and decided that if progression was confirmed on the follow up scan that they would report the date of the first scan as the date of progression.

Trust vs. Truth
Nurse P had developed a trusting relationship with Mr. Z. She told him that she would always tell him the truth and would advise him when to stop treatment. At Mr. Z’s wake, a close friend told Nurse P that Mr. Z knew that Nurse P would “do the worrying for him.” Dr. O said that in discussion with Mr. Z he had promised that the team would be “honest” with him, implying that they would not necessarily always share the whole truth. The ethicist, Dr. E asked the audience to consider the relationship between truth and trust. Responses included: “they are the same thing,” “trust trumps truth,” and “truth is the foundation of trust.” ‘Trustworthiness’ was described as a character trait based on knowledge, skill, and truth. Audience members acknowledged that trustworthiness had to be earned. One audience member noted that trust is an iterative process, built in installments over time. As trust is gained, a patient’s confidence in the provider increases and their need for details diminishes. Nurse P and Dr. O acknowledged that such was the case for Mr. Z as he would say “you’ll tell me when I need to worry.”

Sharing the burden
Nurse P carried her guilt without burdening Mr. Z with her need to be immediately forgiven. She focused on her patient’s needs and carried the burden of her guilt a little longer. An audience member applauded Nurse P’s decision as she noted that it made Mr. Z’s life easier and felt the progression was addressed in a timely fashion. Another physician wondered aloud whether this approach was regressing towards paternalistic medicine. A third audience member called Nurse P’s action “heroic” stating that it is easier to tell the whole truth and walk away with no burden; making this decision and sharing the burden was compassionate and admirable. Another audience member noted that there are many different styles for giving patients hope. Another clinician agreed that Nurse P’s action was based on the principles of compassion yet noted that an assumption was made about what the patient could bear and wondered “how do we decide what a patient can bear?” Dr. E pointed out that we allow people we trust to act on our behalf and that Mr. Z had willingly asked the health care team to bear the burden with him. Providers often struggle with these decisions. Nurse P cared for Mr. Z enough to bear his burden. An audience member commented that titrating the level of prognostic information that would be helpful to a patient and when to share it is a big responsibility.

Lessons Learned

• Early in clinical relationship, it is helpful to explore how patients want to receive diagnostic and prognostic information and how much they want disclosed.
• Within trusting clinical relationships, providers come to a unique understanding with each patient about how information is shared and how to support a shared decision making process.
• Many providers agree that there are times when disclosing the whole truth is not the best or most ethical choice for a particular patient.
• Sharing the burden of truth can be an act of compassion, a way of making the patient’s journey easier.
• Collegial support around difficult clinical choices in the heath care relationship can be therapeutic for caregivers.