Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

When Do We Stop Talking about Curative Care?

Timothy Gilligan, MD

[Citation: Gilligan T. When do we stop talking about curative care? Innovations in End-of-Life Care. 2002;4(4), www.edc.org/lastacts]

Truth and honesty are delicate issues in the world of cancer care. What cancer patients and their loved ones should be told and how they should be told it remains a challenging issue for anyone caring for them. While it is easy to condemn lying and to embrace honesty, brutal declarations of the truth can be damaging and, based on what my patients tell me, are not uncommon. In the abstract, it is easy to assert that all patients have a right to know to details of their condition and their prognosis – and surely they do – but it becomes more complicated when the patient doesn’t want to know, or if the patient is ambivalent. Denial and hope can be key elements of a patient’s strategy for maximizing psychological quality of life in the face of a devastating diagnosis. Building honest relationships and giving patients the information they want or need while respecting their limits and their need for hope represents a challenge confronted by everyone who works with these individuals. However, all too often, the prioritization of hope or the perceived psychological frailty of cancer patients become excuses to withhold fundamental information that patients need in order to make plans for their care and for their future. As an oncologist, first in training and now in practice, I’ve been very interested in the question of why we providers sometimes have so much difficulty being honest with our patients.

This issue of Innovations explores an effort to integrate palliative care upstream at a cancer center, specifically for patients with advanced lung cancer who may still be pursuing treatment for their disease. This effort brings up the question of when and how, we, as oncologists, and our institutions as cancer centers, founded to fight the cancer, shift our language away from talking about curative treatments. At what stage do we know we aren’t talking about a cure any more? And what do we mean by cure—a remission that lasts five years? How do we share this knowledge (often filled with caveats and probabilities, but no prognostic crystal ball) with our patients?

Pragmatically speaking, for patients with stage III and IV non-small cell lung cancer, the outlook is grim. While some patients with IIIa disease can be cured, as can fewer patients with IIIb cancers, stage IV disease (like extensive stage small cell lung cancer) is generally considered incurable. Most such patients are dead within a year and only 1 or 2 percent are alive five years following diagnosis.¹ I believe that, for any patient with metastatic disease, it should be made clear that this is a terminal illness and any therapy is aimed at reducing symptoms or extending life for some limited period of time.

This is important, in part, because current chemotherapy for metastatic lung cancer only extends survival for about two to three months. The length of time patients spend receiving chemotherapy is longer than the amount of time the average patient gains as a result of chemotherapy. There is evidence that chemotherapy improves quality of life in lung cancer patients, but the quality of life experts I know are not entirely impressed by this data. Patients need to balance the pros and cons of chemotherapy before making a decision, and bandying about notions of cure would be very misleading.

So how does this language of curative treatments creep into a setting of metastatic lung cancer? To sustain hope? To justify chemotherapy? To avoid upsetting the patient? To sustain the oncologist’s own denial about how little progress we have made in this area of oncology? Because the truth in these settings is too much to bear? It depends on the specific situation but I suspect these misleading moments have as much to do with the oncologist’s frailties as the patient's.

The issue of balancing hope and truth is complicated and varies from patient to patient. Most of us try to pay attention to the cues from the patient in order to determine how much they want to know. At the two extremes, there are patients who say flat out that they don't want to hear anything about their prognosis and there are others who ask how long they have to live. Even then, it is not always clear what patients mean by these words. Most patients are somewhere in between. My experience is that even though it often feels bad to me, most patients and families are grateful for a frank (but gentle) assessment of their prognosis. It's sort of an odd situation—I recently was speaking with a middle-aged woman, her husband, parents, and children about the fact that her prognosis suddenly looked much worse than her previous physicians had thought, and that her life expectancy was on the order of a few weeks to a few months. Upon hearing the news, everyone started screaming and crying. Now, especially in the world of white America, one hates to create a fuss, and my impulse was to feel badly for upsetting them. But then, shouldn't everyone be screaming and crying when a middle-aged woman is about to die from cancer? There is a tension here: you don't want to upset the patient, but the reality is very upsetting. An unfortunate impulse can arise to smooth things over rather than confront the difficulty of the patient's situation.

Efforts to improve communication must take into account the trauma and loss that both sides of the patient-caregiver relationship experience during the course of a terminal illness. I don't want to trivialize this issue, but it reminds me of high school conversations about "nice" ways to break up with someone. No one likes giving bad news. It's tough to watch the reaction and it takes precious time because you want to help them cope. (This is not meant to sound heartless, but in modern medicine, it is naïve to ignore the time constraints felt by practitioners.) Obviously there are more and less harsh ways of delivering bad news, but sadness and anger are appropriate reactions to hearing that one has a terminal disease (or that someone you care for is dumping you) and an important obstacle to these conversations is our discomfort with these feelings. I find these conversations one of the most meaningful parts of my work and I take pride when I perceive that my skills in this area are improving, but it is wrenching and draining to take someone's hand and walk them down the path that leads to that person's realization that he or she is dying of cancer. No matter how kind you are, it's still close to the worst news you could possibly give them. Delivering such bad news also weighs on the practitioner because it reflects a failure of our profession to develop more effective therapies and because it signals the nearing loss of someone with whom one has built a significant relationship.

How much truth patients and their loved ones can handle is an important issue here. We all know that denial and other defense mechanisms often allow people to cope with what would otherwise be unbearable. I don't believe this ever extends to the point of lying to the patient; I think of it more as withholding information that patients are indicating they don't want to hear. Patients typically focus on the best case scenario, so one has to actively avoid laying out false hope. It is very important to pick words and timing carefully and, again, following the patient's cues is essential. To me, this means allowing them time and space to ask questions and then seeing what they want to know. Sometimes it's just trying to sense the feeling in the room. I found myself in several situations immediately after I finished my training where a rather specific and strong tension permeated the room and it took me a while to identify it as the patient wanting to talk about prognosis but being scared or unsure or reluctant about initiating the conversation. In retrospect, I felt stupid, like I was discussing everything except the most important thing. And I suddenly understood why my conversations with those patients seemed to be progressing so sluggishly. But one has to learn to recognize the cues and sometimes they're subtle and sometimes you misread them. I am fortunate to work with nurses who help me see what I otherwise might miss and to have had a number of outstanding clinicians supervise my training in whose footsteps I can follow.

Although the impulse of many physicians I worked with in my training was to give less rather than more information in these settings, my experience so far indicates that patients prefer to have too much rather than too little understanding of their situation. Several times in my fellowship I went back to speak with patients alone, after seeing them with the attending physician, in order to give them a more accurate understanding of their poor prognosis. One woman had persistent metastases from her lung cancer after chemotherapy, but was told she was in remission. Another had multiple brain and other visceral metastases from melanoma, but hadn't arranged her affairs and didn't realize she would likely die soon. I worried at those times about whether I had crossed the line where honesty becomes insensitivity (or worse). I was surprised how many phone calls and emails I later received from these and other patients or their families expressing gratitude that someone had finally wiped away the vague euphemisms and allowed them to understand what to expect.

While I try to respect patients' limits about how much to tell them, I do think there are times that one has to give people more information than they want. When they have a level of denial that is leading to poor decisions or to a failure to make important plans for the future, then I sometimes feel obliged to get them to confront their prognosis before they feel ready. This is especially relevant for parents with young children or other major responsibilities. On the other hand, working with residents and interns, I'm often struck by how frustrated they get if someone who is obviously dying of cancer refuses to acknowledge this fact and behave like someone dying of cancer. They don't appreciate that the patient generally is much more aware than they give him or her credit for, and they undervalue the utility of denial. In these settings, I worry the truth becomes something of a club and I worry about the young physicians bashing the patient over the head with it. But I don't think it's an easy balance.

My final thoughts concern the interaction between palliative care providers and oncologists. I have found that the involvement of a palliative care service is very helpful when it becomes clear that anticancer therapies are failing, especially when the patient is in deep denial or is refusing to discuss the prognosis. I believe that some patients find it easier to discuss end-of-life issues with someone other than their oncologist. Oncologists and patients build a relationship based largely on fighting the cancer. In terminal cases, you get to a point when the fight has to end, but hearing this from your partner in the fight can seem like abandonment and giving up. You've built this bridge of hope that you'll be able to keep the disease at bay for as long as possible, and to some extent denial gets built into the relationship. It's been my strong impression that when the time comes to change course and focus on palliative measures, it's easier for some patients to have those important conversations about death and what they want to do with whatever time they have with a new person who isn't invested or implicated in the relationship built on the hope of holding the cancer off with chemotherapy or other treatments.

To put it differently, what my patients often appear to want to hear from me is how we're going to fight their cancer. As oncologists go, I have great respect for the limitations of what chemotherapy can accomplish, yet I've found many patients to be very difficult to dissuade from receiving chemotherapy when I didn't think it was a good idea. While sometimes I can also be their palliative care doctor, I've found it extremely helpful for some patients to have the palliative care service come in – sometimes with me, sometimes on their own – to have a "it's time to change the course" conversation (in addition to helping with symptom management). I know the obvious rejoinder is that I'm simply not good enough at these conversations and I'll readily admit as much. I still think that the value of palliative care providers is not just that they're better at these conversations, but that they're not burdened by the history of a "we're going to fight your cancer together" relationship. Clearly, many patients do want to have end-of-life discussions with the oncologist with whom they've built a relationship of trust over the months or years: one has to make decisions based on the individual patient. And I certainly do not mean to imply that the oncologist should exit when the palliative care team arrives: the palliative care team is an addition, not a substitution. The oncologist must be actively involved in communicating with the patient about the transition from anticancer therapy to "palliative care only;" to withdraw at that point is to betray the patient's trust. A transfer of care may occur when a patient goes into hospice care, but it is essential that patients not feel abandoned by their oncologists when it becomes clear that death is near.

For me, it's not helpful to think about these issues in terms of people's rights or in moral absolutes. Cancer and mortality are intimate issues and our successes and failures of communication take place in the context of very personal relationships.

Figuring out the "right" thing to do or say is much more about the ongoing process of learning to care for my patients in the best way possible—navigating an individual course with each person, one that we find together.

References:

1. Ginsberg RJ, Vokes EE, Rosenzweig K. Non-Small Cell Lung Cancer. In Cancer: Principles and Practice of Oncology, 6th ed., VT DeVita, S Hellman, SA Rosenberg (eds.). New York: Lippincott, Williams and Wilkins, 2001, 925-983. [Return to Personal Reflection]

[Post a Comment]