Discussing cancer treatment with the terminal patient

For everything, there is a season…
- Ecclesiastes

“Are you giving up on me?” My patient looks at me severely. “There must be other treatment options! Aren’t there some experimental drugs out there? I have beaten this cancer twice before. Are you saying that I can’t beat it again?”

No one can ever know with absolute certainty whether my patient’s newly recurrent cancer might miraculously disappear with one more treatment. His recurrence, however, has developed very quickly and is growing very rapidly. New cancer nodules are developing weekly. I have never seen a patient with a cancer this aggressive have a meaningful, sustained response to further treatment. The research literature confirms my impression.

It is always difficult to know what to recommend. Although “no further treatment” is always an alternative, I routinely run through all of the options, reviewing whatever is available, and hoping that we land on the combination that offers that improbable, one-in-a-thousand cure. However unlikely, we sometimes set up appointments and hope for the best.

Today, though, my sense is that it is time to focus on new goals.

The decision not to pursue more studies and more treatment can be very, very difficult. Surgeon and journalist Atul Gawande in an essay in The New Yorker entitled “Letting Go,” writes about how difficult it can be for physicians and patients to halt cancer treatment as the end of life draws near. The dilemma, he concludes, “arises from a still unresolved argument about what the function of medicine really is — what, in other words, we should and should not be paying for doctors to do.” In Gawande’s view, the profession should equip and supply doctors and nurses “who are willing to have the hard discussions and say what they have seen …”

In most circumstances, this moment might be the first occasion that the patient hears a physician say clearly, “I do not think we should continue with the cancer treatment. It is time to stop focusing just on the cancer and spend more of our effort focusing on the rest of you.”

Those are very difficult words to say. On the other hand, I cannot begin to imagine what it must be like to hear your physician utter them.

At some point, the topic of stopping cancer treatment must be approached clearly and compassionately. An essay by Albert Lim, MD, sent to me by a patient, reminds us that physicians often avoid these difficult discussions. We push on with futile treatments and expensive tests because “it is difficult to say ‘no’ in today’s world.” Coupled with our own doubts, the patient and family sometimes want us “to do something, anything, everything.” There are situations where we need to learn to think through the choices and then choose to do nothing.

A recently published article might help me navigate these difficult discussions in the future. Dr. Jennifer Temel and other cancer physicians at Massachusetts General Hospital followed two groups of patients who were suffering from advanced, uniformly fatal lung cancer. One group received “standard” cancer care with chemotherapy and aggressive treatment. The other group was offered the “standard” care but also met very early on with the Palliative Care team. Overall, the Palliative Care group went on to have less intense treatment, less futile cancer treatment near the end of life, an overall better quality of life, and significantly less depression. They were more likely to have talked with their relatives about their end-of-life wishes.

Surprisingly, the Palliative Care group, despite receiving less intense cancer treatment, also lived a bit longer! For this group of incurable cancer patients, less aggressive care actually resulted in longer and higher quality survival.

As the conversation wraps up, my patient reviews all of his options. His previous therapy was difficult and he is not interested in spending any more time at the hospital than absolutely necessary. He and his family go back and forth. Finally, they all decide against any further cancer treatment. They will continue the conversation at home.

I am relieved. He has made what I consider to be a good choice and appears to be at peace with the decision. The most difficult decision he and his family have ever had to make had, in the end, been simple. The time had arrived.

Bruce Campbell is an otolaryngologist who blogs at Reflections in a Head Mirror.

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  • Susan

    As a nurse, I have witnesses the peace and tranquility of patients, who having had their palliative care consult, no longer feel obligated to fight. They often go on to enjoy their last remaining weeks and months, with a level of dignity and solace that aggressive and fruitless treatment does not permit.

  • dspacl

    Dr. Campbell gives a succinct commentary on the conflict that doctor and patient/family feel when having to make difficult treatment choices. I like that he uses an informed view, citing recent and relevant articles, and then he gave me a jolt when I got to the line, “There are situations where we need to learn to think through the choices and then choose to do nothing.” He is reverting to the archaic dichotomy that making an informed and reasonable treatment choice to not continue disease remittive therapy is in essence a choice between “doing something” versus doing nothing. I suspect he did not state it that way to his patient otherwise it would not be a choice at all, rather it is really a choice to avoid further treatment related morbidity and to maximize the quality of precious time. That’s doing something; something that is invaluable for his patient and their family. I would rephrase that portion of his commentary to say “we need to learn to think through the choices”…and do everything we can to support our patients and families to improve their experience of life-limiting illness.

  • http://www.myheartsisters.org Carolyn Thomas

    For the past decade, I’ve worked in hospice palliative care, where there is an old nurses’ joke that goes like this:

    Q: Why do they put nails in coffins?
    A: To keep the oncologists out!

    This admittedly dark humour carries a sharp glint of truth. The promise of “one more round of chemo” – even as the patient’s declining condition clearly indicates such treatment would be futile – seems not only questionable but cruel. Consultations with palliative care experts should and must be referred early on in the trajectory of the disease. Both patients and their family members can access this tremendously helpful support long before the patient’s final days.

    We used to observe that the dreaded “D” word was rarely used over at the cancer hospital, perhaps because doctors (whose training and expertise lies in saving patients) might see the inevitable end-of-life discussion as some kind of failure, because families cling to this odd conviction that somehow Dad or Mum should continue to “fight” this disease eternally, because patients who have already had every aggressive curative treatment possible hold out unrealistic hope that this time, this treatment might actually work.

    As a very wise palliative care physician once told me: “Sometimes, just because something CAN be done doesn’t mean it SHOULD be done.”

  • http://Www.twitter.com/alicearobertson Alice

    Sorry my copy button isn’t cooperating but Carolyn..your quote about….just because something can be done means it should be done is the moral of Frankenstein….should be required reading for every teen.

    The quote at the beginning is appropriately from scripture about the seasons of our life….the popular song…To Everything Turn…Turn..Turn…there is a season…would often run through my mind…..about “every purpose under heaven”.

    Two of my children have been diagnosed with cancer and one was sent home to die…an inoperable astrocytoma brain tumor…a horrible death…the doctor told us the details (there was a social worker there). If you click on either my name or picture it takes you to my Twitter with three updates on my daughter with cancer. The first one takes you to a link about our documented miracle with a Cleveland Clinic doctor showing you the MRI with the tumor and the damage.

    All this to say that I have experienced firsthand a doctor telling us there is no hope. It is such a sad memory I still have problems taking my daughter in for her cancer consultations. Watching my daughter drink radiation crushed my mother’s heart….because I knew what radiation had did to her older brother. I know all of what the doctors did right…and wrong…how some touched and helped heal my heart…while others broke it. Which means articles like this are vital…even if only one person listens,

  • Dr. J

    In the emerg I see a fair number of cancer patients who are very clearly at the end of life who are enrolled in clinical trials. Many of these patients tell me that they are on a new state of the art chemo therapy and need to get patched up for their next round. They are all hoping to be cured. I suspect these folks have not actually given informed consent to the trials they are enrolled in as they really think they will be cured, while what they are actually doing is participating in research that is unlikely to help them, though quite likely to help future cancer patients.

    When someone comes to emerg on their nth round of experimental chemo, still thinking they will be cured and clearly dying I try to get them involved with palliative care, I tell them that no matter how aggressive they would like to be with their cancer we should also be getting aggressive with symptom management. They often decline and tell me they just want aggressive medical care so they can get to their next round of chemo.

    On Christmas day I had a guy in his mid 50′s on a phase II clinical trial for a cancer that had metastasized to his lungs, bones, liver and pancreas. He had multi organ failure and diabetic ketoacidosis and had been sent in by his oncologist. He told me to ‘do whatever it takes to get me to my next chemo’ and told me that ‘the team’ felt there was a real hope for cure with this treatment. I treated him medically (aggressively) and suggested we get the palliative care team involved, but he refused. I suggested we get his chaplain to attend the hospital and he refused I suggested we call his kids from out of town and have them come in and he refused. I talked to his oncologist who was also mainly concerned with ‘medical stabilization’ and felt the rest could and should wait. He died later that day in a curtained room in the emergency department, without any privacy and only enough room for a couple of family members at a time to see him. His family was really angry with the emerg staff, mainly because the oncologist had explained that morning that his medical problems were reversible and once corrected he would be able to get to his next chemo, so for them it was an unexpected death.

    I know this oncologist, he’s a great guy, but he has no concept of managing the reality of the situation. In this circumstance the result was a messy death with lots of loose ends. I give bad news to patients and families all the time, and usually I can help them to understand the situation, but with cancer patients it’s different. Then I’m just Johnny-come-lately, and not even a cancer specialist so often I am perceived to have no business telling them they are dying when their specialist has already told them they are not. When I see this I think that ‘the team’ has really failed these patients, and for the patients on clinical trials I think they have had an ethical lapse in failing to offer the patients appropriate informed consent.

    • http://www.myheartsisters.org Carolyn Thomas

      Dr. J – thanks for sharing this tragic story that so perfectly illustrates the point of Dr. Campbell’s post.

      This is a true tragedy for all concerned: for the patient, for the family, and for the Emerg staff who are left to clean up the mess created by other “professionals” who appear to be in utter denial. As for your oncologist pal, pls re-read why coffins have nails (comment #3).

      He may be a “great guy” (although what kind of a “great guy” has “no concept of grasping reality”?) It’s unfortunately a scenario seen in palliative care with appalling frequency; in many cases, we have to admit imminently dying patients to the in-patient hospice unit directly from Emerg – patients whose oncologists have not even brought up the subject of registering for palliative care. In fact, our hospice education program started teaching “How To Break Bad News” courses for physicians and nurses several years ago to help address the very bad job many health care providers – including oncologists – are doing in this area.

      And enrolling this type of patient in a Phase II trial that he has been mistakenly led to believe will cure him of metastatic cancer could likely be described in far stronger words than a mere “ethical lapse”.

    • pj

      Gosh… Sounds like it’s time to ask the hospital ethics commitee and the ED Med Dir (unless that’s you) and maybe the Chief of staff to sit this Doc down for a serious talk.

      You and these patiens/families should not have to go thru that.

  • http://peoplebeatingcancer.org/ David Emerson

    Your post makes the assumption that conventional oncology is the only choice available to cancer survivors.
    I was dx with multiple myeloma 3/94. I underwent several years of aggressive conventional oncology including VAD, cytoxan and a pbsct. I relapsed twice and was told that “nothing more can be done” in 9/97. I then began antineoplaston therapy in 11/97 and achieved complete remission in 4/99 where I remain today.
    If I had listened to my conventional onc in 9/97 I would be dead today. If I knew then, 3/94, what I know today I would have saved myself pain, time, anxiety, countless negative side effects of conventional therapy, a 20% lifetime risk of a secondary cancer and lots of money.
    While I agree that it is difficult to find accurate information about non-conventional therapies on today’s internet, I think it is critical for cancer survivors to educate themselves.


    David Emerson

    • pj

      David, I’m glad to hear of your recovery, but I suspect many of us could relate stories of false hope given to patients who put their faith in non FDA/investigational treatments like the one you believed saved you. The science behind antineoplaston therapy is not encouraging.

  • http://drpullen.com medical blog

    When I choose an oncologist I try to choose one who knows when to say enough, and has the courage and compassion to do it well.

    • http://Www.twitter.com/alicearobertson Alice

      But how can the average patient find out this information? Unless I have read an online posting or article sometimes I feel like throwing a dart at a list of names…and once resorted to printing out the doctor’s names I was allowed to see in the network…cut each name up…put it in a hat…said a prayer..put my hand in and pulled out the name and made an appointment.

      I wish more doctors were open to email from prospective patients. I would pay whatever fee they would want to discuss with them…because the travel time and mental trip then quick visits are exhausting.

  • Colenso

    Unrealistic expectations may be created by inappropriate use of metaphors.

    Nobody ever “fights” cancer, “beats” cancer or is “beaten” by cancer. We don’t use the language of combat to describe heat disease do we? Imagine: I’m gonna fight this aneurism, this angina, this infarction until I show him who’s boss. So why use such inappropriate metaphors for cancer, that eventually. when the cancer returns for the third time, can only encourage unrealistic expectations?

    Further, the implication of the inappropriate metaphor of “fighting” or “battling” cancer is that if you fight hard enough then you WILL beat the critter. And, on the other hand, if you are too faint hearted or craven then you won’t. So on top of everything else, the admission and realisation that one is indeed dying is then accompanied by a sense of failure at not having fought hard enough. Gee, perhaps if I had just fought a little harder then I would be walking out of hospital a free man – just like all the other winners! God what a loser I must be!

    Such talk, straight out of the locker room, is perhaps to be expected of a society like the USA that divides everyone into winners and losers and insists that winners win through sheer hard work and dedication whilst losers lose because they simply didn’t try hard enough.

    But there is not a single study I know of that demonstrates clearly that having a positive attitude even, let alone a combative attitude, towards cancer changes patient outcomes one iota.

    Cancer is not an Invasion of the Body Snatchers or The War of the Worlds. We already have too many fake “Wars” as it is, wars that can’t be won because they were never a true war in the first place: The War on Drugs; The War on Terror.

    So let’s stop with The War on Cancer, and all this silly, macho talk of beating or of being beaten by what is so often a completely uncontrollable, cellular multiplication of our own body’s making.

    • http://www.myheartsisters.org Carolyn Thomas

      It’s like military combat indeed out there, Colenso.

      Author Barbara Ehrenreich, author of the book “Bright-Sided: How the Relentless Promotion of Positive Thinking has Undermined America” would likely agree with you, too.

      She writes of her own breast cancer journey, and how lonely this journey can be when you’re surrounded by relentless pink-waving cheerleaders who may not tolerate normal patient emotions like fear or distress or anger over a terrifying diagnosis – each of which apparently seriously threatens your chance of “beating” the disease.

      Patients tend to feel supported and rewarded for being “brave” in this “fight” and lauded for “not giving up”, while doctors get to feel like saviors when their patients “win” by responding correctly to each repeated bout of radiation or chemo.

      When my own Dad lay dying in a 3-bed acute care hospital room of metastatic lung cancer, he was not being a “good” patient. A good patient is treated, recovers, and then goes home feeling better. Everybody is happy, patient, family and hospital staff.

      But my Dad was not being a good patient. No matter how well he was cared for, he was not going to ever get better and be discharged home.

      A number of studies have actually shown how dying patients in acute care medical facilities actually spend less time being attended by nursing staff, wait longer for call bell replies, and are even admitted to rooms that are farthest away from nursing stations.

      It seems that discomfort around the ‘D’ word can extend to health care professionals as much as to our patients.

  • http://CenterforCancerCounseling Frances Baumgarten,Ph.D.

    Bruce, thank you for this important article. Many of these conversations originate in my office, where patients sometimes find it a bit safer to say anything, and end in a discussion with their oncologist for a realistic evaluation of treatment options and time. My patients often tell me that they hesitate initiating this convesation with their docs because they do not want them to think they are giving up. I suspect this happens both ways, from doctor to patient also. What we sometimes overlook is that it can be empowering, less chaotic and less out of control (for patients and their family members) to be able to make your own end of life decisions and control how you spend your time. This type of team work between patients and doctors benefits everyone.
    Once again, thank you, Fran Baumgarten

  • http://www.froedtert.com/HealthResources/ReadingRoom/HealthBlogs/Reflections/ Bruce Campbell

    Thanks, everyone, for your comments. Much appreciated.

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