I can't tell you the number of people who complain to me about having their hope taken away. Exactly what this means, though, isn't always clear.
Sometimes an oncologist will tell them (so they say) that they have a month to live. Sometimes their cardiologist tells them (so they say) not to travel to their grandson's Bar Mitzvah. Sometimes the spine surgeon tells them their back will always hurt, no matter what. So they say.
Patients tell me a lot of things. I'm not always sure what other doctors really told them, but what is important is what the patient heard. The oncologist might have said "incurable" but followed it up by "but treatable for years." I suspect after hearing "incurable", not much else gets in.
One thing I've finally learned after a number of years is that patients actually listen, even if you don't think they do. What they hear is a different story. Depending on their mood and circumstance, they may hang on single phrases, subtle inflection, the way your eyes dart.
To be an effective physician, you must also be an actor of sorts; not in the sense of pretense, but in the way you pay attention to everything your words and body do, and how your audience reacts.
I had a patient a few years back, a very pleasant older woman, who came to me with difficulty in swallowing. There can be a number of different reasons for this. A radiographic study, however, showed a lesion in her esophagus that was almost certainly cancer. Normally, I won't speak on the phone to people about such things, but she and I had decided for various reasons that this would be the best way to communicate. I told her about the results:
"There is something blocking your esophagus. This is why you're having trouble swallowing."
"What do you mean, "something"?
"Well, lots of things can cause this, for example, bad acid reflux. But cancer is on the list, and we have to figure that out right away, so that if it's cancer, you can get the best treatment possible." In my mind, cancer was really the only possibility here.
There is something about the "C"-word. Despite the fact that it refers to hundreds of different diseases, some of them not particularly bad, it stops people in their tracks. Often, once you say it, everything else is noise. That's why it's important to have a plan. When a patient hears the C-word, the instructions you give them afterwards are often missed. In this case, I had already called one of my GI colleagues and gotten the ball rolling.
"I have a phone number and name for you. Do you have a pen?"
"Um, no, hold on."
"Call Dr. GI at this number and tell him I already spoke to him about you. He'll know, and he'll get things rolling. OK?"
"Your welcome. Call me if there are any problems."
I received a call from the GI doctor later in the week. He biopsied the lesion. It was all narrowing caused by reflux. No cancer at all.
Nothing is really hopeless, but defining "hope" is very important. Pain is of course a common complaint in the doctor's office. Pain is not easily measured. I can't X-ray it, I can't palpate it. Also, I can't always make it go away.
It is important to set proper expectations. If a patient sees me about chronic pain, and they've been to a horde of specialists and subspecialists without much releif, chances are good I'm not going to cure them. That doesn't mean I can't help them, and give them some hope. I usually tell them quite frankly that I don't know how good a job I'm going to do, but that I'm going to try very hard. I beg their patience in the face of great pain, and in return promise to do my best. But I make clear that my goals are modest: I will try to make the pain more endurable, less intense, less of a constant focus, but I probably won't make it go away. Early honesty pays back with interest.
And back to cancer. With cancer, we have statistics. We know, for instance, that of "x" number of people with a particular disease, "y" will be alive 5 years from now. But we can't always tell whether a particular patient will be one of the "y" number of people alive, or in the group of those who died. That is one of the reasons nihilism isn't useful.
As a resident I admitted a young woman to the hospital. Her primary care doctor had discovered a large mass in her brain, and asked us to find the cause. After working her up, we found a primary lung cancer. 5-year survival for this type of cancer at this stage is less than 3%, meaning of 100 patients similar to her, only 3 would be expected to be alive in five years. As it turned out, she was one of the three, and in that time, she accomplished some marvelous things.
Hope. Had we taken it away, things might have been different. That doesn't mean lying---she knew the statistics, planned for the worst, but had hope she would be one of the three, and fought hard to get there.
Hope is one of the intangibles that physicians can offer patients. Yes, it must always be colored by realism; finding that balance is a never-ending struggle. But it's worth the fight.
Thank you for this post.
So, ummm, what was the thing in her brain?
Sorry, sometimes I forget my audience---the whole thing was metastatic lung cancer---started in the lung, and spread to brain.
One line in there - she knew the statistics, planned for the worst, but had hope she would be one of the three - is key, I think: many folks work best if they have data, even if those data are not especially pleasant.
It seems that giving numbers is resisted, though; maybe because of the awareness that any given patient might be one of the 97% or the 3% and may hear 'you have a 70% chance of foogleschnitz' as 'you WILL schnitz your foogle,' then get aggrieved if that's not the outcome?
For some reason, expressing the numbers in the form you note - "of N patients in this situation, we'd expect roughly Q to recover and Z to respond yadda yadda.." - is more acceptable to several physicians I know than giving percentages. *Why* this is, I don't know :).
Reminds me of SJ Gould's "The Median Isn't the Message."
Hope is where you find it. I spent a lot of time on the Gulf Coast after Katrina in 2005, and I saw hope everywhere. Hope that a home would be rebuilt. Hope that jobs would return. Hope that sprang not froma anything I did, but from my willingness to be there and listen. Hope from the presence of a doctor who gave out towels and t-shirts. Hope because the Canadian combat engineers went throughthe longest flag raising I've ever seen each day before they went out and got badly sunburned clearing debris to open roads and save communities. Hope from the police cars of two dozen agencies, driven into the disaster zone, and handed off to police officers who had no cars, no office, nothing but their uniforms. Hope because a pizza place reopened.
My point is there is always hope. Youjusthave to be open to it, looking for it, and willing to embrace it.
Ewan--using natural frequencies rather than probabilities has been demonstrated to dramatically improve comprehension. See the work of Gerd Gigerenzer. He popularized his research in _Calculated Risks_, or _Reckoning with Risk_ in the UK.
This is very appropriate. I got a call less than an hour ago that a friend who was to undergo surgery to have her stomach removed due to cancer was unable to undergo the surgery because it had spread to the peritoneum and esophagus. They closed her back up. The doctor is telling her husband that she has maybe a year without chemo or a couple of years with chemo.
My father, who had a pessimistic streak to begin with, became very ill in his late seventies, with a lot of vague symptoms that added up to a very nasty general malaise. He became depressed over being "old and sick", but ignored his illness and refused to go to the doctor until my mother, my husband and I prevailed on him to do so. And Dad, then 76, was promptly diagnosed with stage III Hodgkin's lymphoma.
Amazingly, once there was a name on his illness, his mood went up, because although he'd been diagnosed with a life-threatening disease, he was also told that there were effective treatments for it, and it wasn't just a normal consequence of aging. Dad endured two rounds of chemo, went into remission, and enjoyed several more years of good health before dying of an unrelated illness at 84.
Sometimes news that isn't good still comes with hope. And the hope my father had, given a diagnosis and treatment options, was a much more fruitful option than it would have been for him to ignore his illness and lose several more years of good-quality life.
thanks for this post and the post on hospice care - both were wonderful.
Julie Stahlhut makes a very important point - it is amazing how much of a mood LIFTER it can be to finally have a diagnosis, even if it's a "bad" one. I have a friend going through a terrible time right now (brain lesions and other symptoms that can't yet be pinned down to any specific disease) and it would be such a relief to her (and all of us) to get a diagnosis - ANY diagnosis...you can deal with a diagnosis, it's "mystery" that is medically uncomfortable!
@Ewan...we report stats that way because that's all we know. We are not very good at prognostication for individuals, but we are for groups, because we have numbers. We can't tell someone that the have an X% chance, because it's not really correct.
Most of our data is in the form above, so we try to translate it the best we can.
Link to Gould's The Median Isn't the Message, recommended by Chad above (and by me)
What is your reaction to someone who is 75, diagnosed with cancer, and doesn't want to bother with anything except pain relief?
Every situation is unique. These types of questions involve sitting with a family for a very long time and having multiple discussions. It is time-consuming and exhausting, but it is one of the best things you can do for a patient.
Mortality is incurable.
But it can be lived with for a limited period of time often for decades.
My mother died in dec 2007 after a short (3 week) period of hospice care. I had brought her in to see her physician just prior for a checkup and a chest xray followed by a cat scan and then a 1 week stay in the hospital to satisfy all family members that the lung cancer was terminal and unlikely to respond to any treatment. During this time
my mother was confused, sleepy, unwilling to open her eyes.
Regarding hospice, asking for estimates on the afflicteds remaining time to live was not my concern but seemed to be the question always posed by the family. An optimistic assessment by one of several physicians caused pain medicine to be rationed unnecessarily with the false hope of
a return to partial awakening for a final conversation which never happened. Please do not withhold or limit pain medicines for the person in hospice care.
Just after death, I asked for time to mourn to be free of any visitors but overzealous family members decided to immediately inform hospice. They came within the hour and disrupted my privacy. They seemed to be overly concerned with securing their narcotics and the other medicines for secretions, etc. My suggestion is don't worry about calling hospice until you are ready to receive them.
I'd like to say that it was my background in Biology, or my family history that allowed me to calmly hear the news from my surgeon that the sample taken from my left breast, the one with a city map's worth of blood vessels in the cool new 3D ultrasound, the one the that was gristly looking in the sample jar instead of pretty pink, was invasive ductal carcinoma. However, we've all met female scientists, medical professionals, engineers who've gone to pieces in that situation. I don't that that rationality is especially protective against the sting of mortality.
Instead, I'll guess that it was a decision I made in my 30's - not to live in fear, but to bring meaning to my life by embracing my mortality as a precious gift - that allowed me to say "I can haz bilateral mastectomy and AC? Nao? KThanx."
So for your mortality consideration, here's a bit of Mary Oliver from the end of "When Death Comes":
When it's over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it is over, I don't want to wonder
if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened,
or full of argument.
I don't want to end up simply having visited this world.
It seems that I have a deletion in band 21 on the q arm of chromosome 17, the tumor suppression part of the BRCA gene is not working to my expectations, and while I might hope for a cool patch to update that wetware and prolong my life, hope for a long life wouldn't be very valuable to me if I was only visiting.
Tree, cancer survivor 63 days, keeping it particular and real
I think this cuts both ways. My Father in Law was diagnosed with end-stage lung cancer that had already spread to other organs, including his liver and brain. I was there when we all visited the pulmonologist who looked at the Xrays and said they'd have a biopsy the same day. The pulmonologist looked shaken. The biopsy came, and what was 99% sure to the doc before the biopsy was then confirmed, that it was a cancerous tumor growing around the aorta, etc.
That pulmonologist never said the word cancer to my father in law. She couldn't bring herself to say it. She was young, and it was painful, perhaps, but no one wanted to tell him.
She had a difficult time speaking to us in a way we understood, too. She kept skipping over the prognosis and talking about treatment--and it took us several conversations to understand the treatment was merely palliative, and me finally saying directly "what is this treatment for, precisely?" and "so what is the prognosis, exactly, with and without this treatment?" etc.
The oncologist, of course, was willing to use the word "cancer" at least. But he also never told the patient what the prognosis was, how long the survival rate was, what was most likely outcome, how many weeks he might have had, etc.
They wanted to maintain hope. But all they did was delay his coming to grips with what was happening until the cancer and the drugs given to alleviate his pain had eaten his mind. And they delayed most of the family coming to grips, too, because they didn't hear anyone say anything other than talk about chemo and rad therapy--that sounded like treatment to cure it, to them.
They couldn't even admit that their father/husband/brother was dying until he was in a hospice, and by then, he was incoherent and no longer in our reality.
That said, the truth is patients "die" the way they live, because we are all dying. Just as some live in denial throughout their lives about their marriage being in trouble, or their family member being an alcoholic, or they refuse to accept their responsibility for something, they deny the truth of the illness they or their loved one is facing. Those people who are seekers, or search for answers, will search for both medical and metaphysical ones during their illness. Those people who list out problems to tackle will tackle problems in their illness--some will tackle the problem of the illness itself with radical treatment, better docs, better info, different diet, etc. Soem will tackle the problems of getting their finances in order, or settling old emotional pains, etc.
The best thing you can do for a patient is to give them hope without false hope, so that their hope doesn't mean only one path: the path to perfect health, but can mean a number of paths in front of them, that lead them to a better place for themselves and their family, in life or in death.