"In the future days which we seek to make secure, we look forward to a world founded upon four essential human
freedoms.
The first is freedom of speech and expression --everywhere in the world.
The second is freedom of every person to worship God in his own way-- everywhere in the world.
The third is freedom from want, which, translated into world terms, means economic understandings which will secure to every nation a healthy peacetime life for its inhabitants --everywhere in the world.
The fourth is freedom from fear, which, translated into world terms, means a world-wide reduction of armaments to
such a point and in such a thorough fashion that no nation will be in a position to commit an act of physical aggression against any neighbor --anywhere in the world."
Franklin Delano Roosevelt, January 6th, 1941
This excerpt from President Roosevelt's famous State of the Union Address is commonly thought to represent the essential freedoms that all citizens of the world have the right to enjoy. A recent conversation with one of my patients inspired me to write down what I consider to be the four essential freedoms of cancer patients, and with the reader's kind permission I would like to share them now.
As a medical oncologist I spend much of my time attempting to calm the worries of patients who are often subjected to gratuitous observations on the state of their union by health care workers (doctors especially). I have commented on this before but I'll state it again - some people in the healing arts profession interact with cancer patients like a motorist driving by a horrific accident - any feelings of empathy are swept away by the giddiness of schaudenfreude, or in the case of reckless driving, by righteous anger. Thus it is for people living with cancer, who often feel as if they are lying by the side of the road, waiting for some kind soul to notice them, to take the time to repsond to their cries, to help them stand up again, to point them in the right direction and stay with them in case they falter.
By my career choice and by my convictions, I am an advocate for cancer patients. Therefore I believe that I am qualified to state that (with apologies to F.D.R.) all persons living with cancer are entitled to four essential freedoms.
The first is freedom from prejudice. If you think most cancers aren't worth the money and effort it takes to treat them, or if you think that treatment should not be given to the elderly, or to the poor, or to minorities, or to those whose cancer has relapsed - you are a figlio di puttana in my book. Stay away from my patients.
The second is freedom from ignorance. Don't tell me you don't know what to do with this patient, or that you're just a "cutter" or a "country doctor." That's like telling a police officer "I never learned what that red light means, so can I be excused?" Physicians have an obligation to know how to diagnose illnesses and their complications, and if they're not omniscient (like your narrator) then they need to go look up the answer - now, not later. You can always record that vitally important program you're missing.
The third is freedom from insensitivity. Woe to those of us who just can't seem to put ourselves in the shoes of our patients, for unless we have some understanding of the suffering that cancer brings on we are at risk for making idiotic or callous remarks, or for becoming stingy when prescribing pain medicines (yes, I know they are addicting, but not when used to treat cancer-related pain), or for conducting counselling sessions as if we're late for a flight to meet the president. You get the idea. Remember: the patient is the one with the disease.
The fourth is freedom from abandoment. Good doctors stay with their patients until the end, whether the outcome is remission or death. When a tumor can no longer be contolled is often when patients need their doctors the most. Returning phone calls, answering questions, arranging for hospice care if indicated, mainly just being available in case of a problem is how we oncologists fulfill our obligation to the dying patient. We earn our reputation by standing in the front lines of patient care, not by twiddling our thumbs over a metal desk like some REMF.
The war against cancer has its victories and its defeats, but until the last of this vile disease is, in the words of George C. Scott as General Patton, "welcomed to the infernal region," the least we can do as caregivers is to uphold these four freedoms faithfully. President Roosevelt ended his speech with these words, which will serve to close our monologue for today:
"Freedom means the supremacy of human rights everywhere. Our support goes to those who struggle to gain those rights and keep them. Our strength is our unity of purpose.
To that high concept there can be no end save victory".
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Outstanding post. Now if just more people (doctors, too) would take those ideas seriously.
Thank you for thinking of this and writing it down. It would be nice for this to be generally accepted practice. My fear is that it won't be. Last week I explained to my physical therapist for about the 10th time that I can't use the abdominal muscel that she wants me to lift with because it no longer resides in my abdomin, but is replacing the cavity left by my left breast. I had to argue with the nurse in my primary care office everytime I went in there that she couldn't use my left arm for needles or pressures until I finally moved my care to another practice. She wasn't the only nurse who should have known better. When the terror thoughts of relapse take over I'm left with the memory of my grandmother who while she died of metastatic Lymphoma to her brain was abandoned by her doctor who wouldn't even answer the nurses page and given no pain medications at all because "her liver can't handle them". The problem is that even if I printed out the four essential freedoms and took them with me, there is no guarantee that the care giver would follow them. The physical therapist and the nurses that I've mentioned aren't being callus, they just have little understanding of the affects of a TRAM or Lymphedema.
My wife was diagnosed with lung cancer (small cell) in February of this year.
All the medical personnel that she has come in contact with have been excellent and all must think like you do because they seem to believe in your "Four Freedoms of Cancer Patients".
The range of people she has been in contact with include the Physicians Assistant who first had to tell her that lung cancer was a possibility, the Doctor that took the biopsy, the Oncologist that she is seeing and the Nurses on the Infusion floor of the cancer center.
Each and everyone of them has been great - compassionate, professional, compentent, honest and friendly.
Because of the honesty of the Oncologist we are fully aware of what will happen in the long term and what each treatment that he recommends may result in.
At the moment she feels and acts like she is not sick at all and we both feel that it is because of the chemo that she received. Her chemo ended on 6/2/6 and her tumors haved not grown as of 7/31/6. As I said before because of the honesty of the Oncologist we know that this is just a waiting game.
Also I wish to add one last comment - Do not forget about the family of the patient, we need to know what to expect through this whole process.
Thanks for yout blog and thanks for all you do. Working with cancer patients has to be one of the most emotionally difficult thing to do.
Kerry
Re: "freedom of prejudice", this sort of statement is easy for a clinician to make, since he answers only to the patient, and not the taxpayer. From the view of those who do not have the luxury of being able to avoid resource allocation, this idea is at the very least annoying. As a medical oncologist from a non-US healthcare setting, while we do our level best to treat cancer patients, umpteenth line chemotherapy at state expense, partial or otherwise, one has to wonder whether this may represent misallocation. One of our ethical cornerstones in medicine is "justice", indicating that the doctor should not forget his broader social responsibilities beyond the individual. One can treat his own father, and yet acknowledge that the state should not pay for umpteenth line chemotherapy, for example.
Someone always has to pay for the temozolamide one prescribes. There are always broader social consequences.
I agree with the other three "freedoms".
Excellent post. I must disagree with silvertag. If you are deciding what is a good use of funds, you are not placing the care of your patient first. It's that attitude that already prevails in the US..which is why the poor will never see a second round of chemo much less the 'umpteenth' round. I understand they love this in the UK, where the blue bloods and the rich go to those lovely private hospitals and can 'buy off the rack' the best of care. We see it here all the time in the US also. It's the pesant/tax payer fund that for years prior to each new treatment, paid for the funding for the R&D. Once a new machine or other top of the line treatment is finally approved, it's the same tax payer who will never have access to it, should the need arise. The rest of the pesants...the ones who make the world churn are as disposable as a glove.
Let's not forget that it's the umpteenth round of chemotherapy that's transforming cancer from a terminal disease to a chronic one.
Awesome post. I refer to it on my blog. I like the war metaphor, which fits in with the old War on Cancer, a phrase which is rarely used these days. http://blog.mesothelioma-aid.org/
Abandonment is real, my Onc misdiagnosed groin pain as a relapse of DLBCL and hit me with high dose Cisplatin plus Ara-C in order to prepare me for a stem cell. The result was septicemia.
When it became clear that she had made a mistake she suddenly was unavailable to take my calls or help with my infection. I was lucky in that another Onc in a different town was willing to find me an ID specialist.
Having your primary care Dr disappear was the single most frightening event in my cancer journey. I am now 2 years clear
To silvertag:
I understand your point, but since I practice evidence-based cancer medicine I let the results speak for themselves. For example, if an expensive treatment produces superior outcomes compared with a cheap (and usually outdated) treatment, or compared with no treatment at all, I am not going to withhold this information from the patient. As for taxpayers, state expense, misallocation of funds, 'justice' and broader social responsibilities - this reminds me of Wesley Mouch, in Ayn Rand's masterpiece Atlas Shrugged.
Patients can certainly do well on treatment. I have many patients doing well, and I do my best to keep them going. What I wonder, is whether your first freedom means that the patient should pay for his/her own treatment? I don't quite follow.
In an aside, "evidence-based oncology" doesn't last often beyond third line treatment for most cancers. If it even reaches there. It doesn't even last beyond first line for some cancers. I'm sure we agree which direction generates better outcomes, EBM oncology or radtec's "off-the-rack best of care".
Every year during my compensation review the cost of my medical and disability insurance is factored into my total compensation package. I take that to mean that medical and disability coverage is part of my contract and my pay. I work hard and do a good job and I'm not going to feel bad if I ask my employer to fork over my pay if I need another round of chemo.