The patient deserves the right to make the call.
My sister was only 40 when she contracted "terminal cancer" 30 years ago. She had 3 young children and she wanted to live to see them raised with care.
So, I contacted the Minister of Health to ask if there was any experimental treatment in Canada that dealt with her type of cancer. There was one and my sister was enrolled. Unfortunately after a few months of seeming improvement, the cancer came raging back. She died soon afterward. Her wish was to try to live and I did what I ethically could to help with her wish.
I am 75 now. My life has been full of political and professional achievements. My wife and I have been married for 51 years and have been "dating" for over 60 years. My inclination, if given a nasty diagnosis might be for palliative care; but I want to have the option of deciding at the time - not leaving it for my doctor to decide.
I have been a type 2 diabetic for 14 years since I contracted a rare tropical disease that overwhelmed my system. My GP described the disease as "really nasty" and suggested both weight loss and continued high levels of exercise to try to keep it under control. 14 years later I still spend 2 1/2 to 3 1/2 hours a day several times a week cross country bicycling to keep my blood sugar under control. What might be "agony" to many is "fun in the sun" for me.
My point is that patients deserve to have all the options laid out in front of them to be able to make informed choices.
36
And let's do something to rein in the marketing practices of the for-profit Cancer Treatment Centers of America - whose long-form TV commercials promise miracles but add a disclaimer in unreadably tiny type at the bottom of the screen: "No case is typical. You should not expect to experience these results." False hope should not be a business model.
130
Honestly, my battle with cancer is not as tough as my battle with my doctors, who project onto me their desire to extend life at all costs. In our ridiculously inadequate 15-minute “consultations” they devote that precious time to planning my upcoming treatment schedule without ever asking if I want it. They deny me my needed hormone supplements out of the (unfounded) fear they will “feed” the cancer, leaving me to deal with the side effects and sharply reduced quality of life. When I interrupt their monologues with the declaration that I have studied my disease thoroughly and know exactly how I want my treatment to go as it unfolds, the response is a moment of silence, then a resumption of the lecture. I am sufficiently frustrated that I want new doctors who will listen to me. But I have no idea how to find them. And if I do, I have no doubt that along with my medical files, my former doctors will provide them with the warning that I am a”difficult” patient.
78
What is implicit and, therefore, left unsaid in this very pragmatic piece by Dr. Wachter, is that we do not know the cause of some 80+% of cancers deemed "sporadic". Thus, most cancer therapy is still "symptomatic." As Dr. Wachter correctly prognosticates, most of the immunotherapies in vogue now will only benefit a handful of cancer patients. Until we change our thinking about cancers and elucidate the "cause" of most cancers 9https://bmccancer.biomedcentral.com/articles/10.1186/1471-2407-14-331), we will have to accept palliative care, difficult conversations with our loved ones, and a humane approach to the end of life.
18
This is a good problem to have. Why the lamenting?
3
Because you have to choose.
19
It detracts from the credibility when a person who understands science uses the term “miracle” in a discourse about cancer and it’s treatment. Stretching the meaning of “miracle” to include unexplained medical outcomes confuses what is being said objectively, and possibly misleads cancer patients. There are no miracles in reality, there is only the word “miracle” to misuse.
18
“Some, called immunotherapy, harness the patient’s own immune system to battle a tumor.” Cancer cells are not foreign agents. They are your own body’s cells, and your own macrophages, supposedly among the body’s front-line defenders and “dustmen” have been shown to conspire against you, joining the cancer cells. Read Dr. (of cellular biology) Barbara Ehrenreich’s “Natural Causes.”
6
Yes, the immune system has safeguards against over reaction, or loss of self tolerance - which can kill you much quicker than cancer. Macrophages are a part of that "checkpoint" system - thus, the use of checkpoint inhibitors, to which this article refers. When those checkpoints fail, that is called autoimmune disease - MS, Lupus, type I diabetes, etc
16
Most people have a difficult relationship with statistics and statistics is especially cruel when it comes to life/death decisions. Who would want to be in a heads or tails scenario when discussing treatments and cures. We all want certainties in life. Start to finish, cancer is all statistics - there is a finite probability that you will get cancer irrespective of how good your lifestyle is, there is a finite probability that your treatment will work.
Life outside of cancer too is all statistics - there is a finite probability that you may die from something else even when you are cured from cancer, there is a finite probability that you may die in a freak accident or be a victim of crime and there is a finite probability that all of these may happen to someone you love which is just as painful.
The only certainty in life is death!
14
Thank you for your much needed essay to counter the overenthusiastic hype. It hits close to home. Here's what I wrote when I posted your essay on my own Facebook page:
>>>>>>>>>>
"A recent analysis estimated that about 15 percent of patients with advanced cancer might benefit from immunotherapy."
Our late son Derick was one of the 85 percent. In 2010, Derick got a clinical trial of immunotherapy (dendritic cell vaccine) at Rockefeller University. It did nothing for him.
I've been enduring the news media for the seven years since he died. I keep hearing hogwash claims of cures, and I know how wrong those claims are. Science is 99 percent failure, and immunotherapy will probably be basic try-and-try-again science for another generation.
Ralph M. Steinman, the scientist who presided over my son's unsuccessful attempt at a cure won a Nobel Prize in 2011 for trying. I'm fine with that, because science can only learn from its failures. But I wish science journalism would be more honest about the failures.
48
I am sorry for your loss. Indeed, Dr. Steinman himself died of pancreatic cancer after being treated with several cutting edge vaccine strategies. That said - progress in the field since 2011 has been without precedent, and at light-speed (CAR-T therapy, Yervoy, Opdivo, TVEC, Blincyto) and vaccines will one day very soon join the march to a cure.
23
I too am sorry for your loss. I am reminded of an article in the NYT several years ago about breast cancer. The vegan yogi for whom all the cures failed said that if she saw one more pink ribbon she would throw up (so some thing like that). Even the statistical hype is deceiving. If a life expediency is 6 month a 50% increase is only 90 days. However I will say that its all a crap shoot. Two friends got stomach cancer one died in 5 months the other diagnosed earlierkeeps living with the new therapies. go figure. You win with a 7 on your first role, you lose if its your second.
I wish you peace.
2
The palliative care vs. the continuation of possible life-extending therapy dichotomy is an artificial construct, created and perpetrated by a for-profit health care system which prioritizes profits over people. These approaches to end-of-life care are not incompatible and can, in fact, be synergistic.
Terminally ill people and their loved ones should never have to choose BETWEEN comfort and treatment. And yet Americans, with and without health insurance, are being forced every day to make this agonizing choice (except, of course, the 1% who can easily afford hundreds of thousands of dollars out-of-pocket for prohibitively expensive treatments in addition to the cost of hospice/palliative care).
44
The reality:
I have a common condition - I'm mortal.
It's incurable so it's temporary.
With gratitude for all the blessings it has included and eager curiosity about the episode to follow, I have no inclination to prolong it with the wasteful expense of continuing medically induced misery. I have legally documented limiting final care to palliative procedures at an inpatient hospice facility. (Knock me out & pull the plug.) That will provide for a peaceful, graceful departure for my benefit and that of my family (who understand, agree and appreciate that instruction).
23
Makes a difference if you believe in an "episode to follow"? Makes a difference, depending on one's age?
7
One payer health care could be a great help. People cannot afford the 100,000 cost and many insurances won't pay until the cancer is in stage 4. Patients are using their own resources if they have enough or using go-fund me accounts to go to India for a course of treatment. They cost for the treatment, travel, and accommodations is around $5,000 in total! This could be done before the cancer iss stage 4!
10
There is an elephant in the room when patients with incurable cancers speak with their physicians that is almost never addressed substantively- death. Much of the battle that's fought for patients with incurable cancers is an existential one, almost by definition. Is this all there is to life? If there anything afterwards? Is there a point to my suffering, or is it arbitrary and pointless, another in a series of random accidents that dictate how the universe unfolds?
At the heart of the issue, of course, is that we, almost all of us, do have eternity etched into our hearts. There is then, on a deep level, nothing natural about dying, no comfort that it provides. The problem with recent advances in therapy, particularly immunotherapy, is that it taps into and feeds off this existential angst more than any other drug has, because it's your own immune system that's fighting off the cancer. It's you, what's inside you.
Herein lies the danger- we can cast off the discussion about what death means to another day. And another day. And perhaps another. Until it's time, at which point there is very little time indeed to ponder this.
The fight against cancer is certainly a physical one- this I do not want to play down- but even in cure, there is no immortality, and the shadow of death remains, perhaps made, for a time, shorter, but ever growing nonetheless.
We need, in short, to be better prepared to talk about death, as much as we talk about life.
43
When physicians and family members ask, coerce or even demand patients attempt new therapies, the pressure can become inhumane if the individuals in question are mentally and physically exhausted from round after round of “promising” treatments that produce minimal results.
Doctors want patients to try various and occasionally invasive treatments, yet are forbidden to prescribe opioid-based pain medication unless the patient is in pallative care, where innovative treatments are forbidden.
When Americans have to resort to Go Fund Me campaigns so they can afford the health care required for that 15 percent possibility of success, when the elderly or chronically ill realize additional suffering buys them at most weeks or perhaps months of continued existence, then additional coaxing from doctors and relatives just adds to their stress and misery.
20
Dr. Wachter's mention of a terminally ill (lung cancer) patient of four score plus years seeking additional treatment options at considerable cost to society is indicative of a major failing of our health care system, which, statistics show, spends/wastes a disproportionate amount of its finite resources on the last stages of medical care for most individuals. Given the unavoidable fact of deterioration and mortality associated with advancing age, it has always seemed to me to be a blessing if one were to have the opportunity for a clear demise option. Better to die as a result of a finite disease process, honorably stepping off the world's stage when the time is right, than to grasp and scrabble after the shreds of existence as one succumbs to the nightmare of dementia or helplessness resulting from a severe stroke. It's a finer end for you, better for your family, an clearly better for society.
21
Thank you Dr. Wachter. I'm a retired physician with advanced cancer. I agree with you. In time, the cost of such treatments can be decreased if American medicine got away from championing profits. My oncologists never use the word cure which disarms patients and families.
27
I have such mixed feelings from this article. There’s sublime hope when treatments like “immunotherapy or others, known as targeted therapies, block certain molecules that cancers depend on to grow and spread” have actually added months and years to one’s life and then there’s the deep heartbreak when such treatments do not improve a patient’s health and painful side effects surface. The disappointment and suffering is sometimes more than one can bear or witness.
A dear friend suffered from pancreatic cancer. She lived 5 years, which is incredible considering that insidious type of cancer. Even her oncologist thought she had a real chance of beating it. And then, another doctor misdiagnosed separate, she did not recover and died 6 months later. She told me she would have done anything in her fight with this cancer. Those four years were horrendous. For every great day, she had 7 terrible ones. But she never gave up.
My husband and I talk about her ordeal on occasion. We opted for quality rather than quantity of life. I don’t think he could handle seeing me go through what my friend endured.
We look down the road and wonder if either had cancer, what kind of memories would the other be left with? Painful suffering for months, if not years, or resignation to a shorter time period filled with enjoyable weeks and months together, if merely holding hands or sharing a shot and a beer at sunset until the time came to say good-bye.
21
Sorry, but this is a good problem to have. We do need to address the associated financial toxicity and its related access issues. The science will evolve, and more people will benefit. And there will always be some who will not benefit. It's a brave new world. Deal with it.
10
So sometimes immunotherapy works?
Then we need two important things. First, we need to maintain a national data base on everyone considered a plausible immunotherapy patient (whether they get the therapy or not). A large data base can help us sort out the conditions under which immunotherapy works. Second, it would be helpful to have a program that covers the costs of immunotherapy.
The second item is less important. Without the cost coverage, we will have a system in which rich people subsidize the data base.
7
In my opinion, the lack of a federal standard for Electronic Medical Records (EMR) is one of the most critical issues hampering the U.S. healthcare 'system'. Healthcare data is silo-ed across hundreds of incompatible, proprietary EMR systems. It's not for nothing that researchers such as Google and Dr. Patrick Soon-Shiong have turned to the NHS in the UK, which has consistent big health data thanks to an open, country-wide, unified EMR system.
20
i find it interesting that you bemoan people giving up on hospice after chemo is done because immunotherapy may have a 15% chance at best. I suspect that you have started chemotherapy on many patients who have less than a 15% chance of cure or prolonged life. I agree that patients should be able to get palliative care while treating advanced cancers, but honestly the only way to advance the science of immunotherapy is to have these (formerly hopeless) patients try it so that we can see what works. We doctors have a natural inclination to be skeptical of new treatments, of patients looking for miracles, but this is how we learned so much about cancer treatment, how we learned so much about chemo, and how we are going to learn immunotherapy.
15
In recent articles about Hospice, it seemed its value was definitely not “unquestionable.”
6
We know that certain cannabinoids induce apoptosis, programmed cell death, in which cancer cells commit suicide. But real research and human trials into the curing capability of cannabis is the last thing the government wants or will permit. They choose instead to promote expensive therapies developed by big pharma. Perhaps, now, that John Boehner has become a drug dealer -- selling marijuana for profit -- the wisdom of actually leaning what the lowly cannabis plant is actually capable of in terms of treating cancer and countless other ailments will finally come into focus.
13
Do you have an studies to cite that can back up such a claim? Do you know how complex cancer is?
There are thousands of people diagnosed with cancer each year, some of them are users of cannabis. Why didn't the cannabis protect them?
Making inaccurate claims like this is cruel. I've witnessed cancer patients question chemotherapy regimens, which are their only hope, because of misinformation like this.
I don't disagree that further study is needed, or that cannabis relieves symptoms of chemotherapy. However, until you can produce repeatable, scientific evidence that cannabis kills cancer cells, then your claims are nothing more than smoke.
20
People chase miracle cures for cancer for the same reasons they visit chiropractors.
https://www.chirobase.org/12Hx/mencken.html
2
Seems like a good spot to remind everyone about Advanced Medical Directives. Take the pressure off loved ones and strangers, and legally, in writing, let them know how you wish to be treated in case of incapacity. Your quality of life and your death could depend upon it. As well as the mindfulness of others that might have to make that decision for you.
As for the Op-Ed, thoughtful piece. Yes, $$$ on all ends needs to be thought of. I for one, currently reaching 60, will not bankrupt my spouse nor my children's future inheritance (what might be left...) trying to eek out a few more months to a year. My body is already worn out. Had a good run. Hug your friends and loved ones now. Let them know you appreciate them. Tomorrow isn't promised.
P.S. Save Soc. Sec., abolish the cap.
Tax ALL incomes equally.
Sample link of free AARP form:
https://www.aarp.org/caregiving/financial-legal/free-printable-advance-d...
9
To clarify: I think you mean that Social Security tax should be imposed equally on all, not that the income tax should be imposed on all incomes equally.
Says it all! We have such a fear of death among us, as if this natural process can be fended off with dehumanizing, expensive treatments that are touted to give us a few more suffering days. Barbara Bush knew what to do: preserve dignity and choose paliative care. Say goodbye to family and friends. Hell's bells, it's only a temporary parting. Whether you believe it or not.
5
Barbara Bush lived a long life. She was in her 90's when she made the decision to preserve her dignity and choose paliative care. Getting a cancer diagnosis at mid life with 40-50 years in front of you might change your mind about acceptance of possible early death.
14
You don't know that, Lake!
4
How do you know "it's only a temporary parting"?
8
"Tumors destroy man in a unique and appalling way, as flesh of his own flesh which has somehow been rendered proliferative, rampant, predatory and ungovernable."
Peyton Rous - Nobel Lecture, December 13, 1966
The Challenge to Man of the Neoplastic Cell
2
All new treatments have risks and costs but without them medical science doesn't advance. While death with dignity and quality of life at the end of life are important, we won't cure anything we can't already cure unless trials to see what works continue. To suggest that because only 15% more terminally ill people can be saved by a new treatment so it is not worth it flies in the face of all that medical research tries to accomplish, curing more people of what would otherwise kill them. Scientific advancement in any field takes time and money but it also takes the endurance and sacrifice commitment to advance our knowledge requires.
9
Let's not forget that palliative care usually translates to opiates for pain
Given the current hysteria on this subject it's no wonder there is such evasiveness.
5
Have been a cancer patient for 13 years. In my experience, after surgery, they really don't know anything about cancer. And the oncologists are the most tuned-out and arrogant of docs. (Probably trying to hide their depression.)
5
I would suggest that your sample size is extremely limited. I have just returned form the annual AACR meeting, and met with scores of oncologists who are deeply invested in the outcomes of their patients. For every arrogant doc you've met, I can introduce you to 100, maybe even a thousand passionate caregivers.
12
The arrogant types also know little-to-nothing of the nexus between Sugar and cancer. It's just a rigged game.
2
Conventional medicine "is". Along wioth insurance and pharmaceuticals, it's part a three-ringed circus game.
Along with reversing diets and avoiding the Three Whites, flour, sugar, and cow-dairy, check out bioscalar technology (Tesla's, the scientist and not EM's). Non-practitioner dependent, passive.
Get the truth on Fukishima and stay away from any Pacific-caught, farm-raised seafood, as well as most of what's in the Meat and Deli departments.
Read "How Not to Die" and the "China Study."
1
Has anyone determined how many life years (usually old age when cancer strikes) these new "miracle" cancer treatments actually give to patients. Patients are mostly ignorant about their condition and must rely on oncologists for information about their condition. Being human and not wanting to die they are in the vulnerable position of insufficient knowledge about their condition. I wonder how many oncologists who themselves get cancer actually opt for these treatments.
20
I hear ya CBH from Madison, WI.
When I was in high school, the father of a dear friend of mine committed suicide. He was a wonderful and successful physician. And then one day he was diagnosed with cancer. Instead of opting for any kind of treatment, he took his own life.
To this day, I still pause with such sadness for this physician's family, my friend and the doctor as well. He knew what was in store for him and chose suicide over treatment and suffering. I cannot imagine that degree of dilemma this man or anyone struggles and wrestles with.
18
It would be nice to know President Carter's thoughts on this topic today. After melanoma had spread to his brain, he said he was ready to die, having led a long, full life. But, scientist that he is, he chose a clinical trial, to help add to medical knowledge. His cancer now seems to be in full remission. Sen. John McCain, facing a similar diagnosis, also seems to have chosen treatment for cancer. Both men are 80+ years old.
Art Buchwald lived a year after he'd given up on medical options and entered hospice care, supposedly having very few weeks left to live. He wrote movingly about what he learned during that year. Hospice care enabled him to mend relationships and to feel loved in a way that had often eluded him. Oliver Sachs said the same.
When is it time to say "enough" and to enter palliative care? This should be an individual's decision, not one determined by insurance companies or panels of doctors. No crystal ball exists for determining exactly when "the end is near." Doctors need in-depth training, with role-playing scenarios, to prepare them for having family-patient conversations that new treatment options are engendering. It might be easier to have such conversations within a few weeks after an initial diagnosis, so a patient can begin to think through all the "what ifs" well before answers might be needed. And yes, such conversations should be covered by Medicare and other health insurance (as per the Affordable Care Act ).
60
Treatment vs palliative care should not be an either/or, determined by insurance coverage or personal resources.
10
As astonishing as the new immunotherapies are--e.g.,transforming metastatic melanoma into a sometimes treatable disease--their cost is just as staggering.
There has been no persuasive justification for the million dollar price tags on these treatments, beyond the financial response: What is your life worth to you?
As far as I can see this is true only in America, where the profit motive drives our health care system and our development of new therapies.
The argument that the profit motive is always superior to any other motivation in the delivery or health care or new innovations is belied by simple history: The MRI, the CT which revolutionized diagnostic imaging, and many of the new therapies were developed not in the United States, where the bottom line rules supreme, but in Britain, where there is a national health service.
13
"As astonishing as the new immunotherapies are--e.g.,transforming metastatic melanoma into a sometimes treatable disease--their cost is just as staggering."....If it were easy everybody could do it.
4
A clearly well written piece which can have a great impact on how we live life and the cost of prolonging life till the very bitter end. However it is not just about money, it is the quality of life we can have at the end. We can keep people "alive" but what is meaning of that and when do we let go. Death is inevitable. Suffering can and should be avoided. Barbara Bush is a very good example of how we should "let go" at some point.
5
Easier to accept your end is near when you are in your 90's. You'd likely feel different if you got cancer early in your life. I hope you never face the trial.
6
if you had advanced cancer yourself, you might feel differently. I agree that palliative/hospice care needs to be updated so that its focus is the best possible life--ie pt so you can walk, antibiotics if you have an infection, and in this case active treatment. however, if you had advanced cancer, you might want to bet you were in the 15%. it is easier for doctors maybe to have a cut and dried--oh, this is stage 1V help them die, but please read vincent devita's death of cancer--a more uncomfortable more aggressive approach can have real pay offs. life has ambivalent choices and i for one, want a doctor who isn't giving up on me.
6
Dr. Wachter did not mention the profit motive in the development of these new "miracle" approaches to treating cancer. I have attended conferences where you could not throw pillow without hitting an oncologist who was involved in a new start-up to develop an innovative treatment. These oncologists and their investors saw that the prolonging of a dying life would be a way to become millionaires.
After a while I stopped going to such conferences.
7
Read the story of penicillin. In the beginning it was nearly impossible to obtain in significant amounts.The first person treated started to make a dramatic recovery, but there wasn't enough penicillin even when they isolated it from his urine and recycled it. He died. The point is that there was a time when penicillin was so expensive (hard to come by) you couldn't pay for a treatment no matter how much money you had. Today you can buy couple of pounds for forty dollars. Things change.
6
The problem with “miracle” cancer cures is that there no such thing as a miracle.
Medicine, especially oncology, is an inexact science. Some people respond very well to a particular treatment, others not so well. For most cancers, given current treatments, statistical data give us median recovery/survival rates. These may change somewhat as new treatments are developed, but the numbers don’t lie - there are always outliers st both ends of the curve, but the realities are inescapable.
We can believe in and hope for “miracles”, but it’s magical thinking.
Get the best treatment you can and stop believing in magic.
7
In 1920, a couple of Canadian doctors and a chemist isolated a compound that they believed would stave off the effects of a killer disease that was a guaranteed death sentence for anyone diagnosed with it. They used science to find where this compound was produced in humans, and after many weeks of work, managed to purify a small supply. A woman in the US, whose son had been diagnosed with this disease, traveled to Canada and placed her son in their care. He was near death when they started their treatment, and was almost literally reborn.
The compound was insulin, and the disease was Diabetes Mellitus Type I. Given the opinion of the "hospitalist", the boy would likely have died instead of being given a chance on a "miracle cure". This is why the "hospitalist" is wrong.
17
Nine months ago and nine months post diagnosis, my husband passed from an extremely high risk form of Multiple Myeloma. He would have done anything to continue living. His world-class physician treated him accordingly. Miraculously, twice he was in stringent complete remission, albeit short term. The day his physician sadly informed us it was time to stop treatment, he shared that a new CAR T-cell trial was showing great promise. Even with the long wait list, we knew my husband was now far too sick to qualify.
Meanwhile, despite being told she had just two to three months to live, a dear wonderful MM friend/mentor, we met through treatment, got into this trial. Patient #15's life has been saved and continues in stringent complete remission for nearly a year. As a high risk cancer patient myself, nearly 19 years post diagnosis, sometimes moon shots or the cancer road less traveled do come through.
22
The cost is many hundreds of thousands of dollars per year? Well I guess that leaves me out. Why is that stated as a fact without a lot of fury behind it?
8
The cost is because of government-imposed regulations on pharmaceutical companies. Why is THAT not given a lot of fury upon it?
5
If pharmaceutical companies are so over-burdened by regulation as you imply, why is it that every year they post billions and billions of dollars in profits? (Not to mention that, as a result of under-regulation, many drug companies now spend more money on advertising than research and development.)
There are two issues here, the first is the quality of life. If the patient is 80 years old and the miracle "maybe" cure will destroy any viable quality of life then this should really be considered.
The second issue is why are "experimental" treatments priced to gouge the patient and their families? Why are these Lazarus treatments not paid for from a special fund? If they are truly viable and individuals are willing to be the guinea pigs, why astronomical costs for the experiments? In the end, all of society could benefit from the findings and share the costs.
2
Patients enrolled in clinical studies do not pay f for treatment.
Once a drug is approved (Keytruda, for lung cancer, for instance) and is available to the public at large, patients and their insurance companies foot the bill. And it's a very large bill.
2
Everyone dies. Sometimes, I think we forget. The healthiest and happiest among us understand this. While it's eminently sensible to pursue treatments for painful and premature death, it makes no sense whatsoever to push therapies that prolong infirm and sick "life." (hemodialysis for the nonagenarian?) This is not fatalism, it's common sense, and it's an element of the practice of medicine that has not received enough attention.
11
A cure, or an effective treatment, for cancer is just around the corner. With the explosion of genetic technology, in a few years it will be possible to rapidly identify the genetic error or errors specific to an individuals cancer. By synthetically producing compliment RNA to the defective region attached to CRISPR or some other killer agent, it will be possible to selectively remove the offending cancer cells. At first this will be enormously expensive, but with the rapid pace of advancing genetic science, this will be overcome.
6
As clergy, I have had a lot of experience over the years visiting patients in hospitals and administering end of life emotional comfort. Dr. Wachter's Opinion really got me at the end when he summed up how dying patients may be robbed of the "smaller, more subtle miracle". We are a society bereft of valuing its more subtle miracles. May this doctor's message spread and connect far and wide.....
13
I agree that there is a time to switch to palliative care. But if the remission rate is 15% on the new but astronomically expensive drugs, I venture to say that 15% in lung cancer is actually pretty amazing.
8
I spent 7 of the last 9 years of my nursing career in hospice care. I don't know if Medicare has changed its rules, but back then it was one or the other: aggressive treatment or palliative care. As Dr. Wachter notes, this led to the phenomenon of a majority of hospice admissions occurring too late to really provide the patient and the family any real comfort and relief. More than once, many times more, I admitted a patient to hospice services on the day of his or her death.
From a personal perspective, if I find myself facing a terminal cancer and there is "maybe" 15% chance of a 6-month "cure" at a cost of $200,000, I will instead head immediately to the liquor store and buy the most expensive bottles of Cognac, Scotch, and tequila I can find, just to see if they taste that much better than bottle that costs $100. Even if these nectars fall a bit short on the value scale, I will consider it money well spent. My sons and the animal welfare agencies that would receive the other $190,000 or so that didn't go into the pockets of drug makers would make much better use of the funds.
26
"From a personal perspective, if I find myself facing a terminal cancer and there is "maybe" 15% chance of a 6-month "cure" at a cost of $200,000,".....But that is the whole point of the article. You can't know if the chance of a 6 month cure, or longer, is 15%. For you it might be 0% or 100%; and therein lies the problem.
9
I hate to break it to you, but more expensive bottles of scotch do taste much better. Don't know about cognac or tequila.
3
THE GENETICS OF Cancer and heritability in the past were relatively direct. Doctors looked for genetic markers that were indicators of increased risk for cancer going across generations, as with BRCA mutations. Some women have opted to have bilateral radical mastectomies so that their risk of breast cancer is greatly reduced. But the cures offered now are related to many genetic factors. Scientists have yet to understand how the genes (i.e., DNA) respond to immunotherapy for cancer in the diagnosed individual. Leave alone developing screenings for potential candidates for immunotherapy after all else has failed. So for some a miracle cure occurs. While others are left with the crushing pain of yet another failed medical treatment, along with facing death sooner than later. My sister died of Nonhodgkins Lymphoma about 26 years ago. When I read about the advances in treating that disease, I am wistful, as I wish my sister had been able to have had another chance at life. But it wasn't meant to be. Still, for me, the takeaway from this article is the continuation of hospice until the immunotherapy has proven effective. I hope that medical experts, patients and their familes as well as politicians will repond to the urgent need to integrate hospice care more fully in the course of treatment for those fighting life-threatening diseases.
10
I agree with everything posted in this article. Just to make a point, the excitement about the new immunotherapy is that they essentially obviates the majority of the tumor genetics. Checkpoint inhibitors the PD1's essentially frees our bodies T-cells to kill cancer cells by removing the natural inhibition that our immune system has to avoid destroying our own cells. As Dr Wachter has well pointed out, the methodology is still rather crude since the therapy's most serious side effect is a pharmacological version of graft vs host disease (killing of "good cells" ) that leads to treatment cessation and in some cases death. Anothr very important point made in the article is that though these therapies do work it is still in a small portion of patients and at an extraordinary amount of expense.
4
I am surprised at the readers who take away that this doctor is against these new treatments. Not what I read at all.
I take away two important points. First that if you, the patient, choose to try an immunotherapy or gene therapy trial, your insurance will not pay for palliative care. A patient has to pick one or the other, as if you are choosing life or death. Not fair.
The other important point this doctor makes is that as a patient you look to your doctor for the answers, at least many do, and when these new therapies do not work it is hard to watch the pain a patient goes through, both mentally and physically, realizing the therapy does not work for them.
I see compassion in this doctor, a rare thing.
18
If we devoted the same resources to helping mothers and children at the beginning of life as we do to trying to prolong the lives of people my age (74), both the individual and our society would reap far greater benefits. The cruel but accurate trade-off is this: how many children could we save for the cost of treating one elderly patient whose chances of survival, even with the experimental treatment, is only 15-20%?
While we cannot put a price on the value of a human being, we can and must calculate the cost of prolonging one person's life at the expense of the lives of many others.
15
What of all those that suffer from disease that are not elderly? If you don't want to live longer that is your decision. However, I've known people living well into their 90's. Why shouldn't they be allowed to have medical treatments, they've earned it.
2
Progress comes in fits and starts. The Immunotherapy drugs are hopefully the first in a new line of treatment. AIDS, TB, Leprosy etc. were once all death sentences. As far as the costs are concerned, the price of the drug really pays for the research on all the new drugs and is shared by society through insurance. If you have exhausted all other treatment, a 15 % chance is still a pretty good chance so why leave it.
8
Rahul, comparing cancer which is a variety of different diseases with AIDS, TB, or leprosy is not a valid comparison. Once the specific infectious agent was identified for each of those diseases, a cure or an effective treatment was be found. Many patients can be cured of some cancers if found early. If cancers were caused by specific infectious agents, as some are, then a remedy or remedies could be found.
4
The first drugs for AIDS only prolonged life. With each new generation of drugs, the survival rate increased as did our understanding of the disease. Then we learnt to mix cocktails of drugs to attack the virus from different angles. Cancer is more complex but the analogy is apt. This new drug may only add 2 years to your life. But in 2 years something better may come along so why give up treatment.
There is nothing graceful about dying of cancer. I can imagine the same editorial written seventy years ago, decrying the antibiotics that robbed consumption sufferers (TB) of their peaceful end. No cure works for everybody but is this the reason not to cure anybody? Aging and premature death will eventually be defeated by science. It hasn’t happened yet and it won’t unless we press for, and demand “miraculous”, therapies. Some will live and some will die; this is how evolution works and how progress is achieved. Eventually many more will live than die, and this is a good thing.
5
Perhaps if these therapies were introduced earlier in the course of the cancer patients’ treatment, there would be more favorable outcomes. Most people will choose continued treatment over “palliative” care. I think healthcare professionals should accept this.
4
I accompanied my husband with nap seven year journey through treatment for stage 4 gastric-esophageal Cancer, and what I learned is that medicine is like magic. Sometimes the magic works and sometimes it doesn't. In our case immunotherapy, was not the ticket.
6
I am a Family Physician and have dealt with these situations for 30 years. The other issue society is going to with to deal with is the tremendous cost of these therapies. 10-15% of patients may be helped. Or can extend life 50% which unfortunately often translates into 3-6 months for $200,000. The comments here I have read alternate from "Why so they keep pushing drugs which don't do much" to "How DARE you take away hope" "Withhold treatment because of cost"
But then everyone is outraged at the cost of health care insurance.
If we are going to expect that Everything that exists is available to everyone at no personal expense and that withholding it is immoral then health care is going to be Very Expensive.
My experience has been (and maybe my team is different) that patients and their families beg for more treatments that we don't think will do much and almost never have we pushed for care a patient was reluctant for.
17
This problem is caused by our focus on medical “magic bullets” at the expense of studying how the pieces of an organism normally interact and are well regulated.
We end up using molecules that powerfully change the system, sometimes with strikingly beneficial results, but always with the possibility of severe damage or failure.
The good news is that the development of regenerative medicine and computational biology is encouraging research in how our systems work. Especially in defining the maintenance apparatus.
This may lead to the development of specific therapeutics that give a helpful push to a system that needs it without drastically interfering with it in other ways.
Stephen Rinsler, MD
2
Would Dr. Wachter, if he were sick, want immunotherapy if it had a 15% chance of working or opt for hospice? My bet, is that if it were himself, he would opt for the 15% chance. I know I would. Hospice? I would rather someone kill me than to be in hospice. Waiting for a prolonged death doesn't benefit a patient.
5
Deaths aren't prolonged. 15% survival treatments are prolonged, demeaning, and painful. In palliative care, the 85% die with more dignity, comfort and grace.
20
I think being older and wiser leads to a decision for palliative care, and yes, hospice. Hope is a wonderful thing, but the reality is that we all die. Now that I am older, I have the realization that undergoing likely futile treatments with negative side effects for a few more months or years at a tremendous cost is not how I want my life to end.
23
The treatments don't prolong a painful outcome, they 'cure' it. Many people are in remission for years.
Dr. Wachter seems bothered by the fact that new cancer treatment options make life more complicated for doctors. "Oh those selfish patients who want us to go to all the trouble of trying to prolong their lives when we're not sure if we can!"
6
I didn't get that from this article. Instead, I saw a physician working to assess appropriate use of a new treatment option. Treatment isn't always best, and it won't always work. The more researchers and physicians learn about what works for whom under which circumstances, the better off everyone is. Less money spent on treatments that have no effect, less pain and suffering, more effective treatments, and more humane deaths.
10
In the case of terminal cancer treatment, it’s not correct to say last ditch medical efforts “won’t always work.” In truth these treatments almost always fail. But scientists can use the few successes to gain insights into the disease process that will ultimately lead to cures. Childhood leukemia is a good example; deadly until just a few decades ago, cures are now routine. In other words, we are not talking about patients who are looking for some final handout from the rest of us. Rather these people are willing guinea pigs who are doing something that is ultimately heroic. Everyone benefits in the long run.
2
Read it again, Mr. Chisman. Read it again....
3
My mother was 87 when the doctors talked her into chemo. She was on 22 drugs and dying. We were begging for palliative care but my father who wasnt visiting her wouldnt speak up. She was suffering so much until they took her off the drugs. The day after quitting ALL DRUGS she was peaceful and praying. She was having reactions to the drugs.
People we dont need help to die. Sometimes people with cancer are not in pain and dont need hospice. We get so fearful of death we run to the doctor or hospital when we dont need any of you. God is with you.
We should not talk people over 85 into chemotherapy. Its ripping their insurance off before they die. How many years would chemo extend their life? They ripped off my family. I wont die in a hospital.
22
What about 75? What about 65? What about 55? What's the magic age at which other than the patient or their health care proxy decide that they should die?
5
Thank you Dr. Wachter. It is so important for everyone, including many of our colleagues, to understand that palliative care is appropriate throughout the course of a person's illness, even if someone is still pursuing disease targeted treatments. Everyone deserves excellent management of symptoms, whether pain, breathlessness, psychological distress, or others, at every point in their care. People often live longer (not to mention better) if effective palliative care is initiated earlier. Unfortunately it is not available everywhere and is often under-resourced and poorly reimbursed when it is. While I get the wonder and satisfaction of participating in a Lazarus like cure, I enviously ponder what we could do with $500k for the many rather than a 15% chance for the one.
16
Doctor Wachter is stating the obvious. Cancer treatment has always been a crapshoot. With continued research hopefully someday it will go the route of polio.
15
Fundamentally different diseases. Polio was a cure by simple inoculation against a virus. Cancer is an evolutionary process that by definition has been able to circumvent the immune system.
7
Thank you Dr. Wachter, for a wise, thoughtful essay. Pieces like this are why I continue to read this paper.
12
The body wears out. It is that simple. Yet, patients and families struggle for any way out (in the words of an old movie) desperate as a drowning man clutching at a razor blade.
Families need to ask themselves what victory over this disease, cancer, would be for their loved one. Their often elderly member would still be enfeebled and still have arthritis or even early senescence in any or all body systems.
I do not suggest ignoring the pain and suffering of older patients especially as I am one myself, just an honest attempt in each case to take a step back and understand the maximum achievable success and the costs to achieve it. Death is always hard but wasting last days in fruitless care is worse.
28
Decisions about cancer treatment are very different and more difficult if the patient is a young person. But without any doubt that sick people are valuable regardless of age and that all deserve compassionate care, many of us who are old would give up fruitless, expensive treatment for the young.
The author of the Emperor of All Maladies makes the point that cancer kills, and acceptance of that fact is necessary to both the continuation of research and allowing peaceful death to occur.
1
The absolute first order of business should be to take the ads off TV that show people who appear healthy and suggesting they run in to their doctor and demand treatments they know absolutely nothing about. Part of a physician's role should be to discuss with a patient what the available options are for treatment, the pros and cons for each, and jointly decide the best way forward for that particular patient. That discussion should always include palliative care (which in my area is not available for outpatients, by the way) and/or hospice (only available when you are close to the end of your life) when appropriate. And that discussion should be held at regular intervals. Can you imagine having a major orthopedic problem and only being told about your options for comfort and pain relief only when it's so bad you can't tolerate it anymore.
30
I wish the FCC would outlaw commercials for specific medicines. The ones for these new cancer therapies always show perfectly healthy people enjoying life, not the desperately ill trying to hang on a little longer.
53
Regarding cancer, I find the insights of Rachel Naomi Remen in her two volumes Kitchen Table Wisdom and My Grandfather's Blessings to be beneficial. As an MD, she gives credence to scientific clinical facts. She also emphasizes the importance of treating patients versus the disease, to the idea of healing the whole person rather than focusing on a cure, and acknowledging the mysterious life force which can surprise and transform.
8
The hucksterism of P T Barnum is still alive and well in the shallow brains of many Americans. Too bad for them whenever they, as cancer patients, can't reckon with making health care decisions predicated upon common sense. One knows, as I do from my own experiences with cancer as a patient and "survivor", but for how long? that there are no magic bullets. One may only hope to buy time and reckon with the inevitable toll that cancer must take on each of its victims.
4
I heard one Palliative Care nurse practitioner describe palliative care as adding another layer of support for the patient and family. This concept sticks with me. Who wouldn’t want extra help?
16
The article has very little mention of the impact of the family in the decision making process. The family may want to have every life saving/prolonging of life when the patient does not hold that same attitude. It takes much familial strength to recognize that their own fear of death may be influencing their thinking and not really considering what is in the patient's best interest. In full disclosure , I am a former clinical social worker and these situations cry out for social workers to be a part of the process helping the family and the patient to sort out what each person wants and why. It seems so unnessessarily cruel to a patient pressured into more treatment because of the family's wishes which are not based on the welfare of the patient.
19
People all think they will live forever. Even Doctors walk around evincing this delusion. I suppose its part of being human. But the longer you live the more you realize that it isn't the quantity of life that is important; it's the quality.
I suspect the reason immunological therapy seems less effective in older aged individuals is simply because their entire biological system is gearing down due to the vicissitudes of time's wear and tear. So palliative care will always be important. Yes everyone wants to live forever; but there does come a time when one realizes that no, no I don't. To have available, and be able to exercise, a graceful exit is important once that realization has occurred.
John~
American Net'Zen
14
"I recently cared for a woman in her 80s" ...
In their 80s? Do we really need to state the obvious? Unless this woman's family was going to fund the treatment themselves, there is no way that Medicare should be paying for expensive new treatments for anyone in their 80s.
13
I know many productive folks in their 80s who are still contributing to the world and their families, some more than those much younger. When you reach 80 maybe you'll have a different view.
3
As long as it's your mother you're happy to deny, great, all power to you, but leave everyone else alone.
3
It's a question of fairness. It is immoral to treat 80+ year olds with the latest treatments while claiming that we can't afford to insure all Americans. Anybody in their 80s should acknowledge that death can come daily. People in their 40s or 50s should not have to do that. As economists such as the late Uwe Reinhardt have noted, the private market health insurance system is becoming unaffordable for working Americans. When Repbublicans talk about making it more "affordable", they are referring to taxpayers. By reducing subsidies for poorer and sicker people. Republican governors refused to expand Medicaid. Democrats lost their seats because they voted for the ACA. In light of such realities it is obscene, IMO, to be talking about 80+ year olds being given second and third chances to extend their lives with treatments costing hundreds of thousands of dollars.
2
As an oncologist, (from UCSF!), I can say Dr. W that you are making the classic mistake of portraying cancer therapy as a choice between palliative care and definitive treatment. The Oncology community is moving toward providing palliative care that is distinct from your description which is more accurately "hospice". In 1975 all cancer patients had an overall survival of 50%. Today it is almost 70%. You are trolling oncologists for offering a treatment to their patients that offers a median survival benefit of potentially years. This is not false hope, and if you are frustrated that a greater number of patients need to be treated than may benefit from such treatments, then your complaint is with all of oncology, for this is the kind of data on which we build our protocols--and double survival rates. Sadly, for some patients, an over-involved hospitalist may insert themselves between them, their families, and their oncologist of perhaps years, and direct them down a path that will cost them their lives. Offering patients hope in the form of new treatment will not deprive them of death with "dignity and grace". Those of us who have dedicated our lives and careers to the care of cancer patients are not so coarse or uncaring as you describe. The choice for treatment is driven by the patient. Is it our duty to offer them a chance of cure if possible, together with support, care, comfort, and honesty? Always.
33
I agree it is important to offer the numbers, the hope, and the treatment. Significant and dramatic improvement have been made in the last few years in both targeted and checkpoint therapy. Predictions are beginning to be made for each. With the PD1 pathway the significance of having a diverse microbiome has been demonstrated in recent studies.
The overall percentage helped and the detailed results of current studies need to be accurately told to the patient. And unfortunately it does not help all, but is a miracle for those it does help. Combination and sequential therapy studies are being done right now.
While the article seems wistful for a time when one could gracefully give up. Many may want one last fighting chance - which will hopefully improve month by month and year by year the author does encourage the combination of aggressive therapy and palliative care that you desired:
"First, it turns out that many patients can benefit from palliative approaches even as they continue aggressive treatment for their cancer. In 2016 the American Society of Clinical Oncology recommended that concurrent care — palliative and active cancer care delivered at the same time — be made available to patients with advanced cancer. Rules that force patients to choose one approach or another, particularly those that tie insurance coverage of palliative care or hospice to stopping active cancer treatments, should be scrapped."
13
Does it add to the body of knowledge in the cases where immunotherapy fails.
Part of the drive for seeking miracle cures is the fear of death. However cures do happen., Just as we thought a cure for AIDS was impossible in 1984 and then AZT came along in 1987 followed with other antivirals and massive investment by the NIH there was a livable cure by 1996. The fact that miracle cancer treatments are given to those where all standard treatments start to fail after a recurrence defies logic since the cancer has become more resistant. The miracle cure should be the first treatment despite the cost since the body is healthier and cancer gets the smart stealth biotechnology bomb to deal with not a familiar foe. The insurance needs to be smarter too to not cover treatments that don't work and are basic snake oil, as most chemotherapies cures are short term with toxic side effects. Surgeries can work miracles mostly in prevention ie colonoscopies, and BRCA1 mastectomies or ovary removals.
10
We haven't "cured" AIDS. The retroviral drugs only help to manage the disease, turning it into a chronic, but still very serious, disease, and one that still kills prematurely.
1
HIV has not been cured. Many people can control their HIV with drugs but even having a zero viral load does not mean that they do not have the virus. It is this misunderstanding that fosters the increase in unprotected sex.
3
Oh...surviving 40+ years after chemo for breast cancer is "snake oil." Did you read the article? Cancer is "resistant?" You omitted radiation therapy. A little bit of knowledge....?
1
My experience with doctors, as both a patient and as an advocate for my elderly parents, is that they will deliver tough information when asked DIRECTLY! The questions should be clear. Things like, "how long might I live if I have this treatment and how long might I live if I opt for no treatment?" "What will my quality of life be if I have this treatment? Will I be vomiting, in bed, in pain, or can I plant my garden and walk my dog?" "Can I decide to opt out of this treatment if I find it too debilitating?" "What are other side-effects that I might have to live with after the treatment is finished?" And, remember, many doctors' knee-jerk instincts are to prolong life. Sometimes patients' DNR wishes are ignored or overlooked. Knowledge is power. And, I think many people are not so much afraid of dying, rather they are terrified of suffering.
39
Consider that doctors are not prophets. At best they can give statistical odds, which might be true on average, but more than likely not true for a specific patient. Will you be vomiting? Maybe. But you can take Zofran should that happen. Knee-jerk instinct to try to cure or put in remission? Nothing knee-jerk about that. That's their job. That's why they became doctors.
2
Thank you for writing this thoughtful piece that identifies both the challenges and some potential solutions. As new options are tested and tried, we do need to offer palliative care, instead of making it the either/or choice it is today.
11
Hopefully with the "big data" revolution (electronic health records, which were a priority of the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009), we won't be as dependent on the subjective recommendations of doctors who have their own biases, prejudices, limitations of experience.
Objective data will shine a light on difficult decisions.
4
Yeah...If only the EMRs were actually made to provide granular, readily accessible, clinically relevant metadata... Instead, they are just glorified and expensive billing programs designed to optimize revenue.
19
This exactly right. Promise of electronic health records to make evidence-based medicine a reality has been twisted by the way medicine financed. Everything possible has been done by insurance companies and hospitals to make big data analytics for CLINICAL inferences almost impossible. The proprietary control of the information perversely reinforced by HIPAA regulations meant to protect patients. American medicine has been transformed into a disgusting extractive industry -- where the science necessary to really understand and push forward advances is blocked by greed.
IBM's Watson was a massive failure. Originally promoted as using big data to "solve" cancer, its goal was changed to providing oncology knowledge to third world countries.
1
This is a bit off topic, but seems related to Dr. Wachter's area. Please do something to reduce the unnecessary interruptions at night while a patient is asleep. In many hospitals the nurses check in every 4 hours or so, taking vitals to fill out reports even when it does not seem to be necessary for the specific patient.
44
Treat anyone who wants it with all of these "longshot" treatments so we can learn what works; shake down Hollywood celebs with 10 homes and private planes and all of the other super-rich to get the money if needed.
Shame and ostracize those with multiple homes and purses that cost $5K and $100K cars etc until we treat every single cancer patient with whatever treatment they want.
In the 70s, childhood leukemia faced similar problems--2/3 of kids who received the grueling treatments would die anyway, but 1/3 would survive. Now, the survival rate is very high; over 85%, I believe.
The money is out there, being hoarded by the few at the expense of the many.
26
How about just cut some 25% off the defense budget and invest that into finding cures?
Oh, how about cut out the Big Pharma middleman. Immunotherapy was discovered mostly with NIH dollars. How about creating a new non-profit, government-sponsored office of NIH for manufacturing and studying NIH-discovered drugs?
How about an idea that healthcare should never be a for-profit industry? It should be a right and can be viewed as a utility.
While we're fantasizing about changing the world, we could also put in some serious funds into prevention. Cancer is associated with smoking, obesity, red meat. Greater pollution control, healthy diet, re-design of cities away from the automobile and toward more active lifestyle would spare a lot of resources spent on end-of-life medical heroism.
65
People died of cancer by the millions long before there was pollution, a high rate of obesity, daily consumption of red meat, and a car in every driveway.
1
To your point, am currently in Egypt, needed five (5) different RXs. and the total cost at a local pharmacy was less than $4!
12
This column was written by a hospitalist, therefore be must assume that his main issue with identifying the right patient for the right drug and pushing palliative care is cost savings. This is a common dilemma that single payer systems resolve by restricting access to these new drugs. Yes, these drugs are expensive, but they represent a significant advance in the treatment of cancer. Perhaps some cost savings in administration is what we really need.
26
Thank you for saving me the trouble of writing the same thing.
5
Yes, QED!!
Just like in K-12 public education: we need to fire all of the admin and spend the money on the patient or pupil.
I don't care what it costs; if we don't try these treatments, we're never going to crack cancer. Cancer treatment is NOT where we should worry about cost-savings.
3
Could not have said it better myself. Spot on.
2
I don't understand why "palliative care" -- doesn't that mean mostly pain management? -- shouldn't be a required part of ANY course of treatment. What's the downside?
80
Palliative care as used by the palliative care / hospice industry means withholding cancer treatments, and waiting for the patient to die, while administering morphine and oxygen. They charge less than cancer hospitals, so there is a monetary incentive to store the patient until they succumb (drugged up) to death.
6
Palliative Care is much more than you describe. It involves helping people living with a serious illness - and their families- to live as well as possible for as long as possible. This means wrap around support by an interdisciplinary team of social workers, pharmacists, nurses, doctors and spiritual care counselors if desired, aligning people’s values with the treatment and care they receive. It involves shared decision making with the patient and their doctors, so patients are fully informed and can weigh the risks and benefits of treatments.
Hospice on the other hand, is a Medicare Benefit, Part A, and completely covers the cost of care that people receive at the end of life in their home when they’ve decided to focus on comfort rather than disease- modifying interventions. People pay into this benefit over a life time of working and anyone with an estimated prognosis of 6 months is eligible for hospice care. They can plan for the end of their life - say goodbye to those they love, or thank you, or I’m sorry or I love you. - rather than have an unexpected death in the hospital on a ventilator in pain, unable to communicate with their loved ones or their doctors about what’s most important to them. We all need to be able to prepare for the dying process while simultaneously getting treatment and care that aligns with our goals and values. That’s palliative care and hospice.
Immunotherapy costs hundreds of thousands of dollars a year, and has only a small chance of succeeding. Meanwhile, we know that a person who does not smoke, exercises regularly, and eats a healthy plant-based diet is likely to avoid most forms of cancer. (Dr. Michael Greger, in his best-selling book, "How Not to Die" writes about this at some length.) Dr. Dean Ornish has even found that in some circumstances, cancer can be reversed through a plant-based diet. While the side-effects of immunotherapy are terrible, the side effects of exercise and a healthy diet are all positive, including lower blood pressure, reduced chance of suffering a heart attack, reduced chance of developing diabetes, reduced chance of developing dementia, etc.
7
Kindly do NOT blame cancer patients for our diseases, thank you. What you posit is balderdash. I am 47, vegan for 20+ years, never even touched a cigarette, normal weight, and I have leukemia. My lifestyle did not cause my cancer and there is no known mechanism for lifestyle to cure it.
So many in my cancer community are the same situation. New immunotherapies are routinely giving us chances at a normal life span, when just a few years ago we were only expected to live 5-10 years past diagnosis.
People pushing non-medical "cures" for cancers are invariably exposed as quacks and charlatans, and lead patients down dangerous paths.
146
Roughly 10% of people have a cancer that is based on genetics, not lifestyle choices. Doing the research now will mean that future families have children who grow up knowing both parents and maybe even grandparents. The odds of immunotherapy working increase if the research is done, just as the odds of other cancer treatments working have increased as more has become known about them and the various cancers. Some would rather invest and learn, and allow these humans their pursuit of life, liberty and happiness.
20
Funny, I've known people who have lived healthy lives and still received a diagnosis of cancer or diabetes or heart disease. Don't believe everything you read. And let's not forget about the occupational diseases people can get such as black lung from mining coal, mesothelioma from asbestos exposure, etc.
11
interesting to pick on immunotherapy when "standard" oncology treatment rarely works but does make people horribly sick. perhaps the message of this piece is hidden in the author's bio, as he focuses on making hospitals more efficient, a code word for cutting costs, which ultimately benefits the insurance companies. a list of his consulting positions would be most welcomed and almost certainly includes for profit companies that get richer by reducing health care costs. care to come clean on this?
18
"Standard oncology," as you call it, has prolonged and saved many millions of lives, including mine.
Although no cancer patient ever considers himself as "cured," my kidney cancer and prostate cancer were both successfuly removed, saving my life.
I've been free of the kidney cancer for ten years and of the prostate cancer for three.
"Standard oncology" is so far the best and most consistently successfully treatment for cancer.
25
My life was also saved by 'standard' oncology. A bone marrow transplant 22 years ago did the trick. There are many of us still walking around because of research, clinical trials and caring docs. A little research on the gains in oncology might help you understand this.
6
Good for you for your success, and good luck on your road.
The OTHER problem, what about the cost ??? Not just for the patient, and their Insurance Company, if any, but to us ALL ??? The older I get, the more I think about that. Why spend a great deal on money on someone with a poor prognosis, who, by the way , is in their Eighties ? Or Nineties ? There are many pregnant Women and poor Children that get substandard care, or even NO care. I know who I would spend money on. I am NOT suggesting that the very elderly not receive care. I AM suggesting that we have priorities, and limits. This will only get worse, with the explosion of baby boomers. I'm at the end of the boomers, many others are now retired. Prepare yourselves.
14
I wholeheartedly agree that we are reaching a limit on what can be provided by taxpayers, but I just don't think cancer patients of any age are where we need to be cost-cutting.
We have FAR too many able-bodied people and their children receiving FAR too many welfare benefits that are FAR too generous. I know because I work with the "poor" and I see the rampant fraud. That money needs to be redirected to cancer treatment.
Our politicians get every expensive perk in the book, including outrageous amounts of first-class travel for government employees all the way up to and including the President. That money needs to be redirected to cancer treatment.
We also have healthy elderly constantly clamoring for more benefits like free hearing aids that are not a matter of life and death. The money that would fund those wish lists needs to be spent on cancer treatments instead.
7
Honeybee, thank you for the input. It's a difficult balance, but setting priorities is the first step.
3
You apparently have never had cancer or had to face losing an irreplaceable loved one.. People want to live to being present in the lives of those who matter to them.. This (your medical view) mentality will be harmful the vulnerable who are looking to disposed by family.
8
I taught at an academic medical center for decades, & remember when hospice was viewed as a social movement, and some doctors saw hospice as a threat to their authority--not unlike chiropracty.
But I also saw a very slow acceptance of palliative care, and the requirement that all medical and health professionals take at least one college level ethics course.
By the time I retired in 2007, there was little dichotomy at our medical university between medical care, clinical trials, and palliative care. But you mention some insurance companies make it so. This IS a problem.
I know many insurance companies won't pay for hospice care until the patient has only 6 months to live, but who can really predict? The doctors I knew got on the phone with the insurance company and simply explained the patient needed further coverage; I didn't know any who were refused.
Note: having to beg insurance companies is a huge waste of a doctor's busy schedule, but they must do it all the time under our business model health insurance system.
Advanced countries don't treat doctors and patients this way, nor do they or their insurance companies make big profits out of patients' illnesses and suffering. It is a matter of ethics, but the U.S. isn't there yet morally or politically.
Of course, some doctors, hospitals, communities, & states are much more enlightened about end of life issues than others.
Now it is the public that needs training in medical ethics to be informed patients.
23
This column isn't about immunotherapy, really, it is about realistic expectations and the understanding that none of us gets through this thing alive. If you are in your 80s and have cancer, you will probably die soon. Of course, if you are in your 80s you are going to die soon anyway, of almost anything.
I used to work with nephrologists who carried a decent amount of debt from patients who died, I remember one of them telling me that their patients rarely die of kidney failure, they die of heart attacks, they just happened to also need dialysis to live. That put things into a certain amount of perspective.
If I am relatively young and I get cancer, sign me up for whatever immunotherapy your have. If I am old, give me a pistol with one round loaded and I will take care of business when it is time. Let us not take away from the fact that a lot of hardworking professionals have worked hard for, and in some cases have actually cured cancer. Let us be properly impressed by this.
16
CT-angiography for superselective intra-arterial chemotherapy maps the arteries that feed a tumor. Chemo is then fed into arteries close to the tumor. This can reduce the amount of expensive chemo drugs needed while simultaneously increasing the amount of chemo absorbed by tumor cells. Brutal side-effects can also be substantially reduced.
When the patient's entire body is blasted with chemo using standard whole-body techniques, the total dosage has to be kept low enough to avoid destroying vulnerable organs such as the kidneys and liver. The amount of chemo entering tumor cells may be below the threshold needed to kill malignant cells. Localized treatments can push tumor cells into the kill zone without destroying vital organs. It's like using a powerful, precision-guided smartbomb to obliterate a target compared to carpet bombing everything in the vicinity of the target with multiple small, ineffective bombs.
The superselective, localized approach has been used in Japan for at least 15 years with impressive results.
Some Japanese oncologists direct a small electric current through the tumor during chemo treatments. This opens pores in the tumor cells, further increasing the amount of chemo they absorb.
These techniques don't seem to be used much outside of Japan for some reason.
I have links to detailed descriptions of these techniques in respected, mainstream medical journals. I'll try to add them to a reply to this comment at a later date.
16
We don’t live in a perfect Disney world. Hope is what keeps everyone healthy or not alive. Imagine a world of zero hope.
5
Dr Wachter, here's the dilemma for us once-and-future patients/caregivers/readers...
> On the technology side of things, the US has been the hotbed of invention and innovation for genomic technology that's gotten us whole-genome sequencing for well under $1000...
And - not having any of the discussion about diagnostic informatics being "the really hard part"...Some open-source SW and one Nvidia Volta module, and I'll take it from there...
But I've digressed...
> On the policy side of things, the US has aided and abetted propping up pricing of some simple blood and urine testing to over $1000...
And new drugs to over $100K...
So which is it?
...
Bluntly, we may look back on chemo and radiation in ten years, the way we look back on bloodletting today...
Doubt that either of these have a "cure" rate much higher than the 15% mentioned for immunotherapy, but - like colonoscopies in the way of genomic-based testing - they have industry and policy inertia on their side...
The elephant in the room is that you'd all learn the answers much faster if you'd scale up and speed up the trial phase of things...
We've all seen how much and how fast the electronics industry has advanced - and how fast genomic sequencing or ultrasound imaging can advance, when they ride the electronics industry's coat-tails...
....
You might say pharma discovery and productization is so different from electronics discovery and productization...
And I'd say you're making my point...
5
Pointless... Chemo has been used since about 1980; radiation before then. Types of cancer vary in terms of potential for "cure" (ten yrs.). We are still learning. Read the book or watch the PBS series about Cancer -- "The Emperor of Maladies." There wasn't a cell line for experimentation until taken by chance from a sick black lady Henrietta Lacks in the 50s.
1
Since Nixon declared the war on cancer there's been no real progress. Cancer and rates and cure rates are unchanged. Despite billions. So you can't blame people with cancer for hoping for a better way.
Cancer is a very profitable disease for Big Medicine and oncologists - it's created a juggernaut. MDs and researchers spend their entire career working on cancer. So you can't blame them for being resistant to information that might end their careers and billions, can you?
Maybe there's been no progress because they're looking in the wrong place. Maybe cancer is not primarily a genetic disease. For example, maybe it's a disease of mitochondrial dysfunction. And maybe glucose (from continual bombardment by carbs) causes mitochondrial dysfunction (it does) which then sends chemical distress signals to the DNA and that causes the genetic derangement (it does).
Which is to say that gene dysfunction is a downstream effect and the oncologists looking in the wrong place. Research is accumulating to support this view.
If you have cancer and want to make chemo or radiation work much better, while sharply reducing side-effects - you just need to Fast for seven days prior. Google this.
Fasting strengthens good cells while weakening cancer cells. Less chemo will be needed. Research this.
Should you wish to avoid cancer, try the ketogenic diet. Google that.
Take responsibility and trust your research over group-thinking experts with conflicts of interest.
2
TV ads are irresponsibly driving some of this. These treatments have helped many patients, to be sure, however they are no magic bullet.
Additionally they would cost FAR LESS if TV advertising of them were banned. Board certified oncologists know what to prescribe.
7
Well, and also: why are these new therapies--and the ones to come--so ridiculously expensive? The costs of specific drugs and procedures in the US is in many cases higher than anywhere else by orders of magnitude. Can we shift to more public funding, and public-private partnerships, in the development and clinical usage of these treatments, regulate some of the costs, and share them more appropriately (e.g. actual progressivity in the tax code, for starters)? And yes, palliative care with treatment, not instead of. Otherwise, in too many cases, it's: choose the so-called "death with dignity", where we'll make you comfortable, or be selfish and we'll let you suffer whatever consequences, and say "I told you so" if you die in treatment. This is the choice of a truly cruel society.
8
There is profound, implicit ageism in this piece which is deeply disturbing to find coming from a physician. The author first asserts that there is a dichotomy btwn comfort and cure. Who are the people who should forego fighting for the latter? The elderly, of course. Hey, time to go gently into that good night. No matter how much people want to live or their loved ones want them alive. Finally, at the end of the piece, the author says there shouldn't be a dichotomy. Yet, what comes through is a level of ambivalence.
What really frightens me is that elderly patients will pick up on their physicians' lack of investment and concern. I can't bear the thought of losing my parents and I think most people feel the same and I want a physician who understands that.
16
It's not ageism to recognize that older patients not only are more likely to have poorer outcomes than younger patients, but have fewer years of their life ahead of them to save.
We all want to take an emotional "try everything to save my parent" approach, but the cost of that is one that we won't be able to pay for. The cost of health insurance, specifically medicare, would skyrocket and that would mean some very very difficult choices ahead. The reality is that we live in a country where we haven't even assured that younger people have health coverage that would provide for their treatment if they were diagnosed with cancer.
And, thanks to our wildly irresponsible politicians, we already have a massive national debt and are unprepared for the difficult road ahead -- the cost of providing Medicare to a Baby Boomer generation that is living longer than past generations, the cost of climate change and its ravages in the form of devastating storms, droughts, fires, and food shortages, the cost of future wars, and the cost of security to protect against Russia, China and other bad actors hacking into our power grids, our voter rolls, and other vital and vulnerable systems.
We have big problems to solve. Crying "ageism" is not helpful. Let's stay tethered to science and data such as statistical probabilities.
8
I disagree that this piece is ageist. The difficult choices that the author outlines are relevant to a great many cancer patients, not just elderly ones. Many people who would benefit from palliative care resist it out of a fear of appearing to give up or 'give in' to their disease. Palliative care often prolongs life and provides physical and psychological comfort to the patient and his or her family. Medical hubris, or the belief that more (or more aggressive) treatment is necessarily better, even in the face of terrible odds, often tacitly abets the patient's decision to forego palliative care and endure additional medical interventions of questionable benefit to late-stage disease. I watched a friend in her mid-40's have surgery 10 days before she died, for a secondary cancer caused by years of treatment for her primary Stage 4 cancer. With the support of her medical team, she could have spent that precious remaining time with her young children, being present together in the face of imminent and inevitable death. Doctors who have the courage and empathy to acknowledge the very real trade-offs between quality of life (and quality of death) versus continued treatment with their terminal cancer patients are rare, and deserve our appreciation.
10
The cost of Medicare is too high, so let those seniors gracefully bow out? Incred! Those years are worth saving and cherishing. As only as people aren't physically suffering so acutely and mentally so diminished, they can't enjoy life, fight on! Saty13 thinks it's a zero sum game -- that the elderly are taking away from someone else -- not true! Other countries have universal healthcare, we can, too; we can fund Medicare, if we allocate our resources to human services, from defense.
If you're older, don't ever let people tell you your life isn't valuable -- it's worth every day, every breath, every moment with your family,
1
I agree that the research cost should be spread more widely, not just put on the companies that are unlucky enough to have employees or their family members who have cancer and the patients who pay high premiums, high deductibles, and high oop. This is a quest for humanity, all of humanity should be contributing rather than the the subgroup of children who will lose their parent and their start in life if the parent chooses to go the lab rat route and loses the dice roll.
I agree with all of this, as someone who 2 years ago was preparing to be a thirty-something widow, but who now is looking hopefully at many more years with my husband thanks to successful immunotherapy. Our third child is due in May.
But yes, there always needs to be honesty and a holistic focus on comfort and the reality of the odds. I did not expect immunotherapy to work. I was prepared and so was he for the worst. Im glad we went into it with realistic expectations, to be joyfully surprised.
29
Well. Glad things worked out for you.
Do you think others should be denied the chance to be "joyfully surprised."
"The reality of the odds" didn't stop you from pursuing your joyful surprise, despite your
" realistic expectations." And it shouldn't stop others.
The will to live is in everyone - even tired old farts who can't find their keys.
Every cancer is different, it is not all one disease.
Last year, at age 46, I was diagnosed with a very common indolent leukemia. I am not ready to say "oh well, I have cancer, guess that's it for me." My disease is one of the ones causing all kinds of excitement among the pharma bros - they are developing therapies that take a good wallop at the cancer but require insurers to shell out $150K + per year to keep a patient alive. These companies have no incentive to work on a functional cure . . . as that would impede their ability to attract capital.
I don't know what to think . . . . on the one hand I'm so grateful that my diagnosis may not end in an early grave, mostly because people have gambled their investment dollars on research that led to these therapies. On the other hand, is there no better way to incentivize medical breakthroughs than to risk bankrupting our fragile medical system to line the pockets of the already-rich? There is no free market here.
54
Thank you, for sharing your feelings as you face a great dilemma that many other people experience.
10
There should be a requirement that anyone who chooses to take these last chance treatments accept a comprehensive testing of every possible blood component, genetics and commodities
Hopefully, patterns of these will provide some evidence of who can and cannot be helped by such treatment. Most of these high cost treatments are partially paid by the public, either as a private insurance pool or by taxation. So, such benchmarks for efficacy will make such last ditch treatments more targeted and affordable.
6
And consent make their data public (if deidentified as much as possible) which will be tricky. There're a lot of privacy and ethical concerns here.
Dr. Wachter, thank you for this thoughtful piece.
I used to tell critically ill ICU patients and/or their family members that I couldn't predict when the patient's life might end, but that there was a chance that it would be soon.
I encouraged the family to make preparations to celebrate the ill person's life (regardless of the short term outcome of this ICU stay). Sometimes this helped families shift the focus onto what was most important to them.
18
Direct to consumer advertising is front and center in this discussion. It prompts the patient to discuss these new miracle cures with their physician (as if he doesn't know how to practice medicine and needs some help from the tv ad) . Stop these ads and with it the promoting of the most expensive drugs out there.
34
Disagree. Most of these drugs are not directly marketed to consumers. I was diagnosed with Stage 4 Lymphoma last year, and was treated with immunotherapy and chemotherapy. Immunotherapy has been used more effectively with plasma/blood cancers than with other types. Survival and recovery rates are significantly better than even five years ago.
My father died from Leukemia within 6 weeks of diagnosis in 2011. I encouraged more aggressive treatment, though in retrospect I don’t know if it would’ve helped in that advanced state. I finally had to have the conversation with him about continued treatment. Though he said “yes” it was clear he not only couldn’t physically take the consequences and, as a medical professional himself, had mentally and emotionally conceded that he was likely to die.
As you may have as well, I’ve seen the sheer aggressiveness of some cancers, and was shocked by it. I think we’re likely wired to survive at almost all costs. Immunotherapies are still relatively new for many types of cancer. The author is correct - they’re not cure-alls. With time, hopefully more people will benefit from these technologies earlier in their cancer treatments.
I trust that oncologists will utilize these approaches whenever possible as they become more proven. But consumer marketing is not at issue here.
11
For cancer patients’ quality of life is an important issue when deciding on treatment options, but older patients may be more likely to forgo treatment because they just are too tired to “fight the battle”.
When my mother’s cancer came back while she was in her 80’s she decided to skip treatment again because she was just too tired to go through more chemotherapy. At the time her oncologist’s office was like a mass market retailer with a “get them in, treat them and get them out attitude”. Nobody bothered to really talk to her and she rarely saw the oncologist as the nurses administered her chemo.
Older patients, who have cancer, may choose to forgo therapy because, as one patient told me, “there comes a time when you’re just too tired to keep fighting” in a healthcare system that treats conditions rather than patients.
Oncologists, and drug companies, should develop more guidelines that talk about who is a better candidate for new treatments besides physical characteristics. Patients mental states need to be evaluated as well and physicians need to be clear when they communicate with patients about treatment side effects. Instead of “label talk” they should have an open and honest talk with patients and their families so that they can decide themselves whether they want specific treatments.
The number of patients that decline conventional cancer treatment is substantial enough to warrant close attention. Effective patient-doctor communication is crucial.
12
Great article here. We need to be able to have a nuanced approach towards cancer treatments. The focus on the singular cure for all cancers is extremely unlikely considering the variety of causes for cancer such as inherited gene defects, mutagens, and viruses. We need the ability to try new treatments, but on the same hand prepare patients and their families for the scenario that treatment that doesn't work. As the doctor states, a flexible approach can provide more treatment options concurrently with the end-of-life comfort care that can allow people to die with dignity.
6
Dr Wachter is fair and considerate in his article. The missing piece is that 100% of us will die! We will die of something for which the therapy of the day will not be effective.
If each of us addresses that reality, the decisions about intervention, effectiveness and costs become more manageable. If we do not address that reality we become victims of premature evidence, vested interests, and unfounded hope. The health industries are champions for intervention, and not always correct.
See Ultimate Health, Finding It, a booklet which encourages all of us to make choices, not simply accept recommendations.
17
It is never clear beforehand what we may want after we’re diagnosed. Staring the possible end of life in the face can make us different people than we were. The best course appears to be full and informed options made available to the patient to choose from.
11
I am very upset with the doctor who told my sister, who had stage 4 ovarian cancer, that yervoy ( the only immunotherapy available in 2015 ) had a good chance of putting her into remission. He claimed they had a patient who had kidney cancer get cured with it. It gave her false hope. In the end she had cancer everywhere, including all through her brain, and the refused to give her yervoy, saying it was too late.
8
This is, after all, only the beginning. Costs will come down, and success rates will go up. Cancer may be largely conquered in the next 20 years.
15
What evidence do you have that costs will come down? The pharmaceutical industry is not like other industries when it comes to scaling. Their unit cost might go down 80% as sales increase, but they'll still charge whatever the market will bear - and then some. They are abetted in this by their stooges in congress, who would rather see thousands of people die for lack of treatment than lose their cushy seats.
7
One thing I tend to notice about these end of life discussions is how often they seem to descend into an almost "partisan" way of thinking. Pro-Pallative folks tend to want to steer most towards a death with dignity, while the Pro-Cure folks want you to be a "fighter" and brave the harsh effects of the treatments. And everyone has reasons why their way is the right way, and they are both right. But facing a deadly disease is a terrible thing and having to make such a choice (between aggressive treatment and palliative care) is something I can't really imagine, and hope I never have to know. Both medical research and palliative care are good things.
12
Sure, progress in cancer treatment must make these decisions more complicated. But after all, we are spending all this money and effort on research to make these decisions possible. The issue of having to choose treatment or palliative care is a business and social one, not medical.
3
Thank you Dr. Wachter for your honest and informative article. My husband who went to UC San Francisco Medical School and did his Pathology residency at Mount Sinai New York died last year at age 85 of stage 4 lung cancer . He chose Hospice care immediately after diagnosis and did not suffer any of the side effects you see and he observed in his practice. I applaud you for this long overdue evaluation of the benefits versus the set backs of these miracle cures /Immune Therapy drugs.
58
I'm a physician with very good health insurance; I'm not sure I could justify the cost versus benefit ( to self, my family, and society) if I was over 60 or so and received a diagnosis that was dire but might be amenable to these therapies.... I do think it is a reasonable option for otherwise healthy people in the prime of their lives and with dependents.... There's nothing wrong with dying "early" ( 60-70) after a life fully and richly lived, though we Americans seem to consider death before 90 years a personal failure.
71
Life expectancy on average in the US is 79 years. So dying at age 60 is quite early and premature. If the author used 75 or 80 in his statement, it might be worth taking seriously.
22
You assessment of life expectancy is dependent on zip code and color unfortunately. Be careful with averages and whose definitions are being used.
11
Your thoughtful comment reminds me of a woman I saw in the tumor boards in the mid-1990's.
She was ~75 years old, and arrived with a diagnosis of three primary tumors, any one of which could be fatal. There was some ambiguity in the exact types of tumors, and they were incidental findings on a routine exam for other minor matters, but the prognosis didn't look good.
When I presented her to the committee of physicians, they all agreed that, at 75, she'd lived a good life, and her cancers were likely not treatable. Palliative care would be the recommendation.
"But," I said, "I think you need to meet her. She's not your typical 75 year old."
The woman they met was so full of life, still loved her professional work, had boundless energy and grand plans for the years ahead. She had no intention of rolling over and dying.
We retired to the conference room and poured over her chart, looking for any viable medical and/or surgical options moving forward. It turned out, for reasons too arcane to describe in a reader's post, there was reason for hope. We developed a treatment plan, a bit unorthodox and complicated, but with a real chance of helping her; maybe even curing her. She was totally on board.
Unfortunately, as a referral patient, we just sent our recommendations back to her oncologist and I never heard what became of her. I just know she never heard the phrase 'palliative care' from us.
I have never forgotten how easily we could have dismissed her.
42
These issues have been around as long as viable treatment options for cancer have, all predicated on an unavoidable uncertainty: We don't know who will be cured by chemo or surgery.
That some are cured is not in dispute. All approved treatment options are backed up by clinical studies that show a certain percentage receive benefits--a longer life, or maybe a full cure. Some cancers are now almost always curable, other cancers are amenable to a cure in a minority of patients, and yet others are nearly, but not completely, refractory to treatment.
Given that it's all a matter of odds; and further, given that many patients don't understand statistics that well, I think the treating physician has several challenges:
1. Explain the risks and benefits of treatment honestly, and in terms the patient can understand.
2. Recognize that each patient has his or her own unique composition of needs, hopes and fears that should inform the decisions on medical management.
3. Somehow throughout all this, keep the patient's hope alive, even if his or her body is dying.
That's a tall order.
I did a lot of oncology in medical school, but eventually went into research, where I now work on the development of these new treatments. I enjoy the intellectual challenges; and, if I am to be honest, I don't think as a clinician I would come close to achieving the goals I outlined above. I have the deepest respect for those who do.
30
Why keep hope alive, if it is hopeless. That seems cruel.
3
Because, Samantha, the object of hope isn't always survival. Maybe it's an important life milestone, like the birth of a grandchild; maybe it's to have enough time and mental clarity to resolve that difficult relationship with a sister or son; maybe it's the wish to see the spring crocuses explode in brilliant purple for the last time, in peace.
If I've learning nothing else from my cancer patients, it's that hope is engendered and sustained in surprising and wonderful ways. Long term survival is but one.
1
I can see trying everything for a person in his or her 50s or 60s. I cannot see throwing every possible treatment at a person who is already 80, may not have long to live, and who may, in fact, prefer palliative care to more treatment.
In the end in America, what usually governs the course of treatment is the cost and the patient and patient's family's willingness to pay what the health insurance company refuses to cover. My preference, if it were me, would be to have excellent palliative care at the end rather than risk a painful death or a prolonged one that will cost a ton of money I and my family do not have.
The honest truth is that our health care system does not do well when things are ambiguous or delicate. Insurance companies deny payments, lose claims, or mindlessly apply rules even when an appeal and common sense indicate otherwise. Doctors do not have the time to help patients and their families consider what they are doing: does it help or are we merely delaying the inevitable or making it more painful for all concerned.
Money isn't everything. Nor is treatment. There are times when it's best to let go, comfort the family and let the patient die. Dying is not a sin. Dying is part of life and inevitable.
45
I wish the author had detailed a bit what hospice or palliative care consists of, and why that is seen (by insurance co's) as incompatible with active treatment.
I just had a relative go through various courses of cancer treatment, and did die during treatments before hospice was considered, but I wonder what that would have been like.
7
The complexity of modern medical care may come to an acceptance that, while miracle cures may become reality, it could elude any given individual in real time; hence, the approach in offering each and every patient the choices available...while the wise adage of 'expecting the worse while hoping for the best' is explained by a trusted physician who, we know, has our best interests in mind (at heart). As they say, the only sure things in life are 'taxes and death'; shall we accept at least the latter as part of life, a happy ending of a well-lived life?. And that demands certain comfort today's medicine may offer; nothing wrong dying with dignity and grace.
5
The author, with all due respect to his professional experience, is discarding the case for continuing to have hope. These new therapies are the clear future of disease management and cure, and the fact that they only help about 15% of patients is an indication that there's still more work to be done. But the direction in which to go and where to spend future R&D dollars to make progress has been clearly laid out.
6
In Oregon we passed the Death with Dignity Act as an elective choice ( with two doctors approval) for those suffering from terminal illness. For some, that illness is cancer. Having exhausted all treatment and not wanting to go further with curative treatments and/or palliative care has reached the limits of it's effectiveness it remains a choice. If it is agreed the patient is within 6 months of death,they can obtain a prescription for a lethal dose of barbiturate to be administered only by the patient themselves to end their suffering and their life. All choices are overseen by participating physicians, and pharmacies (some will not fill the prescription for religious or moral reasons). In Oregon anyway, it's nice to have this option...
118
This seems very humane. While we want to eke out every chance for a loved one, they should also have the power to stop. We have this option for our furry friends, and sometimes it is the most humane option.
37
I am glad that my home state, Hawaii, recently added the Death with Dignity option as a law. Up to now, I had, in my Advance Health Care Directive, specified that should it be necessary, I would travel to Oregon to ease my passing. I can now happily erase this part of the document and be free to stay close to my family right up to the end. Hopefully, far in the future.
24
This should be the law of the land. It is nobody’s business if someone wants to die rather than suffer. As I approach my twilight years, it is not death I am most afraid of. I am most afraid of reaching a stage of incompetence and incontinence and having no way out. If I had a lethal dose of barbiturates stashed away, I would rest easy.
24
As a person in her mid-thirties who has dealt with 2 cancer diagnoses, I appreciate each and every person who chooses to take a chance and try a new immunotherapy or other treatment that we don't yet fully understand. With each (fully informed) patient, I am hoping that more and more is learned about who will or will not benefit, why, and how.
I am a public health professional. Before my diagnosis, I had a different perspective. Before I had a child, I had a very different perspective. When/If I see 80 years old, I'll likely have another perspective. But there is no way to explain or communicate the fear I have of the day that someone says, there's nothing else we can do. So for now I thank all the brave individuals who are giving it a shot and helping advance medicine at the same time... and maybe we can re-brand palliative care to remove the stigma for those of us in active treatment?
156
I am curious about how immunotherapies could/would work for the millions of folk suffering from autoimmune conditions who develop cancer.
5
The biggest point to be made in this article is that physicians need to be trained in discussing treatment options truthfully and thoroughly. My father suffered much more from his cancer treatment than he should have. I believe he really thought he would be able to live for several years, not months with treatment.
He was ill, but able to get out and about, fish, and work in his yard before the side effects of treatment kicked in. The oncologist refused to give him the true picture and it put me in an untenable position. I felt as if I was keeping a secret from him. I believe all oncologists should train in palliative as well as cancer care to be able to treat the whole disease.
I sincerely hope immunotherapy is the answers to a longer and more quality life for cancer patients, but doctors should not offer it as a cure for everyone and have the discussion about transitional care well before it's too late.
102
It sounds like your father's oncologist did not fully present and discuss the benefits and risks of each treatment.
I don't know when this situation occurred in medical history, but I do know more recent generations of medical students receive required training in medical ethics, and get some information about palliative care.
Ethics is now critical to medical practice, and I think most MDs who had ethics in their medical curriculum and practice ethics in their clinical work realize that much of the time when you get through the discussion of benefits and risks, many patients may realize the benefits of risky and painful treatments are not worth it for the quality of their remaining lives.
That said, my best friend died of ovarian cancer. When she realized she was not going to make it, she agreed to a series of experimental therapies. I tried to talk her out of it, and she experienced some terrible side effects from some of the "new" drugs. However, I finally realized she wanted to do some good with what was left of her life, hoping something constructive would result from a very difficult cancer to treat.
It is a very personal decision that needs to be respected, whatever a terminally ill patient chooses--assuming that patient received the necessary medical information and ethical considerations to make an informed decision.
17
I worked in oncology research for years, and saw many patients die during desperate searches for a cure, in pain and unprepared for dying. I would hold their hand and see the life disappear from their eyes. Instead of just oncologists, maybe we psychologists could help MDs and patients navigate the whole process. After all, it's what we're trained for. Just saying.
119
I believe that any patient with advanced cancer should be given a real and honest perspective on the effectiveness of the various medical treatments together with side effect and prognosis . We live in a world where tv commercials are insinuating daily the miraculous power of many drugs ( ask your doctor.....). This publicity is sending a wrong message being often interpreted as a cure for cancer . The patient should receive honest counseling about his/her condition , with full explanation about the pro and con regarding treatment and eventual palliative care . Too often the patient is given “fake “ hope with new therapies, while the alternative of palliative care is put on the back burner and proposed too late , when most of the patient’s time has been used up with painful treatments . We need more common sense and empathy dealing with any illness.
60
...and we should end the direct to consumer marketing of all prescription medicines!
19
I was at stage IV of a very aggressive cancer. I got immunotherapy through a trial of an untested drug four years ago. I could have given up, but didn't. I have had no evidence of the disease now for three years and have returned to a normal and active life. Let the hospitalists do what they do, but leave the prognostication to cancer experts. Sorry, I see no problem with miracle cancer cures, our holding out hope for those, like me, who may have had little hope before these new and advancing therapies became available.
86
I am SO glad that your treatments worked for you. I'm also glad that you volunteered for the trial, and in doing so, gave doctors valuable information that will help others. However, my experience with a friend who had a bad cancer was that immunotherapy made her life so much worse and came with massive organ failure that ultimately killed her. Everyone is different. Ultimately, it's an individual, hopefully informed, decision that is made by the patient or their advocates. May you continue to thrive and enjoy your full life!
11
I was a lab rat for a cancer drug trial for a custom tailored immunotherapy at NIH to try a drug by a now defunct company Genetope.
We were first pretreated with 8 months of nasty chemo and those that went into remission with the smallest tumor load were give a randomized shot at the drug. Lots of cat scans. Spinal taps, bone marrow biopsies, fun stuff all.
You get down to the dice game part and hope it is you with the brass ring.
Show up once a month on a Saturday for your hope to be custom vaccine.
Made a friend on the Saturday schedule, while we waited 3 hours to see if the reaction would kill us, Taught her to dance the Tango.
Five months into six the monthly shot protocol on our Saturday she announces she is dropping out because her lymphoma has come roaring back.
She is mad at me because I told her we both would live.
I used to wonder if I should feel guilty about having almost promised something I couldn't guarantee.
Then I came to realize that treating someone decently and taking our minds off a fate we shared was all I could do.
51
You didn’t give false hope. You simply gave your strong hope and sincere belief in the fact that you wanted her to live.
11
She is not mad at you.
4
I lost my wife of 44 years to lung cancer last July. She endured treatments and their side effects for 3 1/2 years before she passed away. She had traditional chemo-therapy, radiation, and immune-therapy. We were told that the cancer was not curable, but it was treatable. Sadly, the effects of the treatments were nothing to desire.
Four months before she died, she decided to forgo any more of these debilitating treatments and selected hospice care, instead. She died at 8:08 am at home and in my arms.
The promise of "treatable" will forever color my perception of that option. If it ever happens to me, I will decline treatment. It's a cruel hoax.
178
I'm sorry for your loss
18
Barbara Bush (R.I.P.) last year said she accepted the fatefulness of death, as a function of her faith. IMHO, true New England common sense and stoicism. It is, what it is.
6
As a very recently diagnosed cancer patient currently undergoing "adjuvant" chemotherapy, this piece certainly resonates. My Stage II ileal cancer tumor was removed in December during emergency surgery for what had been assumed to be acute appendicitis. By all accounts (so far) - with no negative lymph nodes found during the surgery or the subsequent tests/biopsies, and with no apparent spreading of traceable cancer cells in my blood - I am hoping for my own minor miracle. (Many?) more years as a cancer survivor. But even with my relatively side effects-free (from what I have heard and read from/about others in my situation) chemo journey the last few months, it hasn't been easy. Nor stress-free. For me, or for my family. There is a not-insignificant voice in my brain which keeps whispering: "Will it have been worth it?" Time. Money. Discomfort. Family member stress. Etc. I hope - and honestly think - I'll be one of the lucky ones who will get several years of "cancer survivorship" after this current phase is over. But it's fair to say that when I say "after it's over", I have no illusions. I'll be periodically scanned and poked and prodded on some regular schedule for the remainder of my "forever". Always wondering what is going on "in there" - in this body I'd always blindly trusted to carry me to the end in good health. But now, the question whether I will ever have to choose "comfort" over "cure" will always be the elephant in the room. I can only hope I'll choose wisely.
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I hope only good things for you, Ted. It sounds like you are going on this journey with your eyes wide open.
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Thanks, Jane. I appreciate your thoughts!
An article written by someone apparently not in need of a miracle cure - yet.
Get back to us when your time comes, doctor.
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I don’t think that the doctor was dismissing immunotherapy at all but he would like to see it being used in the appropriate setting which we don’t know yet.
He is in favor of palliative care when it is appropriate and to allow some care to include both palliative care and therapeutic care. Presently if you are in “hospice” you must get out of that institution to receive cancer care. It just happened to my father.
I agree, combining palliative care and therapeutic care can be appropriate care. That being said, false hope doesn’t serve anyone well.
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False hope may not serve anyone well.
But who gets to make the call?
An authority figure tells a patient his case is "hopeless" - but the patient doesn't think so.
Now what?
Folks abound who "know' what they would do in a given circumstance.
And they expound with utmost confidence.
Why is it that so many people seem to think they know what is best for people they don't know?
Why is that?
I have experienced two family members, at advanced age, respond to a diagnosis of advanced cancer. One at age 90 chose Hospice care: "I have had a wonderful life and am ready to go.) In his final weeks we celebrated his life, welcomed family and friends to visit and reminisce, enjoyed the holidays. Hospice provided palliative care so that he could slip easily into death.
The other, also of advanced age, chose aggressive treatment. Its benefits are yet to be determined. It is enormously stressful for the patient and the caregivers and the family who care about her. I do so agree with Wachter's statement about not robbing the "dying person with a smaller, more subtle miracle: a death with dignity...free from pain and discomfort."
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I'm not of advanced age yet, but I've often wondered if I was diagnosed which way I would go. Would I try to hold on for my kids who are young? Probably. But when I'm older I could easily imagine myself saying, "to heck with it, I'm old, I've had my time."
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Even when these treatments “work,” the patient is often back to where she was within a few months. It is not a cure usually. Why should an 80 year old cling to that?
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Because even an 80 year old person clings to the hope that medicine may be able to offer him/her another week, or a month, or a year or five years of live to enjoy with their family and friends. That's why.
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Treatment is always a balance between hope and honesty. Patients and families should have both, and MDs need to learn how to use both, and recognize that patients die, even theirs.
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MaxtheSFcat - An 80 year old has lived (and hopefully enjoyed with friends and family) 4,200 weeks of life on Earth. If they haven't "lived" by then, another few weeks/months are not going to add much.
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As a hospice medical director, I see the dichotomy of curative vs palliative cade that Dr Wachter points out is often the biggest barrier we face to getting patients to agree to hospice. Patients (or family members), despite our deepest conversations, often cling to the idea that one more course of advanced therapy will be magical cure. Unfortunately, we often find it leads our patients back to us, more debilitated and less able to enjoy their final days.
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A dear friend of mine had the opportunity to participate in a study at the NIH. Immunotherapy not only didn't work for her, but she was completely and abjectly miserable, nearly dying from the treatment. She regretted going through the process because it robbed her of many months of a reasonable quality of life. But she was a fighter to the end.
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It is small comfort, but your friends misery in the end will contribute to anothers survival.
Not being hyperbolic- I was a very good customer of Sloan Kettering in 2009 and 2010, and for follow up another four years for two very rare types of cancer. If I had my diseases 10 years earlier I would not have made it. Fortunately, my cancers were found VERY early because I was "lucky" and had diverticulitis that required surgery.......and because others had the disease I had and because of these unknown, quiet heros, treatments were understood that allow me to be here today. I am now 53, my daughter will graduate from high school next year, and I get to see it.
Yes there is life beyond cancer- some make it, like I do, some do not-like my mom who's birthday was last week. She lived 10 years less than her mother. I miss her, and more I miss that my daughter did not really have the chance to know her grandmother. They are soo much alike.
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Thank you for sharing your knowledge and thoughts, and for your service to humanity. An ongoing commitment to evaluation and discussion of these issues is essential to improving the whole life experience.
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