In oncology, we very frequently hear people say, “I don’t know how you do what you do”. There are plenty of times when we might start to wonder ourselves, as we fight with insurers to get a treatment, or when very bad things happen to patients we’ve developed relationships with. As I said in the introductory page here, the stakes are high with cancer. The highs are great highs, but the lows are deep lows. Although we don’t talk about it much here, because it’s not an uplifting topic and I too like to give people what they want, people die of lung cancer, and also many other cancers. But it’s not necessarily death that is the hard part; the hard part is when there’s a significant disconnect between what patients/families expect and what we can provide.
Many of my patients have died with family around them, peacefully at home or in a hospital or wherever, often with hospice care, and the patients and families were grateful that, after taking on the rigors of treatment, toward the end they didn’t suffer and that the didn’t feel alone. But it’s hard when patients and/or families want more treatment and an oncologist perceives that the treatment is worse than the disease. The hardest part is that there’s a spectrum, and everyone is at their own place on the spectrum. I recommended chemotherapy for a 78 year old man with advanced lung cancer, because I feel he’s fit enough to tolerate it, I believe I can offer a chemo regimen that won’t be too unpleasant, and there’s a real chance it will provide meaningful survival benefit and improve some cancer-related symptoms. We talked about the pros and cons at length, and he eventually said, “thanks, but I’m not interested”. Here, I was the person suggesting a more aggressive approach than the patient was inclined to pursue. But I know that every week I have a conversation with a patient in which I explain that I don’t think further treatment will be helpful, and they feel something between disappointed and betrayed. (Not every patient feels that way during these discussions, but some do.) The comedian George Carlin used to say that everyone on the road other than you was either an idiot (driving too slow) or a maniac (driving too fast). And it’s the same in medicine, perhaps especially in oncology. Some oncologists are inclined to treat as long as a patient can get in to the clinic (and then some hospitalize and give chemo to bedridden patients), while others may be more fatalistic and wonder about the point of treating if the benefit is what they’d perceive to be a small survival difference. I consider myself not the most aggressive, and definitely not the least, but everyone probably feels this way, just like everyone feels that they’re a better than average driver. We all need to be true to ourselves.
I know some people would say the right answer is to give as much aggressive treatment as the patient wants. There are times when I think it would just be easier to come up with one therapeutic regimen after another, fully expecting them to not be helpful, until it becomes undeniable that further treatment isn’t feasible. My concern is that pushing aside the tough issues of recognizing the limits of treatment often also pushes aside an embracing of comfort care. I think it’s unfortunate that some, and perhaps many, people feel that comfort care is a dismissal or a consolation prize. I think of it as a way of saying that the goal of an oncologist should be to help patients with cancer, and some cases that may be a cure, in others it may be a prolonging of survival (ideally also with improvement of symptoms), and in other people, or at some point in the process, it may be focusing on having someone feel as good as possible for as long as possible. Sometimes aggressive treatment does come at a cost to quality of life: nobody mistakes lung surgery for a nice back massage. But alleviating pain and other cancer symptoms is still a valuable contribution for patients and the family and friends who care for them. Also, I don’t think doctors are or should be obligated to provide care that they feel is clearly more likely to harm than help a patient. Medical futility is a tough issue, especially in health care systems that have more limited access to drugs or interventions. But even in the US, the resources are not infinite, and I feel that an oncologist should be obligated to give treatment that they feel is inappropriate and futile. But as I said, there are oncologists all along the spectrum, and I feel that it’s quite reasonable for patients to seek a different oncologist if I can’t provide what they seek, whether it’s a medicine or anything else. I think it’s ideal to have a relationship between the patient/family and oncologist in which they align fairly well on aggressiveness and when to transition to an exclusively comfort care approach. I have no doubt that when doctor and patient aren’t in synch, it’s at least as hard and probably harder on the patient than it is for me.
posted by Dr. West @ 9:59 pm link to this post
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June 1st, 2007 at 3:58 am
Nice article. You deserve the doctor-of-the year award. If you ever want to practice medicine in Maine, we would welcome you at the Maine Medical Center Cancer Treatment Center.
June 1st, 2007 at 7:16 am
I have lurked here for about 11 months and this article finally made me register. You are an amazing person who seems to have found balance to a very difficult situation. I had e-mail discussions with you on lchelp last June after my diagnosis of Stage 1A BAC for which I was fortunate enough to have surgery for. While I have not had need for further treatment to date, I read each and every article/subject that you take the time to put together. If it doesn’t apply to me in my life right now, I know I may use that information to help others or myself somewhere down the road. I only wish I could convince you to relocate to Alberta (yes, we are on a map-ha ha); however, I know everyone on the boards wishes the same - that you were in their neighborhood! I have no need for an oncologist at this time, but should the need arise I would feel like the luckiest person to get someone who is as caring and thoughtful as you are. Thank you for dedicating your time away from your own life to help so many people. I, for one, am forever grateful! I guess my lurking days are over!!!
Linda Pfannmuller
June 1st, 2007 at 8:59 pm
Linda, and Lisa,
Thanks for saying such nice things — I really appreciate it, and I’m glad I could make a difference. And Linda, glad you registered: welcome! Feel free to chime in any time.
-Dr. West
June 1st, 2007 at 11:01 pm
I think that the person that is dying should ulitmately be able to decide for themselve’s whether or not to continue treatment AND which treatments they would like to pursue - even if uncoventional, regardless of their overall condition. These people have nothing to lose, what is the reason for imposing restrictions on their treatment plans. If they want to endure the treatments, let them. If they don’t want futher treatment, we don’t force them to get treatment.
If 200,000 people are dying from this disease annually, who knows, we may come up with some off the wall treatment that may actually work. This is why people illegally buy DCA over the internet to try, they have nothing to lose. If we were already trying drugs such as this as part of hospice or last ditch care, than people will not be tempted to self medicate without a physician overseeing their treatment.
Over the course of 10 years, you will have 2 million Americans alone to test various last ditch efforts. Something existing oddball drug combination may just work. If we just keep giving up on the most critically ill patients, I think that we will not be able to learn anything. Clincal trials are ALL geared towards the better performance status patients. We learn things in life from tackling the hardest problems, not the easy ones.
Let the dying patients make their own decisions. Even it is thought that there is no hope for them, still let the patient decide on their treatment course, because they DON’T do trials on poor performance status patients. We could just be giving up too early, who knows.
On the other hand, we could also be biasing the true effectiveness of cancer drugs in these cancer drug studies because of the fact that they only study the healthiest patients. Studying on the healthiest patients has to be a far greater bias in a clincal trial than any “lead bias” or any of the other relavant biases. Study the sickest people, not the healthiest people.
Jim
June 2nd, 2007 at 3:11 pm
I can only speak about my own experience thus far which has been limited. As I began my journey with lung cancer last year, my friends journey ended with her passing just 6 short months after diagnosis (2 months after mine). I cannot judge whether she had care that was “not aggressive” enough, or “too aggressive”; however, speaking from my own experience with my GP (whom I love dearly, but don’t always agree with) there are still many doctor’s, including him, who believe that if there are brain mets, etc then all that can be offered is pain meds - end of story. I don’t believe that; however, I feel he is entitled to his opinion - I just wouldn’t seek him out other than for a referral if that happens to me in the future and he is well aware of that fact.
I have worked with many doctors as a medical secretary and each doctor has their own style - some will work for you in some instances and not in others. I didn’t get from your post Dr. West that you were just washing your hands of any situation - simply that at times the pros and cons don’t align. I too, strongly believe that each and every person has the right to the treatment that they desire; however, I also don’t believe that a doctor should work against their own ethical/moral code.
Personally, I am much more upset about the fact that I read in the Edmonton Journal newspaper this week that in Canada Avastin is available in only 2 provinces - the other provinces - including Alberta, state the cost outweighs the benefit. I believe I have the option of looking for another doctor if his/her style doesn’t fit mine - I don’t have the option to moving to another province just to get the very drug that may save my life.
I hope I didn’t ruffle any feathers as that was certainly not my intent. I agree that we ALL should have choices - and that includes the physician to use their internal compass as well.
Linda
June 2nd, 2007 at 9:53 pm
Jim, and Linda
I appreciate your perspective, Jim, and everything you say makes sense, as long as it isn’t taking away from something else. I’ll say that while there aren’t nearly enough trials for people with marginal performance status (2 on the 0-5 range like the Zubrod scale I describe in prior posts on the subject), there are far more now than there were just 3-4 years ago in oncology, and there are now sessions in our professional meetings dedicated to this. Sicker patients are still quite understudied, but we’ve come from a D- to a C in this field. And the momentum continues to study this group more and more.
I would come back to the question of whether it’s taking away from someone else. In Linda’s reply, she talks about the stark decisions that have been made based on a rationing of health care by cost-effectiveness dollars, because in most parts of the world, there are clear limits to how health care money is spent, and when there isn’t an infinite amount, highly expensive but borderline or completely futile therapies can’t take precedent over treatments of clear benefit. And while the US system is quite large and convoluted, there is a finite amount of money, and plenty of people are getting far less than they need while others get every treatment of any proven or hint of value and then more that may well add nothing or harm a patient, but also take away resources for other health care. My own hospital provides a great deal of free care, but the funds are limited, so the expensive useless treatment one person gets takes away the opportunity for someone else who may get much more from that resource.
Obviously, Linda, your comment fits in with this whole line of discussion. All of these are tough choices, and I would just highlight that the US system isn’t perfect, too often aligning the haves and have-nots on insurance status rather than geography. I truly sympathize with you, as it reminds those of us who may be enamored of the concept of single-payer healthcare that it leaves plenty of people unhappy with the limits imposed. But even for the vastly greater amount of money the US spends on healthcare, our outcomes are not better than countries that spend far less, because of the inefficiencies and inequality of how care is distributed.
-Dr. West
June 3rd, 2007 at 7:39 am
This is may be veering off topic, but I just wanted to chime in about Jim’s thread. Because people are living longer, “70″ is the “new 40″ (years old) and we need to understand and develop more treatment options for older and possibly frailer patients as well. Not sure, but it seems that novel and non-systemic approaches like RFA may have a role in palliation of advanced disease –if only to help improve an individual’s performance status for later systemic therapy. It seems worthwhile and right to study less-invasive therapies alongside stronger, more traditional ones.
June 3rd, 2007 at 2:44 pm
Dr West, Thanks for bringing up this very difficult subject. For myself I want all of the info I can get -The good,the bad and the ugly.I want to know what I can expect from treatment and what I can not. I want to be taught thoroughly abot what the tx is and its side effects. That is the only way I can make an informed decision about how much and how far I would want to go.I worked as a Hospice nurse for many years and many times I felt the Doc should have sent the patient to us much sooner than they did because they only had hours or days when we felt we could have developed a relationship with the pt and family and added to there comfort during the dying process whether that be a few weeks, months or sometimes even a year. Now I have had to battle cancer twice myself and I work in an oncologist office (not mine) and I see it not always being the doc but also the patients who want to keep going even when the treatments seem worse than the disease. I have seen those who asked for Hospice before we felt it necessary and those who had a feeling of abandonment as if their doctor had given up on them instead of realizing that he felt this next level of care was the most appropriate. I do believe we as pts have the right to the best care for ourselves but I count on my Doctor and need a doctor who can tell me like it is ! Give me the truth about how my cancer will typically progress and what my treatment options are and are not and why. If you think I am at a point that in your expertise,treatment needs to be at a different level of care which may be palliative or comfort measures then I want to know that too. I then have the choice to make as to whether to pursue another opinion or accept that change in the level of care . I used to think I was really good with those “Hard” conversations with patients always hoping that I was helping them understand that we were going to focus on quality of life for no matter how long that might be and if they wanted to change their mind somewhere alomg the way or appropriate treatment became available for them that that was OK too. I know each time I was dx with cancer I wanted ti know the stats but I am also a person who is aware thet we are all different and do not read the same book about how to act when you are told you have cancer! I also believe we have to be our own health care advocates to some degree. Some docs feel if you don’t ask then you already know or you don’t want to know. I have to ask questions as well as I like info volunteered to me. But some older people such as my Mother’s generaton were not brought up that way. You just do what the doctor says and did not ask. what when or why! I know it probably sounds like I am on a soapbox about pt advocacy. I just want to thank you for being the kind of Doctor who certainly does seem to explain honestly both the good and the bad and is willing to listen to his patients as well. I feel graced to be able to respond to these posts as well as ask questions re my own concerns as well. Thank you for the time that you give to us
. Many blessings Debbiel
June 3rd, 2007 at 8:12 pm
Debbie and Yirol,
Thank you both for your thoughts. I’m glad this thread is a springboard for people to openly discuss some difficult subjects that really shouldn’t be just me giving unilateral thoughts to people, but rather in invitation for people to have as open a conversation as we can. I certainly agree with the approach of educating patients so that they can be their own well-informed advocates.
-Dr. West