Here I sit at the end of hospice IDT (interdisciplinary team) meeting with a sense of sadness. I feel compelled to write this entry. We have just reviewed and had a quiet moment for all the patients who have died in the last week. The list is long as usual but what saddens me the most is there are names on this list that I’ve never heard before. To be the Medical Director of a hospice and to not recognize a name is a tragedy. If this only happened once in a while it wouldn’t be so sad but it happens every week without fail. Why does this happen? It happens because so many patients and families don’t know about the benefits of hospice care. They don’t realize that hospice is about LIVING not dying. It’s about living the rest of your life on your terms, living your life with as much quality as possible, it’s about allowing your family to participate in a part of your life that will unfold no matter what we do. If you couple the above with physicians avoiding conversations related to End-of-Life Care, you get patients referred to hospice in the last hours and days of their life. I look at these names and feel regret for the patients and families as I think how much help our hospice team could have been physically, spiritually, psychologically and socially if we’d been involved during the last six months of their life. Next week I’ll have to start my apologies all over again to a list of names I’ve never seen before. “Sorry, I don’t recognize your name” I’ll be muttering under my breath as I go down the list and read the names one by one.
There is a great blog that I stumbled across as I began reading various blogs. I ran across a blog by an Oncologist named CancerDoc (Link), about a budding Oncologist trying to make sense of the world. I asked him to give me insight into my blog especially entries like “Why Don’t They Stop Chemo?”, I decided to post his comment as an entry because I think it’s worth reading and I really appreciated his honest insight. I also wrote a response in return. It’s long but I think well worth the read.
I think your insights are excellent. I can’t speak for others, but as an oncologist, I’m often confronted by other docs and allied health professionals who wonder “why we don’t stop chemo?” or “why we are even doing this to begin with?”
I think that it is complex and individualized in many cases, but there are probably some common themes, whether oncology docs will admit it or not.
One, as you alluded to, there IS a financial incentive to do more for patients. I know, this is dreadful. But, as is being discussed in our current health care “debate” in this country, the incentives in the US are for “doing”, not “talking” or “preventing” or “comforting”. Why do we do so many cardiac catherizations or MRI scans or arthroscopies. There is a medical-industrial reason for this. Oncology is no different. Okay, enough about that.
Two, the patients want it. In this culture in the US, where we are resistant to talking about death and dying, where people want taut skin and sexual potency and to “feel good” well past the point where it is likely biologically, there is a resistance to death. Just witness the whole donnybrook over the Sarah Palin “death panel” thing. People are so used to having whatever they want or at least having the perception that they can have what they want indefinitely at any age for low cost that the death panel idea was revolting. So, for an oncologist, there is often subtle pressure from patients and families, buoyed by the 10K runs for breast cancer and the story of Lance Armstrong, to do as much as possible. The oncologist is often put in a position of doing it, because if you say no sometimes, the patient will just leave to seek another avenue.
Three, oncologists in general are often biased by they’re success stories. We’ve all had patients on death’s door, severely ill and with poor performance status from their cancers, who, when treated, respond like Lazarus. Many of these people are never seen by other docs or other people because INPATIENT oncologic care is generally end-stage and the bulk of care occurs as an outpatient. So, there is a little selection bias amongst hospitalists and other inpatient specialists who see terminal onc patients in-house and think we are just drubbing them. When they pull through and “make it”, they are only seen by us as outpatients. When, they are flogged to death in the hospital, all the inpatient staff thinks is “here we go again.” All onc docs have had tremendous saves in their practices who were written off by other physicians. We want to believe that this is possible for all patients.
This is another thing where the good of the individual is taking precedence over the whole of the population. From a cost-benefit standpoint, it probably is NOT cost-effective to “save” that one person our of 20 or a 100, but rather to not pour resources into that person and let them die. And do divert those resources to other, treatable illnesses. But, this is precisely the kind of discussion, this kind of “rationing” or zero-sum analysis that Americans are unable to tackle.
Somehow, we cannot accept that we already ration care and that for every 80 year old with lung cancer that I treat and give an extra year of life to, there are countless other people that I give very expensive chemo to who derive little benefit. Until society as a whole comes to grip with the enormous resources that are poured into peoples lives in the final 1-3 years of their life, we will never get the cost of care under control.
Response from HospicePhysician
Thank-you for your great and insightful reply. I really appreciate your honesty. There are many things in your post that I could relate to.
1. The more we do the more we reimburse. It is unfair to just pick on oncologists. I’ve known many a gastroenterologist who put feeding tubes into End Stage Dementia patients even though they didn’t necessarily agree with this. I think the attitude is “I’m the specialist, I’m called in to do a job and I will do what’s asked of me or they will stop consulting me.” I spoke with a young GI doc that has just started and he stated “I hate putting G-tubes into the old dementia patients.” Well one would ask why would you then? Well he not only has pressure from family, referring physicians but also from his group of senior doctors. Imagine if he would refuse, what would happen to his career? Myself, I have been consulted by a physician because he thought he was doing me a financial favor. Luckily he did, because the patient and family benefited with the involvement of palliative care, but his intent was to fatten my pocketbook first and foremost.
2. Part of doing more, which we haven’t touched on, is also liability. Doctors just don’t want to get sued and if they have to do 1,000’s MRI’s so they don’t miss that one that can bite them in the butt, they will do it! We only have ourselves (society) to blame for this since we are a sue happy society. They taught me in residency that even if everything was done appropriately, in an emergent situation, but the patient dies, expect litigation.
3. Patients do want chemo and almost don’t give the oncologist a choice. I’ve witnessed this for myself. There was a young 49 y/o patient with metastatic breast cancer that didn’t want to hear that her cancer was in the terminal stages and chemo was only palliative. She wanted to believe that she would live another 30 years because she had a young 6 y/o son, that she wanted to live for. I even told her that her treatment was palliative. Well, she didn’t want to hear it and she kept going back to her oncologist for more treatment and he also mentioned that her chemo was palliative. Then when she really declined and had to be admitted, both her and her husband were angry with the oncologist because he wasn’t straight forward with them and “lied” to them. I was pretty amazed at how much she pushed for chemo, was in denial and then easily turned around to blame the oncologist.
4. I have witnessed this “bringing someone back from the dead with salvage chemo” in the hospital with an oncologist that is notorious for giving patients chemo who are actively dying. I’m sure that for every patient he is thinking, “this could be the one I save” as you have eluded to. Unfortunately, as you stated, this is rare and the question is whether this should take place or not. Maybe, instead of asking the financial question, the question should be; should many patients be put through more pain and suffering to save the one? I’m not sure what the answer is but I guess I’m biased in that I want to make everyone comfortable and not suffer.
5. If I could find an oncologist such as yourself, I would send patients to them since I do get patients that want second opinions etc. Also, if I worked with someone like you, I would feel like I’m giving honest answers to patients when I ask the oncologist what the prognosis for this patient is as part of my information gathering before a family meeting. I would feel that for once Oncology and Palliative Care could work more as partners rather than as opponents.
Thanks again for your post CancerDoc!
This post originated from the comment section of my blog entry “Letting the Doctor Off the Hook.” I got some offline comments and good discussion so I decided to retool my comment and post it as a blog entry. The question I started to ask after I finished my fellowship and started working in the real world is why do patients continue to get chemotherapy when it is clear that they are no longer benefiting from it or their time is very limited? One response is that it is solely financial, but I know some of these oncologists on a personal level and that is not the sole driving force. I would argue that the main reason is because the oncologists have a hard time with difficult discussions. The rest of the entry is from my comment.
“There are many patients that would benefit from hospice if referred sooner and many times I have questioned why oncologists either don’t refer to hospice at all or refer several days prior to death. There are 4 main reasons that I have observed (I’m sure there are more). 1) They have to have the difficult conversation and address that the current treatment is not working and discuss alternatives such as hospice. This is difficult for them since it is very uncomfortable as physicians to squash the “hope” of patients (as perceived by the oncologist ) and discuss “bad news.” 2) By admitting to number 1 and having the discussion, they are admitting to their “failure.” I’m not sure what they were thinking when they decided to be oncologists, but 100% of their patients will die at some point or another. They are literally experts in prolonging death (I’m not saying this sarcastically, many cancers will now be looked at as chronic illnesses as prognosis lengthens due to new chemo medications that will prolong life). I’ve seen oncologists want to continue with treatment even though the patient and family were adamant that they were done with treatment. I’ve seen the oncologist have a hard time letting go. 3) So we ask them to have to the “difficult discussion,” feel like a “failure” then on top of that they lose a customer. Financially this is definitely not an incentive to have a heart to heart with a patient. The truly great oncologists do not allow the financial aspect of their job to influence whether or not they will start, continue or stop treatment. They base their treatment options solely on what’s best for the patient. 4) They have a difficult time realizing that their patients are dying. Even though they are surrounded by dying patients in their practice and the hospital, they do not practice hospice nor is hospice and palliative care a part of their training. I have seen many patients in the hospital receive chemo while they were actively dying and I’ve counseled many nurses that felt guilty about giving chemo to these patients. To summarize, there are many reasons why people will continue to get chemo, but just like I hate being pigeon holed as the physician that wants to put everyone on hospice, I’d hate to pigeon hole every oncologist as non-caring and money hungry.”
This is a phrase I’ve coined to help patients talk to their oncologist. As I’ve eluded to in my blog and as another blogger noticed, oncologists continue to treat patients with chemotherapy even if the patient is not a candidate for further treatment. One of the reasons is that they don’t want to take HOPE away from the patient and they are afraid that the patient’s psyche is to fragile to handle the truth. To make matters worse many patients approach chemotherapy as “Please doctor can I have chemo” rather than, “I would like to be treated if in your professional opinion the treatment will increase my time with minimal side effects and risks.” Most doctors will continue to treat, even if contraindicated, if you approach them with the first way of asking the question. I’ve also seen patients that initially wanted treatment (and they said “please treat me”) become angry later after they find out that the treatment wasn’t necessary or produced a poor outcome. I had an experience with a patient that had metastatic colon cancer at age 48, who wanted to live because she had an 8 year old daughter. The oncologist began treating, but this certain oncologist never tells his patients whether the chemotherapy is curative or palliative, and he didn’t tell her that the chemo was palliative only and that her time was limited. The patient had many opportunities to discuss how bad her cancer was but she chose to ignore this and felt that the oncologist would tell her if her cancer was severe. The oncologist never discussed it and it fell on my lap to tell the patient that her chemo was palliative not curative. After our discussion the husband was left to pick up the pieces as the patient didn’t like what I had to say. To make a long story short (2-3 months later), the husband and patient became very, very, very angry with the oncologist because he didn’t fully discuss the patients cancer and prognosis and he prescribed chemo that was perceived not to provide a benefit. Why do I mention all this…because MOST oncologists will treat any patient as long as the patient is actively seeking treatment. They will even start what we in the field call “chemo-lite.” Which is a chemo agent that will cause the least side effects but make no difference to the cancer except to allow the patient to feel that they are being treated. So how do you let the doctor off the hook? You say something to the effect of, “Doc, in light of my cancer I only want to discuss treatment options that will potentially benefit me, but I’m ok not receiving any treatment if you do not expect treatment to be beneficial for me.” By approaching treatment this way, you give the doctor some breathing room and a chance to say, “you know chemo may not be beneficial for you with this type or stage of cancer.” If you approach the doctor with resting all your HOPE on chemo/treatment, then guess what, there will always be chemo available to you. However, if you initiate conversations about and put more importance on quality of life, dignity and spending time with family and friends with your remaining time, you are less likely to get unnecessary treatments and more likely to have a better death. In fact when some patients opt for further unecessary treatment, they can potentially shorten their life. This seems conterintuative since the whole reason they are receiving chemo is to lengthen their life. Please email me for further advice about how to discuss sensitive issues with your doctors.
It’s amazing to me how many physicians don’t realize that their patients are dying. Sometimes I’m in awe and I’m thinking “are you serious?!” Last week we were consulted on a patient because she was 90 with widespread metastatic disease from an unknown primary cancer. The daughter seemed to be on board with getting her home on hospice since the patient repeatedly stated “I want to go home” and she was clearly declining with a poor functional status. The patients son wasn’t on board with stopping all treatments and was encouraged by the primary care physician who stated “If it was my mom, I would continue to treat her and see how things go.” Now this may seem like good advice, but if you all could have seen this poor patient, your heart would have gone out to her and you would have known how I felt. We talked to the daughter during a Goals of Care conversation, since the patients confusion had worsened and she was unable to make decisions for herself, and she stated she had a gut feeling that her mother didn’t have a long time and further chemo was not going to be beneficial. The oncologist told the daughter that further chemo could help the patient improve and live another 6-12 months. The daughter just stated over and over that more treatment didn’t seem to make sense to her. What made it difficult for the daughter was that the primary care doctor recommended more treatment, the oncologist recommended more treatment and her brother was optimistic about more treatment. I was sad inside and was screaming in my head “hurry, please take her home and keep her comfortable before she suffers more in our medical system!” The daughter kept the treatment going based on all the input, despite her gut feeling, and 2 days later the patient began to develop terminal delirium/agitation. She was quiet and peaceful when she was not being touched but as soon as she was touched or spoken to, she began to scream out. This was interpreted by the oncologist as strict pain and he changed the pain regimen I had recommended (the regimen keeping the patient comfortable to this point). There was also an order for further chemo if ok with the daughter!?! I saw the patient that morning and recognized her terminal delirium and noted this in the patients chart and stated that the patient was beginning to actively die. I also called the daughter and informed her. Luckily the daughter opted to refuse the chemo and 24 hours later the patient was made comfort care in the hospital and died 48 hours later. Of course, this isn’t the only time I’ve seen a patient dying and still receiving treatment, but every time it happens I’m still in disbelief. Oncology nurses have shared with me their internal conflict of hanging bags of chemo or sending patients to radiation when they are dying. It’s as if nurses, social workers, chaplains and all other ancillary staff (even the janitor…ok a little sarcasm) can tell when a patient is dying except for physicians. Is it our ultimate fear of failure? Is our minimal time at the bedside? Is part of this financial? Or is it a lack of education and exposure to dying patients. What do you think?