A common opinion is that health care spending is higher then it should be in the last two years/year/6 months of life. Taking this position is clearly a sign of superior skills in prognostication or it demonstrates the ability to use a 'retrospectoscope.' Reading the case presented of a gentleman with metastatic non-small cell lung cancer as he progresses through three lines of chemotherapy will sound familiar to many palliativists. But it is not necessarily obvious when he become 'terminal.' Thus the dilemma of when to shift from curative to palliative care as a primary goal.
The two interviewed physicians in the case do well to show respect for the other, but you still get a sense of the tension that can exist between oncologists and palliative doctors. After being consulted the palliative care doctor called the oncologist and clarified the issues at hand, but they did not explicitly share prognosis as this quote from the palliative care doctor shows:
"They were shocked about the prognosis that I offered . . . of days to weeks. They were still expecting more chemotherapy. Here I was, walking into the room and basically saying, “Okay, folks, it’s time for hospice.”
Curiously as much as prognosis plays a role in these decisions it is somewhat glossed over in the article. This quote from the authors somewhat baffled me:
"When the prognosis is predictable, as with Mr L, why do most oncologists not directly address it?"The answer to the question is that the prognosis is not always so predictable. We need more prospective studies to demonstrate prognostic skill that so greatly influences decision making. The article quotes many studies showing use of new chemotherapy regimens within a few weeks of someone dying. What is not always clear is was it appropriate to be on the chemotherapy. It is easy to imagine the patient with an ECOG of 4 or PPS of 30 as one of those patients who died within a few weeks after the new chemotherapy started. But what if their ECOG was 2 and the PPS 60 or 70% and they still died. Would you consider that use of palliative chemotherapy appropriate?
These prospective studies of clinician and patient prognostication and the impact on clinical decision making is what medicine needs to better determine if we are making the 'right' decisions at the right time. Looking retrospectively only generally informs us of a existing challenge. It does not provide the answer.
The article is a good read with some great references and an excellent one for the teaching file for oncology and palliative medicine. The focus is not really on prognosis as I have made it here, and what it does cover the authors do an exemplary job. The tables are also particularly notable:
- What Patients Know About Their Advanced Cancer and Its Prognosis
- Palliative Chemotherapy for Metastatic Disease for 4 Common Solid Tumors
- Helpful Questions to Consider Asking About Palliative Chemotherapy
- Things to Do or Say (and Not to Do or Say) About Chemotherapy for Advanced Cancer
- Studies of Concurrent Palliative Care With Oncology Care
The article was highlighted in USA Today this week, and here are a few of the interesting comments from the website article:
Sorry for the long comment, but I have seen people refuse treatment and die because they were afraid of chemo or something as silly as losing their hair. Chemo is not that bad and has the possibility of extending a life significantly.
As a physician, we don't have crystal balls. To say, you have 5 weeks or 5 months is extremely difficult. We can say based on a certain type of cancer or terminal disease, MOST PEOPLE with this disease typically survive "X" amount of time....but to narrow it down to the individual patient is not feasible. There are many variables.
Palliative care is the wave of the future. These highly trained doctors and nurses do outstanding work with patients and the medical team assigned to those patients. Many times, my sister (the nurse practioner) has had to counsel doctors, interns and other nurses on how to talk to the patient and what to say. She herself has worked with scores of terminally ill patients and their families walking them through the journey, talking directly but gently, and helping them to see the full picture. Hopefully as this unique practice grows, most, if not all, hospitals will have palliative units to help everyone with these difficult issues.
5 comments:
http://www.msnbc.msn.com/id/25176326#storyContinued
Just read this article online:
Most cancer doctors avoid saying it's the end
New research backs straight talk, casts doubt on 'keeping hope alive'
It supports all that we, who work in Hospice & Palliative Care, have known for a while.
Judy
Thanks for the link Judy!
It's an interesting question you raise. My gut tells me that most people who receive active anticancer treatment in the short period of time before death (last month or two, say) are patients that one could have objectively (based in a preponderance of scientific evidence) predicted were very likely to die in that time frame. There are a few outliers for sure but I doubt they make a big difference in the figures. I could be wrong about this - and I always teach my fellows in our journal club that in studying what happened to dead people before they died you are evaluating a distinctly different patient population than actually studying 'dying' patients - however I strongly believe that the issue here is not physicians being inept in formulating a prognosis but being unable to communicate that to dying patients, and creating treatment plans accordingly.
Now, to contradict myself a little and what I just said, I also get a little creeped out when people bemoan the expense/resources spent on dying patients in the US. Dying people are sick, real damn sick, and frankly should have a lot of resources expended on them. I have no doubts that a lot/most of the resources are ill-spent, but implying that death should be cheap (whcih some interpret as that dying patients are not worth the expense) is not, exactly, the message I think we should be giving as a professional community. My motto of the week is
Less CVVH, More in-home around the clock care!!
I hope that makes sense.
Palliative care is a very good solution for those who are actually at a terminal stage, however, some doctors are too arrogant to run tests to confirm such suspicions, or refuse to look at such results.
It is imperrative that there be proof to demonstrate to family members that a loved one truly is ready for palliative care, and not just drugged as was my case.
Are there others who have encountered something similar? I am trying to compile cases for an article on rushing to an end prematurely.
Survivorss
Anon/Survivorss,
Issues of prognosis and appropriate diagnosis are important to the hospice & palliative care community. Many decisions to change a focus from aggressive curative care to comfort as the primary goal should involve understanding the current medical situation, and weighing the certainty of the diagnosis and prognosis, and then making decisions based on the patients tolerance of risk for benefit.
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