Yesterday the New York Times asked me to participate in a "Room for Debate" forum on Medicare reform. Here’s the topic: "The Obama administration will soon track spending on millions of individual beneficiaries, reward hospitals that hold down costs and penalize those whose patients prove most expensive. What’s the one thing Medicare should stop paying for? Please be specific."
See the full Forum, and reader’s comments here. The New York Times also ran a news story that questioned Medicare’s plans that you can access here.
Below, my contribution to “Room for Debate.”
Note: The Times headlined my piece “Don’t Let Oncologists Make All of the Decisions” which might suggest that I’m “blaming oncologists.” My original headline was the one I use below. My argument is that the burden is on the hospital: it’s up to the hospital to ensure that patients know that palliative care exists, and that a palliative care consult doesn’t mean that they are dying or that they should give up treatment. Palliative care consults are appropriate for any seriously ill patient who wants to know more about his odds and the risks and benefits of various procedures.
Finally, the hospital should not let another physician “block” a palliative care consult. (At some hospitals patients can see the palliative care specialist only if the patient’s oncologist or surgeon agrees to let a palliative care team talk to “his” patient.) Patients have a right to a consult. Oncologists and other physicians should view palliative care specialists as collaborators, not adversaries.
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Cancer Care: Give Patients the Information They Need to Make Informed Decisions
Many cancer patients spend their last days undergoing treatments that both oncologists and hospitals know will give them a few extra weeks, at best a couple of months. The medical evidence is clear. Yet 20 percent of patients with solid tumors receive chemotherapy during their final two weeks of life.
Hospitals should ensure that patients have access to palliative care specialists who are trained to talk about odds, risks, benefits and a patient's desires.
Oncologists just aren’t trained to break the brutal fact that the “chances of cure [are] always near zero for patients with metastatic solid tumors,” as two candid oncologists observe in the most recent issue of the NEJM. As a result, they say, “most cancer patients have “unrealistically optimistic expectations regarding their prognosis and response to therapy.” In their essay, Virginia Commonwealth University’s Thomas Smith and Bruce Hillner also report on one recent study which shows that lung cancer patients expected to live more than two years, even though the average length of survival is about eight months.
Without knowledge, patients cannot make informed choices about continuing chemo. Hospitals have a role to play here: they should ensure that patients have access to palliative care specialists who are trained to talk about odds, risks and benefits, and, most important, draw a patient out to express her desires.
Too many hospitals let oncologists decide whether a palliative care team can see someone he views as “my patient.” Why? Not long ago, a Manhattan palliative care specialist told me that hospitals are afraid of their “rainmakers” (physicians who bring in well-insured lucrative cases). So the oncologist is allowed to block the consult, while ordering more chemo. Over half the profits in oncology flow from drug sales.
Meanwhile, the cost of cancer care spirals from over $104 billion in 2006 to a projected $173 billion in 2020. U.S sales of anticancer drugs are now second only to heart disease medications and most new molecules are priced at $5,000 per month or more.
Still, isn’t it worth the price—and the suffering—to buy a few weeks or maybe, months of precious life? Ultimately, the patient herself should answer that question, based on her hopes, fears and beliefs. To do so, she needs the facts.
Why take away her hope? Because most cancer patients want to die in a hospice, or at home, with hospice care. If they don’t make plans, they are likely to spend their last days in a hospital or an I.C.U. Interestingly, recent research suggests that patients may well live longer if they leave the hospital and receive hospice care.
In the original piece that I sent to the Times, I added:
Pain kills. Depression hastens death. Empty beds cost hospitals money. Full ICU’s bring in revenues. Under the Affordable Care Act, Medicare will strive to eliminate perverse financial incentives while rewarding hospitals that give each patient the care that she needs and wants—“no more and no less.”
(I suggested that the Times cut the final paragraph so that the piece would fit the allotted space, but it explains what Medicare is trying to do: realign financial incentives so that patients receive better, more affordable care.)
The patient deserves honest answers to these life and death questions so she or her family can make the best decisions for her. Forming the questions are half the battle. I found this helpful: http://tinyurl.com/4odprtz
People are so terrified of cancer and of death. We demonize it. We fear it. We have not learned to cope with it.
It’s hard to counter the argument, “But if there’s the slightest chance, shouldn’t I take it?” The rational mind, trained in reason knows the answer is sometimes, “No. The costs to you personally are not worth what you will put yourself through.”
Most of us do not use reason for problem solving. We use emotion, and emotion is unreliable and prone to accepting false assumptions and pseudo-science. Because we rely on emotion to solve problems, the rational person is easy to demonize as cold or uncaring.
It puts physicians in a bad position. They are caught between the patient or families emotion and their knowledge of what is likely to happen . . . something sometimes complicated by ego and a refusal to accept “defeat” (essentially retreating into different emotions of their own).
The consequence of this drama dance is patients suffer needlessly and don’t die the deaths they would prefer because they are trapped into “fighting” before they really think the consequences of that fight through.
All this emotion makes it easy to justify the perverse incentives on the money end of the business. Addressing those emotional issues is key to addressing the financial ones . . . is the wall oncologists use as a shield to justify they way are handling patient care.
As long as palliative care is an option patients can use alongside aggressive attempts at treatment, I’m all for it. To demand that patients have to choose aggressive treatment *or* palliative care is to force them to draw an artificially bright line between “fighting to live” and “acceptance of immanent death.” Allowing patients to blend their treatments from both approaches, studies have shown, tends to result in patients and their families choosing less of the invasive, painful, useless and expensive options (such as ER visits and ICU stays) that are so often invoked in the final days and weeks of life.
It’s psychology. When forced to draw an artificially bright line between fighting and accepting, most people in desperate circumstances will err on the side of fighting.
We need health policies that acknowledge the psychological factors involved in coming to accept the immanence of death. We need health policies for the terminally ill that are more humane.
Nice article, thanks for the information.
Good article.
Nothing trumps getting all the facts and carefully considering probabilities. Reality should be faced first, as hard as it is.
Hospice is most often used too late (median stay is about 27 days, but is available for 6-month periods, per Medicare requiring an estimated prognosis of no longer; it can, however, be extended with proper documentation) and good palliation of suffering, even while being treated, is often subpar. Implementation of palliation is not necessarily equivalent to hospice, but simply good medical practice. Several hospitals are now employing palliative specialist teams.
Most chemoRx for metastatic CA (stage 4 or equivalent) buys little time.
Recently, Dendreon’s Provenge vaccine was approved for treatment of prostate CA. It prolongs life by a median of about 4 months and costs over $60,000. It seems that Medicare is obliged to add it to its formulary, and they do not negotiate directly with the company. Many more biologics are coming down the chute, and they will be priced by ‘free market forces’, not capitated by government, as occurs in every other country.
The bulk of medical spend is near the end of life. Careful examination of the details will reveal that a lot of it is wasted via poor decisions, unrealistic expectations and ridiculous prices.
Susan
Thanks for your comment.
I haven’t been a cancer patient, but I can well imagine that forming the question is half the battle.
This is why palliative care specialists are so important.
They are trained to help patients form the questions they want to ask, by asking them question that will make patients feel more comfortable asking their own questions.
For instance the doctor might ask: “In a worst-case scenario, what is your greatest fear?”
The patient might respond: “Pain,” or “losing control” or “my wife being terribly upset.”
Neither doctor or patient has mentioned the word “death.”
That possibility may well come up in a later convesation.
But the doctor’s question indicates that it’s okay to talk bout the fact that the current treatment may not work out as hoped– and to express fears.
Brenda, Ruth,Panacea
Brenda,
Thank you for your comment.
I agree–when you ask a patient to draw a bright line between continuing to receive treatment and “giving up” (by going into hospice care and ceasing treatment) , his fear of death is iikely to drive the decision.
ButAetna has a done a study to see what happens if the insurer pays for Hopice, AND continues to pay for potentially live-extending or life-saving treatments.
Aetna discovered that, once in hospice, some patients were no longer as panickeed. As a result, some lived longer.
Many decided to drop painful treatments– on their own schedule. No one told them that they had to drop the treatment.
Bottom-line, patient and family satisfaction was higher, some patients lived longer, and Aetna wound up paying less for many patients. A win, win, win.
Aetna now pays for continued medical treatments while also paying for hopsice.
I wish that Medicare would do this.
Ruth–
Yes, hospice is often used far too late.
Getting into hospice three days before you die beats dying alone in an ICU (for understandable reasons, visitng hours are limited in an ICU).
But three days in hospice usally doesn’t give the patient or family the time they need to deal with what is happening.
If someone had been candid with the patient about the likely time she has left (based on the average patient who she (or her family) might well have arranged for hopsice care (in a hospice or at home) much sooner.
Eventually Medicare will have to begin to negotiate with drug-makers over prices–and I believe it will.
The FDA also with have to begin asking about benfeit to the patient. Right now, drugs are approved if they are better than a placebo (i.e. better than nothing.)
Manufactures should be askd to prove that the drug is better than drugs already on the market — at least for patients who fit a certain profile. Then Medicare could agree to pay for the drug for patients in that group–not for people who would just do just as well on an older drug.
Panacea–
You are right that, in the face of death, doctors, like patients, often are driven by their emotions.
They feel that they have “failed” the patient. It can benvery hard for some of them to continue to see the patient.
And the patient feels abandoned.
This is why palliative care specialists nurses and psychologists,, who have been trained to deal wtih death and dying, are so essential.