Saturday, March 5, 2011

Sharing Decisions with the Doctor

When faced with a medical crisis, patients often look to doctors to make care decisions for them. When your body rebels or broad-sides you, it's a relief to have someone with the pertinent knowledge to tell you what to do. But while the days of a woman going into the hospital for a lumpectomy and coming out of anesthesia with a full mastectomy are over, thanks in part to the patient autonomy movement of the 70s and 80s, doctors still play the largest role in determining a patient's treatment path. As the doctor-patient relationship becomes more institutionalized doctors no longer have the intimate relations with their patients that they once did - if they ever did! - that allow them to account for a patient's lifestyle and care choices. From a new op-ed at The Lancet:

The Dartmouth Atlas Project found that whether patients underwent elective surgery largely depended on where they lived and the clinicians which they saw. For example, patients with heart disease in Elyria, Ohio, were ten times more likely to have a procedure such as angioplasty or stents than were those in Honolulu. And women older than 65 years living in Victoria, Texas, were seven times more likely to undergo mastectomy for early-stage breast cancer than were women in Muncie, Indiana. Such wide variations underscore the need for improving shared decision making, say the authors.
The importance of shared decision making is clear, especially when considering a disease such as early-stage breast cancer, in which mastectomy or lumpectomy and radiotherapy have similar survival outcomes but are very different treatments for a patient to undergo. It is crucial that doctors inform patients of the pros and cons of each and invite them to participate in the management choice.
The op-ed also notes that the "Dartmouth-Hitchcock Medical Center in New Hampshire already has the nation's first dedicated Center for Shared Decision Making." Considering the paternal history of medicine, "already" seems decidedly inaccurate.

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Attempting to Make Another Terri Schiavo

In his weekly email Michael Cook at BioEdge asks if a 58 year old grandmother, a legal immigrant from Rwanda ineligable for Medicaid, may be the next Terri Schiavo. Rachel Nyirahabiyambere is now "comatose" after a stroke; her court-appointed guardian has chosen to move her from the hospital where she was initially receiving treatment to a home nearby. Her feeding tube has been removed. The hospital was unable to come to an agreement with the woman's children about her path of care. Cook writes:

It’s always best to wait for both sides of a story to emerge. But a New York Times report makes Georgetown University Medical Center and the US health system look quite heartless. After the children of a brain-damaged Rwandan migrant without health insurance could not pay for hospitalisation or nursing care, her feeding tubes were removed and she is slowly starving to death in a Maryland nursing home.

There will certainly be further developments in this breaking news. Not only is it a case study in medical ethics, but it will also give ammunition to opponents of President Obama’s healthcare program. They will surely use it as an example of what “death panels” could do. Stay tuned.

I don't hold out Cook's hope, primarily for these reasons:

- Neither Cook nor the New York Times parse the meaning of PVS, a diagnosis that has been challenged by everyone from the Catholic Church to the Terri Schindler Schiavo Foundation to Belgian scientists to pro-life organizations hoping to shape end-of-life practices. PVS typically means brain dead. While the diagnosis allows room for those who still have an semi-active brain stem (which may result in some physical function), it means there is no chance for recovery and yet, thanks to artificial nutrition and hydration (ANH), a surgically inserted feeding tube, the patient can live for many years, or decades, even if weened from a respirator and defibrillator. Hoping for a recovery from PVS is like hoping for Jesus to perform a miracle. There are statistically no cases of a patient "waking" from PVS.

- The public has shown a more sophisticated understanding of what "starving to death" means. The case of Terri Schiavo proved that the public was willing to think more critically about the removal of ANH. There is no proof that unconscious or comatose patients experience any pain from ANH removal. In fact, stopping eating is a natural aspect of the dying process. I don't mean to insinuate that Ms. Nyirahabiyambere couldn't "live" for another many years were she to receive constant care and food and hydration via a tube. But that her dying process was interrupted by artificial means, rendering her in a state that requires constant medical intervention, is not lost on the public.

- Ms Nyirahabiyambere is a legal resident of the U.S. Hopes that her race, nationality or lack of insurance will do anything other than bolster calls for universal health care is misjudging the constituents who usually get behind "pro-life" crusades

- Terri Schiavo, and before her, Karen Ann Quinlan and Nancy Cruzan, became high-profile cases because they were all young women whose beauty, youth and potential - particularly when displayed in pre-incident photos, say, from high school year books - could engage a broad audience. The crass media beast is less servicing of grandmothers, black at that. Despite the fact that Ms. Nyirahabiyambere comes from Rwanda, a focus of media attention and U.S. aid since the genocide in 1994 (after which the patient and her family came to the U.S.), that, dare I say, paternalistic humanitarian focus has waned.

- There are thousands of PVS patients in the U.S. at any given time. Surely, those wishing to focus on PVS and removal from ANH can find a better case to pull heart strings. Again, I say this not to denigrate this patient but to recognize the makings of a media blitze like Schiavo's.

- It's not 2005. Discussion of end of life care, patients' rights and how we die are more broadly accessible. I don't underestimate the public's willingness to sentimentalize the dying process but I also think that the political climate is such that, as a culture, we are better versed in what medicine can and can't do. As Andrea Sloan, the court-appointed guardian for Ms. Nyirahabiyambere is quoted in the New York Times:

“Hospitals cannot afford to allow families the time to work through their grieving process by allowing the relatives to remain hospitalized until the family reaches the acceptance stage, if that ever happens,” Ms. Sloan said in an e-mail. “Generically speaking, what gives any one family or person the right to control so many scarce health care resources in a situation where the prognosis is poor, and to the detriment of others who may actually benefit from them?”

It's unfortunate that Ms. Sloan frames the conversation around money, what the medical industry will or won't pay for. Rather, the issue of Ms. Nyirahabiyambere's right to die without invasive medical procedures is ethically more paramount; the hopes and desires of her family, as with all of us attending a dying loved one, are not enough to change a patient's outcome, to keep them with us any longer.

For more, read Thaddeus Pope a Medical Futility Blog.

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