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.

The Path of Aggressive, Futile Care

From Health Leader Media an article on what they call the elephant in the room, futile care, and what those of us watching the health care crisis unfold in the U.S. see as the number one issue, not only because of cost but because of violation of patient autonomy and well-being:

Once again, the folks at the Dartmouth Atlas Project have pointed to an elephant in the room. There the beast sits—the enormous amount of far too aggressive, painful, costly and often futile care, which too many doctors and hospitals provide during a Medicare patient's last 14 or 30 days of life.

The Dartmouth team's report, entitled Quality of End-of-Life Cancer Care for Medicare Beneficiaries: Regional and Hospital-Specific Analyses, shows the wide, and hard to explain, variation across the country in care provided in the last month or two weeks of a patients life. Its data tables look at cancer care practices within regional referral networks and specific hospitals for 235,821 end-stage cancer patients who died between 2003 and 2007.

The Atlas shows that this aggressive care was provided to patients whose type and stage of cancer predicted extremely poor prognosis, even for the short-term, and for whom such care is likely futile. Cancers like pancreatic, lung, and some types of leukemia and lymphoma were included in the analysis.

This is care that many patients would reject if they were told the truth: that there is very low probability their time spent in a hospital—often in an intensive care unit—will increase their number of days, the authors say.

In some cases, aggressive treatment with chemotherapy, endotracheal intubation, feeding tube placement and cardiopulmonary resuscitation, can hasten death, or at least severely weaken the patient and limit their ability to communicate with loved ones in the time when that's of greatest importance.

Is this what some might truly want? Some, perhaps. But for others, decidely not.

Read the entire post here.

The Doctor's Role in Patient Consent

More and more I encounter the meme that doctors should begin receiving spiritual sensitivity training, training that allows them to be more sensitive to a patient's moral and religious values. While the details of what this exactly means are vague, I'd rather my doctor tell me what is medically proven, not what he thinks his knowledge of my religious values dictates. From a recent post at Science + Religion:

... religion informs health values for many patient populations and, as such, deserves consideration within the clinical encounter. If a patient adheres to a religious worldview, then the physician should learn the skills to elicit these values (noting the patient to be the foremost interpreter of these values for themselves) and help the patient to make decisions consonant with their own value system.

We already have an environment where doctor-patient communication is in need of improvement. Asking doctors to tailor information for patients based on their assumptions of the patient's moral and religious values is far too near the paternalistic communication pattern well entrenched. Belief is never monolithic. While the Catholic church may oppose removal of some patients from artificial nutrition and hydration, it would be ethically wrong for a doctor to assume that a patient, because they define themselves as Catholic, would be as well. It seems to me that calls for greater religious sensitivity are misdirected and based on assumptions about moral and religious values, assumptions that are far too simplistic to capture and react to the plurality of many individual faith understandings.

The role of the doctor is not to alter disclosure of medically viable procedures but to inform of all possibilities and options. The patient, in consultation with his or her family, must then consent. And that is the true meaning of informed consent: doctors inform and advise; patients choose the course.

Finally, A Patients' Bill of Rights?

Today Obama announced what he's calling a patients' bill of rights. I've yet to see the "bill" but suspect that it regulates insurers' practices. From everything I'm reading, the details are still shaking out, but I doubt that it will become the bill of rights I've been advocating for: one that guarantees non-discriminatory health care delivery to all citizens regardless of age, race, sex, gender, faith or ability. I doubt it will include strong informed consent laws and mandatory referral laws that prevent providers from refusing services to patients. Perhaps the administration is waiting to tackle the "conscience clauses," most notably Bush's law instituted in December before he left office, and currently on pause since the election.

More news:

http://www.chron.com/disp/story.mpl/ap/top/all/7073988.html

http://content.usatoday.com/communities/theoval/post/2010/06/obama-turns-back-to-health-care/1

http://www.iowapolitics.com/index.iml?Article=200706

Idaho and Patients' Rights

The two great opening sentences of Maureen Dolan's CDAPress article on a new Idaho Law:

A new law goes into effect July 1 giving Idaho health care workers the right to refuse to provide end-of-life care they find morally objectionable.

Some fear the legislation places the conscience of a caregiver ahead of a dying person's rights.

I'm constantly amazed at how the media report down what they call the center line on end of life rights. Now, it's actually questionable whether a doctor making your health care decisions for you - despite your advanced directive, living will or other statements regarding informed consent for care - is a violation of your rights or not.

I think two factors feed into this odd kind of reporting; lack of knowledge of the dying process and reporters working to make end of life care stories contentious.

Of course, a doctor or nurse denying a patient legal, medically proven services is a violation of rights. But because religion's last bastion is the death bed, few are willing to call it what it is: a patronizingly old fashioned provider refusal law that pushes paternalistic ideas of faith and medicine on elder patients as a way to deny them autonomy. Just ask women. They've been up against such discriminatory laws for 4 decades. Let's see what baby boomers do with them.

Gary Coleman, Terri Schiavo and the Definition of Death.

Jill Stanek's apparently an immortal doctor.

Rationing or Rational Care.

Yesterday PBS posted an excerpt of the Miller Center event "Debating the Ethics of Rationing End of Life Care," a roundtable that included Dr. Arthur Caplan, Dr. Ira Byock, and some guy with a Texas accent going on about "faceless bean-counting bureaucrats." And a nurse, Marie Hiliard of the USCCB's Advisory Council and the National Catholic Bioethics Center.

Oh wait, that was Kenneth Connor from Center for a Just Society where it's all about Judeo-Christian values all the time, whether you're Jewish or Christian or not. Cause if you're not, God and your government think your health care should be! Connor is so radical, I have no idea why he was even included here; his participation only legitimizes the Just Society premise (Their God makes your health care decisions, not yours) and muddies the chance of a productive conversation. I guess the organizers were going for "fair and balanced" controversy.

In other words, moderator Susan Dentzer, editor in chief of Health Affairs, set up the premise that two doctors are pitted against two "pro-life" activists.

Byock and Caplan make strong cases. The other two have Luntz-like talking points. I can't help but feel that a great opportunity was missed here.

Watch the entire broadcast here.

Must Read: Stephen's Post at Not Dead Yet.

What is this term disability? And how does it's flippant, inaccurate or egregious use affect the rights of the disabled?

Read Stephen's post at Not Dead Yet. I'm delighted to find that he and I have much more in common than our escalated and un-nuanced online spats have yet determined.

Here are two good clips. He's writing about the call by the Terri Schindler Schiavo Foundation for disability groups to rise up in support of their boycott of The Family Guy show on Fox for its disrespectful and tasteless skit about Terri Schiavo (on the eve of the 5th anniversary of her death, March 31):

Predictably, the Schindler family reacted. I guess I don't blame them. But in a press release they included this:

The Foundation is calling on all disability rights organizations and pro-life organizations to join us in admonishing the producers and writers of The Family Guy.

To my knowledge, no disability rights organization, including NDY, has chosen to join them.

This hasn't gone unnoticed by June Maxam at North Country Gazette. In her article "Where Are They Now?" Maxam lists the national disability groups that were involved in fighting the removal of Terri Schiavo's feeding tube. She then suggests that the "silence" from the disability community on "Family Guy" is "condoning and advancing the prejudice, bigotry and hatred of the disabled."

The fact is, we're busy with real crises - and the "Family Guy" skit doesn't come close to being a "crisis." NDY is directly involved with coalitions opposing assisted suicide and euthanasia in 4 states, active in a major "futile care" case in one other, involved with a developing court challenge over guardianship limits in another state, providing technical assistance to disability advocates on state legislation, and monitoring the media for grossly inaccurate reporting on the Final Exit Network and individual homicides of people with disabilities. On top of that, we are working with other national disability groups on other disability rights issues through a national network of advocacy organizations that are run by people with disabilities. The majority of our work isn't that visible -we're seeking change, not headlines.

SNIP

Speaking of disability advocacy, tomorrow the Family Research Council is hosting a panel on Terri Schiavo's death. Bobby Schindler is on the program, which describes him as follows:

Robert Schindler, brother of Terri; full-time pro-life and disability rights advocate

I'm sure the Family Research Council loves the conflation of disability rights and "pro-life." That's one thing they have in common with prominent "lefty" bioethicists. No one in the actual disability rights community appreciates it, though. And we don't appreciate the description of Bobby Schindler as a disability rights advocate.

During the fight to prevent the removal of Terri Schiavo's feeding tube, the Schindlers showed little understanding of disability rights - or of the potential importance of the involvement of national disability rights organizations in the debate. Surrounded by their prominent prolife supporters, they almost never mentioned the disability rights organizations supporting the struggle to save her life. If they'd made a habit of mentioning that, it would have been harder for news organizations - Fox, MSNBC, CNN, the networks, etc. to pretend this was all just one more battle in the "culture wars." Unfortunately, framing the fight in terms of the culture wars suited "handlers" like Father Frank Pavone and Randall Terry just fine.

I wish I could say that I have any evidence that the Schindlers have any better understanding of the disability rights community and disability rights issues today than they did back then. I don't. They are not involved in any of the battles mentioned above - and play almost exclusively to Christian Conservative audiences.