Difficult Conversations That Bring Comfort
By Karen Cifala
“I know we’re not supposed to talk about dying, but I’m dying because I can’t sleep!” was one phone call I made to my doctor after being thrown into early menopause during my after-cancer Tamoxifen treatment. I laugh about that feeling now, and I remember vividly how desperate I was to be done with the side effects of the drug, almost willing to go off of it and risk the consequences. Of course, not everyone will have the same side effects, and some will have no side effects from aftercare, but it did seem to me at that time difficult and uncomfortable to talk to my doctor about this.
A recent “All Things Considered” show on NPR interviewed Dr. Kendra Fleagle Gorlitsky, who teaches medicine at the University of Southern California. During the first part of the interview she talked about the anguish she felt performing CPR on an elderly terminally-ill patient and how hard it was for her to deal with that. Hearing this really had an impact on me. I am fortunate enough to be able to talk to my own mother about end-of-life concerns and treatments, but there are many who are not so fortunate. The interview pointed out that physicians are trained to treat and prolong life, but that too few of them are trained to talk about death with their patients. Knowing how doctors choose to die could change end-of-life discussions and is important for patients. The study also points out that 90 percent of physicians would forego aggressive treatment for themselves at the end of life and would choose a “no-code” or do-not-resuscitate order for themselves.
A recent study performed by Stanford University School of Medicine, with two sets of subjects:
Physicians who in 2013 completed a web-based advance-directive form and a 14-item advance directive attitude survey and,
Physicians from Arkansas who, in 1989, were asked the same 14 survey questions but did not complete an advance-directive form, and the study was published in the Journal of the American Medical Association.
The study set out to determine if the attitudes of physicians had changed towards advance directives since the Self-Determination Act was put into law in 1990. This law gave patients more say and more control over their end-of-life care decisions and required hospitals, nursing homes, home health agencies, hospice providers, and other health-care institutions to provide information about advance health-care directives upon the patient’s admission to the health-care facility. The purpose of the Act was to:
Prevent cruel over-treatment of elderly/disabled Medicare/Medicaid patients for a profit motive
Save money for Medicare and the private insurers in the form of the reduction of end-of-life costs
Give patients the choice to refuse life-extending saving treatments, upon certain terminal illnesses.
The results surprisingly showed that over 25 years, doctors’ attitudes changed very little, and that the aggressive treatment at the end of life continued even though an advance directive was in place. I found this interesting, bacause, as the study pointed out, the type of treatment patients received depended not on the patients’ care preference but more on the health-care system variables, institutional capacity, and individual doctors’ practice style. In quite a few cases studied, the patients’ voices were drowned out by the intensity surrounding them. Other results showed that doctors felt they are less likely to be sued for not providing the most aggressive care if a patient has an advance directive. Although the law requires hospitals to inform patients about advance directives, it doesn’t ensure that the directive be followed.
Ethnicity and gender also played a role in attitude towards end-of-life care. Those with more favorable attitudes towards advance directives were ER doctors, pediatricians, OBGYNs, rehabilitation, and physical medicine. Less favorable were radiologists, surgeons, orthopedists, and radiation oncologists. Caucasian and African-American doctors were more favorable than Latino physicians.
Strongly highlighted in this study was the disconnect between the type of care doctors want for themselves and what they actually do for their patients. It’s not that doctors want more money or because they are being insensitive to their patient’s desires; the study makes the point to say that it’s the biomedical model of medicine that is used by physicians in diagnosing disease which has been around since the mid-19th century. One factor in all of this is that they are not trained to talk or are not rewarded to talk; they are trained to do and are rewarded for doing, which is the default.
This begs the question: Does the system need to be changed? When the high-intensity treatment becomes more of a burden than the disease itself, it gets tricky. Medicare does not pay doctors for end-of-life planning meetings with their patients—although this could change; Medicare announced a proposal July 8 to compensate doctors for this care.
Section 1233 of the proposed American’s Affordable Health Care Act of 2009 would have authorized reimbursements for physician counseling regarding advance directives but it was not included in the Patient Protection and Affordable Care Act of 2010 because of controversy over what were characterized as “death panels.” Talking to the patients and their families or other team members definitely makes it easier for the physician to regulate treatment.
Dr. Babak Goldman, a palliative care specialist at Providence Saint Joseph’s Medical Center in Burbank, CA has this perspective: “I think it’s sometimes easier to give hope than to give reality,” and that having the tough talk may feel like he is letting a family down. Because he knows that he’d want reality for himself and for his family, he says, “That goes a long way.”
To hear an excerpt from this show go to www.wamu.org and search for How Doctors Die. You can read and hear the interview as well.
Karen Cifala is a senior real estate specialist and is a realtor for Remax Roots in Berryville, VA. You can contact her on her cell 303-817-9374 or email her at kcifala@gmail.com.
