Physicians must offer informed consent before every planned procedure. We accept this as an ethical absolute: if we neglect informed consent then we violate a basic value of our profession. Why? Because as a profession, and as a society, we believe patients should know the benefits, risks, and alternatives so they can make informed decisions.

In American medicine we violate this central principle hundreds of times, every day, when we provide heroic care to elderly people without obtaining informed consent in advance. We rationalize it as “emergency intervention” even though we should expect death, and discuss heroic end-of-life care  in advance. Most elderly Americans have not obtained the information they need to make meaningful decisions about their medical care in the face of a serious illness. The tragic result: many elderly patients receive futile and painful care that they would decline if given the opportunity in advance. To the human catastrophe of prolonged dying, we add the tremendous financial cost, and we have a social problem of epic proportions. And sadly, no one seems to have the courage or will to face this tsunami of suffering and waste.

Public misinformation about these matters is impossible to exaggerate. Because Americans get their medical information through television, they are grossly misinformed about end-of-life care. For example, a medical journal showed that 83% of people over age 70 believed they had at least a 50% chance of surviving resuscitation in the hospital(1). The truth is 5-10% (2,3) with a 40% chance of a significant stroke (4). So the public has a complete misunderstanding of the benefits of a common procedure that many will face, and they are not given the facts to make an informed decision. I believe many people would decline a heroic measure, like CPR, if they had the facts and were granted the opportunity to decide.

People with dementia are often mistreated and receive care most would decline. In the face of advanced dementia (lacking short-term memory, incontinent, needing help feeding), most Americans would prefer comfort care without heroic measures, and particularly without further hospitalizations. Unfortunately, only 7.1% of patients with severe dementia, who live in a nursing home, have orders to avoid hospitalization (5). Therefore, 93% are transported to hospitals for life-prolonging care in the face of advanced dementia. Here’s the tragedy: patients did not get the opportunity to decline the care in advance and most families don’t know they have the choice of less care. Our system is in shambles: we provide heroic, expensive care to people who would decline it. This happens hundreds, if not thousands of times every day.

People need to know the facts before they face a serious illness. These matters must become a matter of public discourse and common understanding. Individuals and policy makers could make a substantial difference through measures such as:
• The most obvious place to begin is with those who have advanced dementia. They suffer needlessly with repeated hospitalizations that only prolong their suffering. Family members that serve as decision makers need to know the options for their loved ones, including comfort care and allowing a natural death without further hospitalization. Medicare should require education of all decision makers in this situation.
• Individuals must take responsibility to plan in advance and become informed about end-of-life issues. Every person needs advance directives including a living will, health care power of attorney, and a declaration of code status if applicable (discuss with physician).
• Families need to discuss these matters. Many elderly patients try to address these issues with their children who shut them down with responses like, “You’re not going to die. We don’t need to talk about that.” Children who avoid this conversation will come to regret it when a serious illness precludes a meaningful dialogue about their parent’s wishes.
• Governmental agencies have made progress in raising awareness on critical and common medical issues such as hypertension, diabetes, and cholesterol abnormalities. A similar commitment to education could make a profound impact on closing the gap between patients’ misunderstandings about end-of-life care and the facts.
• Medicare should adequately reimburse physicians for educational conversations about patient preferences. Today, primary care physicians are under paid for the difficult and time-consuming work of educating patients and family members regarding these issues. The result is obvious: most people have not discussed these matters with their physician. As our population ages and the ratio of patients to primary care physicians continues to rise, this problem will swell.
• We should form teams of health care professionals (physicians, nurses, psychologists, chaplains) to inform every person admitted to a hospital or nursing home about end-of-life issues. This team could provide the facts needed to make informed decisions and help patients complete needed documents. The teams could be funded by Medicare and Medicaid to prevent conflict of interest in medical institutions.

We must start now to stem the tide of suffering and wasteful spending. Close to 30% of Medicare expenditures occur in the last year of life, with about half that in the last two months. In 2009, that represents $70 billion in the last two months of life. The heartbreaker: most of that money is spent on care that patients would decline if we would give them the opportunity to make an informed decision.
Jeff Gordon, MD

A Death Prolonged: A slim novel by Dr. Gordon that engages these crucial end-of-life issues

References:
1. Diem, Susan J. “Cardiopulmonary Resuscitation on Television — Miracles and Misinformation.” New Engl J Med, June 13, 1996; 334(24):1578-1582.
2. Brindley, Peter. “Predictors of Survival Following In-Hospital Adult Cardiopulmonary Resuscitation,” Can Med Ass J. August 20, 2002,Vol. 4, p. 167.
3. Peberdy, Maria Ann. “Survival from In-Hospital Cardiac Arrest During Nights and Weekends,” JAMA. 2008, Vol. 299, No. 7, pp.785-792.
4. Danciu, S. “A Predictive Model For Survival After In-Hospital Cardiopulmonary Arrest,” Resuscitation. 2004, Vol. 62, No. 1, pp. 35-42.
5. Mitchell, Susan L. “Decisions to Forgo Hospitalization in Advanced Dementia: A Nationwide Study.” JAGS, 2007; 55:432-438.

Last week while serving at a free clinic in Columbus, I confronted a typical, but sad situation. A 66-year-old lady with hypertension could not obtain her medications and could not visit her physician because her assistance check was late; she was poor and broke. As a Medicare patient, she could not pay her deductible to her doctor and did not have prescription coverage. Her physician’s office (at the local state university) suggested she seek help at a free clinic, and thankfully she did.
She had a stroke a year ago: probably hypertension related. She rationed her medications by checking her blood pressure daily and taking a pill when her blood pressure “got too high” (over 180 systolic). She told me she was taking a pill every 2-4 days.
What a broken system! This otherwise healthy woman faces another stroke, simply because she can’t get medical attention and a script for a generic med that costs only $4.00 a month. Treating inevitable stroke will cost tens of thousands!
Physicians need to be more attentive to prescribe generic meds. Her physician treated her with a calcium antagonist, amlodipine, which is not on local generic ($4.00/month) formularies, and therefore she couldn’t afford it.
Physicians can help by prescribing 4.00 generics. A good example is the anti-hypertensive category, ACE-inhibitors. There are many drugs in this class that we can, and should, replace with the generic, lisinopril. The $4.00 list even includes a combination of lisinopril and hydrochlorothiazide. That makes two drugs for 4 bucks a month.
We can save millions of dollars, and many strokes, with simple changes like this.

I applaud the House for including payment for these crucial discussions in their bill. The provision simply recognizes that patients need more information to make good decisions and they need to receive that from their doctor.
The current system does not adequately reimburse physicians for this service, so hopefully the payment will be fair and encourage doctors to take the time and energy needed to have these difficult conversations. Doing so will save patients and their families much misery as the end approaches.
Take time to write or call your legislators to endorse this measure.

Just last week I heard another alarming, but typical story. My friend read A Death Prolonged and spoke with her mother about end-of-life options. Her mother wants to die naturally and does not want CPR. Therefore, she needs a Do Not Resuscitate order, written by a physician on the proper form.
She went to the physician’s office with her mother, but the doctor did not have the form. My friend printed the form from the Ohio Department of Health web site and returned to the physician’s office and had the form signed.
A week or so later, her mother left Ohio to stay with her son in Florida. Ohio laws and DNR forms don’t apply in Florida, so the process began again. At least, her mother knows her options. Most people don’t know their options and need information.
Read on to explore end-of-life issues and allow yourself and your loved ones to make informed and intelligent decisions.  You can learn more through a recent PBS story by Betty Rollin that features Dr. Gordon.

Read about the kind of end-of-life disasters we’re trying to prevent, thanks to a post by Nancy Mily, RN.

PBS’s Religion and Ethics NewsWeekly filmed a story recently at Grant Medical Center. They followed Dr. Gordon on rounds and filmed two end-of-life conversations with patients who had not previously discussed the issues.  They also spoke with an RN who is in hospice care and the ICU director at Grant.  Betty Rollin reported for PBS and the story will be on their web site starting October 9th around 6 pm. You can find where it will show in your area on their site.