End-of-Life Choice, Palliative Care and Counseling


What You Think You Know About CPR Is Probably Wrong

by Jennifer Black
The Bakersfield Californian
March 9, 2013

“I swear … to keep according to my ability and my judgment, the following Oath and agreement: … I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.” – An excerpt from the Hippocratic oath

As a medical student at USC and a physician-in-training at Kern Medical Center, I remember clearly the times I performed CPR. The experience was certainly not what I’d been led to expect during my CPR class. I recall feeling ribs splinter and breastbones break under my hands; I witnessed teeth crack and lips tear as breathing tubes were forced into victim’s throats. Chests were bruised, skin was burned, and lungs collapsed. I was horrified that I had to subject elderly, frail patients to such violence. Very few patients survived the initial effort; those who did were young, and were usually trauma victims, not elderly patients who’d had a stroke or heart attack. All CPR survivors had neurological damage, abdominal bleeding or ruptured spleens. Most of them died in the ICU — the majority within hours, but a few after several agonizing weeks. I did not know at the time that these are the expected complications and results of cardiopulmonary resuscitation.

Studies show that most people’s beliefs about CPR come from television. As a result, the public’s expectations of CPR survival are extremely high: most of us think at least 75 percent survive. In one study, 81 percent of hospitalized patients over age 70 believed their chances of surviving CPR and leaving the hospital to be more than 50 percent. Well, if these patients had been actors on a TV show, they’d have been right: CPR “works” 75 percent of the time on television!

In reality, success is much less frequent: If CPR were performed on every single patient in the average hospital, just 15 in 100 would survive to go home. Worse yet, if CPR is done out in the community (such as in Glenwood Gardens’ dining room) on an elderly patient with several medical problems, the likelihood of the patient surviving the initial effort is 0 percent to –maybe! — 2 percent. And what is the probability that the rare survivor will return to previous “baseline” function? Almost zero. More

Unwanted Medical Treatment at Life’s End Causes Needless Costly Suffering

February 20, 2013

Testimony of Mickey MacIntyre
Chief Program Officer, Compassion & Choices

Before the Institute of Medicine’s Committee on Transforming End-of-Life Care

Good afternoon. I am Mickey MacIntyre, Chief Program Officer for Compassion & Choices, a national nonprofit consumer organization dedicated to improving care and expanding choice at the end of life. I appreciate the opportunity to address the committee today.

Compassion & Choices’ central tenet is that Americans are free to choose how they live – so it follows that when the time comes, we are free to choose how we die. This private, personal decision belongs to all Americans – free from government interference. U.S. courts around the country, including the United States Supreme Court, have upheld this right.

Today, I want to address one specific problem: unwanted medical treatment. Patients have the right and the responsibility to guide their own health care throughout their lives, with their trusted health care professionals. Many Americans give thoughtful consideration to medical decisions that may need to be made if they are injured or debilitated, and they articulate their decisions in advance directives.

Congress passed the Patient Self-Determination Act (PSDA) in 1990 to reinforce an individual’s right to determine the course of his health care. This Act amended Medicare and Medicaid law to require providers to follow policies and establish procedures with regard to advance directives. The PSDA established that if these policies are not followed, the Secretary of Health and Human Services (HHS) may decide that the provider is ineligible for payment through Medicare and Medicaid.

President Obama reasserted the importance of respecting patients’ rights in a 2010 memorandum to HHS asking the agency to, “ensure that all hospitals participating in Medicare and Medicaid are in full compliance with [these regulations]…[t]hat all patients’ advance directives…are respected, and that patients’ representatives otherwise have the right to make informed decisions regarding patients’ care.”

Nevertheless, many patients’ decisions are overridden or ignored in the weeks and months before their deaths. This happens for a variety of reasons and can lead to invasive and fruitless testing, needless suffering, unrelenting pain and a prolonging of the period before death. Patients are tethered to monitors and machines despite their determination to reject unwanted treatment and desire to die at home in the embrace of loved ones.

A new study published in JAMA found that between 2000 and 2009, treatment in intensive care units in the last month of life increased from 24% to 29%. The accompanying editorial concluded, “The focus appears to be on providing curative care in the acute hospital regardless of likelihood of benefit or preferences of patients. If programs aimed at reducing unnecessary care are to be successful, patients’ goals of care must be elicited and treatment options such as palliative and hospice care offered earlier in the process than is the current norm.” Compassion & Choices could not agree more.

Policy makers can and should provide both the carrot and the stick to ensure that patients’ wishes are honored: financial incentives for honoring advance directives and financial DISincentives for disregarding patients’ expressed wishes.

The Centers for Medicare and Medicaid Services (CMS) should deny payment to providers where there is clear evidence that specific treatments were unwanted — similar to policies where unnecessary treatment is provided.
The Justice Department is investigating and taking legal action against hospitals and doctors groups when instances of unnecessary treatment are exposed. The same due diligence should be trained on unwanted medical treatment. It is always unnecessary and should be considered a never event.

The explosion of the aging population coupled with the nation’s financial and moral commitment to providing health care to an ever-increasing number of Americans reveals that the scourge of unwanted treatment should be an urgent priority for this committee. Among the next steps Compassion & Choices recommends are:

Initiate and improve the quality of conversations among health care professionals, patients and families about end-of-life decisions, including:
1. reimbursing medical providers for participation in advanced care planning with patients and their families well in advance of illness or before facing end of life;
2. providing financial incentives and training to encourage medical providers to offer all the information and counseling necessary for decision making when securing informed consent;
3. ensuring that the full range of medical care and treatment decisions, including curative care, palliative care and medical assistance in dying, are freely available to patients without institutional or reimbursement barriers.

Further CMS should:
1. exclude from covered services and reimbursement any treatment that contravenes an adult patient’s informed health care decision;
2. track complaints where patient wishes were ignored and ensure that the survey and certification processes for providers require attention to patient’s advance directives;
3. revise billing forms to have providers indicate that care was rendered in conformance with patient’s advance directive and informed consent.

I thank you for the opportunity to testify today, and I will be happy to answer questions or provide written follow-up information.
Thank you.

Submit Your Story of Unwanted Treatment

Have you had an experience involving unwanted or unnecessary medical treatment. If so, please take a moment and tell us your story in an effort to help ensure that all patients have the right to guide their own health care decisions throughout their lives. Please follow this link to our stories submission page.


Doctors Die Differently Than Their Patients

by Erica B. Cohen
January 16, 2013

“Do everything you can, doctor. Do anything it takes to save him.”

These are the unfortunate pleas that too many patients and their families make when dealing with terminal illness and end-of-life decisions. While the use of advance directives helps alleviate this problem by informing doctors in advance about a patient’s end-of-life wishes, there is still an underlying belief that medicine can cure everyone, even those people with the most terrible prognoses.

But doctors die differently than their patients. They often don’t want the fancy treatment, the life-prolonging chemotherapy, or the 2-hour-long cardiac resuscitation (CPR). They know the consequences, and they just say no.

In 2011, physician Ken Murray wrote an anecdotal essay on physicians’ end-of-life decisions called “How Doctors Die.” In 2012, Dr. Murray followed up with a second essay, “Doctors Really Do Die Differently,” which provided statistical evidence of the assertions he made in his first essay.

According to Dr. Murray, one physician friend was uninterested in taking advantage of his own invention to triple the survival rate of pancreatic cancer patients – from 5% to 15% – albeit with a poor quality of life. Instead, the physician left the hospital after his initial diagnosis, enjoyed time with his loved ones, and died a few months later. More

A Precious Gift for Those You Love

by Terrell B. Vanaken
Daily Republic
January 10, 2013

During the holiday season, we often think of giving in terms of tangible, often costly items.

There is, however, an extremely valuable gift that we can offer at any time of year, and which costs virtually nothing. It’s something all of us can offer to our family and loved ones. It’s the knowledge and understanding of what we would want done at the time of a health emergency, when we cannot make decisions for ourselves.

An advance directive, when properly completed, is a legal document that stipulates who should make decisions at a time when an individual no longer can. It also allows you to specify your wishes for medical treatment and just how aggressive medical personnel should be with your care.

At a minimum, an advance directive should name the primary person you trust most to make major health care decisions about your welfare. This person is called your “agent” for health care decisions. You may also name an alternate in case your first choice is unavailable for any reason.

An advance directive can be completed by any adult and is made legal by the signature of a notary public or the signatures of two qualified witnesses. Of course, as we grow older, a directive becomes more and more important, since the incidence of health care emergencies increases as we age.

Many critically ill patients and families who I have met in the hospital have never sat down and actually talked about their wishes before such a tragedy occurs. We all tend to avoid these discussions, but after a stroke, a heart attack or life-threatening event, your loved one may not be able to talk at all or understand these issues. More

Fewer Cancer Patients Want CPR After Video Demo

by Andrew M. Seaman
Reuters Health
December 12, 2012

Dying cancer patients are less likely to want aggressive end-of-life care if they watch a short video about cardiopulmonary resuscitation (CPR) than if they simply hear about it, according to a new study.

“These are huge differences. You will die very differently if you watch the video than if you don’t,” said Dr. Angelo Volandes, the study’s lead author from Boston’s Massachusetts General Hospital.

All 150 cancer patients in the randomized study were thought to have less than a year to live. Of the 80 who were simply told about CPR, 48% said they wanted it, compared to 20% of the 70 patients who also watched a video showing compressions on a dummy and insertion of the endotracheal tube.

“It’s one of the most important issues in American medicine today. People are getting medical interventions that, if they had more knowledge, they would simply not want,” said Dr. Volandes. More