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

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“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.

While treating patients hooked up to dozens of tubes, machines, and medications, countless physician friends have said to Dr. Murray in varying ways, “Promise me if you find me like this that you’ll kill me.’ Some even wear jewelry marked “no code” to instruct providers to not perform CPR if the need arises

Of course, not all physicians follow the path Dr. Murray suggests. But in his second article, he provides statistical evidence of his experiences.

The Johns Hopkins Precursors Study was conducted based on the medical histories and decisions of a voluntary group of older physicians who graduated from the Johns Hopkins School of Medicine classes of 1948 through 1964. According to the study, 65% of the surveyed doctors had written an advance directive, whereas only about 20% of the public does so. Approximately 90% of the physicians responded that they would not want CPR if they were in a chronic coma, whereas only about 25% of the public gives the same answer.

So why do doctors die differently?

Every day, doctors see the effect of what they call “futile care.” They see patients languishing in the ICU, attached to ventilators, tube feeds, and other devices keeping them alive. On the other hand, many patients only see what is on TV.

A 1996 study found that CPR showed on television was successful 75% of the time and that 65% of the patients went home. On the other hand, a 2010 study of more than 95,000 cases of CPR in Japan found that only 8% of patients survived for more than one month and of those, only about 3% led normal lives post-code. Approximately 3% were in a vegetative state, and about 2% were alive with a “poor” outcome. And a 2010 study looked at terminal patients who did not want CPR but got it anyway. Of the 69 patients studied, eight regained a pulse, but, within 48 hours, all were dead.

Physicians may also make different recommendations for their patients than they would follow themselves. Physicians often feel that failing to save a patient shows weakness and professional inadequacy. This sentiment does not necessarily carry over to saving themselves.

If physicians feel that certain end-of-life and terminal illness treatments are futile, they should be open and clear with their patients. While the ultimate decision belongs to you, the patient, sometimes it is time to say enough is enough. And your physician is in the best place to help you determine when that time is.

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.

Would you want to have cardiopulmonary resuscitation (chest compressions, shocking, intubation) if you are found without blood pressure or pulse? What if you had advanced cancer and were not expected to survive more than months or perhaps a year? Would CPR still be your wish? What if you were on a ventilator (the breathing machine) and doctors could not wean you off after many days? Would you want to be fed by a tube through your abdominal wall into your stomach when you could no longer eat normally?

These detailed answers do not necessarily have to be recorded in the advance directive, but it is wise to have the conversation with your agent and family about these issues.

There is also a new form for people who have complicated, chronic illnesses. It spells out a person’s exact wishes with regard to CPR, intensity of treatment and artificial nutrition. This is called a POLST form, which stands for Physician Orders for Life-Sustaining Treatment. All medical personnel must honor this document and follow your wishes.

We’ll talk more about the POLST form next month. In the meantime, your health care provider can assist you to set up an advance directive and POLST, if appropriate, and answer further questions about completing these forms.

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.

The new study builds off previous research with similar findings by the same group. The earlier research, however, was only conducted with brain cancer patients at one medical center.

For the new study, published Monday in the Journal of Clinical Oncology, the researchers included a wider variety of cancer patients at four medical centers in Massachusetts, New York and Tennessee.

All of the patients who agreed to participate in the study were read a standardized description of CPR. The description also said CPR does not revive most patients with advanced cancer, and the patient would likely be put in the ICU on a ventilator if it worked.

In the group that was only told about CPR, about 52% of the 80 patients said they wouldn’t want to be resuscitated, compared to 79% of the patients who also watched the three-minute video.

Nine out of every ten patients who watched the video also said it was “helpful.”

Dr. Volandes told Reuters Health that the video may reinforce the information patients usually get from their doctors. “People aren’t clinicians. They don’t have clinic experience to understand what this looks like,” he said.

Dr. Susan Gaeta, an assistant professor at The University of Texas MD Anderson Cancer Center in Houston, told Reuters Health she likes the idea of using the videos, but said they need to be part of a bigger conversation.

“What we’re trying to do is to have conversation with patients on what their goals and values are,” said Dr. Gaeta.

She added that the question should not be, “Do you want this?” It should be, “Is this medically appropriate based on your goals and values?”

Dr. Volandes said their collection of 25 videos on various topics, including CPR and intubation, are used by over 30 healthcare systems across the country.

Dr. Gaeta added that her hospital is developing their own videos that incorporate their focus of goals and values.